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 that many students on the autism spectrum struggle with could make this kind of college environment intolerable. Many students do well at community colleges or smaller schools with more individual attention from instructors, smaller class sizes, and a smaller campus to navigate. Living on campus in a dormitory also may not be the best option for students with autism. Parents need to think about the level of participation that is best for their child, whether it is commuting to classes, attending part-time instead of full-time, or taking online or video classes. The choices Eric made might not be the appropriate choices for your son or daughter. It is important to consider all the options available to your child. You should research the supports colleges offer and weigh each one with your individual child’s strengths and needs in mind.
Parents who read this book may not find their own child’s experience within these pages. The struggles your son or daughter has may not be the same as the struggles of my son. They may have capabilities Eric does not. I may not have the personal experience of dealing with the same behavior issues or the same social needs that your son or daughter may be experiencing. I include in this book information about other college experiences from a variety of individuals on the autism spectrum. I learned of these college experiences through my conversations with other parents and through my association with professionals in the autism field. Also included are the perspectives of adults on the spectrum who have shared their experiences in college. I hope this book can relate to parents and professionals the wide range of needs and abilities of students on the autism spectrum and the importance of respecting the individuality of each of these students.
I use the word “autism” in this book to describe my son’s disability. Autism was the word we were presented with over 18 years ago. It fit then and it fits now. That little word has enabled him to get the services and resources he has needed. It has not held him back in school or in the expectations others have had for him. Perhaps your child has a different diagnosis. Autism spectrum disorder, Asperger Syndrome, high-functioning autism, pervasive developmental disorder, and nonverbal learning disorder are words we often hear describing our children. The names given to our children’s disorder may be different, but many of the problems are the same. The experiences described in this book can help families or professionals—basically anyone working with an individual on the autism spectrum who considers higher education an option.
We were fortunate to receive the diagnosis for Eric when he was very young. This gave us many years to adjust, learn, and accept. Many students are being diagnosed with high-functioning autism or Asperger Syndrome later in life. They may have received incorrect diagnoses before finding the one that fits. Many students don’t find out they are on the autism spectrum until they are in college. They may have struggled in college and when seeking help found a knowledgeable support person who led them to the answer to their difficulties. Whatever the age of the individual when diagnosed, the supports and strategies that are included in this book can help them and help the family who wants to be a part of the student’s support team.
This book is not a story about a child who was “cured” of autism. Yes, my son is able to attend college, live in a dormitory, and be independent in many areas. Obviously, he has succeeded in ways I never could have imagined, but he still has autism and always will. At the age of 22, he prefers being alone. Frequently he self-stims and talks quietly to himself. One of his greatest limitations is his difficulty making friends. He reads constantly, mostly books about dinosaurs, creatures, or evolution, and he has little interest in what anyone else around him may be doing. He needs order in his life and has many routines for his day. The autism is a big part of who he is. What is important is that Eric likes who he is and wouldn’t change anything about himself.
One of the best lessons I have learned over the last 20 years is that all individuals on the autism spectrum are different. As a parent of a newly diagnosed son, I searched for that story of the child just like mine and the parent who knew exactly what I was going through. I never found that story, but instead I found things I could identify with in numerous stories of children who were often very different from my son. Those stories helped me more because they taught me about the uniqueness of autism. They reminded me of difficulties I had already survived and problems I would never have to deal with. They gave me hope for the future. It didn’t matter as much that the experiences were different from my own. What mattered was that from those stories I felt connections to other people and immediately felt less alone.
I was at the beach with my family recently and a woman approached me while I was sitting in my chair reading. She very nicely said, “I hope you won’t think I’m being too personal, but is that your son over there?” Eric was enjoying the beach, running back and forth at the water’s edge, occasionally just standing there enjoying the feel of the water on his feet. I said “Yes, that’s my son.” Even after all these years I worried about what she would say next and readied myself to protect my child. She said, “Does he have autism?” When I answered yes, she quickly said, “My son has autism too,” and pointed him out to me in the neighboring group of people on the beach. We struck up a conversation and immediately had a connection that had nothing to do with the functioning level of our children or their ages or what therapy we used. That day on the beach we were strangers who discovered we were members of the same club—not a popular club to join, but a club just the same. Even though our children might be very different, we knew we had paid the same dues to join that club.
For all you fellow autism spectrum club members, I hope you will feel that connection within the pages of this book. My story may not be your story but I know you will understand the fears I have felt, and the dreams I have dreamt. I want this book to give you hope, something I searched for desperately when my son was three. I want our story to remind you not to close any doors because you think your child may not be able to go there. The future is wide open and anything can happen. College doesn’t have to be one of the dreams we surrender.
| 1 | Starting Out: Diagnosis and the Early Years |
Eric
