NAS session. SERVES ME RIGHT!

[Guest guest]

Hi,

After

our discussions and letters to papers etc. to the NAS a while back I decided to

join again, maybe to give them my opinion, or maybe to meet people here and

recruit them to TA.

I

went along yesterday to a talk on rights armed with some TA leaflets. I hadn’t

been to any NAS talk or read any literature for a long time and I was really really shocked at how much they were talking about (and

always were) Asperger’s and not autism. They mention the spectrum but

then talk only about “our” children doing/ having the following ‘invading

personal space during conversation’ ‘monologuing about special

interests’ ‘a unique sense of humour’ ‘not

understanding sarcasm’ etc. etc. At one point they wrote up the reasons

children might fail at school on a flip chart. They all added up to two things ‘sensory

overload’ and ‘not understanding subtleties of language/ body

language’. There was no mention of developmental or language delay.

Anyway,

it gets worse… I wrote down some of the worst comments as I couldn’t

believe my ears…..”we’re all on the spectrum” “Autism

is a gift” “There are large groups of people around the world fed

up with people trying to cure them -they are proud of who they are and say “Stop

making me normal”” “People

with autism have brought amazing things into our world and it wouldn’t be

the same world without them” “If you walk into the Chemistry or

Physics Dept. of your local university, I bet you’ll find lots of people

on the spectrum working there”

“Bill Gates has autism”

“Do you remember all those geeky kids you were at school with?

They probably all had autism.”

At

one point a mother asked one of the speakers why it was that more boys than

girls had autism. She replied that it’s because girls have better

communication skills and so are often overlooked. There are a lot of girls out

there with autism that haven’t been diagnosed.”

The

other thing that struck me was that the parents present all seemed to have

higher functioning kids and it struck me that our kids have even less of a

voice compared to people with Asperger’s than I thought before. It is

probably much harder for parents of more severely affected kids to get to these

meetings. All the parents yesterday had kids in mainstream schools with no or

little support.

I

didn’t heckle them as I wanted them to give out leaflets, which they did

but also because they really weren’t interested in listening to the

audience. Everyone was chomping at the bit to talk and they weren’t

letting them. I also thought that their kids weren’t like Tom.

Anyway,

I’ve just written to NAS to complain but am wondering again whether it is

worth battling with NAS or whether they really should rename themselves the

National Asperger’s Society. What do you think?

SARA