Launching Your Autistic Youth to Successful Adulthood. Katharina Manassis
support. For example, you may wonder what will happen to your son or daughter when you pass away, or whether or not your son or daughter will be able to live independently. These worrisome issues are faced head-on in Chapters 9 and 10. The final chapter discusses maintaining hope and avoiding burnout in all family members.
How to use this book
How you use this book will depend upon whether your youth is still in high school, about to graduate, or already beyond high school. If your youth is still a couple of years away from finishing high school, read this book from start to finish to plan ahead for the transition to adult life. The book will help you:
• understand why your youth’s transition to adult life may be challenging (Chapter 1)
• effectively set goals with your youth and understand their perspective on these (Chapter 2)
• ensure preparation in all key areas needed in adulthood and avoid common pitfalls (Chapters 3–7)
• develop a reliable support system for the young adult years (Chapter 8)
• plan for continued, long-term progress especially in relation to financial matters, independent living, and socialization (Chapters 9 and 10)
• cope with ongoing challenges while maintaining a resilient, realistically hopeful attitude in your youth, yourself, and other family members (Chapter 11).
If your youth is about to graduate, read a bit faster!
If your youth is beyond high school, you haven’t missed the boat: the transitional process often spans years and involves some trial and error even in the best of circumstances. With perseverance, positive outcomes can still be reached. In fact, many transitional supports for youth extend to about age 25, and sometimes longer if youth are still engaged in education. Therefore, if your youth is already out of school:
• Reflect on which area in Part 2 is most challenging for your youth.
• Read the chapter in Part 2 which is most relevant to their struggles.
• Then, read Chapter 8 on accessing helpful supports. This chapter is relevant to all of the specific challenges.
• When you have dealt with your youth’s most critical issue, return to Part 1, the rest of Part 2, and Part 3 to better understand your youth’s difficulties and anticipate what else may be needed.
Although supporting your youth’s transition to adulthood may be challenging and complex, it is definitely worth the effort. In my own experience, it meant overcoming my social anxiety in order to advocate for my son, while respecting his wishes and going at his pace. Successful transition requires a coordinated effort between families, schools, post-secondary institutions, employment settings, medical practitioners, social service organizations, and youth themselves. You can guide this process using knowledge of what is needed prior to the transition, accurate information about transitional issues, and connections with service providers who have experience with autistic youth. This book is designed to help you do that. Your reward will be the joy of seeing your quirky but wonderful youth go into the world and realize their amazing potential, finding a niche on this planet which seems designed for people who are much more ordinary. Let’s get started!
Chapter 1
Challenges with the Transition
to Adulthood in ASD
Perhaps you are worried about what will happen to your youth when high school ends; perhaps you don’t know what to expect; perhaps your youth is already struggling to adapt to the adult world and you are eager to help but unsure how to do so. In all of these situations, it is helpful to know what transitional challenges are common. Knowing that others have the same challenges your youth may be facing is reassuring: your family is not alone in this struggle. Moreover, understanding the reasons for the challenges puts you in a good position to find solutions.
To begin, let’s look at common transitional challenges and their causes. Here is a rather extreme example of what can go wrong in the transition from high school to adulthood, intended to stimulate our thinking about how to get it right.
Robert was on the autism spectrum and had significant learning disabilities, but was verbal and motivated to learn. He attended high school in a special class for autistic youth, but was mainstreamed part of the day with the help of an educational assistant. His mainstream courses included daily physical education. He also participated in the school canoeing club, where he was well-liked for his quirky sense of humor. He went to the movies regularly with a few of his classmates. The boys’ parents took turns driving them to the theatre. In his last year, Robert spent half days at a cooperative education placement in a local store which was within walking distance of the school. By the end of the term, he bragged that he knew the way to the shop better than his educational assistant did! Despite his learning disabilities, Robert appeared relatively high functioning in high school.
Things changed dramatically, however, when high school ended. Robert and his parents met with a guidance counselor about his post-secondary plans. As Robert’s English courses had been below college level, she advised looking into vocational schools or getting some work experience. She reassured his parents that a government-funded disability service organization would help the family explore these options. All they had to do was send in Robert’s most recent psychological evaluation. They did so a few months before his graduation.
The day before Robert graduated, a letter arrived from the disability service organization. The letter indicated that, despite Robert’s significant autism-related impairments, he was not eligible for their services as his IQ was just barely over 75. Eligibility for their services depended upon having an IQ below 75, regardless of the person’s ability to function in daily life. A local employment agency for disabled adults was recommended. Unfortunately, the worker at this agency had plenty of experience finding jobs for people with physical disabilities but no experience working with those on the autism spectrum. Furthermore, the worker refused to speak to Robert’s parents, citing Robert’s right to privacy as he had recently turned 18.
After several discouraging attempts to find work, Robert became increasingly withdrawn. He spent most of his time at home playing his favorite video game. As he did not need to get up at a regular time, he soon spent more time sleeping during the day than at night. As he snacked while playing and no longer engaged in physical activities, he gained weight. Robert’s classmates dispersed to different places after high school. Some were eligible for college, others were able to work with the disability service organization, and still others had families who owned businesses where they could work. Robert did not see any of them regularly anymore. With no social life apart from his online contacts, Robert’s verbal and social abilities declined. When his parents tried to talk to Robert, he now responded only in grunts.
Concerned about their son’s deterioration, Robert’s parents argued about how to best help him. His mother advocated an expensive private vocational school; his father argued, “He’s just lazy and lacks motivation. No further schooling will change that.” The more his parents fought, the more Robert withdrew. Soon, his younger brother started skipping school, asking, “Why does Robert get to stay home when I don’t?” There were further parental arguments about the brother’s defiance.
Alarmed at Robert’s passivity and deteriorating health, his family doctor