My greatest fear with this diagnosis is that Noah will be stuck with a label and therefore viewed differently by the people in his life. In the short time since we first had him evaluated this has already happened. Most of the time I know it is harmless and unintentional, but I can't help but feel like some people say 'Ohhhhh, well it's because he is a child with autism.'
I received a copy of Noah's formal evaluation in the mail the other day. Three pages of typed, single spaced observations. Three pages of downer. And while reading it I could not help but feel like the psychologist was one of those who stuck Noah in a pigeonhole.
Most of her observations I agreed with and see first hand myself every day. But others it seemed like she had this preconceived notion of autism in her mind and made generalizations. For example, in the report she states that Noah has to eat at a certain location around the house or it will result in a tantrum. Absolutely not true. When they were asking about our routine I described that in the mornings I let him choose where he wants to eat; this is not a result of my trying to avoid a tantrum but because I think children like being able to make choices on their own (I did not say that last part, I just assumed it was understood). So I let him choose between the kitchen island, the table or the coffee table. If I did not ask him and just placed his plate anywhere he would not blink an eye.
And that's another thing. His tantrums. I call most of them 'mini tantrums' where it is obvious that he is acting out (age appropriately, mind you) of frustration. The big difference between Noah and any other child his age is that Noah can not verbalize what it is that frustrates him. So he cries out, screams (not a loud scream, just a quick 'I'm pissed' scream) and otherwise has a tantrum. They last no more than a minute. They do happen frequently throughout the day, but we are working on it and I feel that once he has some speech therapy under his belt they will all but disappear.
Of course, he does have an occasional major melt down. These are the real deal tantrums, ones that I think happen because he is over-stimulated and can not process all that is going on. Example: Noah at Moe's this past Tuesday, which happens to be their kids eat free night. Hungry Noah plus a long line plus the fact that he will not stand next to me and HATES to be held when in public equals major tantrum. He did not understand what the hell we were standing there for. And at that point he was too over stimulated to actually HEAR me while I calmly tried to explain to him what was going on. It was a nightmare. For me and all the people at Moe's. I will say that these only happen once or twice a week and it is always a direct result of me putting Noah in a situation that I should know he can not handle.
So anyway, when I say he has a mini tantrum, I think the psychologist assumed I meant the big, over-the-top kind. But when I said, no, a mini tantrum, she sort of shrugged it off and said that he should not be having them anyway.
Back to Noah in the pigeonhole.
In her evaluation she said that Noah has a problem with aggression. By and large the biggest stereotype that she just assumed upon Noah. He is the farthest thing from aggressive. What they observed, and what I agree is something we need to work on, is that Noah will hit himself on his side when he is told 'no' or if he does not like what you are asking him to do. Again, I think this is a behavior he developed because of not being able to verbalize what it is that is upsetting him. But in her evaluation she said that he hits not only himself but others and that he bites and perhaps should have a 'safe place' with a pillow or something that he can go hit when he gets like that.
For some reason, this got me fuming. Noah, like any other child his age, did go through a phase where he would swat at me (rarely actually hit). But we worked on it and I can honestly say that he does not do that now. And as far as hitting other children... I think I have seen him swat at his cousin a few times, but to be sure it is not something that I would say was a habit (and again... AGE APPROPRIATE). What makes me so mad is that she obviously assumed this upon Noah. She did not ask. ALL children with autism must have a problem with hitting, right? So let's just add this to his formal evaluation. Oh, and suggesting I create a 'safe place' where he can go lash out on a pillow?! I have a problem with that as well. When he is frustrated I want him to know that he can TALK about it to feel better... he does not have to physically act out in order to feel better. I would teach this to any child. Yes, right now it is difficult on me because he does not have the verbal capability, but teaching him to handle his frustration otherwise is something I am very much against. Especially because he does not have the propensity towards violence. He is really a very gentle soul.
She also said that he rarely made eye contact with everyone in the room, including me. Not true. He makes great eye contact. Like I said in a previous post, since infancy he has just known who he likes and who he does not like. I might add that I LOVE this about him. He did not like the psychologist and did try to avoid her. The other two, however, he did enjoy and wanted to play with. But that pesky psychologist kept getting in the way, asking him to do all sorts of stuff that he did not want to do. I think it is great to follow your natural instincts about weather you like someone or not. Granted, he should learn to respect people no matter what, but why would I force him to be friendly with someone he just does not like for one reason or another. AND HE MAKES EYE CONTACT ALL THE TIME WITH ME. She suggested that he only talks to me or approaches me when he needs or wants something. And even then he is not making eye contact. I am not sure what child she is talking about, but that is not Noah. He is very engaging with me and the people that he knows and loves. Many of you reading this now can attest to that as well.
Anyway, this is long enough, and I could go on even longer, but you get the idea. It is like she came in my home, met Noah (who does have some characteristics of a child with autism), and then wrote this 'stock' evaluation based on stereotypes. Not an evaluation about Noah himself. Might I add that there was only one positive thing in the whole thing written about my child. The final sentence that stated 'Despite Noah's challenges with engagement in activities and interactions, he presented as a pleasant and likeable little boy.'
So I am going to do everything in my power to make sure Noah is not stereotyped or put in a pigeonhole. Starting with going over this evaluation with a fine tooth comb and making my own notes.... as his mother who knows him best, not someone who spent a mer three hours with him. I do think I can be unbiased, but of course, as I said before, I think my child is brilliant and wonderful.
Let the advocating begin!