1:32am November 14, 2011

“You have got to keep autistic children engaged with the world. You cannot let them tune out.”

Temple Grandin (via hvisla)

And this is why Temple Grandin should not be viewed as The Ultimate Source of Truth when it comes to autism. I’m sure this was good in her own case, I’m sure it’s good for some others, too.

But when the world is triggering, ovewhelming and making a person miserable, forcing them to stay engaged with said world is abusive and qualifies as psychological violence.

Tuning out is a coping method for a lot of people, including myself. Tuning out is a life-saver. Tuning out means that I don’t build up enough stress to cause me to have meltdowns at the drop of a hat. But apparently this is bad? Uhm… I beg to differ.

(source: jemimaaslana)

(via aspergersmomof2)

I agree completely with you.

(via sakuraforest)

Reblogging to give credit.  Tumblring from my phone is apparently not a smart idea at 3am, for it causes many mistakes.

I’m one of those people that Temple Grandin only occasionally has the courtesy to mention when she says something like this. Where if I’d been treated the way she advises (to use any means necessary to get the autistic person to stop tuning out) it would’ve had really bad consequences. Scratch that “if” – I was treated that way sometimes and it was awful.

Like… entire world ripping apart painfully at the seams.  (In a somewhat literal way – overload me and the sensory world shatters into fragments if it wasn’t that way already.)  Everything fading to white, losing the world, losing my body, losing thought.  Disappearing.  Migraines.  Terror to the point of trauma.

Sometimes she acknowledges that some autistic people (which she puts into a subgroup – typical for her but I don’t believe in it without evidence – called regressive-epileptic) have sensory systems way too fragile to pull that stuff on.  But only because Donna Williams wrote to her and said so. Other times, it’s as if she never was told anything about it. (Similar to her assertion that autistic people are picture thinkers. If pushed she’ll acknowledge that not all autistic people do that. But then she’ll again create a dubious and too small set of other categories. But then she will go right back to making general statements about picture thinking.)

Whatever the issue, I’ve found her advice is nearly always wrong for me but often presented as universal. Awhile back she co-wrote a book about social skills. She said that anyone no matter what could learn certain skills and there was no real excuse for inability to learn them.

I ended up writing one of my patented way-too-long blog posts about many of the ideas in the book. I can’t believe how many times I’m referencing my own blog posts here today. But here’s the post:  Colored Spoons… and Social Codes. (Note:  Some people have warped that post into “She doesn’t want Temple to teach social skills.”  Suffice to say that’s not at all my point.)

Among things she doesn’t acknowledge unless pushed, if at all (and even if she acknowledges it, she doesn’t apply it to the situations she discusses, again unless pushed):

 
• Inability to easily (if at all) comprehend, and differentiate between, sensory input. Including from one’s own body. 
• Sensory input that comes in fragments. For instance only seeing pieces of an object, which wiggle around and move behind each other and all kinds of other things. 
; 
• Extreme sensory “noise”:  Tinnitus. Colored spots and clouds made of tiny pinpricks of light. Constant paresthesias or burning sensations on skin. Etc.  This stuff can be so strong it overpowers external sensory input altogether.
 
• Any other sensory-perceptual issue that isn’t straightforward hyposensitivity or hypersensitivity. 
• Inability to locate one’s own body, or specific body parts. 
• Inability to localize body sensations. 
• Difficulty or inability to start, stop, switch, or combine movements, complex actions, thoughts, feelings, or memories – unless triggered or prompted in ways that differ for each person. 
• Involuntary or nonvoluntary movements and noises, that a person has to get control away from before they can move. 
• Triggers for movement working against the person. For instance, going into the kitchen and ending up opening and closing drawers and cabinets, “using” toasters, blenders, etc., and having trouble getting to what you need to do. 
• Strings of movements that are done as a whole even when only part is necessary or even legal. For instance, someone trying to take off his shirt in public, but ending up stripping naked because he can’t stop the sequence in the middle. 
• Freezing up and having zero control over movement. (May look like extreme slowing or stopping entirely. But may also look like lots of “stimming” movements but no control.)
• Automatically responding to, say, someone pushing your leg forward, by pushing it back a second later (like the “catch” on the lid of some boxes).
 
