Preface
“When my son left high school, it was as though he fell off the face of the earth.”
My comment in an autism-focused parents’ group
Have you had this experience? Are you worried about the possibility of this occurring? What will happen when all your child’s familiar teachers, educational assistants, coaches, and friends disappear after graduation? Who will replace them in the adult world? How will your child manage this drastic change? How will you?
If you are the parent of a youth with autism spectrum disorder (ASD) and these questions are looming in your mind, you are not alone. The transition from high school to adulthood is one of the most challenging times for these youth (Coury et al. 2014). Development often plateaus or even regresses at this point; family relationships may become strained. Comfortable school routines are lost, and supports for the next phase of life may be lacking or inadequate.
How can you launch your youth into successful adulthood, allowing them to cope now and in the distant future when you are gone? Answering this question is the focus of the book you hold in your hands.
Why I can help you help your youth
You may wonder how I came to write this book, and why I urge you to read it. There are two main reasons. First, I wish this book had been available when my son was in high school. My son is a funny and affectionate but severely learning disabled young man on the autism spectrum. He is squarely in the middle of that spectrum: not intellectually disabled, but at the lower end of what is considered normal intelligence quotient (IQ); verbal but not able to express himself in writing; able to learn basic rules of appropriate social behavior, but unlikely to think about how his behavior affects others unless prompted to do so. Before he graduated, I could have used some advice about helping him navigate the next phase of his life. Instead, information provided was often incorrect or not applicable to him. When I shared my frustrations with friends, they replied, “You should write a book about this!” so eventually I did.
Second, as a child psychiatrist, I saw more autistic youth with difficulty at this time of life than I expected. In my suburban private practice, I took referrals from local pediatricians. Prior to my arrival, these pediatricians had been the main child mental health resource in our area, so they knew a great deal about psychological difficulties such as anxiety, attention problems, and depression. They considered these problems “simple,” so rarely referred to me for them. On the other hand, they considered youth on the autism spectrum “complex,” especially as they approached adulthood. The doctors relied on me to provide expertise regarding these youth, even though I had little training in this field. I learned a great deal as I tried to help these youth and their families. One important lesson was that, with the right guidance, parents could make a positive difference. This book was written to provide that guidance.
Is this book relevant to my youth and our circumstances?
This book addresses challenges faced by a broad range of youth on the autism spectrum. Examples include youth with a variety of intellectual abilities, social abilities, and levels of independence. Admittedly, my experience with autistic youth who are nonverbal or have severe intellectual disabilities is limited. However, to say that I am targeting only a “high-functioning” population is also incorrect.
Autism has recently been defined as being on a spectrum (American Psychiatric Association 2013) to accurately represent the diversity of people with this diagnosis. I don’t know where your child falls on that spectrum. What I do know is that saying someone is high functioning because their IQ falls above a certain arbitrary point is unfair. In my opinion, if you cannot figure out what to say on the telephone after “Hello,” or cannot look people in the eye when applying for a job, or are unable to sit in class because you need to flap or pace about, you are not high functioning regardless of IQ. The research supports this idea: one of the hallmarks of autism is that functioning in day-to-day activities is often significantly lower than IQ, and the bigger the discrepancy, the more likely youth are to suffer mental health problems (Kraper et al. 2017).
To address the breadth of the autism spectrum, I have indicated in each chapter which ideas pertain to higher-functioning youth and which ones to lower-functioning youth. If your youth is at neither extreme, both may be relevant.
Family circumstances and jurisdiction also affect autistic youths’ experiences transitioning to adulthood. My son grew up in a single-parent family (I am widowed) with an older, neurotypical sibling in a middle-class suburb just outside Toronto in Canada. If he had grown up in a two-parent, divorced, or blended family, in different economic circumstances, or in a country which did not have universal health care, his transitional experience would have been quite different. Programs supporting people with disabilities and their families at home, at school, and at work also differ from one jurisdiction to another.
Recognizing this issue, I have included examples with different family compositions, and tried to indicate when you may need to adapt my advice to your local jurisdiction. If you are not sure if a suggestion pertains to your area, ask a local professional 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