Someone asked me yesterday, “How severe is Tucker’s autism?”
It’s a valid question, a question I am often asked, and a troubling question all at once. I think because there are so many factors involved in describing ‘severe autism.’
First, a history lesson (from WebMD).
The word autism has been used for nearly 100 years. The word is derived from the Greek words ‘autos.’ (Yes, I love etymology…because I’m nerdy like that). It makes sense because the word means self – and that pretty much describe autism. Self – something individual, something that each person experiences in different and unique ways.
In the 1940’s United States researchers used the term to describe children with emotional and social problems, children who are withdrawn from others. About the same time, Hans Asperger, identified a state of being (I prefer that as opposed to condition) referred to as Asperger’s.
More recently scientists developed the Autism Spectrum Disorder continuum. The continuum allows for a more fluid movement between Classic Autism, Asperger’s, PDD-NOS, Rett Syndrome, and Childhood Disintegrative Disorder (more in-depth descriptions on Day #279 – Tucker’s Version of Autism).
The question of how severe is complicated because of this spectrum definition, Tucker’s therapies, and my general human philosophy.
The spectrum is awesome and awful all at the same time. Tucker bounces between PDD-NOS and Asperger’s – but all for different reasons and in different environments. That’s awesome because we aren’t pigeon-holed into one thing and as we all know autism, itself, is quite fluid. It’s awful because it’s difficult to develop therapies that will definitely work with a given, specific diagnosis. It’s often a crap shoot – but we’re okay with that. How ‘severe’ is Tucker’s autism? I don’t know – it depends on the day and the situation.
How severe is Tucker’s autism? Do you mean now or then? With or without all of the therapies? I have no idea how severe it is. Now – it doesn’t seem like a huge deal, but is that because we’re accustomed to his needs? Is it because all of the time spent with SLP’s, OT’s, and PT’s was successful? I have no idea what his life would be like if we hadn’t spent so much time in the first few years helping him to acclimate, cope, and advocate.
My human philosophy. To decide how ‘severe’ his autism is I would have to compare him to someone else with autism. Who should I compare him to and how do I make the decision about which is worse, or better?
Is it better to…
have a child who has limited verbal skills, therefore limited spontaneous conversation.
have Tucker whose verbal skills are fairly neurotypical but watch him struggle with implicit social rules.
Is it better to…
have a child who has limited life skills and know will never leave home.
have Tucker and constantly wonder and worry about what his future will look like.
Is it better to…
have a child that you know will have specialized individualized instruction at school in a separate Special Education classroom.
have a child who is cognitively equal to their peers so is in the General Education population, but knows he is not like the other students.
I dont’ know. I don’t know how severe Tucker’s autism is nor do I care. So my answer was filled with a lot of ‘um, well, don’t know, depends, not sure, who knows.’
The bottom line? It just doesn’t matter. He is who he is and we are madly in love with that boy who is slowly, but surely, becoming a man.