Yesterday was intense, stressful, disturbing and exhausting. We took Joseph to the Sarkine Autism Center at Riley for a comprehensive evaluation. We had a diagnosis, (autism spectrum disorder), but that’s barely a start. I’ve never felt like I had a handle on what it meant, what he needed, how we could provide it if we could, and so on. We spoke to a social worker, a speech pathologist, a psychiatrist, a neurologist, and someone else whose title I never did get, but whose mission was to observe Joseph and how he played and interacted with other people and his environment (chairs, floor, my coat, available toys, etc.) during the adult conversation. When they said comprensive, they meant it. I came home utterly drained and exhausted.
Joseph’s been tested before, but never with us present. We had been told that our presence would skew the results. I don’t think it did; Joseph did look at me when he was bewildered, but a smile in reassurance was all he was looking for. And meantime, I got to see how he did without the compensations we’ve learned to provide. I saw my son through the eyes of a series of objective observers. I saw him try to follow simple directions, and fail, and not be given a second chance. I saw what I fear the world will see and respond to, and it broke my heart.
We have a new diagnosis. It is no longer “Autism spectrum”. It is simply “Autistic”. It’s no real surprise, and the name shouldn’t matter; he’s still the same sweet, smart, loving little boy.
And yet the name does matter. It matters in the battles we and he will have to fight to keep other people from putting artificial limitations on him. Really, there are as many types of autism as there are people who have it; generalizations about what an autistic person “can’t do” don’t make sense. My response is “try it”. No one knows what anyone can or cannot do unless they try. That’s as true of the neurotypical as of the autistic. It matters in the stereotyping he will face from educators, neighbors, whomever he must deal with. It matters, as he gets older, in the limitations and stereotypes he may apply to himself. I never want him to say “autistic people have no imagination, therefore I have no imagination.” With the label applied, that just became harder for us as parents to counter.
His communications skills are still below normal for his age. I am told his expressive language skills are ahead of his receptive skills. I’ll have to do some research on that. It’s counterintuitive, but what do I know? What I do know is that I shall have to sift carefully through what I am told. One of the generalizations out there is that as an autistic child, he won’t understand emotion. But when I was in tears over something last week, he understood that Mommy was sad. And he understood that kisses from Joseph would make me feel better. In the face of that, the generalizations can go hang.