Before I go further, I want to say that I had not talked about my son’s Asperger’s Syndrome openly until I started graduate school. And then, my motivation was because I wanted future educators to know what I had seen as a parent and as an educator in the classroom setting with regard to my son. I wanted them to know what they could do to make things better and what my son and I had experienced that had been heartbreaking, but also the things that had been wonderful.
During the last 10 years, I have been told by countless professionals, teachers, and parents of my children’s friends that my son prefers to play alone. And I bought into it up until recently.
John Elder Robison wrote in his book:
"Many descriptions of autism and Asperger's describe people like me as 'not wanting contact with others' or 'preferring to play alone.' I can't speak for other kids, but I'd like to be very clear about my own feelings: I did not ever want to be alone. And all those child psychologists who said 'John prefers to play by himself' were dead wrong. I played by myself because I was a failure at playing with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life. The sting of those failures followed me long into adulthood, even after I learned about Asperger's."
After reading that passage, I was filled with many strong feelings and my mind whirled. I first ached for John Elder as I recalled passages in the book about his failed attempts at play and I ached for my son because so many of the stories John Elder told were eerily similar to my son’s experiences. The words “I did not ever want to be alone” resonated within me from the time I read them and continue to do so to this very moment. I cannot even begin to count how many time I was told that my son preferred to play alone and that statement was used to make me feel better. People would ask me how he felt about not having friends to play with and if he seemed bothered. Even professionals would ask. Did they forget that part of Asperger’s Syndrome is an inability to demonstrate inborn social skills,to not be able to start or maintain a social conversation, and appear to lack empathy and thus they would not be able to show or tell what their true feeling were regarding not having playmates.
I have come to the conclusion that the preferring to play alone bit was designed to pacify the parents of children with Asperger’s Syndrome and to absolve guilt and responsibility for those adults and children who are impacted by a child and family affected by Asperger’s Syndrome. By creating that “characteristic” those who functions as normals do not have to be inconvenienced by accommodating a social handicap. Children with Asperger’s Syndrome have very limited scopes of interests and rigid rules for how they think things should be done in play. After all, we teach our children to take turns, practice a bit of give and take, to meet in the middle. The issue with Asperger’s syndrome is that the child can’t. At least not without extreme (and I mean years of therapy) effort. Expecting a child with Asperger’s Syndrome to simply do it because we say it is the right thing to do is equivalent to expecting a person in a wheelchair to get up and walk because we are in a hurry. Normal children are far more capable of learning how to go past the mid-point to accommodate the handicap than the Aspergian child is able to get to the middle. So, after a year, two years or more, the child with Asperger’s Syndrome simply stops trying because salvaging their feelings (even though they do not demonstrate them, it does not mean that they do not have them) becomes the only way they know how to cope and playing alone is better than being ridiculed.
Oddly enough, the therapeutic world has created social skills groups for children with Asperger’s syndrome to learn to improve their social skills and function better in a normal society. I have never had my son participate in any of these groups so I truly cannot speak about their success or failure. But, the reason I have not participated in them is because I could not see the wisdom of having my son with Asperger’s Syndrome participate in a social skills group that consisted of only those who had social skills needs with the goal of learning how to function in a normal society. It seemed to me that if I wanted him to l lean social skills to function in a normal society the place to learn them was in a normal society, so we immersed him in various activities and, of course, there was school.
If you ask me, the people who need the social skills groups are the normal individuals so that they can learn how to function with people with a social handicap.
My silence about my son’s Asperger’s syndrome was because I thought I could fix it and there would not be any reason to ever have to speak. I have had to admit that I cannot fix it. And now I know I have to speak because there are children who cannot speak for themselves and parents who, like me, are afraid, hurting and confused. Sadly, there are also parents who do not know that their children have Asperger Syndrome because it is difficult to diagnose. Many children are mis-diagnosed with ADHD, obsessive compulsive disorder, severe behavior disorder, or any of another number of disorders. And those who know me well know that I am NOT afraid to speak. I will speak for those who have not acquired their voice yet. I hope to bring awareness to the fact that we may be expecting too much from these children and not enough from ourselves.
I can’t change other people. But I can change me. What I can do is try to educate and inform through my words and my example.
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