Saturday, June 4, 2011

Struggling to explain Asperger's Syndrome

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I am having a hard time with this one. When someone looks at my boy in the middle of a meltdown or during certain behaviors they start with the "he needs more discipline" or "he's very spoiled" or "you need to do X so your child doesn't Z". It's very frustrating, especially when the comments fly mid-meltdown or during those typical autism behaviors.

My boy's meltdowns have decreased significantly over the past year. They went from lasting all day to under an hour. Each time, its less severe. That severity always depends on the trigger, but even still its better than it was even two months ago. He makes improvements with each one. He gets disappointed in himself when it happens because he ruins his Days Without a Meltdown Record (because they used to happen everyday, now its twice a week at worst).

I have to remind him that some of his reactions are appropriate for the circumstance. It's okay to be disappointed, cry and whine. That's not a meltdown and it is okay to express those feelings. If he was a normal kid, I wouldn't have to explain what the appropriate methods of reaction to negative things were and I wouldn't have to do it weekly.

He is spoiled, I admit, but he is an only child. He has no competition from siblings, he has more resources available to him. That's okay. I don't know how you would stop him being an only child... besides the obvious, which isn't happening any time soon.

I've done a lot of explaining, but I fear it comes off as excusing. That makes it frustrating for everyone. When my kid says "please leave me alone" or "don't touch me, please" (and we've really worked hard on expressing those needs appropriately and politely) and an adult does not respect his wishes, the boy gets to a point where he feels forced to be more aggressive. Yet so many adults do not respect his need for personal space. They push him and he ends up pushing back. That makes my boy look like a bad kid because he's over-reacting (or so it seems to other adults) to their stimulation.

He's not over-reacting. That's him. At times, touches, conversation or another humans mere presence overload his sensory system. He short circuits. It's cause and effect. And adults aren't very good at listening to and respecting children when it comes to their personal space and boundaries.

They aren't very good at listening to the people who know the child best either. This is hard when that other adult is inescapable or a family member. The resistance to accepting an Autism Spectrum Diagnosis is maddening at times. Why do people feel its necessary to argue a diagnosis given by an expert? It's not like the evaluation is a 5 minute process given by someone with Bachelor's Degree (unless its an education diagnosis *rolling eyes*).

The other day I said during a meltdown that "this is nothing". There was only crying and door slamming. He was able to be talked down. HUGE improvement. HUGE. Yet I still had to say again that my boy has made stellar progress, that discipline isn't going to fix him. That taking away his slumber party wasn't a good punishment because he needs that social interaction, especially since he's homeschooled now. (Homeschooling is another thing I'm a so tired of explaining)

Discipline isn't going to help him, unless its something that warrants traditional discipline. What we do with him works. It's proven to work. Why? Because he is getting better. Because we, as his parents, no what we are doing. And guess what? He isn't always going to succeed and he's going to make mistakes. He's a kid and he's not perfect, but he's learning.

My husband gives these explanations so much better than me. It's too bad he isn't in a position to do any deep discussions. Even still, even though he's a therapist who specializes in children and has tons of Aspie kids on his roster, there are many people who don't trust his assessment of his own kid. The neurologist does, you know, the guy who is the expert in the field? And the neurologist trusts me, the mom, as being an expert on my child's behavior. But what does he know? *sarcasm*

I found myself wanting to say this week that people need to develop a thicker skin. My boy wouldn't lash out at a person he doesn't feel comfortable and safe. It's a twisted compliment. He doesn't mean it, he just doesn't know how to express himself. What he's saying is "I need you to understand me instead of judge me or tell me I'm a bad kid". Or he's saying "If I yell at you than maybe you'll help me through what I'm experiencing because I am terribly uncomfortable". Instead, adults just get mad or upset with him. 

I'm left wondering how you explain to people close to you that its not because he's a spoiled brat, but because he's autistic? How you put in terms they can understand? What is the magic combination of words? How do you avoid the frustration and hurt feelings?

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