To Label or Not to Label...

Terry thought that this email would make a good FAQ post so here are excerpts from my response to "anonymous" regarding this issue:

I have gone through the same fear over and over again. You can ask his OT. It took me almost 2 months to call to get an appointment after she suggested that we have him evaluated. Even AFTER his diagnosis I was still in denial because I hadn't researched it enough (still don't feel like I have). I mean, who wants their child to be labeled? No one does. BUT they do get labeled by people if not by professionals. Which label is better: autistic or bully? autistic or lazy? autistic or defiant? autistic or mentally retarded (because that is how he would be categorized in school based on their placement tests even though he has a gifted IQ in non-verbal skills)? autistic or picky? autistic or disrespectful? I can go on and on....when you understand what is going on in his head then you can react properly (or even be proactive to prevent the meltdown). Do I discipline him? Heck yeah. I do spank him and time out even though I know it doesn't hurt him physically and he may not learn the lesson. But it does calm him down enough that I can go talk to him about it. Does he get it the first time around? Heck no. And when he does learn the lesson and goes into "remission" does that mean he's learned the lesson for good? No. Why? because he is 4 years old and it takes a lot of effort for someone that age to "pretend" to think the way he is supposed to that is acceptable in the real world, in other words, neurotypically. He doesn't get to rely on instinct and be successfully accepted by others. As he gets older he will be able to "pretend" with less effort, but right now he doesn't understand because he is 4.

Here's an example of how I have to adjust my communication style with him:
So what do you do when you tell him over and over and over to do something (or not do something) and he keeps "defying" you over and over and over again? Get frustrated? Blow up? Maybe say or do something that you regret? Because I understand that he cannot process what I'm saying, I can then pick up a pad of paper that says "STOP" on it or "EAT NOW" and save the frustration on my end and his end. This works because 1) he can read and 2) he's a nonverbal communicator. It's complicated and it does blow my mind sometimes that he can read a word and know what to do but I can say the word and he's clueless. That's one of the thing they will work on in Speech Therapy.

...in his adolescent years, he probably wouldn't KNOW when to use it as a crutch or even HOW and, frankly, I'm not sure what he would use it as a crutch for...

...What sets AS apart from the other autism spectrum disorders is that he has normal or above average intelligence. If he used AS for anything it would be for something positive. Did you know that Bill Gates has Aspergers? Hmm I don't think I would be too disappointed if anything remotely close to that success story happens with Eric. But I'll be the first to admit that compared to other AS children, he's very high-functioning and he is a very fast learner as long as it is something that he enjoys (the speech therapist "play" with them so that they learn fast and it sticks with them - it's pretty fascinating)...

...All this to say, your fear is real and is recognized by me and probably most if not all parents who find out something is going on with their child, whether it is AS or ADD/ADHD or whatever. Gratefully AS is not a medicated syndrome. I guess what I was trying to say in my post was that these fears go away with the understanding of Aspergers. They got more intense as I had to sort out my thoughts and feelings of acceptance and denial and what in the world is there to come in the future. But like yesterday there are good days which are very good days and then there are bad days when I feel like he's in time out all the time (diet has helped this), and then there's everything in between. Is God working on my developing patience or what? =o)

...The only way that I can think translate what its like to explain to people who don't have AS or has never been around it, who just aren't aware, is its like parenthood. Someone who has never been a parent, though they may have been around children a lot, STILL doesn't know what it is like to be a parent and there are some things that you feel and do and say that non-parents just don't get and may even judge you for it. I am guilty of that. I remember when I used to get frustrated with my Mom when she would buy one nephew something and feel like she needed to buy my other nephew (his brother) something too because I have a thing about having Eric earn things. At the time I only had Eric. Now that I have Ryan I know exactly what she is talking about - well I may not know exactly until I am a grandmother of 2 boys...

I guess I've come a long way in my comfort level but we still haven't told anyone at church and some people have found out because they made their way to this blog whether they have posted a comment or not. I guess I'm still afraid that I might be hung up on the whole labelling thing, or maybe I just don't want to be too dramatic. I mean, he does masks the AS pretty well in public (why is that?) of course, as long as he is properly fed and underwhelmed.