as small as a world and as large as alone, madeofpatterns: youneedacat: “They did a study...

2:37am August 23, 2014

youneedacat:

“They did a study on sensory integration and it didn’t help autistic kids at all.”

karalianne:

into-the-weeds:

chavisory:

karalianne:

I was told that by a staunch ABA supporter once.

I didn’t have the words to counter this at the time, but here are the words now.

Did they use the exact same techniques with all of the subjects? Because that’s not how sensory processing differences work.

What was the criteria for inclusion in…

Also, a lot of “sensory integration” therapy involves aggravating the sensitivities in question. Which doesn’t actually result in desensitization, for the most part.

Just because the sensory therapies don’t work because they’re badly designed doesn’t mean that sensory differences in autism aren’t real or a huge source of surface behavior.

What the study actually found is that sensory supports didn’t decrease autistic behavior. The kids were still autistic. They weren’t assessing for calmness, quality of life, ability to focus, etc. Just indistinguishability. Which sensory integration…..doesn’t…..target…..

Thank you, someone knew what study it was! I never bothered to look it up because I knew it hadn’t been done properly anyway.

Just proves the bias of the researchers.

Which is one of those variables a lot of people don’t bother to consider.

Of course, it’s one of those studies that probably gets trotted out by ABA proponents as “see, it doesn’t work but ABA does” when, you know, sensory-related therapies aren’t meant to make someone “indistinguishable from their peers” they’re meant to help them calm down and stuff.

And yes, there are definitely people who practice sensory-related therapies incorrectly, too. Far too many people think all autistic people should be brushed or given deep pressure, etc. and that’s only true for certain people. You need to assess everyone carefully and watch responses and make sure that what you’re doing isn’t putting them into shutdown… which can look like calming down if you don’t know the person really well. And if it’s shutdown, well, you’re now abusing the person instead of helping them.

I don’t actually believe in sensory integration theory or sensory integration therapy. They’re simplistic and they don’t take into account how autistic sensory processing actually works. They’re just like these theories that someone’s painted over the reality, and they don’t actually mean anything. Like they’re too tidy. ”Hypersensitivity looks like this, hyposensitivity looks like that, seekers look like this, avoiders look like that, this is what we do for this, that is what we do for that,” and 99% of it is complete bullshit.

Autistic people do have differences in sensory processing, often major differences, but sensory integration theory is not an explanation of autistic sensory processing, nor is sensory integration therapy a solution for it, except sometimes by accident.

(My brother and I were both diagnosed with SID as kids btw.)

Cosigned.

They did the brush thing to me.

It hurt. They told me “It feels good. My daughter and I brush each other to calm down before speeches.”

I told them it didn’t feel good. They told me that it would, if I cooperated.

They told me it was really important. Because it would allow me to wear more clothing and not rip the tags out.

I didn’t consider that to be a very good reason.

I feel vindicated every time I see a commercial on TV that advertises tagless clothing.

I enjoyed brushing. And joint compressions. And some of the other things they had me do.

BUT.

They had no long-term impact on my life.

They felt good at the time and did nothing in the long-term.

Same with the exercises that were prescribed for my brother. The only reason he got better was he got older, it wasn’t the exercises.

And the thing is… sometimes the sensory integration exercises feel wonderful while you’re doing them. But once you stop doing them, they don’t necessarily continue to have any effect at all on your life, good or bad. And sometimes they have a bad effect, like a bounce-back effect where things get worse after you’re done, by contrast.

I just don’t trust sensory integration theory, sensory integration dysfunction (a diagnosis I got), or any of the ideas behind it, including the book The Out-of-Sync Child and anything derived from it.

I also found that book troubling in that it focused almost entirely on the more “physical” senses. My worst sense is vision and SI theory has very little to say about vision. I’m actually pretty good with kinesthetic stuff, which is what SI theory concentrates on most of all.

In fact, Donna Williams is the only author I’ve ever found who writes about the visual problems I have in much depth at all on a regular basis. Most people dealing with autism simply don’t deal with the fact that there’s this huge group of autistic people with severe visual processing problems. Possibly because they’ve all read Temple Grandin and think we’re all thinking in pictures.

(Mind you – Donna doesn’t think it’s possible to have severe visual processing problems and think in pictures at the same time. I disagree. I think you can think in a mode that you’re not good at perceiving in, for all kinds of reasons. But anyway.)