• Any other motor issue more complex than coordination problems. 
• Not only trouble with language, but trouble with any kind of symbolic thought including picture thought or any of the few other kinds of thought she thinks we can have.  Finding even “concrete” words way too abstract.
 
• Being unable to pick up on deliberate body language, but able to pick up on the instinctive body language underneath. 
• Intense, uncontrollable empathy – feeling people’s feelings so strongly it’s overloading.  
• Ability to “read” other autistic people (of some kinds) extremely well. 
• Tendency to shut down easily, and in extreme ways, where it’s not usually possible to just push through it. (Like:  No ability to move. All senses gone. No thoughts.  No memory.  Or just one or two at a time.)
• Language problems due to learning speech in a way that has nothing to do with communication. Meaning your brain pathways or whatever are already formed for that and you have to fight it in order to communicate. 
• Having severe receptive language problems, with or without superficially good (but not necessarily communicative) expressive language. Even though it’s so common it’s written in the frigging DSM, which I otherwise expect to not represent much if anything meaningful about my life at all. These problems can persist into adulthood even in people who’ve finally learned what language is about.
• Having a default state of mind that’s ‘below’ language, idea, etc., and requires active effort to push up into any of that stuff, and active effort to maintain it for every single second that it’s maintained..
• Other language/communication problems more complicated than slow speech or  language development. 
• Trouble putting actions into the right sequence.
• Being on a completely different time scale than everyone else. So that everything you do or think happens much slower or faster, often a combination of the two at once. For instance talking so fast nobody knows it’s speech, while taking an entire day to manage to move in a particular direction you meant to do all along, and responding to what someone said an hour after they said it, while thinking so fast on another topic that you respond way before anyone is ready. 
• Having a thinking process that’s more about intuitive noticing non-abstract patterns, than it is about putting ideas together in a logical abstract sort of way. 
• Having abilities that are not always the same, but rather always shifting and changing, with some always disappearing to make room for others. Little to no voluntary control over this. 
• Having a default state of extreme inertia – not much movement, thought, etc. unless acted upon by something from the outside. 
• Such sensitivity to overload – both cognitive and sensory – that one can’t help but to tune out. A lot. And the result of not tuning out can be a pretty epic crash. (My “favorite” are the ones that make me lose the sequence of everything such that when I recover I’ve pissed on the floor somehow with my clothing half on and half off – before losing all awareness of anything for awhile.)
• Something where I honestly don’t know if it’s a one track mind or something that looks like one because we have more input to process.  But… like some people will say one track means you see but you can’t hear at the same time. For others one track will be much smaller and meaning only a teeny piece of their environment can be seen at all. And it’s those much smaller versions of one track that she generally forgets.  This can literally mean its impossible to both do something and remember what to do, at once.  Which knocks a big hole in any rules she uses that involve having to remember the rule and act on it.

That’s just what I could put together at the moment from remembering how I and some others I know have experiences she rarely takes into account when pronouncing that “there’s no excuse for poor hygiene” or whatever.  I suspect she is one of those people who thinks that if you know something you can act on that knowledge, and if you know enough to communicate in words then you know enough to do that thing.  Because I know she knows there’s autistic people who can’t do such things: but I bet she assumes that we just don’t know enough to do them. So we are either ignorant or lazy. Or something.

I am routinely astonished at how often she assumes that all autistic people have her abilities.  I find some of her writing interesting. But when she sits there and gives out advice that would be horrible for anyone like me, without acknowledging this fact, I start to get pissed off at the way people take her word as universal. (Which is not her fault – I’ve been in a much less intense version of her position – but when you know people are doing that to your words, it’s a really good idea to be careful what you’re saying to people.)

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