who works regularly with people with autism or other developmental disabilities. These professionals can be invaluable!
How this book will help
In this book, I share common transition-related challenges and practical solutions to them, as I encountered them in either my professional practice or personal experience. The sheer number of potential problems may seem overwhelming at first, but not every youth encounters all of these problems. Moreover, problems do not necessarily arise at the same time, so it is possible to prioritize them. Most youth encounter at least one problem though, so if you are the parent of a transition-aged youth on the autism spectrum, I am confident you will find at least some useful information in this book.
I have tried to write this book as though talking to you over coffee about helping your autistic youth. I refer to current research when relevant and provide references for those wanting more details, but I don’t dwell on research. Books need to capture your attention, and stories often do this better than facts. Therefore, I illustrate important challenges with case examples. To protect privacy, these are either composites of several cases or anecdotes from my son’s experience provided with his permission. The examples are used as a springboard for discussion of possible solutions to problems. Some solutions may be more relevant to your situation than others (depending on your family circumstances, child’s level of functioning, whether your child is still in high school or has graduated, etc.), so several options are usually provided. To make important points easier to recall, I summarize them at the end of each chapter as “Take-home pearls.” These are divided into those more relevant pre-graduation and those more relevant post-graduation.
The book is divided into three parts. Part 1 describes why the transition to adulthood may be challenging for autistic youth, and how to talk to your son or daughter about setting goals for adulthood. Teenagers are not known for being consistently cooperative, and autistic teens are no exception. Having helpful but respectful discussions with them about their plans is an art which all parents, myself included, can improve upon.
Part 2 provides detailed guidance on several key aspects of adulthood: independence, education, employment, physical and mental health, and social adaptation. Your youth may be ahead in some of these areas and behind in others. The chapters in Part 2 help you evaluate areas that might need work, and then provide guidance on how to start building competence in those areas. Developing a support system for your youth is the focus of a further chapter (Chapter 8), as few parents can do everything which is needed or might be beneficial without help.
Part 3 addresses long-term concerns common to adults on the autism spectrum and their families, especially regarding financial arrangements and social 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.
