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Wednesday, November 21, 2018

Parents' Hopes for Transition-Age Youth

In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
Researchers have documented that young adults with autism spectrum disorder have poor outcomes in employment, post-secondary education, social participation, independent living, and community participation. There is a need to further explore contributing factors to such outcomes to better support successful transitions to adulthood. Parents play a critical role in transition planning, and parental expectations appear to impact young adult outcomes for autistic individuals. The aim of this study was to explore how parents express their future visions (i.e. hopes and expectations) for their autistic transition-age youth. Data were collected through focus groups and individual interviews with 18 parents. Parents’ hopes and expectations focused on eight primary domains. In addition, parents often qualified or tempered their stated hope with expressions of fears, uncertainty, realistic expectations, and the perceived lack of guidance. We discuss our conceptualization of the relations among these themes and implications for service providers and research.
The eight domains and examples:

  • Community mobility: Ability to access and navigate the community, through public or private transportation "But my hope for next year will be that he’ll have learned how to drive, will get some way, shape, or form an access to a car, and that he can transport himself to and from [school] and/or work, and/or community college …" (Vicky) 
  • Community participation: Engagement in the community includes; community-based activities and social interaction with individuals/groups in the community "So that’s one of the goals we’re having actually right now at school … helping him learn how to interact with … the cashier at the store … they practiced beforehand how to make small talk while paying for your item instead of just looking at the floor or something … Those are really important things that I want him to get used to." (Sarah) 
  • Living situation: Where the youth will live in the future "Robert isn’t ready to live away yet, but that is our goal. The plan is for him to be able to go and participate someplace where he can gain the independence that he needs in order to be as independent as possible." (Judy) 
  • Peer Relationships: Friendships; relationships with peer groups "My vision for him in five years is that he has a best friend. Honestly. That’s my vision for him. I think if he didn’t go to college or anything else, for [my son] to have a best friend would be amazing. "(Christine) 
  • Personal safety: Safety from physical or emotional harm; ability to avoid, prevent, and/or adequately respond to hazardous situations and environments "I would pretty much say that if you ask any parent, safety’s going to be first. More so than folding the laundry, safety. My son has absolutely no sense at all." (Melanie) 
  • Post-secondary education: Enrollment in college or university-level courses "Five years, graduate high school … definitely graduate, he wants to graduate when he’s a senior. And then maybe take some college courses and work part time … I don’t think he could ever go to college independently full-time, like go live in a dorm. So get him into some type of, you know, supported college. He wants to get his college degree." (Sharon) 
  • Self-care: Taking care of oneself, including physical health (e.g. maintaining diet/medications), emotional well-being (e.g. happiness), and life skills (e.g. cooking, brushing teeth) "… One of the things that’s really important for us too is … health and well-being … being physical, going to the gym, doing what everyone else does to stay healthy. Because he has a very limited diet, and again that makes it very hard for him to live on his own because if you only eat peanut butter sandwiches … I mean you can survive! But that’s not healthy."(Jodie) 
  • Work: Commitment to work; paid or unpaid; part-time, full-time, or temporary; volunteering, internships, or vocational training "That would be my number one goal—to have Lauren have some kind of meaningful work. I really don’t know what that will look like in five years or how capable she’ll be. She’s got a long way to go, working at a [pet store], or being a pet groomer, having her own pet-sitting business, something like that, is probably my number one goal."(Tracy)