Contents
1Starting Out: Diagnosis and the Early Years
2Strategies for the High School Years
3Making the Decision about College
4Everything You Need to Know about Life: A Summer of Lessons
6Supports and Strategies in College
7Self-Awareness and the Issue of Self-Disclosure
8Positives of the College Experience
APPENDIX A: USEFUL BOOKS AND WEBSITES
APPENDIX B: SAMPLE SELF-DISCLOSURE FORM
Preface
After my son Eric was accepted into college word spread in our local autism community that I was the person to call if you had questions about college and autism. I never felt like an expert in this; I was just a mom trying to survive my son leaving home. I was surprised that anyone would be coming to me for advice because I wasn’t feeling confident in anything I was doing. That time in my life was very similar to 16 years earlier when Eric was first diagnosed with autism. Like then, I felt overwhelmed, I had more questions than answers, and I was pressuring myself to learn everything and do everything to help my son.
The parents who contacted me, some I knew well and some I had never talked to before, were hungry for information and appreciative of any experience I would share with them. They didn’t expect all the answers. They wanted to hear from someone who was going through it, who could talk about the mistakes, the surprises, anything we were learning during this process.
I was very pleased when my colleagues at TEACCH (Treatment and Education of Autistic and other Communication handicapped CHildren and adults) invited me to present at a conference on high-functioning autism and Asperger Syndrome in college. The conference was attended by disability services providers from colleges and universities along the eastern coast of the United States. I was asked to give a parent’s perspective and to share some of the strategies that had been useful for Eric. For the first time I would be telling our story to professionals, not parents, and I wasn’t sure how well it would be received. I had doubts that an audience of college service providers would be interested in a parent’s perspective, knowing the emphasis in college is on student self-advocacy and not parental involvement.
The conference went well and the audience was very receptive to my presentation. I learned that day that college service providers are committed to helping students be successful in college and they welcome a parent’s help in preparing the student for the transition and supporting them at college. They understand how complicated the needs of students on the autism spectrum can be. In many cases they alone cannot provide all the supports a student may need and realize that a parent’s support may be crucial.
My experience at the conference and the questions I got from other parents convinced me that there is a significant need for more readily available information for professionals and parents who support students on the autism spectrum in college. This book is my attempt to get more information out to other parents who are thinking about college as an option for their child. I hope it will also be helpful to those individuals who work at colleges supporting our sons and daughters. It is my hope that my experiences and the experiences of my son can help other families realize their college dreams.
Introduction
College was never an option. The day the doctor told us that our three-year-old son Eric had autism our world changed forever. Many of the dreams my husband and I had for our son disappeared. My first questions to the doctors were about his future. What would he be like when he is an adult? Will he be able to go to college? Will he ever get married? No one could predict his future and they were unwilling to guess. The doctors would only talk about his strengths and say it was too early to tell. Over time I stopped worrying as much about the future because I was overwhelmed with the present. I had trouble seeing beyond the daily battles and the countless therapy appointments that ruled our lives. My new dreams became very short-term—Eric would be able to sit with the other kids at circle time, Eric would make it through the grocery store that day without a meltdown. I was afraid to hope for more.
Now I know that I was wrong: wrong to give up on dreams for my son and wrong to expect so little. I would have closed many doors if Eric had not reminded me to keep them open by showing me how much he could do. He never let me give up on him. Over time I adjusted to the “autism” and was better able to see his potential. At the same time he began to adjust to his world and to show me his capabilities. He has taught me so much over the last 20 years. The day we moved him into his dormitory room on campus was the proudest moment of my life, and also the scariest.
There were many things to be scared of. For the first time, my son would be on his own, making his own choices, taking care of himself. I wouldn’t know what he was doing in his classes, if he were passing or failing, or if his professors understood his difficulties. I had no idea how he would deal with living in a dormitory with loud music and partying late at night. Would sharing a bathroom with six strangers overwhelm him? I didn’t know how the other students would treat him or if he would be able to make friends. What if he got sick? What if he needed help? Everything I feared seemed not just possible, but almost certain to happen.
Some of these worries are shared by all parents of children leaving for college for the first time. I recently survived my “severely normal” daughter’s transition to college. Although that was hard too, it was different from the experience I had with Eric. As I worried about my daughter’s first days and nights at college, I knew deep down that she understood more about life and people and making smart choices, and that she would be OK. Eric, on the other hand, does not have that same level of understanding and probably never will. He may always have trouble seeing another person’s perspective and consequently will be more vulnerable. These fears I had were productive because they drove me to try to prepare Eric for what was to come.
Eric’s college experience has been at a large state university with close to 30,000 students. That may not be the best environment for all students on the autism spectrum. The sensory issues