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Here are some suggested organisations that offer expert advice on special needs.

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21 replies

sparky159 · 16/09/2010 11:36

sorry-im useless with links-but
today MAIL ONLINE[health] has got a article about a drug that supposidly helps autism.

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StarlightMcKenzie · 16/09/2010 15:19

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amberlight · 16/09/2010 15:31

"Autism charities welcomed the trial, but stressed that the number of people taking part was small. The results could also be biased because the drug was not compared to a placebo, a harmless ?dummy? drug. And the assessment of the children was subjective, meaning that they could be misinterpreted."

Tricky. You can get the same results of calming us down by giving us almost any 'tranquilliser', but that doesn't mean it's a good thing or an answer. Still, we have to see what future research shows, I guess.

TotalChaos · 16/09/2010 16:28

interesting but raises more questions than it answers. and strongly doubt that any one medication could be useful to all those on the spectrum, as there are so many different difficulties and/or comorbids.

PipinJo · 16/09/2010 16:34

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amberlight · 16/09/2010 16:50

Just background info:

We still don't have definite proof either way that there are lots of different autisms. The brain scans seem to show the opposite, from the results now appearing. We're awaiting news of the ARC scanning results on 100 people for further info on that. There are certainly lots of different presentations of autism, e.g.

Mild autism
Moderate autism
Profound autism

and sometimes there is also (but separately)...

mild learning difficulty
or Moderate learning difficulty
or Profound learning difficulty
or High IQ
or Genius level IQ

and sometimes there is also (but separately)
mild speech and language disorder
moderate speech and language disorder
profound speech and language disorder

etc.

The combination of the different disabilities and a child's character and upbringing can make it look like it's different autisms, but autism at its core is always the same two things...

Social cluelessness because we can't see and process the signals due to an amygdala/temporal pole communication failure

which is combined with extreme need for routine and predictability.

There may or may not be extremes of sensory differences too. Often there is.

Or at least that's what we're told at the moment, based on the new brain scans and research. Much may or may not change in the next three years before the DSM V is out.

StarlightMcKenzie · 16/09/2010 17:40

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amberlight · 16/09/2010 17:52

Yup, I have. Very interesting for them it was, too. I'm also on the waiting list for a new project coming up, and do a lot of 'guinea pig' types of testing through the major research centres. (There's never any actual guinea pigs, though, which I find very disappointing Hmm)

StarlightMcKenzie · 16/09/2010 17:54

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amberlight · 16/09/2010 18:53

Only in a Shock sort of way, I think. And I absolutely hate scans 'cos of the scary machinery. But they do a job.

StarlightMcKenzie · 16/09/2010 19:05

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PipinJo · 16/09/2010 19:32

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amberlight · 16/09/2010 19:43

I can talk about autism 24/7 so it never worries me to talk about any aspect of it Grin. The knack is getting me to shut up.

There are all sorts of opinions about autism, socialising and the internet. A colleague of mine (professor in IT and ethics and autism work) says that the internet is a Bad Thing for socialisation. Some say that computer use can rewire the brain to make people antisocial, and some say that children who use the computer or TV too much will have poorer social skills. There's not a lot of real brain research to support this or deny it yet.

I suspect there's a little bit of truth in all of this. Some games, for example, really are addictive and can make some children very very aggressive if they are removed from them.

But research recently showed that many autistic individuals are very good at socialising online, in our own way. Or socialising side by side in hobby-related activities, too. There are just so many autie/aspie sites now where huge numbers of us turn up to chat/share info etc. I go to specialist collectors events, sci-fi events etc and there are a lot of us at them, thorougly enjoying ourselves and doing what we do - share info and stuff. For us, that's the joy of friendship. It doesn't have to be eye-contact=emotion=connection for us.

IT has big advantages in learning to communicate in words in ways that people don't get offended by (er, get offended less often?? Blush ).

It means I don't get my brain wiring fried by trying to make eye contact, since that bit of my brain isn't working/isn't connected in, so there's no point in trying to use it. (It just short-circuits the whole communications bit and hurts like hell).

It means I make new real-life friends. I've met so many people through using the internet first and getting to know them, then meeting them, then being really good friends with them. And keeping in contact with them on here/facebook/other sites too.

For me, it works. And it can work for many other people if they are sensible about how it's used. Some of course are badly affected by low IQ or speech and language conditions that mean that online communities need to be much more specialised and picture-based etc before they can join in or even wish to. But I think technology has helped most of us in some way so far.

