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 was the perfect baby. He rarely cried. He ate well and he slept well. As a toddler he never got into anything he shouldn’t have. He never emptied things out of a cabinet and never climbed on anything. He never colored on the walls or picked up something yucky off the floor and put it in his mouth. He loved to sit in your lap and look at books and could do this for hours. He was enthralled with Sesame Street, especially the segments about letters and numbers. At the age of one and a half he was bringing us letter blocks and telling us the letter and then naming something that started with that letter. We thought he must be brilliant.
The phone call came when Eric was two and a half. It was his preschool teacher. She was concerned because Eric wasn’t responding when she called his name and he was ignoring the other children in the class. She thought he might have a hearing problem. I knew there was nothing wrong with his hearing. He always covered his ears whenever there was a loud noise. If anything, I thought he had exceptionally good hearing. She must be wrong.
She was wrong about the hearing, but she was right to be concerned. Thanks to that perceptive teacher, we started the process of finding out what was different about Eric. First there was a speech and hearing evaluation (“Have you ever heard of autism?”). Then there was a trip to our pediatrician (“Look at him. He’s talking. If he has autism then I’m the Pope!”). Finally there was an evaluation by a developmental pediatrician who kindly told us about our son’s autism. The process was painful, but it made us recognize that there was a problem, and we started getting help for Eric. For that I am eternally grateful for that phone call from his preschool teacher.
The grief a parent feels when they find out their child has a disability is different for everyone. For me it was a deep, physical pain deep inside my chest, a weight that was always there. I cried for days until I couldn’t cry anymore. I avoided the people who meant the most to me. They wanted to help and wanted to support me but I wasn’t able to let them in. I couldn’t talk about it and I didn’t want anyone to see me so vulnerable. Eventually I realized that I had to take control of my life again. My six-week-old daughter, my husband, and Eric needed me. Fortunately I had the luxury of being a stay-at-home mom and dealt with my grief by focusing on learning more about autism and taking Eric to different therapies. I was also very fortunate to have my family and my husband’s family nearby and they helped us