My Dissertation

About My Dissertation:

I chose the topic: Parental Experiences with Adult Children (18 -22) On the Autistic Spectrum who Attended New York State K-12 Schools because it is a vital subject to bring attention to and is worthy of research. Often, the level of care and expectations are set very low for the most vulnerable of our population and a spotlight needs to be put on this subject if we as a morally obligated society are to ensure that students in the post- secondary category are prepared to acclimate into the community as independently as possible. This dissertation was enlightening in that it brought awareness to the author about much more support is required in order to better prepare students on the autistic spectrum for a positive and productive life. Further, providing a quality of life is not only society’s responsibility but the law. The Individual Education with Disabilities Act needs to serve as the guide to giving these students what they need: a seamless transition from school to work/vocation. Unfortunately, the interviews with parents reveal that expectations are low and without communication between home and school the outcomes are not always optimal.

What I learned from the dissertation process: “It’s only hard until its finished” and truly “The journey of a hundred miles begins with a single step.” I started my thesis several years ago where the mentors were constantly changed and with each subsequent mentor, the guidance was obscure and on several occasions when I got to the finish line, a new mentor would step in and recommend yet more changes and even ask me to scrap my work and come up with a new topic. A challenge. My advice to anyone taking on this valuable endeavor is to accept input and insight from an objective professor who seeks to be your cheerleader, motivator and someone who genuinely wants not only to see you succeed but believes a genuine contribution to the field you are researching is for a higher good. I had a mentor who knew me well and made me believe that I could actually take ownership over my work and make a valid contribution. At one point, Dr. Piotr Beck referred to my drafts as a caterpillar with the potential of becoming a butterfly, thus my logo. After receiving that kind of profound feedback, it propelled me to get single minded and work heart and soul. I have no doubt that with perseverance and focus, this website can be the butterfly it is intended to be as the subject matter and future topics and discussions will deserve nothing less.

Choosing a website form of publication over a journal: This web-based publication allows for growth in that I can maintain my own website, build on it and set goals to achieve and attract a wider audience of readers whereby special education topics and insight can be shared in a thorough and intelligent manner.

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Author: Ziede-Aviles, Gwen Gloria

Title: PARENTAL EXPERIENCES WITH ADULT CHILDREN (18-22) ON THE AUTISTIC SPECTRUM WHO ATTENDED NEW YORK STATE K-12 SCHOOLS

Dissertation Prepared for the Degree of
DOCTOR OF PHILOSOPHY In Special Education

Approved by the Faculty of Blue Marble University July 2016. All rights reserved. This work may not be reproduced in whole or in part by photocopy or other means without the permission of the author.

Cite as: Ziede-Aviles, Gwen Gloria, “PARENTAL EXPERIENCES WITH ADULT CHILDREN (18-22) ON THE AUTISTIC SPECTRUM WHO ATTENDED NEW YORK STATE K-12 SCHOOLS”, Published online August 11, 2016 at: https://gwengloriaaviles.wordpress.com/,
https://gwengloriaaviles.wordpress.com/my-dissertation/

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Full Text of Paper:

Dedication

I dedicate this work to all the adult children diagnosed with an intellectual disability and who suffer the degradation of being marginalized from the “perfect people” of society. A big shame on you to those “perfect people” everywhere who vote against group homes in their community for the most vulnerable of our population and then feign human respect and dignity for the very people they shun. One of my greatest wishes is that a maximumsecurityprison inlieuofagrouphomeforthosedeservingaqualityoflifeisbuilt in every unwelcoming community who voiced their “not in my backyard” position.

Immeasurable gratitude is offered to my mother, Marge Ziede who transformed the quality of life for many children with special needs as a special education teacher, humanitarian and healer and naturally to my father, Jim Ziede whose support, love and respect for her expanded Marge’s labor of love to work her magic over children which in large part served to fulfill this educational pursuit. Heartfelt thankfulness to John Aviles, my husband, who had he not given me 5 more reasons to honor God: Grace, Margaret, Gwen, John and Benjamin (our children), I may never have learned what the two most important days in my life were: the day I was born and the day I found out what would be my life’s purpose. It is refreshing to live with someone who actually lives the words in all areas of his life: (personal, professional, societal): “Whatsoever you do for the least of my brother that you do unto me….”

More thanks to the many parents/foster parents/guardians and caregivers who took a leap of faith with entrusting their most valuable asset with me: their children. You are my nearest and dearest friends. Angels straight out of the movie: It’s a Wonderful Life and a constant reminder of Clarence’s words: “No man is a failure who has friends.” In that same movie it was George who said it best “Strange, isn’t it? Each man’s life touches so many other lives. When he isn’t around he leaves an awful hole, doesn’t he?” I miss those individual families I worked with in the past because they were my greatest teachers who taught me how to effectively teach in the present with heart and soul. Finally, to all the families who made this study possible, I dedicate my dreams for a utopic world without stigma.

Abstract

The focus of this research is in the area of autism as a life-long disability that can influence speech and language, social skills, emotional and behavioral development, the ability to learn skills, maintain employment, and successfully integrate in an adult community after graduation from kindergarten through Grade 12 schools. Such a study is important in order to determine whether students with autism who graduate from school have been prepared to assume an independent and productive life to the fullest extent possible. The research approach adopted in this dissertation includes a qualitative phenomenological study used to explore the perceptions of parents of children classified with autism as it pertains to the barriers they faced with educators in an effort to contribute to their child’s individual education plan; the usefulness of the pedagogical structure that was implemented for teaching vocational skills and maintaining a job; and to the extent that the grades K-12 experience prepared them for community integration post-high school. The main conclusions drawn from this study indicated that a vital step to achieving academic success for students is the establishment of a strong rapport between parents and school-based teams. Enrolling students with autism in inclusion classes serves as a strategy for developing social and academic skills and seemingly is beneficial to the quality of life for this population. The findings of the research indicate that vocational skills development and teaching skills for meaningful employment are viable strategies for improving the lives of students with autism. Community integration is mired due to a lack of funding, a lack of parental involvement, service coordination, hiring and retention of staff and overall ill preparation, all of which restricts positive strategies from improving the lives of individuals with autism. This dissertation makes the following recommendations:

Establish mutual expectations between parents and teachers/support staff; attain agreement in teaching methods between parents and teachers/support staff; emphasizing the importance of parental input by teachers/leadership/support staff and remove barriers to collaboration between parents, students, and teachers/support staff in order for students with disabilities (autism) to enjoy a quality of life.

I. Purpose of the Study. The general purpose of the proposed qualitative study with a phenomenological design will be to explore the perceptions, attitudes, and experiences of parents of young adults between the ages of 18 and 22 who have graduated from the K-12 system of education in New York State under the purview of the New York Education Department and the effect the teaching methods of the system has had on their children who were classified with autism. It is hypothesized that the perceptions, attitudes, and experiences of parents of young adults with autism between the ages of 18 and 22 who have graduated from the K-12 system of education in New York State under the purview of the New York Education Department will identify:

Common collaboration barriers with school officials regarding individual education plans.
Common academic and behavioral strategies that set their child up for societal failure, regression, or success after graduation.
Common themes related to readiness into the adult world (i.e., job preparation and community integration).
Common themes with respect to the efficacy of the teaching methods of educators teaching vocational skills and job readiness.
Common themes with respect to the efficacy of the teaching methods of educators teaching their children how to successfully integrate into the community.

II. Introduction. The American Psychiatric Association (APA) refers to autism as a neuro-developmental disorder (APA, 2013). Researchers describe autism as a life-long disabilitythatcaninfluence speechandlanguage,socialskills,emotionalandbehavioral development, the ability to learn skills and maintain employment and successfully integrate in an adult community after graduation from a K-12 school (APA, 2013; Ashburner, Ziviani, & Rodgers, 2010; Brock, Freuoer, Baranek, Watson, Poe, & Sobalino, 2012). The New York Education Department, which oversees all K-12 institutions in the state, is expected to comply withtheFederalmandate stipulatingthatallchildrenwithautismhavethepreferenceofbeing enrolled in the least restrictive environment (LRE), which is an inclusion classroom or general education setting (McLeskey, Landers, Williamson, & Hoppey, 2012). If school professionals deem that a child is not receiving an educational benefit from an inclusion or general education classroom;aseparate classconducivetotheirlearningneedsisassigned(McLeskeyetal., 2012).

In all grades K-12 containing children with autism, any disconnect between the parents and the teacher hinders parental contributions that might otherwise strengthen educational outcomes for the students (Carter, Cooney, Walter, & Moss, 2012). Students with autism suffer academically and emotionally when the teacher/student relationship is void of a healthy rapport (Ashburner, Ziviani, & Rodger, 2010). Strategies for improving academic accomplishment and behavioral appropriateness suffer from a lack of communication that creates barriers to learning (Armstrong, 2012; Bacon & Causton-Theoharis, 2013). Finding appropriate vocational tasks for a particular child and teaching that child how to maintain employment are critical life skills graduation (Ginsburg & Rapp, 2013; Hetherington et al., 2010). Finally, students with autism

who graduate from school are at risk of being ill prepared to assume an independent, productive life in the absence of instruction on how to integrate socially in their surroundings (Ginsburg & Rapp, 2013; Hetherington et al., 2010).

The focus of the proposed qualitative phenomenological study will be to explore the perceptions of parents of children classified with autism as it pertains to: (a) the barriers they
faced with educators in an effort to contribute to their child’s individual education plan; (b) what school-practiced strategies worked academically and behaviorally to prepare their children for adulthood; (c) the usefulness of the pedagogical structure that was implemented for teaching vocational skills and maintaining a job; and (d) to the extent that the grades K-12 experience prepared them for community integration post-high school. The following subsections contain a statement of the problem, a recitation of the research questions that will determine the methodology of the study, and a definition of terms section intended to clarify the specific meanings of the terminology used in this concept paper.
Statement of the Problem. Trainor (2012) contended that parents are in a position to provide strategies for educational planning based on their experience with their child if they can make a positive connection with school officials. Trainor argued that teachers often have low expectations for students who are on the autistic spectrum and perceive the students as low achieving and possessing serious emotional disorders. A comprehensive search of the empirical literature revealed an incomplete and unbalanced body of knowledge about: (a) the barriers that parents and educators face when communicating about individual education plans for children identified with autism; (b) the appropriateness of strategies that are in place for ensuring academic success and emotional stability; and (c) the manner in which children with autism taught appropriate

skills for surviving in an adult world after graduation as it pertains to maintaining employment and integrating successfully in their community. Specifically, there has not been any empirical studies found that contributes to the body of knowledge about these five factors as it relates to studentswithautismwhograduatedfromtheStateofNewYorkeducationsystem. Given Trainor’s insight regarding teachers who often misinterpret the true strengths of their students with autism, it becomes clear that parents are the advocates and are integral to fostering meaningful and valuable outcomes for their children. Shifrer (2013) indicated that preconceived ideas about the learning capabilities of students with autism might set the stage for academic and behavioral failure for students. Further, when both parents and teachers lower their expectations and standards for student success, students with autism may not pursue post-secondary education, learn a vocation, maintain employment or integrate successfully in their community as if they were otherwise prepared (Chiang, Cheung, Hickson, Xiang, & Tsai, 2012).

Background of the Study. A qualitative phenomenological research study by Balan (2010) investigated the construct of trust among parents involved in the Individualized Educational Planning(IEP)for childrenwithAutismSpectrumDisorder(ASD)inBritishColumbiaCanada. The theoretical framework for the study was based on the premise that active parental involvement intheIEP processisdirectlyrelatedtotheleveloftrust.Inaddition,increasedparental involvement was positively correlated with student success. Consequently, 12 relevant themes emergedfromthe eightparticipantsinterviewed.Amongthethemes,emphasiswasplacedon communication, respect, effective school leadership, and consistency as building blocks for trust. Moreover,trust developsovertimeandthedescriptionoftrustwasuniversallydefinedas“having thebest interestsofthechildrenatheart”(Balan,2010,p.132).

Based on the findings of Balan’s (2010) study, K-12 school leaders can facilitate trust among parents of children with ASD and optimize IEP outcomes and student academic success. The following recommendations include:

Establishing mutual expectations between parents and teachers/support staff.
Attaining agreement in teaching methods between parents and teachers/support staff.
Emphasizing the importance of parental input by teachers/leadership/support staff.
Removing barriers to collaboration between parents, students, and teachers/supportstaff.

The primary limitation of the study findings was because not all grade levels were

equitably represented (i.e., grade one, grade six, and high school) by participants of the study. Therefore, the outcomes and recommendations cannot be validly applied to all K-12 grade levels. The participant demographic differences (e.g., marital status, socioeconomic status, ethnicity, education level, etc.) were not evaluated by the researcher. In addition, the severity of ASD was not evaluated by the researcher. Despite these limitations, the findings and recommendations from this study should improve parental involvement, which is documented as minimal or sub-optimal by various researchers, in the IEP process.

A qualitative case study by Meade (2011) investigated the perspectives of four (4) parents and four (4) teachers related to parental involvement in the lives of students with Autism in a southeastern rural U.S. school district. The two main objectives of the study were to “determine the similarities and differences between parent and teacher perspectives of proactive parental involvement” and “determine the factors that influence parental involvement” (Meade, 2011, p. 7). The theoretical framework for the study was based on foundation that proactive parental involvement improves ASD student learning. However, if there is any incongruence

between parent and teacher perspectives of what constitutes proactive parental involvement, then ASD student learning outcomes are not fully realized.

The findings of Meade’s (2011) study proffered the following factors increase proactive parental involvement:

Having adequate financial and support resources.
Having sufficient advocacy skills.

Conversely, the following factors decreased proactive parental involvement:

Having a lack of knowledge about how to reinforce skills learned at school.
Having negative and preconceived ideas of involvement impact on student learningoutcomes.

The primary limitation reported by Meade (2011) was concerning limited generalizability

based on the small sample size and demographic stratification by age, gender, income, occupation, experience, and education). However, Meade strongly advocated for parents and teachers to interact and collaborate more in order to minimize the negative experiences. Specifically, teachers need to listen more to parents sharing information about their child(ren), and provide parents new and applicable information in IEP meetings. Otherwise, proactive parental involvement will continue to be subpar.

Nickels (2010) conducted qualitative case study research that compared and contrasted the perceptions of eight (8) special education teachers, six (6) general education teachers, and seven (7) parents of children with ASD at a Northeast Tennessee public school. There were three (3) main objectives of the study that included:

To determine what interventions were most effective.
To identify common barriers or challenges.

3. To characterize the relationships between parents and teachers.

The resultant educational interventions identified as most effective for children with ASD included “a structured learning environment; adult-mediated and peer-mediated interventions for social and communication skills; inclusion with a balance of direct services; support staff to facilitate inclusion; a functional approach to problem behaviors; alternative and augmentative communication interventions; and sensory-motor interventions” (Nickels, 2010, p. 280). Barriers identified included “lack of training and knowledge; lack of time; challenges caused by characteristics of ASD; problematic teacher attitudes; problematic parent attitudes; transition issues; and need for additional services” (p. 293). The relationship between parents and teachers was characterized as sub-optimal. However, improvement in the relationship could be based on better and continuous communication, collaboration/teamwork, and additional support.

According to Nickels (2010), all three participant groups agreed that on-going communication between parents and teachers was more highly valued than IEP Team meetings or the IEP itself. The area where general and special education teachers differed was in respect to their divergent needs. For example, general education teachers valued feedback, coaching and support from special education teachers. Conversely, special education teachers valued empathy and willingness to differentiate instruction for students with ASD from general education teachers. Knowledge of where parents, special education teachers, and general education teachers are in agreement provides a foundation from which to optimize ASD student outcomes. Rationale and Significance. Balan (2010), Nickels (2010), and Meade (2011) conducted qualitativeresearchthat involvedparentsofchildrenwithASD.Theirfindingsprovided valuable information to help K- 12 schools achieve better learning outcomes and IEP related processes. All three authors strongly

advocated for future research to continue within the vein of evaluating similar constructs in different schools and geographic locations in order to strengthen convergent generalizability of findings and recommendations. One area of future research specifically emphasized was regarding ASD student pedagogical methods designed to improve vocational/employment skills and community integration after high school graduation. Obtaining meaningful information about the potential for securing a stronger educational benefit through the development of a solid pedagogical structure for children on the autistic spectrum from the parent’s perspective is a topic that can improve outcomes for these students if implemented on the classroom level.

I. Review of the Literature. The literature search indicated that a vital step to achieving academic success for students is the establishment of a strong rapport between parents and school-based teams. A shared partnership between parents and school officials empowers parents to support the academic and social development of their children (Tran, 2014). Enrolling students with autism in inclusion classes serves as a strategy for developing social and academic skillsandseeminglyisbeneficial tothequalityoflifeforthispopulation(Crosland&Dunlap, 2012). Vocational skills development and teaching skills for meaningful employment are viable strategies for improving the lives of students with autism and is necessary for positive outcomes to be achieved (Hendricks, 2010). Community integration is mired due to a lack of funding, a lack of parental involvement, service coordination, hiring and retention of staff and overall ill preparation,allof whichrestrictspositivestrategiesfromimprovingthelivesofindividualswith autism (Gerhardt & Lainer, 2011).

A comprehensive search of the empirical literature revealed an incomplete and unbalanced body of knowledge about (a) the barriers that parents and educators face when

communicating about individual education plans for children classified with autism, (b) the appropriateness of strategies that are in place for ensuring academic success and emotional stability, (c) the manner in children with autism are taught appropriate skills for surviving in an adult world after graduation as it pertains to (d) maintaining employment and (e) integrating in their community. Specifically, no empirical study was found that contributes to the body of knowledge about these five factors as it relates to students with autism who graduated from the State of New York education system.

During the past 50 years in education, extensive changes in laws have occurred (DeBray- Pelot & McGuinn, 2009). Mawdsley & Osborne, (2013) asserted that one of the most significant changes for special educators was the focus on promoting student access to an education that meetstheirlearningneedsthroughafreeandappropriateeducation(FAPE). Whilemany different factors are used to determine the effectiveness of an appropriate education, the focus of the literature review will be on collaboration or the lack of it, between parents and school professionals as to what constitutes an appropriate education for students with autism under the FAPE mandate (Young, Rowen, Pardew, Sanford, Falco, & Reinmuth, 2011). Additionally, the focus will include the effects of the collaboration or lack of it on the overall development of students who have a classification/diagnosis of autism. Lareau and Muñoz (2012) maintained that despite parental efforts to provide meaningful input to school professionals, parents frequently are not treated as full partners in their child’s education and their input is not always considered useful.

The following review of the literature contains discussions beginning with a summary of the subject of autism, followed by discussions of the five constructs of the proposed study; barriers to communication, strategies to ensure academic success, strategies to modify behavior,

the pedagogical structure implemented to teach vocational skills and maintain a job, and the extent to which the grades K-12 experience prepared students with autism for integration within the community post-graduation.
Comprehensive Search Strategy. The literature search was comprised of a comprehensive search of the major education publications and published dissertations. Databases that were accessed from the ACM Digital Library, the International Journal on Very Large Data Bases (VLDB Journal), Annual Reviews, the Chronicle of Higher Education, Alexander Street Press, Academic Video Online, Britannica Academic, Counseling and Therapy in Video, Credo- Reference, Special Education in Encyclopedia of Applied Psychology, Ebrary, EBSCOhost, JournalofVocationalTraining, JournalofAutism,EdITLib,ERIC,ETS,FilmsonDemand- Digital Educational Video, Gale Academic OneFile, the Directory of Open Access Journals, and ProQuest. The Google Advanced Scholar search engine was a source for Internet searches importanttothisstudyas wellastheSageJournalsandDissertationsfromWaldenUniversity, University of Phoenix.

Bibliographic and reference listings were accessed from appropriate titles discovered during the review process. This review process produced scholarly articles published within the last 5 years pertaining to the perceptions of parents with adult children diagnosed with autism and how their experiences set the course for developing professional relationships in an effort to maximizetheirchildren’spotentialtothemaximumextentpossible. Searchtermswereautism, families’ perspective, parents’ perceptions, schools serving special needs students, people with disabilities, vocational training, job readiness, employment, special education, methodology, pedagogy, mainstreaming, inclusion classes, social skills, behavioral challenges, positive

supports, transition plans, individual education plans, state education department statistics, and lived experience.
Overview of Autism and Education. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition [DSM-V] American Psychiatric Association (APA, 2013) refers to autism as a neuro-developmental disorder. The prevalence rate for individuals diagnosed with autism in the US is one in every 88 people (Dawson, 2013). The increase in diagnosis can be attributed to new diagnostic procedures and autism awareness (Centers for Disease Control [CDC], 2012).

Defining autism. In the 1920s, autism was termed the Kanner Syndrome, named after Leo Kanner, known as the father of psychiatry (Blake & Berner, 2014). The term autism was derived from the Greek term auto, which means self (Wong & Chu, 2010). Kanner opened the first psychiatricclinicintheUSatJohnsHopkinsHospital,HarrietLaneHomeforInvalid Children. Kanner first diagnosed autism as childhood schizophrenia. It would take more than 30 years of research to discover that the characteristics of certain patients had two things in common: a desire to be alone, and an obsession to preserve sameness (King & Lord, 2011).

Kanner used the term autism in 1943 to describe children struggling with socialization and communication development, which he misdiagnosed as schizophrenia. The symptoms/ characteristics of autism are described in the current literature as the inability of a person to communicate verbally, the presence of high anxiety in unfamiliar settings, a lack of relatedness to other people, the absence of imagination and sense of humor, and repetitive behaviors (APA, 2013; Schriber, Robins, & Solomon, 2014).

A child with autism can be psychologically and physically demanding on parents, and those parents need to be supported (Armstrong, 2012). Armstrong studied the perceptions of

parents in relationship to the degree of support they received from government officials and schoolprofessionals. Armstrongreportedthattheparentsofchildrenwithsevereautism,in fact, receive minimal support. The lack of financial resources, assistance, and information available and offered to parents resulted in parents’ feeling anxious, isolated, and guilt-ridden (Armstrong, 2012).

The DSM-V (2013), defines autism as a biological/neurological condition that is typically diagnosed before Age 3. Observed traits include restricted and repetitive behaviors combined with limitedinterestsandactivities(Holmboeetal.,2012). Often,autismisreferredtoasaspectrum disorder based on individuals demonstrating a wide range of strengths and weaknesses particularly in the area of speech and language acquisition (Losh & Gordon, 2014). The autism spectruminvolvesvaryingcognitivelevels. Aperson’slocationonthespectrumwithrespectto their intellectual proficiency determines the cognitive levels (Charman, Jones, Pickles, Simonoff, Baird & Happé, 2011). Subgroups of autism include Asperger’s syndrome, pervasive developmental disorder, Rett’s syndrome, and childhood disintegrative disorder; thus, children diagnosed with autism demonstrate varying degrees of skill sets (Woolfenden, Sarkozy, Ridley, & Williams, 2012).

Brock, Freuler, Baranek, Watson, Poe, and Sabatino (2012) posited a sensory processing deficit exists within individuals with autism, including sensitivity to light and sound. Further, individuals diagnosed with autism appear to have an aversion to particular food textures and avoid social touching and eye contact. Babies have exhibited predictors of autism including lack of babbling, making sounds, or nonverbal communication such as pointing by one year of age and the absence of single word utterances by 2 years of age. Other characteristics include a young child who does not respond to his or her name, does not use

toys appropriately, incapable of demonstrating imaginative play skills, and lacks expressive and/or receptive language skills (Brock et al., 2012).

Individuals with autism experience the world very differently than their typically developing peers (Mayes et al., 2013). Behaviors and situations that are acceptable to most people can be intolerable for an individual on the autistic spectrum due to their need for sameness and overall inflexibility to changes in their environment (Gomot & Wicker, 2012). For instance, transitioning from one activity to the next or any change in routine can cause great distress. People with autism may not always welcome a demand placed on them (Mayes et al., 2013).
Education and students with autism. The goal of a K-12 education is to maximize the potential of students (Keenan, Dillenburger, Doherty, Byrne, & Gallagher, 2010). Keenan et al. argued that parental input regarding the education of a child with autism is generally

unwelcome by educators. Separate from special education professionals, seeking the perceptions of parents who know their children best would be advantageous to improving educational outcomes, as parental input helps to ensure that the appropriate modifications and differentiation of instruction is implemented (Trainor, 2012).

The developers of the Individuals with Disabilities Education Improvement Act [IDEIA] (IDEIA, 2004) mandated that the members of the individual education plan (IEP) team accept parental involvement on behalf of their children diagnosed with autism and other disabilities. Based on the language within the IDEIA, developers suggest parents are considered equal partners with other school-team members who make critical educational decisions for students with disabilities, including specific supports and needs required to maximize student potential (Bacon & Causton-Theoharis, 2013). However, school personnel have reported that parents do

not always participate at IEP meetings (Council of Exceptional Children, 2010). School personnel concluded that parents were disinterested without considering the perception that many parents may feel intimidated by the meeting process resulting in a lack of critical parental insight that could prove to increase educational benefit (Council of Exceptional Children, 2010).

Notably, many parents are resilient to the challenges of raising a child with autism and were the first observers of their child’s deficits. Many parents have closely scrutinized their child’s struggles long before the child was even diagnosed, making them more likely to be in a stronger position to offer valuable insight on their child’s special needs (Saint-Georges et al., 2011). Subsequently, parental input provides valuable information to staff that deliver services on the school level (Plumb, 2011). Hetherington et al. (2010) maintained that parental perspectives are diminished when parents are restricted from contributing information (i.e., education, transitions, behavior plans, and other possible assessments) as an equal partner on par withschoolprofessionals. Areasofparentaldissatisfactionincludethelackofcommunication with school personnel, counter-productive IEP meetings, and conflict over what constitutes an educational benefit for students (Mueller & Buckley, 2014).
Family life cycle. Family life cycle stages pertain to the beginning or early period in the development of the family, preservation of the family, ongoing changes based on various life events, and eventually the conclusion and/or ending (Joronen & Rantanen, 2014). It should be examined how families living with a child with autism and evolve through a challenging family lifecycle can serve to provide necessary information to drive policy and best practice (Gardiner & Iarocci, 2012). The proposed study is embedded within the theoretical framework of the family life cycle stages as it affects home-school partnerships.

Bellini, Henry, and Pratt (2011) concurred that effective training for school personnel is critical when educating students with autism. Further, Bellini et al. (2011) reported that while many professional development workshops exist, it is unclear which ones are most effective in providing necessary education. Parents are experts with respect to understanding the needs of their child with autism and have been strong voices in advocating and contributing to autism awareness (Langan, 2011). The perception is that the degree of student’s success and enriched learning is attributed in part to active parental involvement (Avvisati, Besbas, & Guyon, 2011). However, many teachers continue to find it challenging to form an alliance with parents based on their own lack of preparation and training (Sewell, 2012). One of the many goals that school officials maintain is to invest resources into encouraging parent involvement (Walker, Shenker, & Hoover-Dempsey, 2010).

The No Child Left Behind Act of 2001 was created as a federal policy with the aim of bridging the home and school partnership to close the achievement gap and maximize learning (Baquedano-López, Alexander, & Hernandez, 2013). It is essential to explore the understanding and implementation of parental input to create a collaborative parent/teacher/student relationship within diverse populations, specifically, students classified with autism (Staples & Diliberto, 2010). Familyhistoryiscriticaltounderstandingthecomplexityofthewholeperson(Couryet al., 2014).

The Individual with Disabilities Education Act passed as public law (PL 94-142) in 1975 and developers clearly mandated that parents should be fully included in the IEP process. However, parents reported that they continue to experience unequal participation (Rehm, Fisher, Fuentes-Afflick, & Chesla, 2013). Frequent barriers included parents being restricted from

offering input; misunderstandings based on a lack of communication, and a general “us” and “them” mentality (Wellner, 2012).

The research dictates that parents and school professionals have separate agendas, which result in conflict and often adversarial relationships (Lareau & Muñoz, 2013). Often, combative home-school connections lead to due process hearings that parents often initiate with the intent to ensure that the appropriate services are in place for their child; however, school district officials often prevail over parental demands and expectations (Mueller & Carranza, 2011).

The relationship between parents and school teams require professionalism and mutual respect if students are to progress (Saleh, 2014). Mueller & Buckley (2014) expressed that the past decade has seen a decrease in due process hearings and noted that these forums for resolution are costly and jeopardize opportunities for a productive home-school relationship. Mueller & Carranza (2011) further suggested that conflict resolution practices are important among the stakeholders and IDEA regulations serve as a catalyst for a positive direction towards student achievement.

Research recognizes parental involvement as being critical to the learning process for children (Fan & Williams, 2010), however, school officials often find it difficult to build and sustain relationships with parents thereby creating a barrier for student growth). It is recognized that since parents have a primary influence over their child’s academic, social, and emotional growth, it follows that involved parents foster success and are valuable assets to the school community (Parks & Polotzola, 2012).
Strategies: Academic Success. The findings of McCurdy and Cole (2014) suggested that a valuable strategy for many students with autism is to allow them to be educated within the same classroom as their typical developing peers. It is thought that students with autism will benefit from role models whom they can emulate. Additionally, positive interactions with students without disabilitiescanbe strategicwithsocialskillsdevelopmentandself-esteemissues(McCurdy&

Cole, 2014). Students with autism may not flourish in general education classrooms due to severe behaviors (i.e., low tolerance for noise, bright lights and other distractions) that would warrant a special education or separate classroom. Overall, peer support has been an advantageous strategy in advancing the education of students with autism and has shown these students to improve their attention and focus on academic related tasks (McCurdy & Cole, 2014).

Strategies: Behavioral Success. Crosland and Dunlap (2012) contended that many students with autism who are assigned to general education classes, also referred to as inclusion classes, as opposed to special education classes, sustain improved behaviors with additional supports. Further, the researchers reviewed inclusion as a behavior modification technique that offers positive behavior support that produces advancement in behavior and academics. The research reveals that asuccessful strategyforautismisforeducatorstoensurethatastudent’sbehaviorsupportplan matchestheir unique,specialneeds(Crosland&Dunlap,2012).

Vocational Skills and Jobs. A positive strategy that people with autism benefit from is the learning of a useful vocational skill and the acquisition of a job. People with autism can and do work with the proper supports and training; however, the outcomes for employment are unsatisfactory (Hendricks, 2010). The strategy to assist in helping people with autism achieve vocationalskillsandenjoy gainfulemploymentistomatchtheirstrengthsandintereststo activities where they have the most opportunity for success. Employment should be enjoyable and productive for this population and social skills and interpersonal skills training will attribute to a progressivework atmosphere(Hendricks,2010).

Community Integration. Gerhardt and Lainer (2011) researched community integration and recognized it to be an excellent strategy for people with autism to become productive and happy membersofsociety. However,therealityisthatpeoplewithautismandtheirparentsfaceabudget crisisintheadult servicessystemthatcontributestoalackoftrainingandpreparation,andthis fails to prepare a vulnerable population for employment and the ability to utilize services within their community. Community integration increases quality of life as it applies to social and

emotional stability for individuals with autism (García‐Villamisar, & Dattilo, 2010). The authors illustrate that when opportunities are presented to enjoy leisure and recreational activities in their community, a sense of well-being is established.
I. Selection of the Research Method. Muijs (2004) identified three research methods: qualitative, quantitative, and mixed- methods. The quantitative method was deemed inappropriate for the proposed study with the rationale being that the objective of the study is to explore the in-depth lived experiences of the participants, whereas, a quantitative methodology only provides numerical answersthatcanbe analyzedstatisticallyposingthelossoftheopportunitytoexploreissuesfrom many perspectives. The ability of a quantitative approach to reduce a problem into smaller testable hypothesis and research questions assists researchers to focus on the problem by developing numericmeasuresofobservationsthatcanbeanalyzed,whichwouldnotservethe purpose of the present study. The third alternative that was considered and rejected was the mixed-method research that would require, in part, a quantitative assessment that would not be appropriatefor thepurposeoftheproposedstudy.

Yin (2011) identified the use of a qualitative study as an opportunity to explore the lives
of people through their perspective, which is the purpose of the proposed study. Yin explained that the qualitative method is based on observations of the context in which people live their
lives. Aqualitativestudyrequiresextensiveinterviewswithparticipants,whichisanappropriate method given the purpose of the present proposed study. Qualitative studies can be designed through a number of approaches such as storytelling, case study investigation, grounded theory, narrative, action research, and phenomenology. The design for the proposed study deemed appropriate was phenomenology.
Qualitative Methodology. A qualitative methodology was carefully chosen because in-depth data from multiple perspectives can be retrieved through the implementation of an interview protocol (Denzin & Lincoln, 2005). A qualitative method is appropriate for research problems where the variables areunknownasintheproposedstudy.Thedatafromthoseinterviewedwillbe

compared and analyzed. The study will focus through the lens of a socially constructed knowledge researcher (Neuman, 2005). Neuman asserted that socially constructed knowledge researchers can identify subjective meanings of participant responses utilizing interviews and accept a complexity of views.

Phenomenological Design. Phenomenology, as discussed in Wilding and Whiteford (2005), “is a method of inquiry that offers a way to systematically study and learn about phenomena that are typically difficult to observe or measure.” In considering the complexity of human experiences, the phenomenological process acquires information through narratives from participants. Phenomenology methods focus on and attempt to understand the phenomena (Wilding & Whiteford, 2005). Phenomenological research describes participants’ lived experiences and provides enhanced insight into the individual’s perception and the meaning participants attribute to the phenomenon (Jurema, Pimental, Cordeiro, & Nepomucerio, 2006).

Quantitative and mixed methodologies can be used to identify potential solutions for research problems, but neither method would provide appropriate insight into the perceptions, attitudes, and lived experiences of parents with adult children with autism who graduated from NewYorkStateK-12schools. Aphenomenologicaldesignprovidesanunderstandingofa phenomenon at the lived experience level (Yin, 2011). A phenomenological design can provide profound insight into the lived experiences of participants, which is the object of this study (Coombes & Wratten, 2007; Giles, 2009). The data in qualitative research, Neuman (2011) contended, “is highly meaningful and is a concrete aspect of the world being studied, because the researcher extracts meaning from behaviors studied and from the viewpoints of participants.”

Neuman (2011) reported, “Qualitative researchers are more concerned about issues of richness, texture, and the feeling of raw data because their inductive approach emphasizes developing insight and generalizations out of the data collected” which is the definition of a phenomenologicalstudy. Datacollectedinaqualitativestudyprovidesinsightor“rich informationaboutthesocialprocessesinspecificsettings”(Neuman2011). Face-to-face

interviews enhance the researcher’s ability to cover complex issues (Jobber, 1991; Patton, 2002; Singleton & Straits in Gubrium & Holstein, 2002). Singleton and Straits determined that face-to- face surveys (a) allow a maximum degree of probing, (b) yield a higher and more valid response rate than interviews conducted through virtual mediums, (c) provide flexibility, and (d) facilitate

clarificationofquestionsandterminology. Face-to-faceinterviewsareusefulwhenasignificant amount of information is required. Questions can develop internal to the interview and can become complex, but at the same time reveal information critical to understanding the phenomenon. Thephenomenonunderstudyiscomprisedofthetotalityoftheexperiencesof parents with children identified with autism who graduated from New York State K-12 schools and the efficacy of the pedagogy to which their children were exposed.

Participants. There were 3,074,000 students enrolled in K-12 schools in the State of New York in 2012 (New York Education Department, 2012). Using Dawson’s (2013) formula of 1 child in every88 childrenrevealingcharacteristicsofautism,thereare349,318studentsontheautism spectrum in the State of New York necessitating a full range of successful practices to prepare them for adult life after graduation. All schools are expected to manage their challenged students in accordance with the New York Education Department guidelines; thus, the results of the proposed study will be generalizable to every school in the state. Many parents throughout New York State belong to one of several organizations that serve to advocate for children with autism. For instance, the Association for the Help of Retarded Children, Autism Speaks, and Parent Cafe are organizations that the parents will be pooled from to participate in this study and the databases oftheserespectiveorganizationswillbeusedtopurposivelyselecttheparentsof15 studentswho have graduated from a New York, K-12 school. Selection criteria will be parents, either single or married, whose children are between the ages of 18 and 22 and were classified with autism on theirIndividualEducationPlan(IEP)whentheywereenrolledinschoolasafull- timestudent. Due to the databases from which the participants will be selected is statewide; results will be generalizable to the educational experience of all students with autism who were in K-12 schools in

the State of New York. Results may also pertain to similar populations nationwide.
Sampling. The sampling is categorized as non-probability purposive by Yin (2011). Because there are specific inclusion criteria specified above, the first 15 parents who meet criteria and agree to participate will comprise the sample for this study. The researcher does not propose to pre-screen participantsashavingpositive,negative,orneutralexperienceswiththeiradultchild’sIEP events. While this is a limitation of the study results and generalizability, it is consistent with qualitative phenomenological research (Yin, 2011). Despite this limitation, the researcher will delineate positive, negative, and neutral experiences in qualitative themes based on interview analysis. Procedures. The study will be conducted using the following approach: permission to use human subjects will be obtained from Blue Marble University pursuant to the U.S. Federal Government Department of Health and Human Services (2009) regulation 45 CFR. The regulation states, “The probability and magnitude of harm or discomfort anticipated in the research should not be greater inandofthemselvesthananyordinarilyencounteredindailylifeorduringthe performanceof routinephysicalorpsychologicalexaminationsortests”(para.§46.10).The proposedstudywill meet compliance requirements.

The purposively chosen participants will be sent a letter and consent form (Appendix A) inviting them to participate in the study. From those who respond positively, 15 parents, either single or married, with children who match the selection criteria and distributed geographically as widely as possible throughout the state will be chosen to participate in the study.

Appointments will be organized with parents at a time and place convenient to their schedule. Theprocedureandconditionsofthestudywillbereviewedwiththeparentsanda signedconsentformobtained. ADemographicSurveywillbeadministeredorally(Appendix B). Data from the demographic survey will be used to develop a picture of the parents to orient the reader to the circumstances of the participants. Finally, the Interview Protocol (Appendix C) will be orally administered. The Interview Protocol follows the research questions in format. It is a semi-structured protocol with open-ended questions. Interviews will last 60 to 90 minutes

and will be audio recorded. All interviews will be based on the same interview questions for consistency, although participants will be permitted to include observations outside the direct questions in accordance to their perceptions.

Merriam (1998) contended the interviewer must be one with a tolerance for ambiguity, possess an investigative nature, have sensitivity to personal prejudices, be a good communicator, and have some knowledge of the subject matter under study. As a practicing educator, the researcher has extensive experience with the challenges and high expectations of teaching studentswithautism. ThedegreedresearcherofthisproposedstudymaintainsNewYorkState Education professional licenses in the general education and special education fields and meets the highly qualified teacher provision under the No Child Left Behind Act (NCLB) of 2001. The researcher has been in practice for 15 years and is competent to probe interviewees about their experiences.

Data collection will consist of engaging in an in-depth conversational interview with each participant. The conversational approach as a research method (Stabell & Nåden, 2006) indicates the researcher’s respect towards the participant’s lived experiences and honors their contribution to the study. Wilding and Whiteford (2005) established the necessity for the

researcher to hear the initial stories of the subjects and collect portrayals of the phenomenon that intently resembles how the phenomenon was perceived during the period it transpired.

The interviews will be conducted in an environment in which the participants feel comfortable,onethatensuresprivacyandisconducivetoatrustingrelationship. Suchan environment encourages individuals to disclose information honestly and to the best of their abilities (Combers & Wratten, 2007). An open interview style, as discussed in Stabell and Nåden (2006), “will allow participants to speak freely about their views, hence, ensuring richness of data.” Listening carefully is essential for data to acquire meaning from dialogue between the interviewer and the participant (Jurema et al., 2006). Interviews will be audio recorded and subsequently transcribed to ensure accuracy of the resulting data (Wilding & Whiteford, 2005;

Jurema et al., 2006). The data collection process will include observation of the participants and the environment. Detailed notes will be taken to assist with interpretation of the full data. Instrumentation: Expert Panel Review. On February 23, 2015, three experts in the field of Educational Leadership with doctoral level academic credentials and at least 10 years of professional experience were asked to rate the proposed interview questions on a scale of 0 = Not at all related to the research question, to 10= Perfect relationship to the research question; and makesuggestionsforimprovementifthe ratingwasbelowa7.Editsweremadetotheinterview questions as applicable and the final version of interview questions is located in Appendix G.

The original list of interview questions was 20. Feedback from reviewers indicated the need for Socratic contingencies to ensure in-depth participant responses. Examples of Socratic follow-up queries (e.g., can you tell me more about…; how did that make you feel; why do you think that is; can you explain a bit more; why do you think I asked that question; etc.) will be

initiated by the researcher if initial participant responses are “I don’t know”, “yes”, “no”, or other singular responses. In addition, there were several questions that needed revision and separation into singular, but related topics (i.e., sub-questions). The resultant list of interview questions after expert panel review was 32 and all questions received a post-revision average rating of 7.0 or higher.

Assumptions and Limitations. It will be assumed that the participants of the study recall their experiencesclearlydespite thetimeframerestrictionsthatrequireadultchildrenwithAutismto havegraduatedK-12New Yorkstateschools.Itisassumedthattheparticipantswillanswer truthfully.

One of the main limitations of the study outcomes is related to the type of study and limited ability to generalize conclusions outside of the cohort of participants with similar experiences. Since the adult children would have attended school between 1993 and 2015, another limitation has to do with changes made in the K-12 school system before and after the 2001 the passage of NCLB, as this law had significant impact on various teaching methods. No

attempt to delineate pre and post-NCLB experiences will be made by the researcher as this is outside the scope of the study.
Summary. Understanding the conditions by which accurate knowledge is obtained from experiences is the focus of the phenomenological approach (Giorgi, 2002). Further, conducting an appropriate phenomenological approach requires the interviewer to set aside personal bias or experiences that may influence the interpretation of data (Giorgi, 2002). These considerations will be paramount as the study unfolds.

