Aspergers is Not a Diagnosis
The moment you learn your child has a “syndrome” can be devastating and profoundly humbling. In that moment I felt helpless and as if I was drowning. How was I going to manage his needs and figure out how to “normalize” him? How does this impact him for the rest of his life? Does this mean he will never be a fully-functioning, independent adult?
The doctor’s understanding of the situation and how grave things were for my husband, son and I were evident in his hushed tone and in his stiff body language. It seemed as though he saw my son as terribly sick and difficult to “heal”. It took me a few days of reading and many hours of reflection to finally understand there really was nothing wrong with my son. That it was not a “syndrome” or “disability” or something we had to fix or worse yet, not curable. Over time and after reading at least 30 books in 3 months, I came to the conclusion that my son and all people with Aspergers have nothing wrong with them. That their brains operate differently from people who don’t have Aspergers and this is a very good thing.
I began looking at my son in awe and seeing how truly amazing he is and wanted to do everything to preserve and encourage his unique talents. When teachers or counselors talked to me about ways to cure his “daydreaming” or his constant singing, I told them I didn’t think he needed to be cured. I told them I thought we needed to find ways to accomodate the singing and daydreaming because he has an amazing musical ear and I didn’t want any interventions to change that. When therapists told me they could cure his ability to be distracted so easily, I told them I wasn’t interested because his ability to be distracted so easily is directly related to his astonishing capacity for remembering the smallest details. When teachers told me that I needed to get him medicated so he could concentrate better in class, I said no because that would diminish his great talent imitating accents.
I decided early on to let him in on his uniqueness and tell him about his brain. I will never forget the day I told him. He was so relieved to learn about himself and how his brain works differently than other kids. His learning about his Asergers put his feeling of “differentness” into perspective and actually empowered him.
For 6 years Blayne and I have worked on how to read body language and non-verbal cues. We have worked on Theory of Mind and how to put yourself in another’s shoes and see things from their point of view. We have worked very hard on how to understand boundaries in play and how to be a good friend. After all this work, Blayne is now in a place where he feels totally comfortable with himself and his “differentness”. He gets what his challenges are and what his amazing talents are and he has told me that he would never trade those talents for being able to do things easily like most other kids.
Three days ago, Blayne graduated from his Occupational Therapy. This moment came fast and when we said goodbye to our therapist (Marla), I finally understood what was happening. We worked for 2.5 years with Marla, every week. When she assessed Blayne and gave me the goals for success, I burst into tears because I was so sure we would never achieve the goals she had set for us. But 2.5 years later and after much hard work on Blayne’s part, we not only achieved all of the goals she set, but exceeded them! I am so very proud of my son. He has always understood that, while it wasn’t always fun or interesting, it was important for his growth. And Marla has always understood that the goal wasn’t ever to change Blayne or fix him but to accenuate his talents and minimize his challenges. I am so very grateful for her and all she has done for Blayne, but most importantly for how she has always seen him as special and extraordinary. She said to me once, “Aspergers is not a diagnosis.” And she is absolutely right!