So for people like me, vision is very fragmented, it comes in in pieces. Things move that shouldn’t move, things don’t move that should. Moving objects appear and disappear at random instead of moving steadily. Large objects break up into smaller pieces. Lights glint off of things at weird angles. We see lights in the air that aren’t even there, possibly a long-term migraine aura, but often covering over actual things we’re trying to look at. We may get distracted visually very easily. We have trouble making sense of what we see: We may behave as if we have visual agnosias, almost. Not just prosopagnosia but more general agnosias that prevent the recognition of ordinary objects. (Except since it’s developmental rather than acquired, many of us can learn to recognize objects if we put forth enough effort.) Those of us capable of motion-sickness can end up very sick in new places because we have no pre-determined map of the place to fit all the shifting visual input into, and we get seasick. We may need it to be dark a lot of the time, and any little bit of light peeking in can cause us all kinds of problems. I experience a thing where sometimes the world looks just perfect visually, everything is lining up properly, but it’s teetering on the edge of falling apart, and the moment I get even the tiniest bit of visual overload, it’s like everything shatters into pieces and pixels. And sometimes the world does just look like pixels and nothing else. Sometimes I’m functionally blind and have wished I had the nerve to use a white cane, both to gain more understanding of my environment, and to signal to cars that I can’t see them (I often can’t see cars at the best of times). But I don’t because I don’t need people telling me yet again that I’m using something that shouldn’t belong to me because I’m sighted.

I do know that I’m better at making my way around things as if they are obstacles, than I am at identifying what those things are. Stationary objects, I mean. Like I can sometimes identify something’s position well enough to walk around it, but I won’t know that it was a garbage can. Other times, even that’s too much. When I went to conferences, I used to hold onto one end of a scarf and have a friend hold onto another, so that I could get a tactile/kinesthetic sense of where to go, without having to see people, because in moving crowds it’s just too much.

Anyway, there’s a very large subset of autistic people who have severe, severe visual processing problems and pretty much nobody talks about it. I’d say my visual processing problems vary from the worst end of moderate to extremely severe, depending on the situation. Like in the worst case I’m functioning as if I’m blind. In the best case things are about to fall apart.

Sensory integration people don’t talk about this. Sensory integration people don’t do anything about this.

The only people who ever helped me with this were the Irlen people. And everyone’s supposed to hate them, it’s pseudoscience, right? It may be pseudoscience in terms of the explanations they give for why it works. But the Irlen technique of choosing lenses was a godsend for me when it came to picking out colors of lenses that helped my visual processing a good deal. Unfortunately I can’t wear tinted prism lenses for a variety of reasons, so I’ve had to choose prism over tinted. And also, sometimes I’ve felt like…

…I grew up with really bad visual processing. My brain is not made to process things well visually. And when I had the Irlen lenses or other tinted lenses, sometimes it felt as if my brain was being forced to process visual information in a way that wasn’t natural to it. Like… my brain had already found other things to do with that part of my brain, maybe, and stealing those parts back was having a significantly bad effect on my ability to think and reason and do things besides just see well all the time. So I’d often deliberately wear untinted lenses because my brain wanted to function the way it had always functioned.

And I’ve heard of other autistic people having the same problem – fixing a sensory issue is not always a good thing. Sometimes fixing a sensory issue means mucking with something else that’s attached to it. And sometimes that thing that’s attached is more important.

And understand I’m saying that as someone whose visual processing issues are so severe that they result in frequent, horrible headaches and lots of other things I’d far rather give up. But somehow, what I give up when I wear tinted lenses is not something I’m always willing to give up. I’m not sure what it is that I do give up, but it’s some cognitive processing thing that gets all scrambled when I’m forced to concentrate on vision all the time.

I think there’s a reason that my earliest visual memories are of patterns, not of things. And that only as I get older do they start resolving into actual objects and stuff. And I think it’s a good thing that my brain doesn’t always do visual stuff very well. I think something has taken its place, something very important, even though I couldn’t tell you what.

And none of these things are things people consider when they start messing around with the senses of autistic kids. There’s just an assumption that we’ll like it that way. Now, sometimes we will like it that way. But sometimes we won’t. And I think you have to be very careful when making changes, about things like that.

And it’s not about severity. My visual processing problems are extremely severe, the same severity certainly as some people who won’t go anywhere without their Irlen lenses, sometimes more severe than people who won’t go anywhere with their Irlen lenses. It’s just that my brain has made a tradeoff and I kind of like the tradeoff it’s made. I’d rather accommodate my visual problems than fix them. That’s a personal choice and it’s not so simple as “well sie must not have severe problems if that’s how sie thinks about hir vision”.

Anyway… I’ve never seen sensory integration people deal seriously with vision. And I’ve rarely seen sensory integration people actually fix a sensory problem in the long term. The best they seem able to do, is to get the problem to go away in the short term while doing the exercises and maybe shortly thereafter.

And I know I can’t be alone: I’m visually completely scrambled, highly highly kinesthetic, and have auditory processing problems but nowhere as bad as my visual processing problems. This fits no autism stereotype anywhere. As far as I know. But I have known lots of actual autistic people that it fits.

And I would not be shocked if sensory integration therapy didn’t work, because I’ve never really seen it work for real. (And the words ‘sensory diet’ make me feel vaguely queasy.) It may be that they just weren’t looking for the right results. But it may be that it really just doesn’t work except in very short-term limited ways. I could see that for some people it could take the place of stimming for helping out with overload or something like that. But still… I’m very skeptical of sensory integration therapy because the theory (including that put forth in The Out of Sync Child) is so very very simplistic compared to how our bodies actually work.