I. Results and Analysis. The purpose of the study was to explore the perceptions, attitudes, and experiences of parents of young adults between the ages of 18 and 22 who graduated from the K- 12 system of education in New York State under the purview of the New York Education Department. A total of 15 participants who met study inclusion criteria agreed to participate after reading informed consent documentation. Interviews were tape recorded, transcribed into Word documents, sent back to the interviewee to review for accuracy (i.e., member checking), and then analyzedusing qualitativesoftware.Morethan72singlespacedpages(~50,000individualwords) of interview transcripts were analyzed using NVIVO software version 10 (QSR*International, 2015) in accordance with open coding (i.e., the breakdown of common phrases and categories), axial coding(i.e.,relationships,patters,oremergingthemeidentification),andselectivecoding (i.e., thedevelopmentofauniversalgroupanswertoeachinterviewquestionthatrepresentsall participants and results in the generation of themes) (Leedy & Ormrod, 2009). To protect anonymity of participants, the nomenclature P1…P15 is used throughout this chapter.

Research Question 1: What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York State as it pertains to the

barriers they faced with school officials when collaborating with them about the individual education plan for their child?

Hypothesis 1. Parents of children with autism who graduated from a school in New York State will report common collaboration barriers with school officials regarding individual

education plans.
Interview Question 1. Describe two experiences you had when you tried to provide input

regarding your child’s strengths and weaknesses to school professionals.
Open coding revealed mixed positive (n = 8) and negative (n = 7) experiences when

parents tried to provide input regarding their child’s strengths and weaknesses to school professionals. Open coding results are published in Table 1.
Table 1
Interview Question 1 Open Coding

Participant Phrases Used

P1, P3, P5 P6, P7, P9 P11, P13

When aides were giving too much help (tying shoes, writing name) Child was not learning to be independent
I brought in a reading program: Language for Learners
I asked a teacher to change anxious behavior and it worked

I suggested that perhaps there was another way my daughter’s compulsory habits and energy could be used around
After some discussion with the speech therapist, we made strides to acquire my daughter a Dynavox machine

The teachers incorporated role play and acting into his work, prompting him to respond to conversations more appropriately
I asked the teachers to modify this curriculum and they did
I suggested gym and art therapy to improve my son’s behavioral issues

I had to give my input about my daughter’s education regarding the type of music she was listening to in school
I urged the teacher to implement some type of language learning reading program

Her education would require my having a say in it because some teacher and aids were not doing the minimum
Giving input about using food edibles as rewards for good behavior
I had suggested that earphone be used with the computer as it helped him block out distractions and helped in focus better

My overall experience has been negative because oftentimes these administrators feign that they know more about your child then you do. It comes down to the budget
Most of the time they say they will take my suggestions to placate me with nothing different actually being done

I think listening to that music caused her to regress somewhat
A parent’s input is often dismissed
I had asked his teacher and the aids to teach him how to read the words, but I was not taken seriously

P2, P4, P8 P10, P12, P14, P15

My child needed a one-to-one aid in order to educate her, but the para was used for another student
I suggested using art to teach him concepts and to assess him academically, this was met with resistance and was an overall negative experience

Axial coding revealed that parents nearly always knew their child’s primary learning style and had to initiate suggestions including specific types of programs (e.g., art, music) or educational modalities (e.g., Language for Learners, Dynavox machine) to administrators, teachers, and aides on how to better educate their child and minimize negative behaviors. While the results of these suggestions were mixed 53.3% positive and 46.7% negative; the positive experiences were tied to greater student independence (e.g., tying shoes, writing) and fewer negative behavioral issues; the negative experiences appeared to center around frustration with teachers and aides not following through with parental suggestions.

Selective coding resulted in the following composite response to interview question 1 that speaks for the entire group of participants and may be represented by the statement, “Parents who provide administrators, teachers, and aides input for their autistic child’s learning and behavioral modification is sometimes a positive experience with positive results, and sometimes

a negative experience with negative results. The main difference between positive and negative experiences has to do administrator, teacher, and aide receptiveness to parental suggestions as well as their ability to comply with those suggestions as related to budgetary allowances and training/education competency.”

Interview Question 2. What role did you feel school officials expected you to play in the education of your child?

Open coding revealed a combination of active (n = 5), inactive (n = 8), and sometimes active/inactive depending on the teacher (n = 1) roles that school officials expected parents to play in the education of their child. P10’s response was too short to be included in open coding.

Open coding results are published in Table 2. Table 2
Interview Question 2 Open Coding

Participant Phrases Used

P1, P6, P8 P13, P14

P2, P3, P4 P7, P9, P11 P12, P15

To be involved as you wanted to be
They wanted to work together with parents to establish the best program The teachers were very willing and encouraging of me taking an active role The school was inclusive and welcomed active participation
My role was to share information about my son on a daily basis

Only when they can’t handle your child’s behavior
No expectations for my involvement
They would only call me if they were experiencing problems
They wanted me out of the loop
They were very unavailable to answer my questions and address my concerns
I don’t think the school officials expected me to play a big role in the education of my child
To keep quiet about suggestions or recommendation
To just show up at the Individual Education Plan Annual Meetings and sign the paper without question

School officials exclude parents from having a say on anything

It depended on which teacher she had. Some teachers were very receptive to my feedback, others were not

Axial coding revealed that parents experienced more inactive role (57.1%) expectations than active role expectations (35.7%) by parents. Although, a minority response, it does appear reasonable that the role parents were expected to play in their child’s education was largely dictated by the type of teacher working with their child (i.e., proactive – expected active parental roles vs. reactive – did not want active parental roles).

Selective coding resulted in the following composite response to interview question 2 that speaks for the entire group of participants and may be represented by the statement, “The role parents are expected to play in their autistic child’s education largely depends on whether or not

their child’s teacher is proactive and expected active parental participation/input or if their child’s teacher is reactive and does not want active parental involvement. More reactive teachers were reflected in the group’s response.”

Interview Question 3. The Individual Education Plan (IEP) mandates quarterly reports outlining progress with Individual Education Plan (IEP) goals. When you received the reports, what difficulties, if any, did you experience when you tried to decipher what was being taught and what was being learned?

Open coding revealed the majority of participants indicated difficulties understanding IEP reports (n = 10). Only two (n = 2) participants indicated no difficulty deciphering IEP reports related to what was being taught and learned. P2’s, P9’s, and P14’s responses were not related to the question content and was not included in open coding. Open coding results are published in Table 3.

Table 3

Interview Question 3 Open Coding

Participant Phrases Used

P1, P3, P4 P6, P7, P8 P11, P12 P13, P15

Sometimes it’s hard to gauge the improvement on specific goals
Sometimes I found the IEPs difficult to understand
There was a lot of confusion and sometimes they seemed very obscure to me The IEP reports seemed very ambiguous to me
My child’s PLOP (present levels of educational performance) was an aspect on the IEP that confused me
What confused me about the IEPs were the amendments and mandates teachers were allowed to add to them
The hardest thing about trying to understand the IEP reports was attempting to identify where progress was being made
The IEP progress reports were unclear
The coding system to mark progress appeared to be too broad and arbitrary More training on how to create a viable IEP would have help me as a parent understand what was and was not mastered
I think the IEP reports were deliberately designed to be unclear

I didn’t really experience any problems when attempting to decipher the IEP and how goals were being achieved
I received quarterly reports depicting the progress my daughter made

P5, P10,

Axial coding revealed that parents experienced more difficulties (83.3%) understanding IEP reports, especially the coding system (i.e., mastery of learning/abilities) than those who had no difficulties (16.7%). Those who identified difficulties (e.g., confusion, ambiguity, lack of clarity, misunderstanding) generally expressed dissatisfaction with the IEP process.

Selective coding resulted in the following composite response to interview question 3 that speaks for the entire group of participants and may be represented by the statement, “The IEP reports are difficult to understand, are confusing, are ambiguous, are unclear and need to be improved or explained better by those writing the reports.”

Interview Question 4. What factors in the IEP did the school adhere to, and in what areas were they non-compliant?

This was a two-party interview question where open coding related to IEP adherence vs. IEP non-compliance. There are some participants who responded to both parts of the question whereas others only indicated responses based on one part of the question. A total of 20 phrases were attributed to adherence (n = 7) vs. non-compliance (n = 13). Open coding results are published in Table 4.
Table 4
Interview Question 4 Open Coding

Participant Phrases Used

______________________________________________________________________________

P1, P3, P4 P8, P10, P11 P12

IEP Adherence

I think some of the goals they adhered to was speech and language therapy
They adhered to quarterly reports
I think the factors that were adhered to were the goals themselves
The teachers adhered to the mandates that I receive my quarter reports
The area of the IEP that was adhered to was the modification of instruction based on a typical/general education curriculum

The teacher adhered to the mandate of ensuring that I received progress reports Factors that were adhered to were math and reading objectives

P1, P2, P3 P5, P6, P7 P8, P9, P10 P11, P13 P14, P15

IEP Non-Compliance

Occupational therapy goals where short-changed
They were non-compliant, unless I wrote the goal and hired lawyers
A behavior plan that was never implemented
Many times my daughter did not get the therapies (speech) she was entitled to and that were written into her IEP
Vocational training goals were not even attempted
The school was overall very non-compliant with the IEP
They did not adhere to the plan to modify my child’s behavior
Assistive technology was a factor in the IEP that was not adhered to

An area of non-compliance on the school’s part was the development of a valid transition plan
They were noncompliant in developing an appropriate and functional behavior plan

Axial coding revealed that parents experienced more factors (e.g., occupational therapy, assistive technology, behavior plans, vocational training, and transition planning) the IEP did not comply with (65%) than areas of compliance (35%) which included speech therapy, quarterly reports, and curriculum.

Selective coding resulted in the following composite response to interview question 4 that speaks for the entire group of participants and may be represented by the statement, “There were more factors associated with IEP non-compliance (e.g., occupational therapy, assistive technology, behavior plans, vocational training, and transition planning) than adherence (e.g., speech therapy, quarterly reports, and curriculum).”

Interview Question 5a. What evidence do you have that the majority of the goals were mastered?

The majority of participants (n = 13) were able to identify evidence of IEP goal mastery with only one (n = 1) participant who stated that none of the goals were mastered. P6’s response did not identify any evidence related to the question content and was not included in open coding. Open coding results are published in Table 5.

Table 5

Interview Question 5a Open Coding

Participant Phrases Used

P1, P3, P4 P5, P7, P8 P9, P10, P11 P12, P13 P14, P15

My daughter’s portfolio
When I would sit down with my son and do homework I could see progress I witnessed changes in my child’s behavior
My son can now complete tasks he couldn’t have otherwise completed
I’ve seen improvements in his math, verbal, social, and communication skills The reports and teacher’s meetings helped provide me with evidence
The fact that my daughter did graduate with an IEP diploma
When doing homework with my child
Work portfolio
Evidence in learning and mastery in reading
A collaborative team effort was always the evidence that proved learning

In my situation, the majority of the goals were not mastered, so that question really doesn’t apply to me

Axial coding revealed that most parents (92.9%) were able to identify examples (e.g., portfolios, behavioral improvement, curriculum ability improvements in math, reading, verbal, social, and communication skills).

Selective coding resulted in the following composite response to interview question 5a that speaks for the entire group of participants and may be represented by the statement, “The majority of parents were able to identify evidence (e.g., portfolios, behavioral improvement, curriculum ability improvements in math, reading, verbal, social, and communication skills) of IEP goal mastery.”

Interview Question 5b. When your child graduated, which of the goals were described as “completed,” or noted as “in progress?”

This was a two-party interview question where open coding related to goal completion vs. goals still in-progress. There are some participants who responded to both parts of the question whereas others only indicated responses based on one part of the question. A total of 12 phrases were attributed to goal completion (n = 10) vs. goals still in-progress (n = 5). P2’s, P10’s, P12’s, and P13’s responses were not related to the question content and could not be analyzed. Open coding results are published in Table 6.

Table 6

Interview Question 5b Open Coding

Participant Phrases Used Completed

P1, P3, P4 P5, P6, P7 P8, P9, P14 P15

Shopping with a list of pictures
Identification of symbols/meanings, coins/names
Multiplication with a calculator, the ability to read short stories, and writing on the lines of a page
Determine if a specific amount of money is enough to make a purchase
Being able to dictate a story
Writing his full name, address, and phone number
Identify sequences of activities on a picture and word schedule, read and write a complete date, and make selections and put an appropriate amount of money into vending machines
Navigating a shopping cart, opening and filling plastic bags when shopping, operating an elevator, responding to commands, mailing a letter, and organizing and ordering similar objects
Gross and fine motor goals
Completed goals that tested her perception which included completing thirty piece interlocking puzzles, and writing with the correct size and proportion of letters Working at a large department store and stocking shelves
Money exchange as evident and using a calculator

P1, P4, P5 P7, P15

In Progress

Shopping without a list of pictures
Being able to maintain eye contact when speaking to a person and recognize when a conversation is terminated
Being able to write down the events he recounted himself
Putting produce on the scale to see how much it weighed and paying a cashier the correct amount of money
Reading skills

Axial coding revealed that most parents (66.7%) identified examples of goals that were complete (e.g., shopping with visual assistance, counting/naming money, writing, functional activities, vocational activities, etc.). The remaining parents (33.3%) identified examples of goals that were in-progress (e.g., shopping without visual assistance, maintaining eye contact, and higher level reading/writing/analytical math).

Selective coding resulted in the following composite response to interview question 5b that speaks for the entire group of participants and may be represented by the statement, “The majority of parents were able to identify examples of goal completion for various practical vocational and avocational activities and abilities. However, higher level reading/writing/analytical math and social skills were often identified as still in-progress.”

The following list of thematic answers to Research Question 1 include:

Parents recalled a mix of (positive/negative) experiences when providing input toschool professionals.
Parental involvement depends on the teacher. More reactive teachers who do not wantparental involvement.
IEP reports are more often difficult to understand and need improvement or betterexplanat ion.

There is more IEP non-compliance than compliance.
Examples of IEP goal mastery were noted by parents.
More IEP goals were completed than in-progress.

Research Question 1 Results. The themes generated supported hypothesis 1 whereby parents of children with autism who graduated from a school in New York State reported common collaborationbarrierswith schoolofficialsregardingindividualeducationplans.Negatively perceived IEP collaboration barriers included a mix of negative experiences when providing input to school professionals particularly with regard to reactive types of teachers. IEP reports are more often difficult to understand and need improvement or better explanation. There is more IEP non- compliancethan compliance.Higherlevelreading/writing/analyticalmathandsocialskillswere often identified as still in-progress as opposed to goal completion at the conclusion of services.

This study’s results that supported hypothesis 1 are similar to those reported by Wellner, (2012) who reported parents commonly reported restrictions of input by school teachers and officials creating an “us” versus “them” dynamic. Similarly, Mueller and Buckley (2014) concluded that common areas of parental dissatisfaction included “the lack of communication with school personnel, counter-productive IEP meetings, and conflict over what constitutes an educational benefit for students” which were consistent with results of this study supporting hypothesis 1. Keenan et al. (2010) concluded that “parental input regarding the education of a child with autism is generally unwelcome by educators” which is also consistent with this study’s results that supported Hypothesis 1.

Parents and school professionals who generally consist of the teachers, administrators and service providers are expected to be equal participants in the development of the Individualized

Education Plan (IEP) process. Although inclusion of parents as equal members in the process has been mandated through the Individuals with Disabilities Education Act since 1975, parents continue to proclaim their stumbling on barriers to fair participation. Ongoing barriers for inclusive collaboration pointed to the lack of opportunities for parents to provide their insight and communication problems with school personnel. Further, parents are disenchanted with their perception that administrators do not possess disability specific knowledge, namely: Autism Spectrum Disorder (ASD). Many parents of children who suffer from ASD have voiced having serious difficulty with not being welcome to share their input in the special education team effort process (Tucker & Schwartz, 2013).

Similarly, Cianca and Wischnowski (2012) purported that parents of children classified as special needs are often faced with their being on the defensive due to varying school procedures and paperwork that are detached from the needs of the student creating conflict with school administrators. School officials report having to deal with difficult parents and parents report having to contend with an imbalance in working together presents conflicts. School officials are aware of the need to build a healthy and productive rapport with students’ parents, however, this has not yet been achieved throughout the special education system.

The educational system reveals that there are schools who are delinquent in involving parents of students with disabilities resulting in a barrier that is felt by both parents and school officials. The absence of parental input into supporting their child’s education creates discord which has led to some school creating best practices for families and administrators to use in order to collaborate more effectively (Bacon & Causton-Theoharis, 2015; Rodriguez, Blatz & Elbaum, 2014; Zetlin & Curcic, 2013).

Positively perceived IEP collaboration experiences included having well received input to school professionals in the cases where teachers were proactive and receptive in nature. Parents also cited more IEP non-compliance than compliance. Various examples of IEP goal mastery (e.g., portfolios, behavioral improvement, curriculum ability improvements in math, reading, verbal, social, and communication skills) were noted by parents and more IEP goals were completed than in-progress particularly for various practical vocational and avocational activities and abilities where there was more active and receptive parental input. Consequently, this author recommends that to improve the IEP experience and process related to collaboration barriers with school officials that more training is geared toward active listening for teachers and administrators working with children who have autism. These recommendations are also supported by previous research by Bellini et al. (2011) who concluded that effective training for school personnel is critical when educating students with autism. According to the Council of Exceptional Children (2010), school personnel commonly mis-concluded that parents were disinterested in their child’s IEP process and input. However, many parents feel intimidated by the meeting process which results in a lack of parental input. This study’s results support these conclusions and the recommended need to improve teacher and administrator knowledge of parental perceptions and feelings in order to optimize input and learning outcomes.

(Bacon & Causton-Theoharis, 2013). Based on the results of this study, it is clear that parents are not considered “equal partners” with teachers/administrators involved in the IEP process for children with autism which is where additional training and education would likely prove valuable.

Research Question 2. What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York State as it pertains to strategies that worked academically and behaviorally that set their child up for failure, regression, or success as they continue to learn and adapt to society after graduation?

Hypothesis 2. Parents of children with autism who graduated from a school in New York State will report common academic and behavioral strategies that set their child up for societal failure, regression, or success after graduation.

Interview Question 6a. What plan did the school employ for your child to ensure academic success (i.e. Individual Education Plan, Functional Behavior Plan, Positive Support Plan and/or Transition Plan?

IEP plans were universal (n = 15) whereas only 33.3% indicated Positive Support Plans (n = 5) and/or Functional Behavior Plans (n = 5). Only two (n = 2) participants indicated Transition Plans were employed to ensure academic success. Open coding results are published in Table 7.

Table 7

Interview Question 6a Open Coding

Participant Phrases Used

P1, P2, P3 P4, P5, P6 P7, P8, P9 P10, P11, P12 P13, P14, P15

P1, P6, P10 P12, P13

P1, P4, P5 P8, P9

P14, P15

IEP Plan

Positive Support Plan Functional Behavior Plan Transition Plan

Axial and selective coding were not applicable to this interview question because of the categorical nature of responses. It is concluded that Positive Support Plans, Functional Behavior Plans, and Transition Plans are underutilized to compliment the IEP in assuring academic success.

Interview Question 6b. Describe your active participation in developing these plans. There were three (3) categories of active participation responses by participants that involved teacher/administrator initiated parental participation and input in planning (n = 7);

parent initiated input (n = 4); and no active parental input (n = 4). Open coding results are published in Table 8.

Table 8

Interview Question 6b Open Coding

Participant Phrases Used
Teacher/Administrator Initiated Parent Participation

P1, P5, P6 P7, P9, P14 P15

P2, P4, P8 P13

P3, P10, P11 P12,

Teachers would ask me what I thought my daughter would respond to Working with teachers
We developed other strategies to modify her behavior
I reinforced the plans at school by bringing them home

The teachers would ask for my input and what my child’s hopes and dreams entailed
I had input in the Positive Support Plan

Parent Initiated Participation

I’d verbalize the goals I wanted for my child
I started going into their offices and telling them what I wanted
I actively participated in these plans by meeting with school officials A parent has to advocate constantly for their child

No Active Participation

These plans were made in my absence It was done without my input
Without my input
It is rarely encouraged to share input

Axial coding revealed that most parents (53.3%) identified that their active participation and input into their child’s IEP, Functional Behavior Plan, Positive Support Plan and/or Transition Plan was not asked for in a collaborative manner by teachers/administrators. Half of those parents gave their input/suggestions anyway, but the other half did not self-initiate input. The remaining 46.7% of parents indicated that their active participation/input was collaborative and encouraged by teachers/administrators.

Selective coding resulted in the following composite response to interview question 6b that speaks for the entire group of participants and may be represented by the statement, “Only about half of the time was parental input into their child’s IEP, Functional Behavior Plan, Positive Support Plan and/or Transition Plan identified as active participation and collaborative with teachers/administrators. The other half of the time, parents were not encouraged to have input/active participation in their child’s academic success planning.”

Interview Question 7a. What areas did you feel the plan was appropriate to your child? Explain.

All participants identified at least one area where the academic success plan(s) were appropriate to their child (n = 15). Open coding results are published in Table 9.

