3:14am May 3, 2015

“
If you’re having trouble figuring out why your child is engaging in some form of disruptive behavior, there’s a list of very common causes to help you out on the data sheet. Once you have your data form filled out, you’ll probably see a pattern that can be explained by one of the following possibilities.

– To Avoid a Task –
– To escape from a task –
– To get attention –
– To get something [they want or need] –

– RULE OUT A SIGNIFICANT PHYSICAL CAUSE FOR THE BEHAVIOR It’s important to rule out any serious physiological cause that could be underlying the disruptive behaviors before you start out on a course of interventions. Some physiological conditions, such as an ear infection, a cold, or a headache, can cause pain or discomfort and lead to disruptive behavior. For example, sometimes a young child with a bad ear infection will bang her head against the railings of her crib. Allergies can also result in some types of self- injury, such as repetitively picking at itchy areas of the skin— scabs form, and the child may pick at those until there’s a cycle of never- ending sores. Other painful situations like a cold, headaches, or even PMS in adolescents may cause temporary increases in problem behavior. Obviously, you’d want to take care of the physical problem in all these cases, rather than leaping ahead to behavioral interventions.
”

—

Lynn Koegel, Overcoming Autism

When I first read this list of “reasons” autistic people have meltdowns, I almost threw the book across the room. I was alone, so my reason couldn’t have been any she mentions here. Oh yeah, I was having a PTSD-like reaction to finding out what the author of the book thought of me when I started screaming and banging my head in her presence.

Which was because she had just:

Ignored everything I said about fluorescent lights making it impossible for me to think
Ignored everything I said about being unable to talk to more than one person at a time
Told my cognitive interpreter to stop “talking for me” and let me talk, even though I could neither talk nor type at this time, and even though I was indicating that my cognitive interpreter was expressing my thoughts perfectly well.
Ignored, for the billionth time, everything we said about how we wanted help teaching me daily living tasks, and instead insisted all I needed was help with social skills because autism was a social disorder not a daily living skills disorder
I was starving and she refused to acknowledge it
But somehow “being completely at the end off my rope after trying hard for weeks to communicate the truth” was not among Lynn Koegel’s possible reasons for a meltdown. Neither were sensory issues or starvation. I’m pretty sure she doesn’t even believe in sensory issues as a significant part of being autistic. I’ve talked to other adult auties whose interactions art her autism center were just as frustrating.

The only good thing I got out of going there was her telling me I clearly met the criteria for autistic disorder and should get my shrink to validate that with a diagnosis other than PDDNOS, presuming everything I told her of my history could be verified by my parents (it was, easily, and I got a fax with the new diagnosis within days). But I had been told that before so I think it would’ve happened even without her.

Oh she was also the one who told me that if we worked on my “anxiety problems” I wouldn’t need to communicate by keyboard as much. Anxiety was the only concession she made to the concept of overload. And it wasn’t much of a concession. I had just barely heard of autistic catatonia. So I couldn’t explain to her my speech had been getting less reliable for years by then, and that the more I learned to truly communicate, the worse my speech got. In this book I am finding out she doesn’t like AAC devices except as a last resort, and likes to force autistic children to speak at all costs. Even AAC is only a bridge to speech for her.

When I finally had my massive meltdown because I’d reached the end of my rope, she took me to a counselor where she and other people explained my behavior and I couldn’t understand a word they said except towards the end, when everyone agreed I did not belong on a university campus. Which meant when I visited MIT years later (as an honored guest) I kept waiting for someone to throw me out. There’s other problems with MIT but that’s beside the point.

I have very little respect for anyone who makes their living off autistic people, but won’t listen to us, won’t allow cognitive interpreters, won’t believe in sensory issues, and can’t understand how we could lack daily living skills. Also anyone who thinks the only reason for intermittent speech is anxiety and thinks she can tell at a glance in five seconds of meeting someone, that they have no academic problems (I had nothing BUT academic problems at that time).

Oh and next time an autistic person came took that university they were told “We had someone like you recently. It didn’t work”. Grrr.

Notes: