Sensory Differences vs Intent

[el0fant]

I thought this was interesting.

From:
www.sandiego.edu/soles/documents/Session%20Descriptions%20Summer%2008.pdf

Session 2: Sensory and Movement Differences: How do these differences affect a person?s participation
Martha R. Leary, MA, CCC-SLP

People labeled with autism move their bodies in ways that are unfamiliar to most of us. Some people rock, repeatedly touch an object, jump and finger posture while other people come to a standstill in a doorway, sit until cued to move and turn away when someone beckons. Some behaviors may not be intentional, but rather artifacts of the difficulties a person may be having in organizing and regulating sensation and movement. Other behaviors may be subtle signs of the desire for relationship or expressions of meaning. Detailed personal descriptions of movement and sensory differences found in other disabilities have given us some clues as to what it may be like to deal with various symptoms such as compelling impulses, a loss of conscious control, lack of initiation, akinetic moments and unusual ways of being in the world.

And this:
www.autcom.org/articles%5CMovement.html

Brilliant! Thank you for linking. This is something that I;m sure impacts enormously on ds1.

That's interesting, I have always felt that many of Ds2's problems result from sensory and motor difficulties.

The severely autistic typers talks a lot about movement problems. Especially initiating movement and lack of control over impulses.

There was quite a bit about movement at IMFAR- I was very over-excited .

Lucy Blackman (non-verbal adult) tells a funny story about seeing McDonald's and then typing 'don't let me make you go to McDonalds' whilst at the same time forcing her stunned assistant through the door. Unintentional behaviours probably form about 90% of what ds1 does- makes teaching him incredibly interesting (you have to teach whilst being strangled).

Fascinating...althought I still haven't worked out which of DD's behaviours are intentional and which aren't, if you see what I mean. (not autistic, SLD, but there are similarities sometimes).

oh definitely similarities- it's the ASD group with SLD who have movement as a huge problem (although that's only just being realised).

I find it really hard to tell as well. But the growing literature by the people who are affected help. He does look as if he totally means to strangle me but according to the literature it's pretty unintentional.

Thankyou for posting this.
I received my info pack from nas for parents of dcs newly dx asd which has a (narrow) definition of autism and frankly I was wondering if ds new dx of autism was appropriate? I suppose the definition has to be the areas of difficulty all people with ASDs have! But frankly ds difficulty with social communication is dwarfed by comparison to his other difficulties including understanding, attention control, general communication, sensory issues and movement control. I suspect ds neurochemistry is different to mine! He stood on my (sore) toe looked at it but took seemingly several minutes to remove his (big) foot! Other times he seems to do then realise/think!! He often says things are accidents and somehow I kind of understand that often they kind of are. He can be very distressed when 'accidents' happen (like pulling off a flowerhead, licking instead of kissing me etc! And yes he used to strangle not hug me too and it felt very real!!
Forgive long ramble - but (lack of perfect)intention control does make sense to me!

When I see folks (like Dov Shestak, Tito Mukhopadhyay, many others) who APPEAR very much to be "in their own world", but have proven themselves to be very much present, I always wonder how many others are in the same boat, but as yet have no mechanism by which to show it.

What if tens of thousands of parents are being sent home with well-intentioned (but incorrect!) brochures about deficiencies in intellect, imagination, theory of mind, desire to communicate, and so on, when the the actual differences are in initiation, inhibition, and sensory processing? What a difference it would make for a child, if the "triad" were defined differently, no?

This is what bothers me so much about that Autism Speaks video way back when, when the mom says some pretty negative things under the assumption that her daughter is totally oblivious to what she is saying. What if the child has some understanding, but simply has very little power to show it?

I think it's really cool, jimjams, that you're doing a communication program with your DS1! How tough it must be teach while being strangled! I applaud you.

That's exactly what I think the major problems are in severe autism elofant.

I showed ds1 a video of Dov when he had first learned to type. I explained to ds1 that Dov in the video was the same sort of age as him, that he was autistic like him and he couldn't talk either but he'd learned to type/use a letterboard to communicate. DS1 watched transfixed, then grabbed the letterboard next to the computer, spelled out his name (first time ever- no help needed) then jabbed at the computer and at Dov.I figured he wants to learn to type. So we're trying.

I think the woman on the Autism Speaks video had a bit of a rough ride in that she said she wanted to drive off a bridge rather than send her daughter to a particular school, but that seems to have been interpreted differently on many blogs. BUt you're right and it's only since the Dov video incident that I've started talking to ds1 with the expectation that he understands. And THAT has made a huge difference too. I've told him that I know it's difficult for him to control himself (and stop strangling me ) etc, but that I know that he understands. He's responded really well to that.

Oh and this summer is going to be a summer of typing and shiatsu. Ds1 is seeking deep pressure all the time, and spends a lot of his time with his muscles in spasm - I'm hoping that the shiatsu will really help calm him. I spoke to the practitioner today- he's very experienced with LD's and autism (and PD's) so will be able to cope with ds1- he sounds as if he's used to being hit

"What if tens of thousands of parents are being sent home with well-intentioned (but incorrect!) brochures about deficiencies in intellect, imagination, theory of mind, desire to communicate, and so on, when the the actual differences are in initiation, inhibition, and sensory processing? What a difference it would make for a child, if the "triad" were defined differently, no?" by El0phant 18.27.

My God - this is EXACTLY the way my thoughts have been travelling about DS2 recently, ever since I did an online course on Floortime and regulatory sensory processing. There's lot of fascinating stuff on www.icdl.com - especially in the transcripts of Greenspan's radio broadcasts (read 'Misdiagnosis of Autistic Spectrum Disorders' in particular, which is very interesting about what he calls the 'primary and secondary symptoms' of autism).

I am starting to wonder whether thinking in this way might change my (and other people's) perceptions of DS2 - and the way we treat him. Am getting quite excited in fact! (And not because I think he doesn't have autism - but because I'm beginning to realise that it's so much more about sensory stuff than social with him).

Link here, I hope...

www.icdl.com/distance/webRadio/documents/RadioShow2004022604L.pdf.

Hi sphil

tried to reply to your email but my email is playing up. He's much calmer today after a good night's sleep (thanks to melatonin).

Oh good . Did you get my email about my email address changing? Current providers stop providingon 30th June, bastards - have spent all evening printing out vital links, messages etc.

Many of them from you!!!

I did get that one. Have worked out what I was doing wrong so can now send again. Will email you tomorrow The shiatsu guy made a few suggestions on the phone today as well and I've tried a few this evening and ds1 seems to be responding well - seems to like it anyway, so I'll keep on with it until we get to see him in July.

GM have a really good understanding of the intentional movement issues as well I think - when they talk about the difficulties in responding on demand on time for example.

Yes - it'll be interesting to see what GM say about DS2's latest video (same one you've got). There's a lot of failure to respond on demand on time in there!

On another tack, have just contacted a Floortime practitioner - works in the US but spends the summers here (in Dorset!) Might get her to come and do some training at home - she's reasonable compared to ABA consultants, though will still be a lot of money. However, we've decided not to go to Florida next year - flights were obscenely expensive (fuel crisis I think). Still committed to ABA for stuff that is difficult to teach otherwise and for fast trials, but think Floortime combined with sensory integration might be the way forward now for actually getting DS2 to USE what he learns.

I saw her listed- let me know what she's like.

Am still converting your DVD so probably won't get to see it until Monday evening/Tuesday, but the slow motion bits I've seen in the conversion look really good. very interactive.

Sensory/motor stuff is so key to ds1 as well. Needs more work than cognitive. about Florida, but it does sound expensive.