Table 9

Interview Question 7a Open Coding

Participant Phrases Used

P1, P2, P3 P4, P5, P6 P7, P8, P9 P10, P11 P12, P13 P14, P15

Being aligned with my daughter’s developmental age Appropriate for my child and her capabilities

The excellent reading program that was instituted gave him confidence
The combination of the IEP and Functional Behavior Assessment were appropriate
Field trips that were part of the Positive Support Plan were very appropriate and effective

Positive Support Plan that built her self-confidence and simultaneously decreased her in-class behaviors
I felt my son’s IEP was appropriate
My daughter’s IEP and Positive Support Plan was appropriate

The plan at least served as a blueprint to describe the strengths and weaknesses

Axial coding revealed that all parents (100%) identified at least one area where the academic success plan(s) were appropriate for their child based on alignment, appropriateness, positive behavioral changes, effectiveness, etc. Selective coding resulted in the following composite response to interview question 7a that speaks for the entire group of participants and may be represented by the statement, “Academic success plan(s) were appropriate for their child, in spite of the fact that nearly half of the participants were not solicited for active or collaborative input into these plans.”

Interview Question 7b. In what areas did you feel it was a “one size fits all” plan devised for all the students classified with autism at the school? Explain.

All participants identified with least one area where the academic success plan(s) were identified as “one size fits all” (n = 15). Open coding results are published in Table 10.

Table 10

Interview Question 7b Open Coding

Participant Phrases Used

P15

other goals written in the children’s behavior plans
They threw all of the students who were the same age into the same classroom, no matter their level
Some teachers seemed more focused on the autism diagnosis and less about him as an individual
The teacher’s focus was always on the disruptive children
Not all of the curriculum was adapted to meet the unique, individual needs of my child
Students who are classified as learning disabled making the expectations too low and blanketing one teaching style to fit all the learning styles of their students

It was one size fit all because even if my daughter would have benefited from a particular activity, it was really up to the other students and staff
Curriculum plans were based on diagnosis and no effort was made to differentiate

P1, P2, P3
P4, P5, P6
P7, P8, P9
P10, P11,
P12,P13,P14 Theirmaingoalwastokeepeveryonequietandwell-behavedattheexpenseof

educational goals

A classroom where everyone is treated on the same level is the antithesis of the individual education plan
Behavior plans and academic plans are often viewed as a one-size-fits all because it makes it easier for the teacher and school that is underfunded and/or understaffed

Axial coding revealed that all parents (100%) identified at least one area where the academic success plan(s) were identified as “one size fits all” based on unidimensional teaching styles, curriculum plans, and student learning styles and behavioral interventions as related to the child’s diagnosis rather than consideration for individual differences among students with the same diagnosis.

Selective coding resulted in the following composite response to interview question 7b that speaks for the entire group of participants and may be represented by the statement, “Academic success plan(s) were viewed as “one size fits all” based on unidimensional teaching styles, curriculum plans, and student learning styles and behavioral interventions as related to the child’s diagnosis rather than consideration for individual differences among students with the same diagnosis.”

Interview Question 8. The various learning styles include visual/spatial intelligence, verbal/linguistic intelligence, logical/mathematical intelligence, bodily/kinesthetic intelligence, musical/rhythmic intelligence, interpersonal intelligence and/or intrapersonal intelligence. These learning styles are used to determine how a child best acquires information. Which of these forms of learning best describes your child’s preference?

There were five different learning styles identified by participants and some participants identified more than one different learning style for their child. A total of 18 phrases were attributed to learning style(s) that were Kinesthetic (n = 5), Musical/Rhythmic (n = 3),

Visual/Spatial (n = 5), Logical/Mathematical (n = 3), and Verbal/Linguistic (n = 2). Open coding results are published in Table 11.

Table 11

Interview Question 8 Open Coding

Participant Phrases Used Kinesthetic

P1, P3, P5 P9, P11

P2, P10, P13

P2, P4, P6 P8, P12

P3, P7, P15

P6, P14

My daughter is kinesthetic learner
I’d say my son is a bodily/kinesthetic learner
My daughter is kinesthetic learner
Kinesthetic category best describes how my child learns

Musical/Rhythmic

Music and visual best describe my child’s learning style Musical learning best describes my child’s learning style My child is a musical learner

Visual/Spatial

Music and visual best describe my child’s learning style
My son was definitely a visual learner
My daughter is both a visual learner and verbal/linguistic learner I’d say my daughter learns best visually
Visually learning was my child’s strength

Logical/Mathematical

Math and the kinesthetic categories best describe my child’s learning My son has a lot of mathematical and logical reasoning Mathematical and logical reasoning

Verbal/Linguistic

My daughter is both a visual learner and verbal/linguistic learner Verbal/Linguistic learner would best describe my child

Axial coding revealed that all parents (100%) identified their child’s learning style. The most common learning styles were Kinesthetic (27.8%) and Visual/Spatial (27.8%) compared with the less common learning styles of Musical/Rhythmic (16.7%), Logical/Mathematical (16.7%), or Verbal/Linguistic (11.1%).

Selective coding resulted in the following composite response to interview question 8 that speaks for the entire group of participants and may be represented by the statement, “Learning styles were identifiable by all parents and diverse in nature. The most common learning styles were Kinesthetic and Visual/Spatial with lower representation of Musical/Rhythmic, Logical/Mathematical, and Verbal/Linguistic.”

The following list of thematic answers to Research Question 2 include:

Positive Support Plans, Functional Behavior Plans, and Transition Plans areunderutilized to compliment the IEP in assuring academic success.
Parental active participation/input into their child’s academic success plans was onlyencouraged by teachers/administrators about half of the time.
Academic success plans were appropriate for their child in at least one area.
Academic success plans were viewed by parents as “one size fits all” for at least onearea which runs contrary to the IEP title, purpose, and goals.
Learning styles were widely diverse among the children with Kinesthetic andVisual/Spatial being more common

Data Collection and Analysis. Stabell and Nåden (2006) found the interpretation process constitutes “detective work whereby the key lies in the tendencies or paradigms that show or repeat themselves.” Each recorded interview will first be transcribed with Dragon transcription software Version 12 (Nuance Software, 2012). Dragon 12® is fast, and when a correction is needed, Dragon12® learns, making it more accurate the more it is in utilized. Dragon12® will enable the researcher to accurately transcribe the recorded interview sessions. Next, each recorded

transcript will then be coded for themes with software NVivo9® (NVivo9®, 2012). NVivo9® allowstheresearcherto uploadfiles(audio,video,text,orwebsites)intoaprogramthatcodesthe documents for themes and patterns into words; thus, the audio-recorded data will be transcribed, coded, sorted, classified, and finally, studied through inductive reasoning.

Coding refers to sorting and organizing collected data and identifying recurring themes, facts, or ideas and involves describing the responses to the interview questions in a few words typical for each response. Common themes will be identified that relates to the barriers parents face when navigating their children, classified with autism, through the New York State K-12 educationsystem. Keypatternswillbeidentifiedtoaddresstheresearchquestionsthroughthe data analysis. Finally, the analysis will include efforts to find similarities with other qualitative studies in the field of pedagogical structures for children classified with autism.

The use of coding for analysis will assist in finding possible relationships and trends in the responses collected from the sample population (Lichtman, 2010). As a tool for qualitative analysis, NVivo® is precise and versatile in the creation of trees and nodes for qualitative data to match up with similar responses (Richards, 1999). Additionally, relationships and links between the qualitative data can be created to show the trends within the data collected from the population sample. The casebook is a section within NVivo9® that shows the attributes within the data recorded. The attributes can then be linked to the cases, thereby linking the respondents to theresponsesgiven. Moreover,thesoftwareallowsforbuildinggraphicalpresentationsofthe data distribution and comparing attributes.

All qualitative interview question responses will be analyzed using the
assistance of NVIVO software. The process of open, axial, and selective coding interview

question responses are outlined by Leedy and Ormrod (2009, p.154-155):
Open Coding. Open coding is the first stage in the process of breaking down, examining, comparing, conceptualizing, and categorizing data to discover any themes that may independently present themselves as a critical variable. The purpose of applying

open coding is to promote the conceptualization of the data into as many categories as possible. Once coded, similar pieces of data are grouped together from which categories are defined and form the basis for the second level of analysis. Open coding is a system of codes that allows data to be broken down and dissected into potential themes and categories.

Axial Coding. Axial coding, the second stage reassembles the data allowing the researcher to explore and discover possible relationships, patterns or emerging themes. Axial coding makes connections between categories that are delineated in open coding.

Axial coding can be explained by considering the form of a logic diagram which includes casual conditions, contexts, intervening conditions, interaction strategies and subsequent consequences until conceptual saturation is reached.
Selective Coding. Selective coding serves as the final stage of the data analysis that is to be performed within this study. In the examination of categorical relationships, selective coding is similar to axial coding. However, selective coding occurs at a higher abstract level and seeks to integrate the categories, which are uncovered in axial coding, around a central theme. Selective coding is based on selecting the core category, systematically relating it to other categories validating those relationships and filling categories that need further refinement and development.

Research Question 2 Results. The themes generated supported hypothesis 2 whereby parents of children with autism who graduated from a school in New York State reported common academic and behavioral strategies that set their child up for societal failure, regression, or success after graduation.

Negatively experienced academic and behavioral strategies were related to the IEP being “one size fits all” for at least one area which runs contrary to the IEP title, purpose, and goals. Parents also reported that teachers underutilized a variety of teaching styles to match the variety of learning styles of their children. In addition, parental active participation and input into IEPs, Positive Support Plans, Functional Behavior Plans, and Transition Plans was only solicited by teachers about half of the time.

This study’s results that supported hypothesis 2 are similar to those reported by Wellner, (2012), Mueller and Buckley (2014), and Keenan et al. (2010) whereby parents of children with autism generally reported at least some negatively perceived academic and behavioral IEP teacher and administrator strategies. The “one size fits all” experience, reported by parents, offers the area needing most significant change in order to improve the IEP process, experience, and outcomes therefore.

Positively experienced academic and behavioral strategies included the fact that about 50% of the time teachers did encourage parental active participation and input into IEPs, Positive Support Plans, Functional Behavior Plans, and Transition Plan. The other positive experience reported by parents was regarding the appropriateness of academic success plans for their child in at least one area. Building on these positive experiences related to academic and behavioral strategies is the foundation to build recommendations for the improvement of teacher and administrator knowledge in order to optimize input and learning outcomes.
Research Question 3. What are the perceptions, attitudes, and experiences of parents whose childrenwithautismagedoutoftheNewYorkStateschoolsystemregardingtheextent oftheir readiness into the adult world (i.e., job preparation and community integration)?

Hypothesis 3. Parents of children with autism who graduated from a school in New York State will report common themes related to readiness into the adult world (i.e., job preparation and community integration).

Interview Question 9a. How effective was the Functional Behavior Assessment (FBA) and/or Positive Support Plan (PSP) that was initiated by school officials in de-escalating challenging behavior?

There were two different categories of responses to this interview question where participants indicated that the FBA or PSP was effective (n = 11), or ineffective/not applicable (n = 4). Open coding results are published in Table 12.

Table 12

Interview Question 9a Open Coding

Participant Phrases Used Effective

P1, P3, P4 P5, P7, P8 P9, P11, P12 P13, P15

P2, P6, P10 P14

Very effective
This plan was very effective
The plan was somewhat effective
I’d say the Positive Support Plan my daughter had served its purpose

Not Effective or Applicable

They were not appropriate

I don’t think the plan was very effective The plans were not functional at all

Axial coding revealed that the majority of parents (73.3%) identified their child’s FBA or PSP was effective in de-escalating challenging behavior, whereas the remaining 26.7% indicated the FBA or PSP was not effective or not applicable.

Selective coding resulted in the following composite response to interview question 9a that speaks for the entire group of participants and may be represented by the statement, “Most (73.3%) FBA or PSPs were effective in de-escalating challenging behavior.”

Interview Question 9b. What role were you expected to play and do you feel there was any positive or negative improvements carried over from the school setting to this home environment?

All participants indicated that they were expected to implement strategies at home consistent with those being applied in the school setting except P8 who stated “I don’t think I was really expected to do much of anything, but provide a good and safe dwelling place for my daughter.” However, open, axial, and selective coding was not possible for the interview question responses due to the nature and content. Most participants indicated examples of what they did with their child at home that complimented interventions applied in the school setting. There was no ability to dichotomize positive or negative improvements based on the content of interview responses.

Interview Question 10. In what ways do you feel the plan to control and/or replace the negative behavior of your child was appropriate?

The majority of participants (n = 13) indicated that the plan to control and/or replace negative behavior was appropriate with various examples provided. However, two (n = 2) participants did not feel the plan to control and/or replace negative behavior was appropriate. Open coding results are published in Table 13.

Table 13

Interview Question 10 Open Coding

Participant Phrases Used

P1, P3, P4 P5, P6, P7 P8, P9, P11 P12, P13 P14, P15

P2, P10

Finding developmentally appropriate and age appropriate rewards for my daughter
Replacement behaviors worked
The Positive Support Plan that rewarded him when he exemplified good behavior was very appropriate because it gave him a sense of confidence and didn’t encourage further behaviors

It used her visual skills to aid her in developing better social skills
It encouraged her to use her words and speech instead of pointing or making noises
The plan was appropriate because it focused on giving my son tasks he liked to do

It was not appropriate for my daughter. More training needs to be done amongst staff

Axial coding revealed that the majority of parents (86.7%) indicated that the plan to control and/or replace negative behavior was appropriate with various examples provided, whereas the remaining 13.3% indicated the opposite.

Selective coding resulted in the following composite response to interview question 10 that speaks for the entire group of participants and may be represented by the statement, “Most (86.7%) indicated that the plan to control and/or replace negative behavior was appropriate with various examples provided.”

The following list of thematic answers to Research Question 3 include:
1. Most (73.3%) FBA or PSPs effective in de-escalating challenging behavior.

All participants indicated that they were expected to play an active role and implement strategies at home consistent with those being applied in the school setting except P8 who stated “I don’t think I was really expected to do much of anything, but provide a good and safe dwelling place for my daughter.”
Most (86.7%) indicated that the plan to control and/or replace negative behavior was appropriate with various examples provided.

Research Question 3 Results. The themes generated supported hypothesis 3 whereby parents of children with autism who graduated from a school in New York State reported common themes related to readiness into the adult world (i.e., job preparation and community integration). The majorityof experienceswerepositiveregarding(73.3%)FBAorPSPeffectivenessinde- escalating challengingbehavior;andmost(86.7%)indicatedthattheplantocontroland/orreplace negative behaviorwasappropriatewithvariousexamplesprovided.

This study’s results that supported hypothesis 3 run contrary to those reported by Wellner, (2012), Mueller and Buckley (2014), and Keenan et al. (2010) whereby parents of children with autism generally reported at least some negatively perceived readiness into the adult world (i.e., job preparation and community integration) IEP teacher and administrator strategies. While some improvement can be made in regard to optimizing positive parental perceptions regarding readiness into the adult world (i.e., job preparation and community integration), the majority reported that this area of the IEP process and outcomes was consistently higher than other areas (e.g., parental collaboration barriers, academic and behavioral strategies). While this area of the IEP process and experience was most positive, specific adult world readiness skills have significant room for improvement.

Research Question 4. What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York State with respect to the efficacy of the teaching methods of educators related to vocational skills and job readiness?

Hypothesis 4. Parents of children with autism who graduated from a school in New York State will report common themes with respect to the efficacy of the teaching methods of educators related to vocational skills and job readiness.

Interview Question 11. What meaningful vocational skills that fostered creativity and a sense of accomplishment did your child learn in school?

All participants (n = 15) identified meaningful and diverse vocational skills learned in school. Open coding results are published in Table 14.
Table 14
Interview Question 11 Open Coding

Participant Phrases Used

P1, P2, P3 P4, P5, P6 P7, P8, P9 P10, P11, P12, P13, P14, P15

Working outside, gardening, and cleaning Cafeteria cleanup, sweeping, housekeeping duties

Compressing computer files and other computer tasks Laundry, helping to wash, dry and fold gym uniforms Feeding the fish and helping to wash the fish’s bowl Cleanup duty in her classroom Cafeteria serving and kitchen cleanup

Putting out art supplies for her fellow peers during art time and cleanup
Cafeteria cleanup, sweeping, housekeeping duties, stacking the dishwasher in the cafeteria, putting tickets on umbrellas

Axial and selective coding were combined given the uniformity of identification for vocational skills learned by their child in school. The resultant composite response to interview question 11 that speaks for the entire group of participants and may be represented by the statement, “All parents identified various, but meaningful vocational skills (e.g., ground keeping/gardening, laundry tasks, food services tasks, housekeeping tasks, etc.) that fostered creativity and a sense of accomplishment.”

Interview Question 12a. Please explain your child’s experience with vocational education that provided him or her with an opportunity during the school day to participate positively in the community.

Nearly all participants (n = 14) identified one of their child’s experience with vocational education that provided him or her with an opportunity during the school day to participate positively in the community, mostly through field trips and vocational trainings or work related opportunities. One participant (P8) stated, “They went on field trips to different places, but didn’t work in the community, only at the school.” Open coding results are published in Table 15.

Table 15

Interview Question 12a Open Coding

Participant Phrases Used

P1, P2, P3, P4, P5, P6 P7, P9, P10 P11, P12, P13, P14, P15

Exposure to different areas of vocation The transition plan
Working with computers

When they took the students to an actual laundromat, my son was able to use these skills

In the community, my son was able to go to a pet shelter and pet store with his class and help take care of the animals

My daughter was able to go to a pizzeria where she learned hands-on how to make the dough for the pizza

Go to the local food pantry, helping to organize cans according to what kind of food was in them and other boxes of food items and put them in appropriate boxes for the people who needed them

P8 They went on field trips to different places, but didn’t work in the community, only at the school

Axial and selective coding were combined given the uniformity of their child’s experience with vocational education that provided him or her with an opportunity during the school day to participate positively in the community, mostly through field trips and vocational trainings or work related opportunities.

Interview Question 12b. Please explain your child’s experience with vocational educational that provided him or her with an opportunity during the school day to enjoy a sense of accomplishment.

All participants (n = 15) identified one of their child’s experience with vocational education that provided him or her with an opportunity during the school day to enjoy a sense of accomplishment. Open coding results are published in Table 16.

Table 16

Interview Question 12b Open Coding

Participant Phrases Used

P1, P2, P3

When she was able to completely maintain a section of the garden
As long as there was no idle time, my daughter had a sense of accomplishment When he would go to the other classrooms and assist the other teachers and students
Working with the laundry gave my son a sense of accomplishment
My son loved working at the local animal shelter

My daughter always loved cooking. She likes being in the kitchen and helping out when she can to make dinner
Serving at the local food pantry once a month
My daughter did feel a sense of accomplishment being the one who was in charge of the art supplies in her classroom

Axial and selective coding were combined given the uniformity of their child’s experience with vocational education that provided him or her with an opportunity during the school day to enjoy a sense of accomplishment, mostly related to having responsibilities linked to what they most enjoyed doing.

Interview Question 12c. How did you reinforce these experiences?

All participants (n = 15) gave examples of reinforcing positive vocational experiences experienced in the classroom and directly transferred in the child’s home. Open coding results are published in Table 17.

Table 17

Interview Question 12c Open Coding

Participant Phrases Used

P1, P2, P3 Encouraging the same vocational tasks from school at home
P4, P5, P6 Through allowing her to exercise daily life skills at home
P7, P8, P9 I would provide a computer in the home
P10, P11, P12 I would always allow my on to help me with the laundry at home P13, P14, P15 Having a pet in the home reinforced these experiences

By allowing her to help me cook dinner at home
By allowing him to put away the groceries in their proper spots after shopping My daughter was responsible for different tasks at home like clearing the dining room table after meals, washing dishes, and making her bed
I let my daughter sweep, do laundry, make her own bed, and hang up towels

Axial and selective coding were combined given the uniformity of reinforcing positive vocational experiences experienced in the classroom and directly transferring them or re-creating them in the child’s home.

Interview Question 13a. Vocational training utilizes physical materials, people and/or symbols, such as numbers or letters. Please describe training strategies that teachers used to foster mastery in learning new job skills.

Interview Question 13b. Which ones were the most effective?
Interview Question 13c. Which ones were the least effective?
Some participants indicated more than one vocational training strategy/category with a

total of 23 responses. There were three different categories of responses to this interview question where participants indicated that physical materials were utilized (n = 12), people were utilized (n = 8), or symbols were utilized (n = 3). Open coding results are published in Table 18.

Table 18

Interview Question 13a, 13b, 13c Open Coding

Participant Phrases Used Physical Materials

P1, P2, P3 I think that the teachers incorporated all three of those strategies P4, P6, P7 Pictures, tape recordings which they can use on an iPad or Dynavox P8, P9, P10 The computer technology
P11, P13, P15 Math and card games

Different materials when cooking like utensils, cheese, dough, sauce
Different pictures were hung up on the boxes to indicate what foods were to be placed in the boxes
Learning to identify materials was reinforced by the teacher’s direction as well as symbols contained on the containers the art supplies were kept in.

