Parent Perspectives on Transition from School to Life for Students with Autism Spectrum Disorder

Transcription

1 Parent Perspectives on Transition from School to Life for Students with Autism Spectrum Disorder Elizabeth C. Serpentine, M.S., CCC/SLP, Elizabeth G. Clark, M.A., CCC/SLP, Kathryn D. Drager, Ph.D., CCC/SLP, Leslie Fink, B.S., & Paige Moyer Introduction: The transition process is a critical component of improving outcomes for individuals with ASD (Stoner, Angell, House & Bock, 2007). Two types of transitions have been identified for individuals with ASD. o Horizontal: occur on a daily basis and refer to the individuals transitioning from one situation to another (e.g., from class to class in a school building, or from school to home in the afternoon) (Rosenkotter, Whaley, Hains, & Pierce, 2001; Stoner et al., 2007). o Vertical: are developmental and refer to individuals sequential transitioning from one system to the next (e.g., from grade to grade, from middle to high school, or from school to adult life) (Rosenkotter et al., 2001; Stoner et al., 2007). Stoner et al. (2007) investigated the transition-related perspectives and concerns of eight parents of young students with ASD. Results indicated that: o All participants spent the majority of time dealing with horizontal and yearly vertical transitions. o Participants only focused on the school to adult life transition (described by one parent as the mother of all transitions ) when time permitted. o Parents were aware of the existence of the school to adult life vertical transition, but were often overwhelmed by the amount of information associated with the topic. Stoner et al. (2007) called for research to investigate the perspectives of older children with ASD who are closer to the school to life transition. The purpose of this investigation was to study the perspectives of parents of students with ASD in the midst of the transition from school to life process. Methods: Six parents of children diagnosed with Asperger s Syndrome and four parents of children diagnosed with Autism were recruited to participate in this study. Parents were screened to ensure they met the following criteria: o Parent had a child diagnosed with Asperger s Syndrome or Autism o The child was in grades 6 12 o The child was between the ages of 12 and 21 o Parent attended transition and/or IEP meetings at schools/centers o Parent lived in the same household with the child with ASD Parents that met the inclusionary criteria participated in one of two focus groups (one for parents of children with Asperger s Syndrome and one for parents of children with Autism). o Procedures for these focus group discussions followed the best practices recommended by Vaughn, Schumm and Sinagub (1996).

2 The researcher initiated each group s discussion by presenting a broad question (e.g., Describe your hopes and dreams for your child beyond school ) to the participants. Subsequent questions were asked based on participant responses to the broader questions. Participants were given as much time as necessary to respond to and discuss the question. o The focus groups each lasted approximately two hours. Interviews were transcribed and analyzed according to procedures adapted by McNaughton, Light, and Groszyk (2001): o Unitizing the data, coding the data, negotiating agreement and calculating agreement Results: Six themes emerged from the data: o Parents hopes and dreams centered around their children s futures in college, employment and housing situations o School Transition Planning o Parent advocacy is a critical component of transition o Challenges to transition o Supports to transition o Recommendations to other parents and to the schools THEME 1: Parents focused on future college, employment and housing situations College o All of the parents of children with Asperger s Syndrome considered some form of college to be a part of their children s futures. In my family it doesn t matter if you are a C student, you re going to college. So, I mean there s no doubt in my mind she s going away to college. And she has no choice and that s it. - Sally o Only one parent of a child with Autism considered a form of college to be a part of her child s future. Employment o All parents of children with Asperger s Syndrome and children with Autism expressed a desire for their children to be gainfully employed All parents discussed pursuing jobs and careers that matched their children s interests and skill sets I want to focus and get him focused building skills around what he likes. Lauren All parents expressed a desire for their children to be happy in their future employment settings. We just want him to be doing something that he enjoys doing. - Cara Housing o All parents of children with Asperger s Syndrome and children with Autism recognized the importance of their children moving out of the house in the future.

