Why individuals with severe autism need so much more than awareness and acceptance

Every night around 1 AM, after spending hours pushing little Nicole around the house in a stroller, her parents would finally get her to go to sleep. Then, about 3 AM, she’d wake up shrieking as if she were being tortured. They tried desperately to figure out where it hurt and what they could do to help her feel better. They hugged her and constantly assured her they loved her. The screaming was so intense they were afraid the neighbors would call the police. This went on for hours. But Nicole gave no clues to the problem. Not only was she unable to talk, she couldn’t even point — not to where it hurt, not at anything. What was the problem? Could her doctor, or some doctor, figure it out? No. They said, “she’ll grow out of it.” Later it became, “that’s just what you expect from her disorder.” There was only an extremely limited understanding of the problem and no truly effective treatments. That’s still true today.

Nicole is now an adult in her 20s. She grew a lot bigger and didn’t grow out of it at all. Sleep is still a problem. She has fits where she acts like she is in pain, very angry, or something unknown, and she can’t communicate what the problem is. Oh, she can type, fingerspell, and write, but she has extremely limited meaningful communication. She needs intensive, loving care 24 hours a day, every day, with no exceptions. She cannot take care of herself in any way. There is no way she could live independently!

Why does she have these challenges? The diagnosis is autistic disorder. You’ve probably heard that autism is just a different, perfectly normal way of thinking, and all that people with autism need is acceptance and accommodation. If severe autism is not a part of your life, you might believe that. How could acceptance and accommodation ever be enough to enable people like Nicole to live a reasonably normal life and not rely on others for everything 24/7? The word “autism” is used to mean so many different things. To families like Nicole’s, the just-a-difference concept seems like it’s from a different planet.

Imagine if she were the only one with this problem. Her parents might accept that there is nothing anybody can do to help, and that’s just how it is. But in fact, severe autism is becoming more common all the time. For example, in California, there are around 133,000 people with a substantially disabling form of autism in the state developmental disabilities system, and the number is growing rapidly every year. The new report “Autism in California 2020” has key information and insights. But even the best, latest science doesn’t have adequate answers yet. You might wonder — why not? You have to be clear about a problem before you can find solutions.

Of course, without question, all people with autism deserve acceptance. But, why would anyone accept a devastating disorder — severe autism — as if it were somehow normal?