P1, P4, P5 P6, P8, P9 P12, P14

P1, P8, P9

People

I think that the teachers incorporated all three of those strategies Definitely the people was a huge one
People were also used in the vocational training
With supervision and training

Learning to identify materials was reinforced by the teacher’s direction as well as symbols contained on the containers the art supplies were kept in.

Symbols (Numbers/Letters)

I think that the teachers incorporated all three of those strategies
Learning to identify materials was reinforced by the teacher’s direction as well as symbols contained on the containers the art supplies were kept in.

Axial coding revealed that the majority of parents (52.2%) identified physical materials training strategies that teachers used to foster mastery in learning new job skills. People were identified as the primary training strategy by 34.8% of participants and the remaining 13% identified symbols as the primary vocational training strategy.

Selective coding resulted in the following composite response to interview question 13a, 13b, and 13c that speaks for the entire group of participants and may be represented by the statement, “Physical materials were identified as the most commonly used and effective training strategy teachers used to foster mastery in learning new job skills followed by people (34.8%), and symbols (13%). Conversely, the least effective training strategy was related to the use of symbols (numbers/words).”

Interview Question 14a. Please describe how vocational job opportunities after graduation complimented the skills your child was taught in school.

The majority (n = 12) of participants indicated that their child’s vocational job opportunities after graduation complimented the skills taught in school. The remaining participants (n = 3) indicated that their child needed additional services (Adult Services) and

training before having any vocational job opportunities. Open coding results are published in Table 19.

Table 19

Interview Question 14a Open Coding

Participant Phrases Used

P1, P3, P4 We were able to find a job that allowed her to continue her rewarding work with P5, P6, P7 gardening
P9, P11, P12 Skills he learned in school allowed him to work in a store that sold computers P13, P14, P15 He went on to actually work in a laundry mat

My son continues to do volunteer work at the animal shelter
My daughter is now in a residential program, where she does cooking for the girls in her house once a week
My son currently works at the local grocery store

P2, P8, P10 They weren’t trained for these positions during their schooling
The vocational opportunities after school did not really compliment the skills my daughter learned in school

Axial coding revealed that the majority of parents (80%) identified a direct link between skills taught in school and vocational job opportunities after graduation. The remaining 20% reported that their child needed ongoing training and Adult Services before employment was possible.

Selective coding resulted in the following composite response to interview question 14a that speaks for the entire group of participants and may be represented by the statement, “Unless their child needed Adult Services and additional vocational training, parents indicated that the skills taught in school resulted in vocational opportunities after graduation.”

Interview Question 14b. In which way did any of them fail?

The majority (n = 9) of participants indicated that there was some measure of failure or disconnect between vocational skills taught in school and their child’s vocational job opportunities. The remaining participants (n = 6) indicated that there was no failure or disconnect between vocational skills taught in school and their child’s vocational job opportunities. Open coding results are published in Table 20.

Table 20

Interview Question 14b Open Coding

Participant Phrases Used

P1, P5, P7 P9, P13, P15

P2, P3, P4, P6, P8 P10, P11, P12, P14

Vocational job opportunities did not fail her
I don’t have anything negative to say about the vocational opportunities The job coach we enlisted led us to this incredible opportunity for my son No real training was implemented because of budget restrictions

Some negative behaviors still occur at times
He struggles with communicating with customers and taking their orders He does not fully understand the logistics
There is still stigma and low expectations for person diagnosed with a learning disability
She was never explicitly trained for any job or vocation and because of that, finding placement for her

Axial coding revealed that the majority of parents (60%) identified some measure of failure or disconnect between skills taught in school and vocational job opportunities after graduation. The remaining 40% identified no failure or disconnect between skills taught in school and vocational job opportunities after graduation.

Selective coding resulted in the following composite response to interview question 14b that speaks for the entire group of participants and may be represented by the statement, “There were diverse, but plentiful examples of failure or disconnect between skills taught in school and vocational job opportunities after graduation.”

Interview Question 15a. Prior to aging out of the school system into adult services, was your child assigned a job coach, and if so, please describe the kind of help that job coach offered your child.

The majority (n = 10) of participants indicated that they had a job coach who helped their child in a variety of ways. The remaining participants (n = 5) indicated that they did not have a job coach. Open coding results are published in Table 21.

Table 21

Interview Question 15a Open Coding

Participant Phrases Used Job Coach

P1, P3, P4 P5, P7, P9 P11, P12 P13, P15

P2, P6, P8 P10, P14

Yes, my child had a job coach Coordinated with the vocational director Coordinated with the teachers
On the job shadowing and directing Finding my child job opportunities

No Job Coach

We did not have a job coach

Axial coding revealed that the majority of parents (66.7%) participants indicated that they had a job coach who helped their child in a variety of ways (e.g., coordinating with vocational directors, teachers; providing on the job shadowing and directing; finding job opportunities). The remaining 33.3% indicated that they did not have a job coach.

Selective coding resulted in the following composite response to interview question 15a that speaks for the entire group of participants and may be represented by the statement, “While the majority (66.7%) of parents had a job coach involved in vocational training, 33.3% did not have a job coach. Given the positive comments regarding job coaches, there is an opportunity for improvement here.”

Interview Question 15b. What roles were you expected to play during the transition into adult services?

The majority (n = 10) of participants indicated that they were expected to play a support role in the transition services. The remaining did not have a job coach and were still waiting for their child to be approved to Adult Services and job placement. Open coding results are published in Table 22.

Table 22

Interview Question 15b Open Coding

Participant Phrases Used

P1, P3, P4 P5, P7, P9 P11, P12 P13, P15

Providing general support, filling out applications
I was expected to advocate for my son, discuss his strengths and weaknesses Filling out the paper work and accompanying my son to his interviews
Meet with school officials and the job coach and identify employment opportunities that matched my son’s interests and capabilities

Not Applicable

P2, P6, P8 We did not have a job coach P10, P14

Axial and selective coding are combined given the uniformity of parental responses related to playing a support role during the transition to adult services (e.g., filling out applications, accompaniment to interviews, meeting with school officials and job coaches, identifying employment opportunities to match interests/capabilities).

Interview Question 16. Name three vocational training tasks practiced in school that you observed your child using after graduation.

All (n = 15) participants were able to identify three vocational training tasks practiced in school and observed after graduation. Open coding results are published in Table 23.

Table 23

Interview Question 16 Open Coding

Participant Phrases Used

P1, P2, P3 P4, P5, P6 P7, P8, P9 P10, P11, P12 P1e, P14, P15

Weed the garden, distinguish between a flower and weed, identify the tools needed
Sweeps, washes dishes, and takes out the trash
Computer coding, reading, and drawing maps

Washing his clothes, drying his clothes, and completing daily life skills/hygiene Animal care, social skills, and patience
Identifying utensils and different foods, washing/drying dishes, kitchen cleaning/mopping

Counting, ability to take direction, distinguishing different food items
Waters plants, cleans off the dining room table after dinner, paints her own nails

Axial and selective coding are combined given the uniformity of parental responses related to the ability to identify three diverse and widely varied vocational training tasks practiced in school and observed after graduation. This indicates that vocational training is effective.

Interview Question 17. Please talk about a field trip your child went on that encouraged vocational interests and preferences.

The majority (n = 12) participants were able to identify a specific field trip that encouraged their child’s vocational interests and preferences. The remaining three (n = 3) participants cited budgetary restrictions or lack of applicability of field trips with vocational interests. Open coding results are published in Table 24.

Table 24

Interview Question 17 Open Coding

Participant Phrases Used

P1, P3, P4 P5, P6, P7 P9, P11, P12 P13, P14, P15

P2, P8, P10

Trip to a pizza place
Trip to a library
Trip to a laundromat
Visit to the aquarium
Trip to a Hibachi Japanese restaurant Trip to the post office

Not Applicable

The budget dictated that there was none of those extra trips
My daughter did not really go on any trips that encouraged her vocational interests

Axial and selective coding are combined given the uniformity and majority (80%) of parental responses related to the ability to identify field trips that encouraged vocational interests, thereby supporting the effectiveness. The remaining parents indicated that field trips were not beneficial or in the budget which provides an opportunity for improvement.

The following list of thematic answers to Research Question 4 include:

Vocational skills were learned in school as identified by all parents with variousexamples provided.
Experience with vocational education almost always (93.3%) provided opportunitiesduring the school day to participate positively in the community, mostly through fieldtrips and vocational trainings or work related opportunities.
Experience with vocational education always provided opportunities during theschool day to enjoy a sense of accomplishment, mostly related to havingresponsibilities linked to what they most enjoyed doing.
All parents provided reinforcing positive vocational experiences experienced in theclassroom and directly transferring them or re-creating them in the child’s home.
All three types of training strategies (e.g., physical materials, people, and symbols) were identified as training strategies teachers used to foster master in learning newjob skills, but the use of physical materials was most common and most effective (52.2%). Conversely, the least effective training strategy was related to the use of symbols (numbers/words).
Parents indicated that the skills taught in school resulted in vocational opportunities after graduation unless their child needed Adult Services and additional vocational training.

More parents indicated some measure of failure or disconnect between the skills taught in school and vocational job opportunities after graduation than those who did not identify any failures.
Job coaches are underutilized in vocational training.
Parents are expected to play a support role during the transition to adult services.
Parents are able to identify at least three vocational training tasks practiced in schooland observed after graduation supporting the effectiveness of this training.
Most parents identified field trips aligned with their child’s vocational interests.However, there is an opportunity to improve field trip alignment as 20% of parentsindicated that field trips were not beneficial or in the budget.

Research Question 4 Results. The themes generated supported hypothesis 4 whereby parents of children with autism who graduated from a school in New York State will report common themes withrespecttothe efficacyoftheteachingmethodsofeducatorsrelatedtovocationalskillsand job readiness. The negative experiences revolved around the majority of parents (60%) identifying some measure of failure or disconnect between skills taught in school and vocational job opportunitiesafter graduation.Asignificantportionofparents(33.3%)indicatedtheirchilddid not have a job coach. And the majority of parents indicated the least effective training strategy was related to the use of symbols (numbers/words).

This study’s results that supported hypothesis 4 are similar to those reported by Wellner, (2012), Mueller and Buckley (2014), and Keenan et al. (2010) whereby parents of children with autism generally reported at least some negatively perceived vocational skills and job readiness IEP teacher and administrator strategies. Given the wide range of cognitive and behavioral

deficits associated with the autistic spectrum, the results of this study hypothesis are directly related to hypothesis 2 whereby the “one size fits all” approach does not work and is perceived negatively by parents. One aspect that may be beyond the direct control of teachers and administrators being able to improve these negative experiences and perceptions is likely tied to availability of personnel, funding, and resources. Job coaches in particular are not 100% available or free for obvious reasons. Consequently, state or federal Congressional appropriation and funding would likely be the most effective way to assure that availability of job coaches meets the individual demand by children with autism as they transition out of K-12 education. This proposed solution also offers one of the serious challenges.

Despite the negative themes above, more positive experiences regarding the efficacy of teaching methods related to vocational skills and job readiness were noted. All parents identified various, but meaningful vocational skills (e.g., ground keeping/gardening, laundry tasks, food services tasks, housekeeping tasks, etc.) that fostered creativity and a sense of accomplishment. Physical materials were identified as the most commonly used and effective training strategy teachers used to foster mastery in learning new job skills. Parents also reported playing a support role during the transition to adult services (e.g., filling out applications, accompaniment to interviews, meeting with school officials and job coaches, identifying employment opportunities to match interests/capabilities). The majority (66.7%) of parents had a job coach involved in vocational training. Unless their child needed Adult Services and additional vocational training, parents indicated that the skills taught in school resulted in vocational opportunities after graduation.

Research Question 5. What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York State with respect to the efficacy of the teaching methods the educators related to successful integration in the community?

Hypothesis 5. Parents of children with autism who graduated from a school in New York State will report common themes with respect to the efficacy of the teaching methods the educators related to successful integration in the community.

Interview Question 18a. What are your perceptions about the recreation and leisure activities that your child was exposed to by educators in the wider community?

The majority (n = 11) of participants indicated that recreation and leisure activities were helpful or beneficial to their child. The remaining participants (n = 4) indicated that recreation and leisure activities were not provided enough to be helpful or beneficial to their child. Open coding results are published in Table 25.

Table 25

Interview Question 18a Open Coding

Participant Phrases Used Helpful/Beneficial

P1, P3, P4 P5, P7, P8 P9, P11, P12 P13, P15

Recreation and leisure activates were very helpful
Recreational activities offered were excellent
Bowling, movies, dances, and shopping, my son really enjoyed them
It was something my son looked forward to and got excited about every week They were good

Not Helpful/Not Beneficial

P2, P6, P10 My perception is that they were cheated

P14

They did not happen often enough, maybe once a month

Axial and selective coding are combined given the uniformity and majority (73.3%) of parental responses indicated that recreation and leisure activities were helpful or beneficial to their child, thereby supporting the effectiveness. The remaining parents indicated that recreation and leisure activities were not provided enough to be helpful or beneficial to their child which provides an opportunity for improvement.

Interview Question 18b. Please describe two examples.

Responses were omitted from Participant 2, 6, 10, and 14 since they did not indicate any benefit of recreation and leisure activities, nor did they offer examples. The remainder of participants (n = 11) provided a very detailed and diverse list of recreation and leisure activities that were provided and determined beneficial for their child. Open coding results are published in Table 26.

Table 26

Interview Question 18b Open Coding

Participant Phrases Used

P1, P3, P4 P5, P7, P8 P9, P11, P12 P13, P15

Bowling, movies, dances, and shopping
Bike-riding
Trips to the Dollar Store
Trips to the aquarium, zoo, walking/playing in parks/playground Community pool and library

Movies, arcade Museum, pottery place Restaurants

Axial and selective coding are combined given the diversity of parental responses that indicated various recreation and leisure activities were helpful or beneficial to their child such as bowling, movies, dances, shopping, bike-riding, walking/playing in parks/playgrounds, and trips to the aquarium, zoo, pool, library, arcade, museum, restaurants, etc.

Interview Question 19. How do you feel about the social skills your child developed through community activities that were practiced after graduation?

The majority (n = 10) of participants indicated that social skills developed through community activities were practiced after graduation with positive attributes and feelings. The remaining participants (n = 5) associated negative attributes and feelings with the development of social skills through community activities. Open coding results are published in Table 27.

Table 27

Interview Question 19 Open Coding

Participant Phrases Used Positive

P1, P3, P5 P6, P7, P9 P11, P12 P13, P15

P2, P4, P8 P10, P14

Invaluable and important
Left my son well-prepared
I attribute my son’s sociability and ability to communicate
I think the field trips helped improve my daughter’s social skills
I know he is a better person for it
I’m grateful my son got the opportunity to participate in these activities

Negative

I’m not sure his social skills were improved all that much
The activities were so limited, I can’t say they had a great part in encouraging my daughter to develop her social skills

Axial and selective coding are combined given the uniformity and majority (66.7%) of parental responses indicated that the development of social skills through community activities were associated with positive feelings and attributes, thereby supporting the effectiveness. The remaining parents indicated that the development of social skills through community activities were associated with negative feelings or attributes which provides an opportunity for improvement.

Interview Question 20. What evidence do you have that these scripted stories aided your child’s learning about real world social situations?

Responses were omitted from Participant 1, 5, 9, and 13 as they were not able to provide any evidence that scripted stories were used or aided their child’s learning about real world social situations. The remaining (n = 14) provided specific evidence of how scripted stories were used to aid their child’s learning about real world social situations. Open coding results are published in Table 28.

Table 28

Interview Question 20 Open Coding

Participant Phrases Used

P2, P3, P4 Carol Gray is great. She’s an excellent writer. She devised creative stories P6, P7, P8 that taught my child how to regulate their emotions
P10, P11, P12 The stories were visual and to the point and as a result, my son was able to P14, P15 internalize its lessons

My son learned how to do laundry through a scripted story of a boy loading the washing and putting the detergent in the washer and pressing the buttons
My evidence that he internalized these scripted stories is the fact that he does laundry every day for his job

The scripted stories really helped to show my daughter the behavioral expectations we had for her while she was at school and home
This is how we taught her kitchen safety
The stories were good when my son needed to be redirected

The stories helped define for her how to go about communicating and getting what she wanted
Scripted stories helped encourage my daughter to use her words, instead of making noises

No Evidence/Not Applicable

P1, P5, P9 I don’t have hard evidence
P13 Scripted stories weren’t a main part of my son’s education

Axial and selective coding are combined given the given the uniformity of parental responses related to the evidence provided about how scripted stories aided their child’s learning about real world social situations with emphasis on behavioral improvements and social appropriateness. The remaining parents (26.7%) were not able to provide any evidence that scripted stories were used or aided their child’s learning about real world social situations which provides an opportunity for improvement.

Interview Question 21. Is there anything else you would like to add related to your perceptions, attitudes, and experiences as your child transitioned from the K-12 system into adult services?

There was a combination of positive and negative additions the participants volunteered at the conclusion of the interview. More negative comments were noted (n = 9) than positive ones (n = 6). The negative comments service as opportunities for program improvement as related to the previous analysis of the aforementioned 20 interview questions. The comments are not however intended to be coded or generate thematic answers as it is not directly related to the research question 4. Rather, these comments are simply reflective in nature. Common phrases for positive and negative categories are published in Table 29.

Table 29

Interview Question 21 Open Coding

Participant Phrases Used Positive

P1, P7, P12 It has been a long, but worthwhile journey P13, P14, P15 I am grateful for the school system

Ultimately grateful that everything worked out and my daughter is in a residential program that is a match for her

Negative

P2, P3, P4 The training should start well before they age out, not when they are going to P5, P6, P8 adult services, where now they are behind in learning
P9, P10, P11 IEPs are supposed to be individualized, not one-size-fits all

Parents should have more input in their child’s education and training that teachers and administrators actually follow through with instead of ignoring
The special education budget needs to be adequate to provide the services each child needs
There are a lot of waiting lists and it took us a long time to place my child into adult services even after graduation
The school system is sincerely flawed. They will not prepare your child 100% for going out into the greater world out there
I’ve had many frustrations with the school system
I am very disillusioned with the K-12 system

The following list of thematic answers to Research Question 5 include:

Recreation and leisure activities are predominately viewed as helpful or beneficial,but opportunities for improvement are noted.
Recreation and leisure activities viewed as helpful or beneficial were highlydiversified and included examples like bowling, movies, dances, shopping, bike-

riding, walking/playing in parks/playgrounds, and trips to the aquarium, zoo, pool,

library, arcade, museum, restaurants, etc.

Social skills developed through community activities and demonstrated aftergraduation were predominately viewed by positive attributes, but opportunities forimprovement are noted.
Most parents identified evidence of how scripted stories aided their child’s learningabout real world social situations. However, there is an opportunity to improve the utilization of scripted stories as 26.7% of parents indicated that scripted stories were not utilized or noteworthy.

Research Question 5 Results. The themes generated supported Hypothesis 4 whereby parents of children with autism who graduated from a school in New York State reported common themes with respect to the efficacy of the teaching methods the educators related to successful integration in the community. The majority (73.3%) of parental responses indicated that recreation and leisure activities (e.g., bowling, movies, dances, shopping, bike-riding, walking/playing in parks/playgrounds,andtripstotheaquarium,zoo,pool,library,arcade,museum,restaurants, etc.) were helpful or beneficial to their child, thereby supporting the effectiveness. The majority (66.7%) of parental responses indicated that the development of social skills through community activities were associated with positive feelings and attributes, thereby supporting the

effectiveness as well as the use of scripted stories utilized for their child’s learning about real world social situations.

This study’s results that supported hypothesis 5 run contrary to those reported by Wellner, (2012), Mueller and Buckley (2014), and Keenan et al. (2010) whereby parents of

children with autism generally reported at least some negatively perceived community integration (i.e., recreation and leisure activities) IEP teacher and administrator strategies. While some improvement can be made in regard to optimizing positive parental perceptions regarding community integration (i.e., recreation and leisure activities), the majority reported that this area of the IEP process and outcomes was consistently higher than other areas (e.g., parental collaboration barriers, academic and behavioral strategies, and vocational skills/job readiness).

While this area of the IEP process and experience was mostly positive, specific recreation and leisure activities still have significant room for improvement. Despite the majority of parents indicating positive experiences with teaching activities (e.g., recreation and leisure activities, community activities, and scripted stories) related to community integration, 26.7% to 33.3% indicated the opposite which provides a significant area for improvement.

According to Bacon and Causton-Theoharis (2013) and Trainor (2012), parental input based on the perceptions, attitudes, and experiences is the basis by which to make appropriate modifications and recommended improvements to meet IEP goals, comply with IDEIA and NCLB requirements for the education of K-12 students with autism. Consequently, the following summary prioritizes such modifications and recommendations therein.

In summary, the results of this study indicated that the top three negatively perceived (i.e., deficient) areas related to parental perceptions, attitudes, and experiences of parents of young adults between the ages of 18 and 22 who have graduated from the K-12 system of education in New York State are the areas in most need of improvement and intervention by educators and administrators alike that include:

IEP collaboration barriers between parents and teachers/administrators.
Academic and behavioral teaching strategies.

