“Oh, your son is a level 3 that must be so tough” she said as her son was behind her talking incessantly about minecraft in that monotone tone barley taking a breath between sentences. I couldn’t take it. I had to politely excuse myself from the conversation. It wasn’t that I was annoyed. It wasn’t that i was so completely disinterested and my ADD radar was being set off It was the fact that in my previous conversations with those affected with the “higher” forms of autism I had noted a lot of things in the system that had failed these families and these kids. “Lower functioning” autism does not automatically mean “harder autism”. Let me paint you the picture of what I mean here.
When I go into an IEP with my son who is, for the most part, nonverbal and about as severe as they come I walk in with coffee for everyone in the meeting. I have nothing to prepare. I don’t have an advocate with me. I don’t have anxiety with me because we are all on the same page. He needs the most restrictive environment, he needs speech, he needs OT theres no debating that. I walk in and the IEP is already written. This is more “catch up time” and an exchange of ideas between professionals.
Now, lets take a look at what is it like for the parent of a child that is “higher functioning” on the spectrum? There is anxiety for weeks before. There is someone, usually a parent, compiling all the paper work from various doctors saying “Diagnosis: Autism” but the school wont accept it. There is no coffee being shared, there are advocates, fights, fears and hard feelings all while a kid sits at the lunch table alone every day because his obsessive tendencies in conversation “bother” the other kids. They call the kid “odd” or “different” and the parent is sitting there watching their kid get lost in themselves. There are low grades because of the sensory issues that seem to overtake their intelligence and the school wont help. There are just enough idiosyncrysies in the childs speech pattern to leave other children giggling at the child which eventually silences the kid because he is embarassed because he is “high functioning” enough to realize that they are making fun of him.
And this is just one part of the whole picture. You see, most of those on the more severe end of the spectrum aren’t really socially aware enough to really notice or care when others are making fun of or mocking them. They don’t notice that they don’t have any friends because, to them, friends aren’t really a priority. For many of those on the more severe end of the spectrum the prospect of friends isn’t really something on their agenda. They have their own little world and most are happy there. So this is one thing that the parents and caregivers of this population have going for us. Sure, we live isolated lives but that affects us more than our child. That’s one less stress for us in the overall picture. We are managing our child’s behaviors not trying to regulate their emotions.
I couldn’t imagine hearing my child say, “I sat alone at lunch again today, I just don’t understand what I am doing wrong… Why don’t they want to be friends with me?” I think that would kill me more than any behavior management plan ever could. Because I know that my child doesnt understand even if he wants to. that would be a new kind of torture.
I don’t know… Sure, the meltdowns are tough. Sure, the broken furniture and the isolation is tough. and the Jealousy at those that are doing the things you wish you could be doing is tough but I don’t have to fight the schools and as much as the thirty hours of therapy wears on me at least I know that he is getting help because there was a time that he wasn’t and I knew how helpless it felt knowing there was therapy out there but I couldn’t reach it for him. So to all of you aspie parents out there. This one is for you. Your plight is not lost on me. I may be a momma of a kid on the severe end but i see you out there and I salute you.