Autism Watch: 2007

When People Don’t Believe

Posted on: January 30, 2011

My son’s got autism. He is extremely smart, is verbal and can speak clearly, and is in a regular education class, but he also can’t tolerate certain textures in his foods, doesn’t like eye contact, flaps his fingers, can’t deal with loud sounds or sudden changes in his schedule, lacks social skills, has personal space issues and a strong need for sameness and repetition, as well as difficulty monitoring his moods and anger, can’t stand tags in his clothes or seams in his socks, has to have everything a certain way or he could flip out, and sensory issues ebb and flow. Yet, because he can speak and is so smart, the autism isn’t the first thing you see, or even the second. As a result, some people that don’t live with us — those that haven’t seen him lick everything in sight, flip light switches on/off, line up chairs in waiting rooms, drop to the ground and strip, run away with no fear, meltdown from rage that fades into apathy — don’t get our concerns. They don’t understand why we push so hard for services in school, why we keep things on an even keel no matter what else, or why we treat him any different. Well, uhm, he is different, and the reason you can’t always tell it at first glance is because of all that we’ve done for all these years.

There was a couple of years early on that we barely left the house, and if we did, it was rarely as a family, so few people aside from our closest and most supportive friends saw the ordeals. We could show videos of the worst of the worst, pictures of the vacant stare, or reports from the nine diagnosing doctors and double-digit therapists and other professionals who worked with him. But why should we have to?

What do you do when you run into people who insist on him just being like everyone else, as though better discipline or a spanking or taking away privileges/possessions could just fix it? What do you do with those people who feel like you just need to have it pointed out that he’s not ‘that bad,’ or that if you just throw him out there and let him learn, he’ll do just fine.

Or do we really need to do anything at all? Is it their problem, or something we need to work on?

What are your thoughts?

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1 Response to "When People Don’t Believe"

Wow this sounds just like my situation with my daughter. She can speak too she has a problem with receptive language though she can “seem” like she understands and knows what to say like “okay” but then proceeds to “disobey” instructions. The school considers her tantrums “defiance” and her learning disability is due to “not enough practice at home”.

It has been a year long IEP battle that has gotten very emotional and very tedious. The school has insulted me over and over again because of my daughter’s difficulty in getting homework done. The teacher actually put in the report card comments that “…..doesn’t get enough attention at home”. This was the whole reason they thought that she wasn’t able to do schoolwork.

She uses phrases from TV but she can often use them in an “appropriate” fashion. For example when she says she doesn’t understand something she will say “I don’t know what you’re talking about” which seems accurate but it is a phrase she has heard on TV or heard someone else say in a similar situation.

The fact that she can talk is the reason the PDD-NOS diagnosis was so delayed. She has all the symptoms tantrums, sensory issues, learning disabilities, social difficulties, repetitive behaviors etc. However, she seems to get her point across. If you really know my daughter you would realize she never talks about thoughts or feelings she talks about thinkgs and places and “FACTS” she doesn’t understand sarcasm and humor everything is literal.

The school has done whatever they can to deny her services but I have pressed on and I will still press on until she has everything she needs.

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