3. Vocational skill and job readiness teaching methods.
In addition, the results of this study indicated that while generally positively perceived (i.e.,

proficient) areas related to parental perceptions, attitudes and experiences of parents, there are two areas that are in least need of improvement and can create the foundation on which to build success that include:

Readiness into the adult world.
Community integration (i.e., recreation and leisure activities).Discussion

Q1. What can be learned from this study?

A1. There are many strengths, weaknesses, and opportunities associated with K-12 education in New York State for students with autism as they transition into adult settings and vocations. Among the strengths noted, positively perceived IEP collaboration experiences included having well received input to school professionals in the cases where teachers were proactive and receptive in nature. Parents also cited more IEP non-compliance than compliance. Various examples of IEP goal mastery (e.g., portfolios, behavioral improvement, curriculum ability improvements in math, reading, verbal, social, and communication skills) were noted by parents and more IEP goals were completed than in-progress particularly for various practical vocational and avocational activities and abilities where there was more active and receptive parental input. In addition, K-12 programming was largely successful with regard to preparing students with autism skills to succeed regarding readiness into the adult world (i.e., job preparation and community integration). The majority of experiences were positive regarding (73.3%) FBA or PSP effectiveness in de-escalating challenging behavior; and most (86.7%) indicated that the plan to control and/or replace negative behavior was appropriate with various

examples provided. The majority (73.3%) of parental responses indicated that recreation and leisure activities (e.g., bowling, movies, dances, shopping, bike-riding, walking/playing in parks/playgrounds, and trips to the aquarium, zoo, pool, library, arcade, museum, restaurants, etc.) were helpful or beneficial to their child, thereby supporting the effectiveness. The majority (66.7%) of parental responses indicated that the development of social skills through community activities were associated with positive feelings and attributes, thereby supporting the effectiveness as well as the use of scripted stories utilized for their child’s learning about real world social situations.

Among the weaknesses noted, negatively experienced academic and behavioral strategies were related to the IEP being “one size fits all” for at least one area which runs contrary to the IEP title, purpose, and goals. Parents also reported that teachers underutilized a variety of teaching styles to match the variety of learning styles of their children. In addit ion, parental active participation and input into IEPs, Positive Support Plans, Functional Behavior Plans, and Transition Plans was only solicited by teachers about half of the time. Despite being largely positive, 60% of parents identified some measure of failure or disconnect between skills taught in school and vocational job opportunities after graduation. A significant portion of parents (33.3%) indicated their child did not have a job coach.

Some opportunities for improvement emerged from the study results. Specifically, there are many specific adult world readiness skills that could be improved with additional resources, namely mentors or job coaches for every IEP student. Opportunities for more IEP goal completion are also possible with a more collaborative process between parents and teachers involved.

Q2. What can parents learn from the study?

A2. In order to optimize their child’s readiness into the adult world and community integration abilities, parents must be actively involved with teachers and administrators throughout the educational process (i.e., input into IEPs, Positive Support Plans, Functional Behavior Plans, and Transition Plans). Parents cannot sit idly by and expect their child’s needs will be met through IEP programming. Parents cannot assume that if their input is needed, that teachers will ask for it given the 50% of respondents who indicated teachers did not solicit any input. Parents should also provide active support to their children during the transition to adult services (e.g., filling out applications, accompaniment to interviews, meeting with school officials and job coaches, identifying employment opportunities to match interests/capabilities).

Q3. What can educators learn from the study?

A3. IEP collaboration was, in general, perceived negatively by parents. Specifically, parents did not report feeling their input was considered or included by teachers in the IEP process (input into IEPs, Positive Support Plans, Functional Behavior Plans, and Transition Plans) nearly 50% of the time. Similarly, parents did not feel the IEP process was “individualized”. Rather, parents felt the IEP process was standardized and “one-size-fits all”.

Educators involved in the IEP process should convey and confirm all parental input. If parental input does not apply to the specific IEP process, educators should convey rationale as to why it does not apply. Educators should also consider setting more realistic reading/writing/math and social skills for students with autism given the outcomes of this study that indicated most of these goals were not met at the time of transition out of K-12 education. Interpersonal and communication skills are at the forefront of these recommendations to improve collaboration and should be supported by administration. In addition, teachers should be adept in multiple teaching

styles and strategies to match with the variety of learning styles and strategies of the K-12 students served by the IEP programs.

Teachers should continue to emphasize teaching adult world readiness skills that included ground keeping/gardening, laundry tasks, food services tasks, housekeeping tasks, and others that fostered creativity and a sense of accomplishment. Physical materials were identified as the most commonly used and effective training strategy teachers used to foster mastery in learning new job skills by parents. Parent education and encouragement in active support roles during the transition to adult services (e.g., filling out applications, accompaniment to interviews, meeting with school officials and job coaches, identifying employment opportunities to match interests/capabilities) should also be included by teachers.

Q4. What can administrators learn from the study?

A4. Administrators should note the weaknesses and opportunities associated with this study and advocate for training (e.g., communication, active listening, transparency, etc.) of special education teachers involved in the IEP processes for K-12 students with autism. Moreover, administrators should be involved in the IEP processes and liaise between parents and teachers where there may be confusion or conflict. Administrators should require that teachers actively solicit parental input into the IEP processes (i.e., input into IEPs, Positive Support Plans, Functional Behavior Plans, and Transition Plans). Administrators should also advocate for teacher training in multiple teaching styles to match the variety of learning styles by students served.

Q5. What changes to regulations are indicated from the results of this study?

A5. In order to meet the expectations of the IDEIA and NCLB requirements for the education of K-12 students with autism, the IEP process must be optimized and goals achieved

before students transition into adult services and adult world readiness skills. Regulation
advocacy should therefore be based on the weaknesses and opportunities identified in this study. Namely, the mandate that every K-12 student with an IEP be assigned a job coach/mentor to help with the transition from school to the workplace. Another mandate that would help facilitate IEP optimization would be the requirement for case managers to oversee the entire IEP process and ensure standardization of best practices are being met in addition to authorization for additional resource provision as needed.
Summary. The study investigated the personal perceptions, attitudes, and experiences of parents who had an adult child on the Autistic Spectrum, age 18-22, and transitioned out of the K-12 New York State school system. Personal interviews yielded information about common experiences, positiveandnegative,inregardtofiveIEPconstructs(e.g.,collaborationbarriers, academic, behavioral, vocational, and community integration).

This study advances the field of K-12 special education for teachers and administrators by identifying common positive attributes and building upon them. Conversely, negative attributes provide opportunities to improve the IEP system specifically for children on the Autistic Spectrum. Minimal qualitative research specific to K-12 children on the Autistic Spectrum by Balan (2010), Nickels (2010), and Meade (2011) helped frame the study foundation. However, no qualitative research for this population was published at this time and specific to the New York State school system.

The study results showed that positive experiences with IEP collaboration, vocational, and community integration skills stemmed from teachers who were proactive and receptive. Positive experiences were noted for academic improvements particularly in math, reading, and

language skills. Positive experiences were noted in behavioral improvement. The study results showed that negative experiences with IEP collaboration stemmed from non-compliance or non- individualization with the IEP by teachers. The other primary negative experience was in regard to a failure, or disconnect, between skills taught in school and vocational job opportunities after graduation.

This study is important because there were clear weaknesses, and opportunities for improvement associated with K-12 education in New York State for students with autism as they transition into adult settings and vocations. Teachers and administrators involved in the special education of K-12 children on the Autistic Spectrum should work on being proactive and receptive with parents and take time to individualize IEP goals and comply with the IEP plan. In addition, teachers and administrators have an opportunity to better align skills taught in school as related to vocational job opportunities after graduation. Mentors and job coaches were specific and consistent recommendations by parents.

From this study, we can conclude that in order to meet the expectations of the IDEIA and NCLB requirements for the special education of K-12 students on the Autistic Spectrum in New York State; teachers and administrators should establish mutual expectations between parents and teachers/support staff; attain agreement in teaching methods between parents and teachers/support staff; emphasizing the importance of parental input by teachers/leadership/support staff and remove barriers to collaboration between parents, students, and teachers/support staff in order for students with disabilities (autism) to enjoy an optimal quality of life.

I. References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author.

Armstrong, J. (2012). Parents raising adolescents diagnosed with low-functioning autism and their perceptions of the level and quality of support they receive. Edith Cowan University School of Psychology and Social Science Research Online. Edith Cowan University, Perth, Western Australia. Retrieved from http://ro.ecu.edu.au/cgi/viewcontent.cgi?article=1024&context=spsyc_pres

Aron, L., & Loprest, P. (2012). Disability and the education system. Future Child, 22(1), 97-122.

Ashburner, J., Ziviani, J., & Rodger, S. (2010). Surviving in the mainstream: Capacity of children with autism spectrum disorders to perform academically and regulate their emotions and behavior at school. Research in Autism Spectrum Disorders, 4(1), 18-27. doi:10.1016/j.rasd.2009.07.002

Avvisati, F., Besbas, B., & Guyon, N. (2011). Parental involvement in school: A literature review. Revue d’économie politique, 120(5), 759-778.

Bacon, J. K., & Causton-Theoharis, J. (2013). ‘It should be teamwork’: a critical investigation of school practices and parent advocacy in special education. International Journal of Inclusive Education, 17(7), 682-699. doi:10.1080/13603116.2012.708060

Balan, R. M. (2010). The construct of trust: Parental perceptions of the individualized education plan process. Published doctoral dissertation. University of Phoenix.

Baquedano-López, P., Alexander, R. A., & Hernandez, S. J. (2013). Equity Issues in Parental and Community Involvement in Schools What Teacher Educators Need to Know. Review of Research in Education, 37(1), 149-182.

Bellini, S., Henry, D., & Pratt, C. (2011). From intuition to data: Using logic models to measure professional development outcomes for educators working with students on the autism spectrum. Teacher Education and Special Education: The Journal of the Teacher Education Division of the Council for Exceptional Children, 34(1), 37-51. doi:1177/0888406410384153

Blake, J., & Berner, J. (2014). Extenuating circumstances: Autism awareness. South Dakota Medicine: The Journal of the South Dakota State Medical Association, 67(4), 163, 165.

Blaxill, M. F. (2004). What’s going on? The question of time trends in autism. Public Health Reports, 119(6), 536-551. doi:10.1016/j.phr.2004.09.003

Blecker, N. S., & Boakes, N. J. (2010). Creating a learning environment for all children: are teachers able and willing? International Journal of Inclusive Education, 14(5), 435-447.

Brock, M. E., Freuler, A., Baranek, G. T., Watson, L. R., Poe, M. D., & Sabatino, A. (2012). Temperament and sensory features of children with autism. Journal of Autism and Developmental Disorders, 42(11), 2271-2284. doi:10.1007/s10803-012-1472-5

Carter, E., Swedeen, B., Cooney, M., Walter, M., & Moss, C. K. (2012). “I don’t have to do this by myself?” Parent-led community conversations to promote inclusion. Research and Practice for Persons with Severe Disabilities, 37(1), 9-23.

Caspe, M., Lopez, M. E., Chu, A., & Weiss, H. B. (2011, May). Teaching the teachers: Preparing educators to engage families for student achievement. Harvard Family Research Project Issue Brief. Retrieved from http://www.metrostatecue.org/files/ mscd//Documents/Community%20Overview/Harvard%20Family%20Research%20Proje ct_Teaching%20the%20Teachers.pdf

Center for Disease Control, 2012.
Charman, T., Jones, C. R. G., Pickles, A., Simonoff, E., Baird, G., & Happé, F. (2011). Defining

the cognitive phenotype of autism. Brain research, 1380, 10-21

Cheng, T. L., & Solomon, B. S. (2014). Translating Life Course Theory to clinical practice to address health disparities. Maternal and Child Health Journal, 18(2), 389-395. doi:10.1007/s10995-013-1279-9

Chiang, H. M., Cheung, Y. K., Hickson, L., Xiang, R., & Tsai, L. Y. (2012). Predictive factors of participation in postsecondary education for high school leavers with autism. Journal of autism and developmental disorders, 42(5), 685-696.

Coury, D. L., Swedo, S. E., Thurm, A. E., Miller, D. T., Veenstra-VanderWeele, J. M., Carbone, P. S., & Taylor, J. L. (2014). Treating the Whole Person With Autism: The Proceedings of the Autism Speaks National Autism Conference. Current problems in pediatric and adolescent health care, 44(2), 26-47.

Coombes, L. & Wratten, A. (2007). The lived experience of community mental health nurses working with people who have dual diagnosis: A phenomenological study. Journal of Psychiatric and Mental Health Nursing, 14, 382–392

Crosland, K., & Dunlap, G. (2012). Effective strategies for the inclusion of children with autism in general education classrooms. Behavior modification, 36(3), 251-269.

Dawson, G. (2013). Dramatic increase in autism prevalence parallels explosion of research into its biology and causes. JAMA psychiatry, 70(1), 9-10.

Denney, S. C., & Daviso, A. W. (2012). Self-determination: A critical component of education. American Secondary Education, 40(2), 43-51.

Denzin, N. K., & Lincoln, Y. S. (2005). The Sage handbook of qualitative research (3rd ed.). Thousand Oaks, CA; Sage Publications.

Dorfman, E. (2013). Naturalism, Objectivism and Everyday Life. Royal Institute of Philosophy Supplement, 72, 117-133.

DeBray-Pelot, E., & McGuinn, P. (2009). The New Politics of Education Analyzing the Federal Education Policy Landscape in the Post-NCLB Era. Educational Policy, 23(1), 15-42.

Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C., Fombonne, E. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160-179. doi:10.1002/aur.239

Engel, S. M., & Daniels, J. L. (2011). On the complex relationship between genes and environment in the etiology of autism. Epidemiology, 22(4), 486-488. doi:10.1097/EDE.0b013e31821daf1c

Fan, W., & Williams, C. M. (2010). The effects of parental involvement on students’ academic

self‐efficacy, engagement and intrinsic motivation. Educational Psychology, 30(1), 53- 74.

García‐Villamisar, D. A., & Dattilo, J. (2010). Effects of a leisure programme on quality of life and stress of individuals with ASD. Journal of Intellectual Disability Research, 54(7),

611-619.

Gardiner, E., & Iarocci, G. (2012). Unhappy (and happy) in their own way: A developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities, 33(6), 2177- 2192.

Gerhardt, P. F., & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41(1), 37-45

Giles, D. (2009). Being in the world of celebrity: The phenomenology of fame. Journal of Phenomenological Psychology, 40, 178-210.

Ginsburg, F., & Rapp, R. (2013). Entangled ethnography: Imagining a future for young adults with learning disabilities. Social Science & Medicine, 99, 187-19.

Giorgi, A. (Ed.). (1985). Phenomenology and psychological research. Pittsburgh, PA: Duquesne University Press.

Gomot, M., & Wicker, B. (2012). A challenging, unpredictable world for people with autism spectrum disorder. International Journal of Psychophysiology, 83(2), 240-247.

Gubrium, J., & Holstein, J. (1997). The new language of qualitative methods. New York, NY: Oxford University Press.

Hayes, G. R., Hirano, S., Marcu, G., Monibi, M., Nguyen, D. H., & Yeganyan, M. (2010). Interactive visual supports for children with autism. Personal and ubiquitous computing, 14(7), 663-680.

Hendricks, D. (2010). Employment and adults with autism spectrum disorders: Challenges and strategies for success. Journal of Vocational Rehabilitation, 32(2), 125-134.

Hetherington, S. A., Durant-Jones, L., Johnson, K., Nolan, K., Smith, E., Taylor-Brown, S., & Tuttle, J. (2010). The lived experiences of adolescents with disabilities and their parents in transition planning. Focus on Autism and Other Developmental Disabilities, 25(3), 163-172. doi:10.1177/1088357610373760

Holmboe, K., Gliga, T., Mercure, E., Hudry, K., Charman, T., Baron-Cohen, S., & Johnson, M. H. (2012). Social and attention factors during infancy and the later emergence of autism characteristics-in Braddick, O.; Atkinson, J.; Innocenti, GM (Eds.)-. Gene Expression to.

Individuals with Disabilities Education Act (IDEA), P.L. No. 108-446 (2004). Individuals with Disabilities Education Act, 20 U.S.C. § 1414(d)(1)(A) and (d)(6) (2004).

Jobber, D., Mirza, H., & Wee, K.H. (1991). Incentives and response rates to cross-national business surveys: A logit model analysis. Journal of International Business Studies, Fourth Quarter, 711-721.

Joronen, K., & Rantanen, A. (2014). Family life cycle stages. In A.C. Michelos (Ed.), Encyclopedia of quality of life and well-being research (pp. 2186-2188). New York, NY: Springer. doi:10.1007/978-94-007-0753-5_1004

Jurena, A. C., Pimental, L.C., Cordeiro, S.C., & Nepomuceno, A.G. (2006). Disclosing the makingofphenomenologicalresearch:Settingfreethemeaningsofdiscourse. FQS Forum, 7(2), 111-117,

Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390-397. doi:10.1111/j.1468-3148.2010.00555.x

King, B. H., & Lord, C. (2011). Is schizophrenia on the autism spectrum? Brain research, 1380, 34-41.

Langan, M. (2011). Parental voices and controversies in autism. Disability and Society, 26(2), 193-205. doi:10.1080/09687599.2011.544059

Lareau, A., & Muñoz, V. L. (2012). “You’re Not Going to Call the Shots” Structural Conflicts between the Principal and the PTO at a Suburban Public Elementary School. Sociology of Education, 85(3), 201-218.

ADULT CHILDREN ON THE AUTISTIC SPECTRUM

LaRocque, M., Kleiman, I., & Darling, S. M. (2011). Parental involvement: The missing link in school achievement. Preventing School Failure: Alternative Education for Children and Youth, 55(3), 115-122. doi:10.1080/10459880903472876

Lee, R., & Sturmey, P. (2014). The effects of script-fading and a Lag-1 schedule on varied social responding in children with autism. Research in Autism Spectrum Disorders, 8(4), 440- 448. doi:10.1016/j.rasd.2014.01.003

Leedy, P. D., & Ormrod, J. E. (2009). Practical research: Planning and design (9th ed.). Upper Saddle River, NJ: Prentice Hall.

Lichtman, M. (2010). Qualitative research in education: A user’s guide. Thousand Oaks, CA: Sage.

Lord, C. E. (2010). Autism: From research to practice. American Psychologist, 65(8), 815. doi:10.1037/0003-066X.65.8.815

Losh, M., & Gordon, P. C. (2014). Quantifying Narrative Ability in Autism Spectrum Disorder: A Computational Linguistic Analysis of Narrative Coherence. Journal of autism and developmental disorders, 1-10.

Mayes, S. D., Calhoun, S. L., Aggarwal, R., Baker, C., Mathapati, S., Molitoris, S., & Mayes, R. D. (2013). Unusual fears in children with autism. Research in Autism Spectrum Disorders, 7(1), 151-158. doi:10.1016/j.rasd.2012.08.002

Matson, J. L., Kozlowski, A. M., Worley, J. A., Shoemaker, M. E., Sipes, M., & Horovitz, M. (2011). What is the evidence for environmental causes of challenging behaviors in persons with intellectual disabilities and autism spectrum disorders? Research in Developmental Disabilities, 32(2), 693-698. doi:10.1016/j.ridd.2010.11.012

Mawdsley, R. D., & Osborne Jr, A. G. (2013). When Does the Failure to Implement Terms of an IEP Result in the Denial of a FAPE? Education Law Reporter, 296, 1.

McCurdy, E. E., & Cole, C. L. (2014). Use of a Peer Support Intervention for Promoting Academic Engagement of Students with Autism in General Education Settings. Journal of autism and developmental disorders, 44(4), 883-893.

McLeskey, J., Landers, E., Williamson, P., & Hoppey, D. (2012). Are We Moving Toward Educating Students With Disabilities in Less Restrictive Settings? The Journal of Special Education, 46(3), 131-140.

McLeskey, J., Landers, E., Hoppey, D., & Williamson, P. (2011). Learning disabilities and the LRE mandate: An examination of national and state trends. Learning Disabilities Research & Practice, 26(2), 60-66.

Meade, D. L. (2011). Teacher and parent perspectives on proactive parental involvement with students with Autism. Published doctoral dissertation. Walden University, Minneapolis.

Meek, S.E., Lemery-Chalfant, K., Jahromi, L.B., & Valiente, C. (2013). A review of gene– environment correlations and their implications for autism: A conceptual model. Psychological Review, 120(3), 497. doi:10.1037/a0033139

Merriam. S.B. (1998). Qualitative research and case study applications in education. San Francisco, CA: Jossey-Bass.

Mueller, T. G., & Buckley, P. C. (2014). Fathers’ experiences with the special education system: The overlooked voice. Research and Practice for Persons with Severe Disabilities, 39(2), 119-135. doi:10.1177/154079691454454

Mueller, T. G., & Carranza, F. (2011).An examination of special education due process hearings. Journal of Disability Policy Studies, 1044207310392762.