3 I have over the past several years myself have begun to think that he might be happier and more fulfilled and just in a better place if he s not with us for the rest of his life Cara o Most parents in both groups expressed concern about their children moving out of the house I mean if it were up to me I d keep him home completely protected. - Nancy o Parents of children with Autism discussed specific options for living away from home We we are thinking about adding uh,uh a like apartment efficiency above our garage. - Jen o Most parents in both groups reported that their children have expressed a desire to move out in the future. He is incredibly aware of where he is now, where he thinks he should be, and he cannot wait till he is out of the house. Kristen THEME 2: School Transition Planning All parents of children with Asperger s Syndrome and children with Autism expressed a need for more transition support from their schools I find that I rely so little on the school system for supports or information. - Marie For transition it says like they ll send us to a fair and they ll give us a hand out to read and that s the transition plan. - Kaitlyn One parent of a child with Autism reported a positive experience related to her child s transition One thing that just was wonderful um they ve got him working in a commercial bakery one day a week after school he works in a bakery. - Cara Several parents in both groups suggested that the schools were learning about transition simultaneously with the parents. So we feel like we are working with a moving target here. The school is developing their program, and the kids developing their capabilities. - Diane THEME 3: Parent advocacy is a critical component of transition All parents of children with Asperger s Syndrome and children with Autism believed they needed to advocate for their children to achieve a positive transition outcome If you guys aren t advocating for your own kids and getting the plan and coming up with the money it s not happening. Marie All parents of children with Asperger s Syndrome had independently taken steps to prepare their children for college and employment o Visiting schools with programs that support individuals with ASD o Attending conferences and workshops for information

4 o Performing mock interviews in applying for summer jobs So we did little mock interviews and talked about what questions might be asked. Marie I ve started a file about colleges that have support systems for autistic kids Sally Only one parent of a child with Autism had independently taken steps to prepare for her child s employment. We re trying to find a way to your know get her into a school in Philadelphia and with an aide and also eventually to get her into her own small business of sorts. - Jen THEME 4: Challenges to Transition All parents in both groups identified several student-related challenges to the transition process: cognitive limitations, anxiety, social skills, and resistance to trying new tasks o Cognitive limitations There s some learning style issues, he he really struggles with reading comp, he probably comprehends on a second grade level and I m not sure how much we re going to really get beyond that. He s had extensive tutoring in that area. - Lauren o Anxiety o Social skills Um, Seth s main issue is his, besides the issues that he has on being on the spectrum is his anxiety and that sometimes that kind of supercedes we sometimes forget that he has this [AS] because we re just dealing with his anxiety. - Peggy More of my concerns come from the social skills ends of it because I think that he could certainly do a job but the interaction with people is going to be more difficult. - Kristen o Resistance to trying new tasks I think one of the biggest barriers, is that we asked Aaron, do you want to try whatever and he says, No but then he does stuff and he likes it. But it s it s getting over the hump of you know, wanting to even try new things and I think that s really hard on our kids. - Kristen Parents in both groups identified parent-related challenges to the transition process o Financial limitations They sounded great but they didn t, that didn t even include college tuition, that was just the cost of their you know their program. I didn t even look at that point, I didn t know if they have any financial assistance or I didn t think so. - Marie o Not wanting to let go of their children That s the one thing that s going to be hard for me is if, if she is in some program she s so far away that I can t check in on her like once every few weeks or so. - Sally

5 Parents in both groups identified school-related challenges to the transition process: dissatisfaction with specific staff members, limited time for meetings, and their children being passed along o Dissatisfaction with specific staff members [Teacher] came in one time and I felt like the grim reaper had just come in to the class you know to the classroom with a cape like, your child is going to work at McDonald s and be like 400 pounds. - Jen o Limited time for meetings Of course they ve already told me I get half an hour and that s it. - Sally o Their children being passed along I guess from the point of the [instructional] aids is to like get through the process get them through the exam get them through the whatever it is their final Lauren Oh I just think the goal is to get them out of high school or 21 whichever. Jen Parents of children with Autism identified on additional school related challenge: o Not raising the bar high enough for their students And that s, that s one of my, another one of my complaints about the school district because I, I don t think they raise the bar high enough. - Cara Parents in both groups identified some society-related challenges to the transition process o Stereotypes associated with ASD When Lisa was younger, she was diagnosed just before kindergarten so it was a little late but, there was always the consolation prize of an Asperger syndrome was that your kid was a genius... I think it s like it does us such a great disservice. That the popular and the imagination they are always saying oh your son can do this because you know they want it to be just a happy ending. - Diane o Lack of kindness/respect shown to individuals with special needs I don t know that they [bus drivers] would be willing to like help special needs kids. - Kaitlyn Supports to Transition Parents of children with Asperger s Syndrome identified school-related supports to the transition process: o Enthusiastic teams I mean everybody was, yeah, yeah, we re, they re willing to pull in any kind of resource that might help. Nancy o Assistance with challenging curriculum They do modify it [the curriculum] - Peggy o Willingness to address vocational needs

