WTF is the NAS website on about????

[jimjamshaslefttheyurt]

Have just looked up triad of impairments as I am talking to some SALTS tomorrow and wanted to have a very quick blast through the triad - so looking for something easy and found this:

"Some people with autism may not speak, or have fairly limited speech. They will usually understand what other people say to them, but prefer to use alternative means of communication themselves, such as sign language or visual symbols."

WTF??????
That is just plain WRONG. Most individuals who are non-verbal are non-verbal because they have severe apraxia or because they have no language - or both.

I am so utterly livid- who the hell is running this organisation now??????

Prefer??????? OMG.

I have sent a comment to the editor.

Did you see Paul Shattock's reply to Michael Fitzpatrick's anti-biomed article in this edition of Communication? Fitzpatrick had quoted that case where the boy died supposedly as a result of chelation, (but failed to mention it was because it was he was given the wrong drug). Shattock wrote that he had already corrected this misassumption in a previous issue and expressed his disappointment that the editors had let the assertion go unchallenged yet again.

They really haven't got their eye on the ball have they?
DS2 is desperate to speak - I would also question the assumption that he 'usually understands what is said to him'.

Write to the web editor as well Sue (you can do it from their contact page). I just sent a quick email, said they were wrong and that most individuals who don't speak have either language problems or severe apraxia or both. Told them that ds1 only understands nouns and can only produce vowel sounds.

Thought the Communication reply was very well done.

I am currently filling in my NAS (dis)satisfaction survey.

If they're supposed to be the people in the know, how do the rest of us stand a chance? There's already way too much misinformation about autism kicking around without them exacerbating the problem.

The way the triad is presented on the NAS webpages is (imo) very Aspie centric. Well the bits I've read. I got too cross to continue!

'prefer' ffs!

The way ds beat his head on the ground when he could not express his desires verbally would suggest to me he would have 'preferred' to speak!! When he cannot find a word he is inclined to meltdown rather than 'prefer' another method of communication. It is us (unwilling observers of his distress)that try other methods!
How would you express the triad of impairments JJ? I have always had a problem with the 'triad' in describing my son and was the main reason I did not push for a Dx of autism sooner! Your sensory theory makes so much better sense to me in describing my child!

I think you can only really talk about

impairment in communication
impairment in social interaction
and
difficulties with flexible thinking/impairment in imagination. The NAS says 'difficult in social imagination' which I'm not sure really fits the likes of ds1- his difficulty with rigid thinking is more pervasive and comes from perceptual differences.

The reason I said that the NAS is Aspie centric is that under difficulties in social interaction it really presents it from the pov of someone who is fully verbal. The NAS does mention sensory stuff underneath. I'm still utterly flabbergasted at the use of the word 'prefer'.

Hopefully sensory processing will be added to the next diagnostic checklist.

''They will usually understand what other people say to them, ''

Definitely a bit vague - what if the other person was talking was talking about differential calculus? I wouldn't understand that. NT people don't understand everything that is said to them. Most other sources say gauging receptive understanding/IQ is difficult - esp in young children.

My DS is relatively high functioning, but the phrase about usually understanding still does not reflect his difficulties with receptive language - he picks up keywords and can only follow simple 2 part instructions. And if he is stressed he understands even less.

He can also become non verbal, though usually very verbal. This is not choice, this is overload, and the meltdown is the only way he can then communicate

The NAS definition is not just a misconception for those at the more severe end of the spectrum.

I must admit I was misled when DS was younger, by reading the NAS description of the triad - my boy is most definitely autistic though.

I am filling in my satisfaction questionairre too, so I may have to raise a few issues!

Will raise this in work.

"Some people with autism may not speak, or have fairly limited speech. They will usually understand what other people say to them, but prefer to use alternative means of communication themselves, such as sign language or visual symbols."

It can't even apply to those with Asperger syndrome, as we don't 'prefer' to use sign language or visual symbols. Very odd.

My use of language was really bad for the first 23 years until I learned enough of the rules. I could say really long words in a very posh way, but my whole way of speaking, asking for things, communicating with others etc was rubbish compared to the flexible speech of others. If I'm in an unfamiliar situation, it still is, and I can find myself unable to communicate at all with the people around me, whether by pictures, sign language or otherwise. My ability to use language to ask for help in an emergency is still hopeless. Handing me a picture book or asking me to sign wouldn't work.

I have been a little disappointed by both the info & services on off by the NAS.
In terms of services they seem to have a ticklist post dx of things available but if none of them are suitable or required then they don't seem to have enough flexibility within the organisation to look at the individual family & see what is required.

My ds2 def does not "prefer" no to speak his disability prevents it. You only have to look at his distress & frustration when he can't find the words to know its not silence through choice.

As for the triad of impairment for ds2 I believe that ds2's rigid thinking/lack of social imagination stems from his sensory impairments, overload forces him in to his world where routine & predictability feels safe , so much so that it becomes OCD.
Remove this order & predictability & his senses all need to work together to amke sense of things & his brain just doesn't process that way.

I'm rambling but in short, NAS have given us very little in services or support.

here's the page it's from- the bit about difficulties with communication. I think the bits about AS in that section are okish although I have to say most people I know who are higher functioning have no problem with common words like 'cool'.

Pipin- I was going to write that on my (dis) satisfaction survey.

The NAS is not particularly active in my area - We also have the Strathclyde Autistic Society and the Scottish Society for Autism which are more active on the ground. They seem to be more inclusive of everyone on the spectrum as well.