Muijs, D. (2004). Doing quantitative research in education. Thousand Oaks, CA: Sage.
Nagy, W., & Townsend, D. (2012). Words as tools: Learning academic vocabulary as language

acquisition. Reading Research Quarterly, 47(1), 91-108.
Neuman, W.L. (2005). Social research methods: Qualitative and quantitative approaches (5th

ed.). Boston, MA: Allyn and Bacon.

New York Education Department. (2012). State school system demographics. New York, NY: New York Education Department

Nickels, P. A. (2010). Educational interventions for children with Autism Spectrum Disorders: Perceptions of parents and teachers in a Northeast Tennessee school system. Published doctoral dissertation. East Tennessee State University, Johnson City.

Nuance Software. (2012). Dragon transcription version 12. Nuance Software NVivo9. (2011). Software for qualitative analysis. Retrieved from

http//www.qsrinternational.com#tab_you

No Child Left Behind (NCLB) Act of 2001, Pub. L. No. 107-110, & 115, Stat. 1425 (2002).

Parks, D., & Polotzola, B. (2012). Sharing Effective Strategies Between Home and School.

Patton, M. Q. (2002). Qualitative research & evaluation methods. Thousand Oaks, CA: Sage Publications

Plumb, J. C. (2011). The impact of social support and family resilience on parental stress in families with a child diagnosed with an autism spectrum disorder (Doctoral thesis). Philadelphia, PA: University of Pennsylvania.

Rehm, R. S., Fisher, L. T., Fuentes-Afflick, E., & Chesla, C. A. (2013). Parental Advocacy Styles for Special Education Students During the Transition to Adulthood. Qualitative health research, 1049732313505915.

Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, R., & Zhang, D. (2010).Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55(2), 139-150. doi:10.1037/a0019473

Richards, L. (1999). Using NVivo in qualitative research. Thousand Oaks, CA: Sage Publications.

Rotheram‐Fuller, E., & MacMullen, L. (2011). Cognitive‐behavioral therapy for children with autism spectrum disorders. Psychology in the Schools, 48(3), 263-271.

doi:10.1002/pits.20552

Saint-Georges, C., Mahdhaoui, A., Chetouani, M., Cassel, R. S., Laznik, M. C., Apicella, F., & Cohen, D. (2011). Do parents recognize autistic deviant behavior long before diagnosis? Taking into account interaction using computational methods. PloS one, 6(7), e22393.

Saleh, M. (2014). GEORGE JAY JOSEPH EDUCATION LAW WRITING AWARD WINNER: Public Policy, Parole Evidence and Contractual Equity Principles in Individualized Education Programs: Marking the” Four Corners” of the IEP to Mitigate Unequal Bargaining Power between Parent-Guardians and School Districts. JL & Educ., 43, 367- 455.

Schriber, R.A., Robins, R.W., & Solomon, M. (2014).Personality and self-insight in individuals with autism spectrum disorder. Journal of Personality and Social Psychology, 106(1), 112-130. doi:10.1037/a0034950

Sewell, T. (2012). Are we adequately preparing teachers to partner with families? Early Childhood Education Journal, 40(5), 259-263.

Shifrer, D. (2013). Stigma of a label: Educational expectations for high school students labeled with learning disabilities. Journal of Health and Social Behavior, 54(4), 462-480. doi:10.1177/0022146513503346

Stabell, A., & Naden, D. (2006). Patients dignity in a rehabilitative ward: Ethical challenges for nursing staff. Nursing Ethics, 13(3), 236-248

Staples, K. E., & Diliberto, J. A. (2010).Guidelines for successful parent involvement working with parents of students with disabilities. Teaching Exceptional Children, 42(6), 58-63.

Sumbera, M. J., Pazey, B. L., & Lashley, C. (2014). How Building Principals Made Sense of Free and Appropriate Public Education in the Least Restrictive Environment. Leadership and Policy in Schools, 13(3), 297-333.

Trainor, A. A. (2010a). Diverse approaches to parent advocacy during special education home- school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34-47. doi:10.1177/0741932508324401

Trainor, A. A. (2010b). Reexamining the promise of parent participation in special education: An analysis of cultural and social capital. Anthropology and Education Quarterly, 41(3), 245-263. doi:10.1111/j.1548-1492.2010.01086.x

Valerie, L. M., & Foss-Swanson, S. (2012). Hey! Guess What I Did in School Today: Using Family Message Journals to Improve Student Writing and Strengthen the School–Home Partnership. TEACHING Exceptional Children, 44(3), 40-48.

Walker, J. M., Shenker, S. S., & Hoover-Dempsey, K. V. (2010). Why do parents become involved in their children’s education? Implications for school counselors. Professional School Counseling, 14(1), 27-41.

Wellner, L. (2012). Building Parent Trust in the Special Education Setting Leadership, 41(4), 16- 19.

Whiting, C., & White Ford, G. (2005). Phenomenological research: An exploration of conceptual, theoretical, and practical issues. https://www.scribd.com/doc/79703987/Wilding-C-White-Ford-G-2005- Phenomenological-Research-an-Exploration-of-Conceptual-Theoretical-And-Practical- Issues

Wong, V. C. N., & Chu, V. L. Y. (2010). Autism spectrum disorder and traditional Chinese medicine (acupuncture). Increasing Awareness of Child and Adolescent Mental Health, 18, 227.

Woolfenden, S., Sarkozy, V., Ridley, G., & Williams, K. (2012). A systematic review of the diagnostic stability of autism spectrum disorder. Research in Autism Spectrum Disorders, 6(1), 345-354.

Yin, R. (2011). Case study research design and methods third edition. Thousand Oaks, CA: Sage Publications.

Young, E. (2010). Challenges to conceptualizing and actualizing culturally relevant pedagogy: How viable is the theory in classroom practice? Journal of Teacher Education, 61(3), 248-260.

Young, H., Rowan, J., Pardew, M., Sanford, T., Falco, R., & Reinmuth, J. (2011). Improving outcomes for children and youth with autism. Autism Partnership Program: Parents and Educators Partnering to Improve Outcomes for Children and Youth with Autism. (Handout 1-1 Improving Outcomes). Retrieved from http://www.autismstudy.pdx.edu/resources/parent /mods/mod1/module1_handout1-1_what_parents_need_to_know.pdf

Zirkel, P. (2011). What does the law say? TEACHING Exceptional Children, 43(3), 65-67.

II. Appendix
Appendix A: Annotated Bibliography

Beamish, W., Meadows, D., & Davies, M. (2012).Benchmarking teacher practice in Queensland Transition programs for youth with intellectual disabilities and autism. Journal of Special Education, 45(12), 227-241.

The researchers of this study determined students’ readiness into the adult world post- highschoolbylookingatvariouscomponents:familyand schoolrelationships,student development, student-focused planning, interagency collaboration, and program structure, and concluded that while teachers frequently implemented strategies furthering the first three goals, the latter two often did not come to fruition. This study encompassed over 104 teachers and special education staff and used interviews, direct observation, and an eight-item benchmark survey called the Taxonomy for Transition Programming (Kohler, 1996) to evaluate the best practices of transition preparation.

The participants in this study are from Australia and do not feature education systems or classrooms that conform to American federal mandates on special education, nevertheless, the findings of this study are relevant within the larger context of a trend of teachers tending to overestimate the time they spend engaged in activities preparing students for the adult world. Given the link between teacher efficacies in preparing students for the adult world after high school graduation, this study provides an important set of considerations for this proposed research.
Boyd, M. (2009). Rolling out the permanent welcome mat. American Teacher, 94(3), 8-9.

A crucial component of effective transition planning has always been parental involvement. Only through the collaboration of parents, educators, students, and other relevant professionalscanstudentsbenefitfromacomprehensivelydesignedtransitionplan. Thisarticle

reports about one school in Houston who are determined to make long-term academic welfare more accessible to parents. The organization which implemented this new outreach initiative was the Contemporary Center Middle School/High School (CLC), an educational alternative for students who have fallen two or more grade levels behind in their studies—students who might benefit most from a seamless home-community-school environment. This program was designed with the intent to encourage a dialogue between school and home with the goal to help parents be more proactive in their child’s education. The school dedicated a room for parents to access, complete with computers, a library, and other resources. This project known as the “White Tiger Project,” is the latest development in the CLC’s goal to encourage parent and community engagement in education. It serves to foster effective transition for students while minimizing obstacles that may sometimes be inherent in the process.

Understanding the importance of parental involvement can influence the transition development of students. When considering the instructional factors of transition planning, a complete view of all competing factors is essential in order to ascertain what skills a student needs post graduation and what skills are being taught that may or may not be beneficial in the long-term. Although, this proposed study will not create groups to control for such confounding variables, considerations as this will necessarily be listed among the limitations of the
conclusio ns.

Branding, D., Bates, P., & Miner, C. (2009). Perceptions of self-determination by special education and rehabilitation practitioners based on viewing a self-directed IEP versus an external-directed IEP meeting. Research in Developmental Disabilities, 30(4), 755-762.

As part of this study, teachers were asked to respond to interview measures and were assessed on their perception of self-determination after watching videotaped simulations of an IEP meeting directed by the student, and an externally directed IEP meeting. In both cases, the student was an adolescent with mild intellectual disabilities. Both groups (the education professionals and rehabilitation practitioners) perceived the student to be more capable after seeing them in the self-directed setting than they did the student who was a more passive
member of the IEP meeting. Given that it was the same student in both scenarios, the conclusion was drawn that students who were given more opportunity to demonstrate capability were viewed as more competent, resulting in a vicious cycle for students who may be perceived as less proficient at self-determination simply because they have not been given the opportunity to exercise their aptitude. Of the 49 education professionals in the study (in addition to the 46 rehabilitation practitioners), these teachers were evenly distributed across gender and age (20- 59). The majority of the teachers held a BA/BS degree, while eight had MA degrees, and none held doctorate degrees. The researchers also noted the years each teacher had spent in their current field of education. Unfortunately, the research did not reveal whether more experienced or newer teachers were more likely to fall victim to the deficit thinking concluded by this study, an interesting area for further research.

This study is pivotal to understanding many of the issues involved with unspoken teacher biases that have a direct impact on teacher effectiveness. A substantial body of research, in addition to this study has indicated that when teachers adopt higher expectations for their studentspositiveoutcomescanbeachieved. Bydemonstratingsomeofthefactorsthatcan

contribute to these attitudes, this study provides direction in some of the warning factors to look out for in this proposed research.

Brooke, V., Revell, G., &Wehmen, P. (2009). Quality indicators for competitive employment outcomes: What special education teachers need to know in transition planning. Teaching Exceptional Children, 41(4), 58-66.

The authors of this article examined the outcomes for students receiving special education services who had employment goals written into the transition plans of their IEPs. The study design utilized a scale the same authors (Brooke, Revell, &Wehmen) had created in 2008 to answer such questions as to whether the student was engaged in meaningful work aligned to their IEP goals, how much control the individuals with disabilities had in choosing their current placement, and whether or not the job provided health and disability benefits. The researchers also considered questions from the employer’s perspective in an effort to assess student readiness, such as whether the employer was satisfied with the work, and if there was a job retention support system in place. The study concluded that while participants in the study generally ranked well on indicators of post-secondary, employment-related efficacy, there were still areas for improvement. Proposed solutions discussed included schools conducting program quality reviews of their transition preparation programs and a continual emphasis on explicit life skills and vocational instruction. Gaining insight into the qualities of effective transition planning is essential to this proposed research in that it will afford the researcher an objective research base by which to judge transition plans and distinguish between those that are well constructed or ill advised.

Burns, M., & Ysseldyke, J. (2009). Reported prevalence of evidence-based instructional practices in special education. Journal of Special Education, 43(1), 3-11.

In this study, Burns and Ysseldyke examined the use of evidence-based best practices within classroom settings in direct correlation to both the No Child Left Behind Act and the Individuals with Disabilities Education Act, two federal mandates which set forth standards for greater accountability through the use of research-based methods. Using 500 special education teachers and 1,000 school psychologists as participants, Burns and Ysseldyke concluded that while a majority of teachers assessed reported using strategies with a strong research base frequently, they also reported using strategies with little empirical support at approximately the same rate. The conclusion of the existence of the well-documented research-practice gap follows a discussion of possible attributing factors and viable solutions.

Since research-based strategies regarding transition-planning remains among the most underutilized by special education teachers, this article provides a useful vantage point for furthering the discussion for viable solutions. Further, because the utilization of research and evidence-based best practices are an important professional development standard for educators who strive to be proficient, expert and current in their field, understanding the actual prevalence of the usage of these strategies is critical to being capable of discerning their utilization in the area of transition preparation.

Carter, E., Lane, K., Pierson, M., & Stand, K. (2011). Promoting self-determination for transition age youth: Views of high school general and special educators. Exceptional Children, 75(1), 55-70.

The authors of this 2011 study examined the ways in which three hundred and forty general and special education high school educators taught skills related to self-determination in their classrooms. More specifically, the study addressed the perception of the availability for self-determination services versus the actual existence of these services. In large part, the analysis was performed using quantitative rating scales and ANOVAs, lending to the valid and

reliablecredibilityofthestudy. Amongthemostnotablepointsgatheredfromconsiderationof the teacher, demographic/scoring data was that the teachers were characteristically experienced, with an average of 11.2 years among all participants (nevertheless, implementation of transition strategies remained markedly low). While this study was thorough in documenting the existence of a disparity, their discussions on possible explanations or solutions for the discrepancy were limited. This study adds to the systematic shortcomings in the approach teachers use to help students realize their transition goals through the method of a self-determination development service which provides a cornerstone of the problem this proposed research seeks to explore.

Cho, H., Wehmeyer, M.,& Kingston, N. (2012).The effects of social and classroom ecological factors on promoting self-determination in elementary school. Preventing School Failure: Alternative Education for Children, 56(1), 19-28.

The researchers of this study surveyed two hundred thirty three special education teachers in elementary school classrooms across twenty three different states with the intent of assessing how teachers’ perceive the importance of explicit self-regulation skill instruction dependent on classroom settings, the frequency with which teachers engaged in this explicit instruction, and
the perceived barriers to promoting this explicit instruction. The findings of Cho, Wehmeyer, & Kingston were limited, but ultimately concluded that the frequency of teaching these strategies were linked to teachers’ perceptions of the importance of explicit skill instruction. The most commonly identified obstacles for this instruction were low teacher expectations, teachers’ impressions of students as disinterested, or a lack of understanding as to what this explicit instruction would look like in different types of classrooms.

This study is important to my research as it provides insight into some of the barriers teachers confront in promoting self-determination, an essential characteristic of students’ realization of their educational goals. The problem my study seeks to clarify is why teachers

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often struggle with implementing IEP goals that prepare students post-high and having this beginning piece of research on self-determination specifically provides a lens hitherto un- researched.

Fuchs, D., Fuchs, L., & Stecker, P. (2010).The blurring of special education in a new continuum of general education placement and services. Exceptional Children, 73, 301-312.

The authors of this article discussed the implication of the response-to-intervention (RTI) policy initiative on education practice, the creation of IEPs, and the transition development of students. RTI intends to protect students from unrequired special education placements by ensuring that academic deficiencies are actually the result of a student’s learning disability and not ineffective teaching strategies. This article explored the research basis of two opposing positions on RTI, and is relevant to this proposed research as it relates to the position of both sides and what it means for secondary and postsecondary education plans. When discussing the different tiers of RTI and what each is designed to help accomplish for students, this review of existing studies made a concerted and successful effort to bring perspective to the issue.

RTI is an important concept to understand before commencing with this proposed research because, according to federal special education law (IDEA), every teacher is expected to implement some variation of it into their classroom through the tailoring and differentiation of instruction. Although the self-contained classes utilized in this proposed research are small (never more than ten students), the students will still have a continuum of academic, social, and transition goals. The teachers’ adeptness at navigating and meeting these different needs within the same classroom will be an important factor in their strengths and weaknesses in these transition settings.

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Lee, Y., Wehmeyer, M., Palmer, S., Williams-Diehm, K., Davies, D., & Stock, S. (2010). Examining individual and instruction-related predictors for the self-determination of students with disabilities: Multiple regression analysis. Remedial and Special Education, 31(6), 1-12.

In this study, Lee et al. used Arc’s Self-Determination Scale and the AIR Self- Determination Scale-Student Form to assess possible predictors of student self-determination. While it has long been considered a well-researched fact that the development of self- determination has been influenced by intrinsic factors (such as cognitive ability and temperament) and environmental factors (such as opportunities and instructional practices), Lee et al.’s study was the first to explicitly investigate whether one set of factors was more significant than the other. Drawing from a participant pool of 168 middle school students from twelve schools in six Midwest school districts who were receiving special education supports, researchers administered ARC and AIR-S to students before conducting a meta-analysis among the sub scales of each measure to conclude that instructional factors were stronger predictors of self-determination skill development than personal predictors. Self-determination development was measured through the self-efficacy and outcome expectancy scores of the AIR-S.

The findings of this study were integral in grounding the problem statement of the current proposed study and is considered foundational in justifying research on efficacy in education. Demonstrating that educational efficacy has an effect on students with autism is important to the study. If Lee et al. (2010) had concluded that instructional factors had almost no effect on the self-determination development of students; the utility of this proposed research would have beensignificantlydiminished. Duetotheresearchersofthisstudydrawingstrongconclusions demonstrating the influence of instructional practices on self-determination, the present study proposes to augments the case for further research into exploring the efficacy of education in New York State K-12 schools.

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McDougall, J., Evans, J., & Baldwin, P. (2010). The importance of self-determination to perceived quality of life for youth and young adults with chronic conditions and disabilities. Remedial and Special Education, 31(4), 252-260.

Conducted over the span of a year, the purpose of this study was to examine the relationship between the level of students’ self-determination in creating academic and social skills and their perceived quality of life. Thirty-four young adults with disabilities, aged 17-29, were included in the pool used to draw the conclusions of the study, and were assessed at baseline, and at the conclusion of the year-long period. To assess the level of self-determination, Arc’s Self-Determination Scale and the Life Satisfaction Index for Adolescents was used to measure for quality of life. On two of the five sub-domains indicating Quality of Life (general well-being, interpersonal relationships, personal development, personal fulfillment, and leisure and recreation), individuals with higher baseline-self-determination scores reported higher perceptions of personal development and personal fulfillment a year later.

An important limitation to consider in generalizing the findings of this study is that the participants appear to exclusively have physical disabilities (ex: cerebral palsy, spinal bifida, acquired brain injury). While the study notes that 49% had “various conditions” (including neurological disorders), more specificity is required before these results can be explicitly generalized to all groups. This being noted, the findings of this study (correlation between self- determination and quality of life) have been replicated across the literature and, given the strength of the instruments used in this study, may be considered with qualification.

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Morningstar, M., Frey, B., Noonan, P., Ng, J., Clavenna-Deane, B., Graves, P., Williams-Diehm, K. (2010). A preliminary investigation of the relationship of transition preparation and self-determination for students with disabilities in postsecondary educational settings. Career Development for Exceptional Individuals, 33(2), 80-94.

The researchers involved in this study chose to focus on students enrolled in four-year universities who received preparation through self-determination goals as outlined in their special education school curriculum when they were enrolled in high school. The focus was to determine if this preparation encouraged them to seek higher education. The participants from which conclusions were drawn included seventy six college students with disabilities who completed a two part survey measuring self-determination indicators (such as feelings of empowerment, hope, whether the student had an internal or external locus of control) and the student’s perception of their quality of planning. Through analysis, comparing this perceived quality of preparation and self-determination, Morningstar et al. concluded a significant positive correlation between high school preparation and self-determination.

While this study focuses on a different population of students than does this proposed

research, it still has significant implications for the proposed research in this study as it supports

the trend in the research that transition preparation is necessary for successful student readiness

into the adult world. This study demonstrates an inextricable link to student achievement with

teachers who set goals for their students, assist them in achieving those goals and serve as

effective conduits.

Mueller, T. (2010). IEP facilitation: A promising approach to resolving conflicts between families and schools. Teaching Exceptional Children, 41(3), 60-67.

This study investigates the collaboration between school districts and parents that the Individuals with Disabilities Education Act (IDEA) was designed in part to promote, and how this goal of collaboration is rarely achieved. One of the provisions made by IDEA is that if a

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consensus cannot be reached between school and home with respect to meeting the unique, individual needs of a student with disabilities; a due process hearing is conducted. According to a recent report released by the Consortium for Appropriate Dispute Resolution (CADRE), the amount of due process hearings requested is dramatically increasing each year, with a total of 5,385 in the 2005-2006 school years. Mueller’s study was designed to explore effective ways to make the drafting of IEPs more of a collaborative effort, and therefore more conducive to the learning needs of students with disabilities. The results of this study perpetuated the development of a new process called IEP Facilitation. IEP Facilitation places emphasis on the collaborative aspect of the planning stage, though it includes the presence of a “neutral facilitator” who encourages communication between all vested parties. Characteristics of this new IEP facilitation include: having a neutral facilitator, an agenda, goals created by each member of the team, ground rules, an environment that fosters collaboration, communication strategies to eliminate power imbalances, and the use of a “parking lot” or visual device to keep discussions on track and away from digressions. This is important information to consider as IEPs can play an essential role in the subsequent development of a student’s transition plan.

