Guardian article on autism

[AgnesDiPesto]

here

I hadn't realised severe epilepsy was common with autism.

Wow, if only that initial passion, determination, high expectations and drive for educating our children had stayed with the NAS!

Indeed!
And I thought it was really interesting they expected the State to get its act together and make NAS redundant within a few years

Instead the NAS and State just merged!

As always, it's parents that change things, not state run establishments that generally exist only to perpetuate themselves.

I saw this article. This family were on that BBC programme about autism a while back - really interesting to hear their story on it and to hear from Lorna Wing. Worth watching if you can get hold if it. Can't remember what it was called.

I totally agree about the NAS. It's a huge monolithic organisation with substantial weight and influence which it could really use to change the culture but its been co-opted. This is the trouble with charities who want to have their voice heard - it's too easy to get flattered by being 'at the table' that they convince themselves that it's better to work with the system to change things!'

Not of course that NAS is state run by very definitely part of the establishment with al lthe baggage that entails.

Only managed to read the article until it got to living arrangements, don't think I am ready or even want to think that far ahead in the future for ds1.

AE you might be interested in this article by Brian Lamb debating whether charity contracts are preventing successful campaigning

Which is why if and when we ever find time to get ours going it has a chance of being effective precisely because we are a bunch of people with nothing to lose. He says this:

'Charity campaigning should be trying to innovate and reform public services rather than getting trapped into defending the status quo.'

Which I think is what we want to do

Thanks - will read that. I agree totally.

The Lamb Inquiry was a withering attack on the status quo.
Top bloke, Brian Lamb.

I met one of the founding fathers (and Saskia) at a conference. He seemed a little frustrated by the changes to the NAS. Can I say that on a public forum? I hope so.

I let my NAS membership lapse years ago.

I'm beginning to think I get nothing out of my membership. We don't even have a local group. And I get sick of the phone calls asking for more money.

I joined for one year. I learned that they had nothing to offer me and didn't renew.

The trouble is though that that just perpetuates the status quo if all those who think it is shite just leave, rather than trying to get into decision-making roles iyswim.

One reason I HAVE continued my membership is that they do have people with autism in those roles (while some other large autism charities around the world have avoided taking that step). They do also have a lot of clout behind some important campaigns. I think there are some interesting smaller charities with their own perspectives though, which tend to be missed by the NAS.

Hi I think the programme was called The Autism Puzzle.

It's an important point that Star makes.
As Nixon said, do you have people in your tent pissing out or people outside your tent pissing in?

The question ius how much do you compromise over little things to achieve big ones and how does your integrity stand up to this over time?

One of our ABA therapists used to work with the (former) NAS chair's son. Just saying

I agree though ouryve tis nice that people with autism are actually involved. A friend worked in the press office there for a while, and told me that they also employed several staff with ASD, and not just 'high functioning' people.

Hello - Saskia here - really interesting thread, I'm pleased article provoking debate. Will share it with my dad. If you want to see my (now ten-year old) documentary, The Autism Puzzle, there's a link buried in the Guardian article, toward the end.

Oh hello Tutak, Thank you for the link. I missed the programme but would love to watch.