Originally Posted by
fisharmor
I have the exact opposite problem - an autism diagnosis for something that is clearly not autism, yet is clearly a problem.
My daughter is turning 5 next month and is almost totally nonverbal. She knows what a toilet is for but just isn't interested at all. She's clumsy - if I stand her up on an overturned bucket she just stands there looking pathetic, because she knows she doesn't have the muscle tone and/or coordination to get down off it without falling. Plus a bunch of sensory issues, where she doesn't feel things the same as other people.
We took her to the "experts" early on, and they said "Put her in childfind". Childfind is a program that spans a couple counties here in NoVA, and is the public school's "shove a bunch of 'tards into one room" program. We knew as soon as we found out it was tied to the public schools that we wouldn't be doing it, but relatives pushed us, so we went and read the fine print on their site...
...and found out that it's also connected to CPS. So then we went through a couple months of explaining to everyone that putting a child that regularly walks full speed into doorframes (and can't really feel herself getting bruised) into a program tied to CPS isn't the best idea. I found it very interesting when the staunchest defenders of CPS would repeat over and over that I'm a great parent and they're not coming after me. I would reply with "You know, I only have to find ONE example where they went after a great parent for this to be a bad idea. The fact is that that's a possibility. Do you deny this?" And nobody can.
So we saw a child psychologist last year who seemed like a straight-shooter, who was the first person to offer to do a formal work-up on her. I was really hopeful because he kept talking about cutting through the bull$#@!, and had some bad things to say about Childfind (namely that they'd put her in a room full of other kids and call it quits). But then the diagnosis came in: Autism, moderate to severe.
The problem is that the word "autism" was chosen to describe a specific condition. It comes from the Greek word autos meaning "self". As in, it was specifically meant to describe people who are wrapped up in themselves, and unable to interact successfully with others. At least that's what Leo Kanner meant by it.
And we're talking about a girl that I have to watch while we're out - and we go out often because she doesn't like being in the same place for long stretches - because while we're out she'll go and sit in the laps of complete strangers or actively try to con them out of their food.
A valid diagnosis can't be given both to people who are extremely insular, do not like leaving the house or changes in routine, and do not relate to others well, and also to people who are extremely outgoing, take delight in changes in routine, and know how to get strangers to part with their belongings.
So it turns out that straight-shooter we thought was doing to do us right was most likely just giving us a meal ticket. We certainly have gotten ABA therapy without a hitch with that magical autism diagnosis, and there are other sources of "free" help that wouldn't be possible without it.
The best hope we have so far for our obviously-not-autistic daughter is neurofeedback therapy. It's like chiropractic in the sense that it's not mainstream science.
It's also like chiropractic in that they don't take insurance, and as a result they are extremely flexible with scheduling, and we got in for an initial consult in under a week....
When they started they wanted to do a QEEG wherein she'd have to sit completely still for 10 minutes at a stretch. We told them that was completely out of the question, unless she's asleep. They did 20 sessions of neurofeedback with the goal of "calming her down", which I thought was pretty vague. Well it turns out they were doing this with the mission of getting her able to sit still for the QEEG, and last week we found out they were successful, as she got it done and the data they got back were beyond expectations. Now we have a better brain map and they have a specific targeted plan for helping unlock her.
I've also noticed that near-constant screaming has been replaced almost completely with babbling, and there is significantly less flotsam to pick up around the house at the end of the day. She hasn't ripped up all the pages in a book in months now.
If any of you has a child with developmental problems, please, look into neurofeedback. The whole theory of it is that the patient self-trains his brain into working better. Then the patient is able to have things click into place, and start making connections the way the rest of us do by default.
ABA and autism therapies, on the other hand, rely heavily on external behavior modification - mainly through endless repetition and habituation. The patient only figures out what is being required because he's done it hundreds of times. It's basically treating people like lab rats.
Or worse, they go to the pharmaceuticals.
Well that's my story of "That's not autism". At this point, given my experience, I refuse to believe autism is even a real thing. It's just the latest "that kid is $#@!ed in the head" bucket they're throwing people into.
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