6 They had like this vocational test they took and they must have done a unit where they, they actually had to write a resume in tech ed. - Diane o Attempting to gather and share transition information Parents of children with Asperger s Syndrome identified one parent-related support to the transition process o Strong network of parents of children with ASD We talk about, what s good is that we talk about what we found out about at the IEP meeting We compare notes and we tell the other people, and we find out. And we also gripe and sympathize and you know empathize. Sally Parents of children with Autism did not identify any supports to the transition process THEME 6: Recommendations In reference to transition, parents in both groups recommended that school teams should: o Incorporate job training or supervised employment into the transition plan But, but I can tell you from my very personal experience that they definitely discouraged Teddy from going out [to work] when I thought he was good and ready to go out and I think unfortunately now for a large part he s wasting his precious time. Cara o Address the students social skills, life skills and self-advocacy needs What I m saying is there needs to be more of a formalized life skills, whether its mapping your homework, not just you have a test on Friday, but study the first 16 pages or answer these study guides but what I find and what since middle school that my son s father complains about to is that there is not enough teaching of the self advocacy on a really hard level. Lauren In reference to transition, parents of children with Asperger s Syndrome also recommended that school teams should: o Assign an individual person who can provide guidance about information and available option I would like us to have some sort of advisor to have for the high school years. Peggy In reference to transition, parents of children with Autism recommended that school teams should: o Create a program off-site from the high school that would support the students needs from 18 through 21 years of age you know that they have some ties to the school that they re on a more grown up level like you know they re kind of like a baccalaureate program or something. You know that Nicole would get into that word and uh so that they could actually know that they re doing graduate work but it s from high school you know what I mean? Jen

7 o Use a child-centered approach I feel that we need to have a child centered approach where we look at each individual child, child, young adult and think okay what are the the positives that this person could contribute Kristen o Provide some discovery or evaluation phases for determining employment strengths The discovery stage has to come you know when there is still time for them to focus on how do we how do we teach the skills that are necessary and and really you know train for a specific occupation. Cara In reference to transition, parents in both groups recommended that other parents should: o Advocate for their children throughout the process you need to be the ambassador to let other people see the [child s] strengths and differences. Nancy o Start planning and preparing early, while the child is young I m thinking it s never too young to really begin thinking about the transition. Don t wait for the school system to do it. Make those good decisions for your kids now so that those things are in place when, when you need them, when the four years is up. Marie Discussion Educational professionals should consider initiating the transition process prior to the age of 14 as required by IDEIA (2004) o Early intervention literature in ASD suggests that providing intensive early intervention is critical to maximizing outcomes for a child with ASD as evidence suggests that the earlier intervention can begin, the better the outcome may be (Heflin & Simpson, 1998). It is possible that the same is true for transition planning: the earlier planning begins, the better the outcome may be for the students. Overall, parents want more support from the schools throughout the transition process o Parents perceived schools to be following the letter of the law (IDEIA 2004) in offering transition services. Parents would like schools to provide services beyond those that meet the minimal requirements of the law to ensure their children are prepared for future academic, vocational and housing endeavors. It is interesting to note that parents did not discuss friendships and leisure skills as part of the transition plan given that published research suggests these can improve quality of life References Heflin, L.J. & Simpson, R. (1998). Interventions for children and youth with autism: Prudent choices in a world of exaggerated promises. Part II: Legal/policy analysis and recommendations for selecting interventions and treatments. Focus on Autism and Other Developmental Disabilities, 13(4), Guralnick, M.J. (2000). Early childhood intervention: Evolution of a system. Focus on Autism and Other Developmental Disabilities, 15(2),

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