We can over time learn to mimic body language and eye contact and tone of voice, but I think it's never ever going to be natural for us, because it's like a blind person mimicking that they can see, or a deaf person mimicking that they can hear. Letting us communicate with others in ways that respect our needs can be a big plus-point I think.

amberlight · 16/09/2010 19:53

Pipinjo, yes, loads of new research from all over the world where they're doing scans and dissections and finding real differences in brain structure, lots of it to do with the amygdala and the temporal pole and the connecting bits between them.

OK, let's take a 'normal' person first:

Your eyes see someone and send the signal straight to the "is it a person or a tree?" bit first.

Then your eyes are supposed to look for their eyes and their face, and send that info to the bit of the brain called the Amygdala which is buried right in the middle of the brain. It checks for anger or fear in the other face.

If they look angry or fearful, it presses the PANIC button and all hell breaks loose. (Run/hide/scream/shut down/shake with fear etc).

If they don't, it asks a bit called the Temporal Pole (bit of the brain behind your ear) to go find everything it knows about that person. Their name, how long you've known them, what about them, what do they like, what is their body language doing etc. This bit is super-fast and it can work out a whole group of people at once. Amazing.

Then the rest of the brain can co-ordinate all the body language you do, and link it in to this superfast wiring, so you mimic that person's smile, tone of voice, etc. Congrats, you've made a friend! Maybe lots at once!

Except with us, our brains look at the person and can't work out if it's a person or a tree. And if it sees eyes, it gets the message to the Amygdala, which is sort of broken, so it presses the panic button anyway just in case. We're now totally panicking because there's eyes looking at us.

Then it can't find the Temporal Lobe and can't ask who the person is or tell you about them.

We haven't made a friend. We've no clue who this is or what their intentions are, but it sure feels scary.

I need people to use words. "Hello, I'm Helen, and I'm your friend! Would you like a hug?" That sort of thing. Takes some getting used to, but that's how it works when the whole wiring-bit isn't connected up the same way.

Weirdly, though, that Temporal Pole bit in our brains is used for data storage instead, it seems. We can go get data from our brains on stuff at the same speed as you go get data on people - incredible detail, incredible processing time. (generalising throughout).

More research to be done, but it's really interesting. Well, it is for Ambers anyway.

ArthurPewty · 16/09/2010 20:10

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amberlight · 17/09/2010 07:59

It's not clear from any of the research reports whether arbaclofen is different from arbaclofen placarbil, which is used to treat indigestion.

If what it's doing is making the children more comfy in their digestive systems, that would definitely make them less grumpy. I'd want to see how it differs from giving them any other digestive stuff like Rennies.

Worrying that they are testing it on 6yr olds, I think, and that a modest number of the youngsters taking part actually had quite bad side effects and had to stop.

They need a bigger study with proper placebos/control subjects, definitely.

merrymouse · 17/09/2010 10:51

"Hello, I'm Helen, and I'm your friend! Would you like a hug?"

Interestingly, this reminds me of how DS sometimes tries to communicate with new people. He is very friendly, but sometimes gives people a bit of a communication dump about his life history. It makes sense that he would communicate with others in the way that he would like them to communicate with him.

kerpob · 17/09/2010 11:34

amberlight - thank you so much for your contribution here - it really helped me understand my two DSs with ASD a little better!

amberlight · 17/09/2010 12:37

Merrymouse, yes indeed. I share an awful lot about me, sometimes unwisely, but I can't tell who's really a friend and who isn't so I have to risk it. If words and touch are all you have to be able to find out about someone, that's what you use.

kerpob, glad it may have helped a little. It does sometimes.

PipinJo · 17/09/2010 17:03

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woolytree · 17/09/2010 17:24

Agreed...very interesting insight into my DDs ASD. She is terrified of scenes in films that use close ups of eyes, even in cartoons...runs out of the room, chats obsessivly about a DC at school but is yet to make friends...I asked DCs Mum.

Thanks Amberlight.

amberlight · 17/09/2010 17:44

Pipinjo, no, I'm really not. Just an ordinary but stupidly determined one, who's never taken 'no' for an answer in her life Grin Blush

I think that our sheer determination and obsession can work in our favour: Get it wrong, try again. Get it wrong again, try again. Adapt it very slightly. Get it wrong again. Drat. Try again. Keep doing this for 5,10,15, 20 years, eventually it works.

Trouble is, if we get really good at disguising it for a while, we have whole new problems where no-one believes we're autistic and may need some help/advice/protection/whatever might apply. It can be a real problem.

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