Carter, E. W., Lane, K. L., Cooney, M., Weir, K., Moss, C. K., & Machalicek, W. (2013). Self-determination among transition-age youth with autism or intellectual disability: Parent perspectives. Research and Practice for Persons with Severe Disabilities, 38(3), 129-138.

The researchers explored what parents consider the most highly valued skills that they want their children with autism to achieve. The study revealed that the ability to make choices, set goals, problem solve, advocate for self, daily living skills and overall self-control were among the factors held in high regard for parents. These skills have a direct correlation on academics. Continued research is required to explore the influence of having appropriate

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educationinplacefortheprogressanddevelopmentofstudentswithautism. Thisstudyis relevant to the current study in that parents tend to expect their children to excel under the directionofschoolprofessionals. Manyparentsadvocateformeaningfulpreparationforlife outside the classroom in order to foster a sense of independence and increase the quality of life for their child. Investigating the parental perspectives of the efficacy of education for their adult children with autism as it relates to preparation and job readiness will add to the literature.

Henninger, N. A., & Taylor, J.L. (2014). Family perspectives on a successful transition to adulthood for individuals with disabilities. Mental Retardation, 52(2), 98-111.

The researchers examined the outcomes of adults with autism with respect to the extent of

their level of independence and discovered that the perspectives of parents are often not honored

whendesigningapost-highschoolplan. Thispost-highschoolplanrunsparalleltothe

individual education plan that is often void of parental input. This research is relevant to the

current study in that it lends credibility to the notion that in order to provide appropriate services

for adults with autism, it is essential to consult with parents. The perspective of parents as it

relates to their views on the grades K-12 education that their son or daughter received in the New

York State school system could lend valuable insight into helping their child maximize their

potential to the fullest extent possible.

Hornby, G., & Lafaele, R. (2011). Barriers to parental involvement in education: An explanatory model. Educational Review, 63(1), 37-52.

The researchers contend that parental perceptions reveal that parents do not believe they are given opportunities to be included in their child’s education. The depreciation and lack of understanding of family history, culture, ethnicity, attitudes, behavior problems of children with disabilities including their strengths and weaknesses attribute to the barriers that parents face

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with the education system. It is further contended that a prerequisite for teachers should be to understand the barriers that families experience in order to provide meaningful educational experiences that can be carried over from school to the home and community. When the numerous aspects that solidify parental perspectives are esteemed, school professionals can adopt an improved understanding of the family experiences, which contribute to the varying dynamics that influence the home-school connection.

Doren, B., & Lindstrom, L.E. (2012). The Relationship Between Parent Expectations and Postschool Outcomes of Adolescents with Disabilities. Exceptional Children, 79(1), 7-21.

The high or low expectations parents have for their child is a determinant factor as to whether their child is prepared for life after high school. Further, the parents’ expectations serve to predict whether their child will achieve autonomy as a post-school outcome. These findings suggest that parents ought to be provided with positive supports from school professionals and from their community in order to develop high expectations for their child with a disability. Educational and/or job choices for students with disabilities can positively or negatively be influenced by the degree of parental expectations. The connection between parent expectations and outcomes has implications for the child’s sense of independence, confidence and behaviors.

Parents are in a position to either help or hinder the progress of their child’s overall development. More information is necessary regarding the importance of parents having high expectations for their children as their standards appears to have a direct correlation between learning and acquiring life skills. The article further suggests that parents who have high expectations for their child with a disability fosters independence and autonomy for their children. The researchers note teachers also have a direct association to student outcomes based on whether their expectations are high or low for their students.

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Harte, H. A. (2009). What teachers can learn from mothers of children with Autism. Teaching Exceptional Children, 42(1), 24-30.

The literature maintains that parents know their children better than any school professional. Parentsaretheexpertstotheirchildren’sunique,individualandspecialneeds. Engaging parents to collaborate with teachers is a vital tool for success. Parents live with their child on a daily basis and have internalized their child’s weaknesses, strengths, interests, learning style and other characteristics. Parents can offer educators’ strategies that have proven successful and strategies that have failed which ultimately saves valuable time. Allowing parents to share their perspectives on their children empowers them to have confidence in their responsibilities. Allowing parents to offer input into their child’s education validates their contributions and respects their capability of influencing their child’s academic achievements.

A strategy that works well for parents and their children is termed photo voice. Photo voice entails a parent taking a picture of their children engaged in a specific activity. These photos are given a voice and are used in the context of a needs assessment, creating a valuable home-school connection in order to optimize learning outcomes through curriculum planning and behavior intervention. Through the use of pictures which can be shared with the school, parents have the opportunity to use their knowledge of their child’s preferred activities to maximize learning opportunities that the school can emulate. Parents often follow their child’s lead with respect to what triggers sensory overload and/or anxiety that can be shared with teachers. Non-verbalchildrenoftencommunicatethroughbodylanguage. Forinstance,achild may stand in front of a cabinet to express that he/she wants food. Interpreting the cues that children with autism demonstrate takes the guess work away from a teacher who is just beginning to learn how to meet the needs of their student.

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Dillenburger, K., Keenan, M., Doherty, A., Byrne, T., & Gallagher, S. (2010). FOCUS ON PRACTICE: Living with children diagnosed with autistic spectrum disorder: parental and professional views. British Journal of Special Education, 37(1), 13-23.

The research suggests that parents welcome their children being educated using a specific methodology designed for students with autism: Applied Behavior Analysis (ABA). ABA is the most frequently used behavioral intervention with an educational component. It is designed to teach skills through repetition positive reinforcement and/or reward system. Many parents report that ABA-based school programs satisfactorily meet the needs of their child. There are numerous scientific intervention strategies used to educate students with autism but there is no published evidence as to the differences and similarities between school officials and parents views regarding treatment choices. The article however, does state that there are differences and similarities with respect to parents and teachers views on what defines difficult behavior for a child with autism.

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Dear ,

Appendix B: Letter of Invitation

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My name is Gwen Aviles and I am working on a doctorate in education through Blue Marble University. Iamconductingaresearchstudyentitled:

Parental Experiences with Adult Children (18-22) on the Autistic Spectrum who Attended New York State K-12 Schools

The purpose of this proposed phenomenological study will be to explore the perceptions, attitudes, and experiences of parents of adult children with autism as it applies to: (a) the barriers they faced with school officials when collaborating with them about the individual education plan for their child’s schooling, (b) what strategies worked academically and behaviorally that set their child up for failure, regression, or successes as it relates to adapting to society after graduation, and (c) to what extent were their children prepared for adult services including job preparation and community integration.

Your participation will involve a semi-structured interview that will take approximately one hour. A follow-up interview may be necessary for clarification of ambiguous data. The interview will be audio recorded for accuracy. Please accept my assurances that your interview data will be kept confidential, your name will not appear on any document related to the study, and your participation will remain confidential in perpetuity.

The results of the study will be published as a dissertation, but your name will not be associated with any results. Your participation in the study is voluntary. You may decline to answer a question or withdraw at any time from the study. Should you choose to decline or withdraw from participation, you may do so without demur. You may also request that any information you have given, whether in written or verbal form, be expunged from the record. You are free to ask any questions about the research and request a summary of the findings of the study. This research poses no foreseeable risk to any of the participants in the study. The results from the study may be shared through a presentation to community stakeholders, a presentation at a scholarly conference, or publication in a scholarly journal.

If you have any questions concerning participation, or the study in general, please contact me by phone (718) 730-0264 or email: gwengloriaaviles@gmail.com

If you are agreeable to participate in this study, please reply as per the statement of consent attached and save a copy for your records. I look forward to your enthusiastic participation, valuable perceptions, and respected experiences. Thank you in advance for contributing to the literature, where we as a human race have a moral obligation to our most vulnerable population.

Respectfully,

Gwen Aviles Date: Blue Marble University Doctoral Candidate
MA School Leadership
M.Ed/M.Spec.Ed

Appendix C: Statement of Consent

I have read the invitation letter and I would be happy to participate in the “Parental Experiences with Adult Children (18-22) on the Autistic Spectrum who Attended New York State K-12 Schools” study which might be of help to educators and/or parents in the future.

Participant’s Printed Name Participant’s Signature

Date of Consent Researcher’s Signature

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Appendix D: Demographic Survey

FIRST NAME OF RESPONDENT: (Optional)
The respondent is the father/mother or legal guardian?

FIRST NAME OF ADULT CHILD: (Optional) 1. Age

􏰀 At what age was your child diagnosed with autism?
􏰀 What is your age? (optional)2. EthnicityEthnicity, Origin (or Race): Please specify your ethnicity.

􏰀 White
􏰀 Hispanic or Latino
􏰀 Black or African American
􏰀 Native American or American Indian
􏰀 Asian / Pacific Islander
􏰀 Other3. EducationEducation: What is the highest degree or level of school you have completed?
􏰀 High School Graduate or GED
􏰀 Some college credit, no degree
􏰀 Trade/technical/vocational training
􏰀 Associate degree
􏰀 Bachelor’s degree
􏰀 Master’s degree
􏰀 Professional degree
􏰀 Doctorate degree

4. Household Composition

a. Marital Status: What is your marital status?

􏰀 Single, never married
􏰀 Married or domestic partnership
􏰀 Widowed
􏰀 Divorced
􏰀 Separatedb. How many children reside in the household?

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5. Professional or Employment Status

a. Are you employed? Yes or No

b. What type of employment?

􏰀 Self-emplo yed
􏰀 Out of work and looking for work
􏰀 Out of work but not currently looking for work
􏰀 A homemaker
􏰀 A student
􏰀 Military
􏰀 Retired
􏰀 Unable to work

6. Religious Affiliation (Optional)

a. What is your religious affiliation? _

7. Gender

a. What is your gender? Male or Female

What is the gender of your adult child?

8. Family Recreation/Leisure Activities

What types of recreation and leisure activities do you and your child enjoy?

What types of recreation and leisure activities do you and the members of your

household enjoy?

9. Opinion

In your opinion, what is the single, most critical issue facing young adults with autism? Please explain?

Orally presented to respondents on this date:

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Overview

Appendix E: Interview Protocol – Part I

Part I: Notes for the Interviewer

Tape-record the interviews if permission is granted
Interview in a neutral setting.
Each interview will last 60 to 120 minutes.

Interview Methodology

Interviews will be implemented with a customized approach allowing for an in-depth investigation. Follow-up questions will be used to stimulate interviewee memory. The interviewer will use a semi-structured question design (Part III). Interview will contain:

A predetermined set of 10-15 questions
All predetermined questions will be the same for all respondents

Designation of Interviewee: Location of Interview: Date:
Start Time:
Finish Time:

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ADULT CHILDREN ON THE AUTISTIC SPECTRUM

Appendix F: Interview Protocol – Part II 1. Components of the Interview

Introduction (5-10 minutes)
Review confidentiality and consent form.
Create a relaxed environment
Dialogue

Question: Have you received my introductory correspondence explaining my research and the format that will be used for this study?

Question: Are there any questions?
2. Explain the purpose of the interview
The purpose of this interview is to explore factors that influence your decisions. During the

time we have together, I would like to get an understanding of your experiences and observations pertinent to the subject matter of the study.

3. Ask permission to record interview

With your authorization, I would like to tape-record our discussion to get an inclusive record of what is said, since the notes I take will not be as comprehensive as I will require. No one other than I will listen to anything you say to me. Only I will have access to the records. The research results will describe what you and others have said predominantly in summation. No responses will be ascribed to you by name.

The open-ended questions are intended to obtain your personal experience and perceptions. The interview time may take about 2 hours. If you agree to volunteer and participate in the research process, please sign the informed consent page and confidentially agreement.

Would you give me permission to tape the interview? Do you have any questions before we begin?

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Part II: Components of the Interview

Appendix G: Interview Protocol – Part III

To ensure in-depth participant responses, Socratic follow-up queries (e.g., can you tell me more about…; how did that make you feel; why do you think that is; can you explain a bit more; why do you think I asked that question; etc.) will be initiated by the researcher if initial participant responses are “I don’t know”, “yes”, “no”, or other singular responses.

Subject Topic 1. What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York State about the barriers they faced with school officials when collaborating with them as it pertains to their child’s individual education plan (IEP)?

Interview Question 1: Describe two experiences you had when you tried to provide input regarding your child’s strengths and weaknesses to school professionals.

Interview Question 2: What role did you feel school officials expected you to play in the education of your child?

Interview Question 3: The individual education plan (IEP) mandates quarterly reports outlining progress with Individual Education Plan (IEP) goals. When you received the reports, what difficulties, if any, did you experience when you tried to decipher what was being taught and what was being learned?

Interview Question 4: What factors in the IEP did the school adhere to, and in what areas were they non-compliant (if any)?

Interview Question 5a: What evidence do you have that the majority of goals were mastered?

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Part III: Interview Questions

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ADULT CHILDREN ON THE AUTISTIC SPECTRUM
Interview Question 5b: When your child graduated, which of the goals were described as

“completed,” or noted as “in progress?”
Subject Topic 2. What are the perceptions, attitudes and experiences of parents whose

children with autism graduated from a school in New York regarding the efficacy of the strategies educators used to ensure academic success that were appropriate for their child?

Interview Question 1a: What plan did the school employ for your child to ensure academic success (i.e., Individual Education Plan, Functional Behavior Plan, Positive Support Plan and/or Transition Plan)?

Interview Question 1b: Describe your active participation in developing these plans?

Interview Question 2a: What areas did you feel the plan was appropriate for your child? Explain.

Interview Question 2b: In what areas did you feel it was a “one-size fits all” plan devised for all the students classified with autism at the school? Explain.

Interview Question 3: The various learning styles include visual/spatial intelligence, verbal/linguistic intelligence, logical/mathematical intelligence, bodily/kinesthetic
intelligence, musical/rhythmic intelligence, interpersonal intelligence and/or intrapersonal intelligence. These learning styles are used to determine how a child best acquires information. Which of these forms of learning best describes your child’s preference?

Subject Topic 3. What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York as it pertains to the efficacy of the strategies educators utilized to ensure improvement with challenging behaviors that were appropriate for their child?

Interview Question 1a: How effective was the Functional Behavior Assessment (FBA) and/or Positive Support Plan (PSP) that was initiated by school officials in de-escalating challenging behaviors?

Interview Question 1b: What role were you expected to play and do you feel there was any positive or negative improvements carried over from the school setting to the home environment?

Interview Question 2: In what ways do you feel the plan to control and/or replace the negative behavior of your child was appropriate?

Subject Topic 4. What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York State as it pertains to the efficacy of the pedagogy of the educators to teach vocational skills and job readiness?

Interview Question 1: What meaningful vocational skills fostered creativity and a sense of accomplishment did your child learn in school?

Interview Question 2a: Please explain your child’s experience with vocational education that provided him or her with an opportunity during the school day to participate positively in the community.

Interview Question 2b: Please explain your child’s experience with vocational education that provided him or her with an opportunity during the school day to enjoy a sense of accomplishment.

Interview Question 2c: How did you reinforce these experiences?

Interview Question 3a: Vocational training utilizes physical materials, people and/or symbols, such as numbers or letters. Please describe training strategies that teachers used to foster mastery in learning new job skills?

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Interview Question 3b: Which ones were the most effective?
Interview Question 3c: Which ones were the least effective?
Interview Question 4a: Please describe how available vocational job opportunities after

graduation complimented the skills your child was taught in school?
Interview Question 4b: In what way did any of them fail?
Interview Question 5a: Prior to aging out of the school system into adult services, was

your child assigned a job coach, and if so, please describe the kind of help that job coach offered your child.

Interview Question 5b: What roles were you expected to play during the transition into adult services?

Interview Question 6: Name three vocational training tasks practiced in school that you observed your child using after graduation.

Interview Question 7: Please talk about a field trip your child went on that encouraged vocational interests and preferences.

Subject Topic 5. What are the perceptions, attitudes and experiences of parents whose children with autism graduated from a school in New York as it pertains to the efficacy of the pedagogy of the educators to teach their children how to successfully integrate in the community?

Interview Question 1a: What are your perceptions about the recreation and leisure activities that your child was exposed to by educators in the wider community?

Interview Question 1b: Please describe two examples.

Interview Question 2: How do you feel about the social skills your child developed through community activities that were practiced after graduation?

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Interview Question 3: What evidence do you have that scripted stories aid your child’s learning about real-world social situations?

Interview Question 4: Is there anything else you would like to add related to your perceptions, attitudes, and experiences as your child transitioned from the K-12 system into adult services?

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Appendix H: Definition of Key Terms

Providing discipline-explicit terms allows for analysis in a content-specific area for the purpose of improved comprehension and communication (Nagy, & Townsend, 2012). Definitions offer precise, clear meanings of terms and thoughts without discrepancy and provide concepts using theory, ideas, and structural meanings (Nagy, & Townsend, 2012). The following terms are defined to provide a foundation of understanding of their use in the following discussions. Ambiguous concepts and terms may influence the outcome of the research study; thus, defining key terms aids the reader in understanding the meaning and context of the discussions (Nagy, & Townsend, 2012). The following terms are presented:

Antecedents are actions that come before a social response and often taught via a learning strategy referred to as scripting. Teaching a desired behavior through the scripting and fading of prompts is a tool used to eliminate maladaptive behaviors in students with autism. A productive functional analysis can be developed to design appropriate replacement behaviors by learning the antecedents involved before an aberrant behavior is demonstrated (lee & Sturmey, 2014).
Autism is a developmental disorder that impedes language and communication skills, socialization, behavior, and in many cases the ability to regulate emotions and sleep/wake patterns. Often, autism is accompanied by obsessive compulsiveness, aloofness, and sensory processing deficits. Autism is considered to have a neurobiological origin. Diagnostic instruments consist of family interviews and

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clinical observation, in addition to the diagnostic manual (Lord, 2010). Diagnostic instruments have been used to develop improvements in treatment plans and research results (Lord, 2010).

A due process hearing is a significant argument resolution component sanctioned by Congress in compliance with the Individuals with Disabilities Education Act (IDEA), whose objective is to expedite a fair decision about special education services and diminish conflict between parents and the committee on special education (Mueller & Carranza, 2011).
Free and Appropriate Public Education (FAPE) federally mandates that students with disabilities should be enrolled in an appropriate class where they can reach their fullest potential to the maximum extent possible. An appropriate class may be a general education classroom, a special education classroom or a separate class with special services for part or all of the school day (Sumbera, Pazey, & Lashley, 2014).
Individual with Disabilities Education Act (IDEA) is a federal law used as a mandate forafreeandappropriateeducationforchildrenwithdisabilities. IDEAdevelopers outlined specific instructions for school officials to adhere to that will provide services to meet the unique, individual needs of students with disabilities (Zirkel, 2010).
An Individualized Education Plan (IEP) is a legally binding, written statement developedforeachstudentreceivingspecialeducationservices. AnIEPisdeveloped to detail the nature of a student’s disability and to develop measurable academic and socialgoals. Theexactdescriptionoftheadditionalservicesandunique accommodations the student will receive are included in the plan after consultation

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with relevant individuals (i.e., the teacher, parents, school psychologist and other committee on special education team members) and when applicable, the student (Individuals with Disabilities Education Act, 2004).

The inclusion classroom comprises a learning environment where general and special education students are provided instruction in the same classrooms with adaptations to the curriculum and positive supports (Blecker, & Boakes, 2010).
Least Restrictive Environment (LRE). The Individual With Disabilities Education Act (IDEA) mandates that students with disabilities be given the opportunity to be educated in the same classroom as their typical peers with proper support services (i.e., modified instruction and/or a teacher’s assistant); however, a special education classroom may serve as the LRE for a proportion of students (McLeskey, Landers, Williamson, & Hoppey, 2012).
Life course theory refers to various occasions marking changes in one’s life that extend across the life cycle. Life course theorists link early life experiences to later lifeexperiencesandusethemaspredictorsoflifeoutcomes. Further,lifecourse theory refers to a person’s life history and explores how early life events directly influence future decisions. For example, marriage, divorce, career choices, place of residence, quality of health, and other major life occurrences is thought to be determined by earlier life experiences (Cheng & Solomon, 2014).

10. No Child Left Behind Act (NCLB) is designed to close achievement gaps with the goal that all schools are mandated to demonstrate that their students are making academic progress on a yearly basis. This testing is extended to students with disabilities (Lee, Jaekyung; & Orfield, Gary, 2006).

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11. Pedagogy (i.e., teaching methods) relates to the manner in which a teacher imparts knowledge, without bias, to their students in order to encourage the mastery of new skills (Young, 2010).

12. Phenomenology. Edmund Husserl was the first philosopher of the 20th century known as the ‘philosopher of the mind’ who invented the discipline phenomenology. Phenomenology is based on giving a voice to lived experiences that are organized by introspection, conscious judgment and thoughtful consideration; void of bias, which grounds a person’s perceptions on events occurring in their daily life over the course of a life span (Dorfman, 2013).

13. Self-determination is a concept often used in special education referring to a person- centered plan designed to assist the student in taking ownership over their decisions. Family support and advocacy and school administrators are expected to ensure that opportunities for a quality of life is being promoted in the best interest of the individual (Denney, & Daviso, 2012).

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