UK: WHAT DO YOU WANT FROM THE NATIONAL AUTISTIC SOCIETY?

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My name is Paul Wady, and I just got promoted to being a Social Groups facilitator in the Nas's new Ladbroke Grove centre, where I will be working 3 days a week.

I am Autistic. I want to know, what do we all want in a day centre? I am going to use drama and my own experiences to train teenage Aspies and Auties in social skills. Take people out in the field and orientate. Talk about our lives, how to deal with the outside world.

I married one. I am one. I've been in social groups since 2005. I teach meditation to the Kanner crew in The Acton Centre of the Nas. So tell me, what would you like the Nas to do in Ladbroke Grove? I will bloody try and do it.

If I cannot teach things I will try and find people who can. We need unique training in skills Nt's are born with and pick up in no time. We never do. Until now.

I have a 3rd job too, working 2 days in the Policy department. So you tell me and it goes in there too. (Policy are, er, the Policy department of the Nas. Nerve centre.)

So there.

I don't know where Ladbroke Grove is. I'm assuming it's either in or near London, given your location.

But what I DO want from the NAS (in general) is some sort of job with them.

HoxtonPaul,
does the centre have its own sensory room?
if not,am would say this is a must have,am think this is the best thing about NAS day centres they help so much when are not good,and help to come around from a meltdown or shutdown.

am would like to see better access for those with high complex needs,as am only allowed to go in the NAS' victoria house if am have 2-1 staff and when its closed to everyone else.

what about offering makaton or BSL classes for those who are non verbal,pt non verbal,speech impaired etc,am only use basic makaton and would like to learn more,am not around advanced mak. staff anymore to be taught it.

ladbroke grove is (i think) the road that the notting hill carnival goes down.

since i'm going to the notting hill carnival this year, and i'm going with 2 NAS support workers, what i'd really love from the NAS is to be able to escape to this new ladbroke grove place when i get overloaded during the carnival

even better would be to crash out at the place overnight, would save us a fortune in hotel bills!

I'm thinking that an advocacy service would be good. A place where those on the spectrum can come and discuss real-life issues with someone who understands the challenges of life on the spectrum. There could be advice on how to find a job, housing and so on, and how to get the best governmental support if working is not an option. I worry about the number of aspies and auties who aren't getting enough support in these areas - without a supportive family many of them could end up homeless.

Oh, I wanted to add: I believe that increased support is being made available for those under 18, but adults with an ASD often seem to have nowhere to turn. I know the NAS is doing some good work in this area, but more is always needed.

HoxtonPaul

It seems its always about the kids an never about the adults that are diagnosed without any support and just left to soldier through best they can.

I'm sure ladbroke grove was were hawkwind used to hang around. Which yeah my mum says she did hang there, if it is the same place. FREAKIN' MESCALINE CHEWING HIPPIES WITH THEIR HOFFMAN SUGARCUBES LONG FLOWIN' 'AIR AND SLUMMIN' IT LARGE IN A LONDON BURROUGH.
...
Anyway, personally I think the UK autism society should have a section for those with Attention Deficit problems, in particular for adults, because in england there is alack of help offered on the NHS for adults because they won't dole out the more effective medicines to adults because alot of AD/HD adults have abused drufgs, and it's something can't quite prove and blah, also they don't alot of idreaabout dosage or what to look for.

Advice for adults with AS wanting education, job training, careers, e.t.c.

Many AS adults just did enough to get through school, as many were undiagnosed and left school with minimal qualifications. So people with AS went into menial jobs when they are capable of far more, this is a huge problem.

At the moment unless you are unemployed there is no help available.

Dimmed lighting, a room full of cushions to storm in and throw myself into, followed by a rant with a dedicated comedy rant master (will involve jumping up and down quoting poetry furiously and yelling nonsensical jargon at the walls.) Followed by a green tea/counselling/occupational session and a philosophical debate over chess. Alternatively finger painting, art, music rooms, oh lord lets just throw in a trampoline to this adult playpen and recapture the JOY in life. Too far I sense? Ok, foster an environment welcome to any circumstance. Including the times humanity, parents, let us down in such exquisite ways and whatever our reaction, we know for sure homes not a viable option.

- Councillor/Guidance/Role play
- Creative activities
- Rant room, non-judgemental basis.

To do more outreach in other cities outside London.

In Manchester, there's a prospects service based in Northenden, but no other services for adults.

The lack of service provision for adults on the spectrum in Manchester is scandalous. But then it's systemic. There are no proper diagnostic services for a start. It took me about four years to finally get a referral to Digby Tantum in Sheffield. Because there aren't the diagnostic services, then there isn't 'officially' at least, a statistic need for services. NAS can't identify a need if people aren't diagnosed by the NHS. Mental health services in Manchester are shocking, there's been loads of bad press in the past couple of years. NAS needs to do a compare and contrast and point out that it's not statistically possible for their to be so few adult aspies and that's indicative of failures in the diagnostic services.

There is a project for children and teenagers in Stretford. And they told me they had a social group for adults. Great, I thought, I can meet other Aspies. Except the adult social group was accompanied by a chaperone!

I think it's important to facilitate social groups, i.e. maybe through use of notice boards (physical ones in a building, or virtual ones) where people can post details of meetings and social events, but for adults, I think it's important not to treat them as though they're totally incapable of, say, making their way to a meeting point and going to see a film at the cinema, maybe going for a bite to eat or a drink. If individual people do have assistants or whatever, fine, but don't treat us as one homogeneous incapable mass who can't go out unaccompanied by a responsible adult.

And that applies for your facility in London also, it's all very well providing lots of facilities for young children and teenagers, but there are many people who slipped through the diagnostic net who need to play 'catch up'. There needs to be a drop in facility, or other social group for adults. Actually, I recently saw Mozart and the Whale, and it was great how the Aspie chap was doing the organising of the social group, it was done by and for Aspies, not a patronising thing done by NTs to or for Aspies.

I think social skills are good. Gosh, even a lot young NT people nowadays need socialising, some of the behaviour I witnessed from the undergrads while I was doing a masters was shocking. I think it can be subdivided though into different specialisms: generally acceptable behaviour in public, how to behave in different scenarios, also professional behaviour, how even NTs will adapt their behaviour in different settings, it's not a matter of one set of behaviours fits all situations. Aspies need to learn that fuzzy logic of adapting their behaviours, learning and applying different rules in different situations and constantly adapting. Also, I think there's a third aspect to social skills. All the body language and facial expressions relating to romantic relationships or unrequited romance. I've mentioned it elsewhere, but I really love that programme that used to be on BBC2 Would Like to Meet. There was a body language and flirting expert called Tracey Cox who used to give people advice. I think it would be good for Aspies to learn how all that stuff works.

We are going to try and provide all of that. The teams helping me are all going to be volunteers Aspies. I'm sitting surrounded by reading right now. You should move down here, get involved. High functioners have the least for themselves, I tell you.

My main social group is my Wife, and meeting two other guys every Wednesday afternoon.

I want the right support at the right time, i.e post diagnostic support as soon as one is diagnosed giving free support such as one's rights. Everyone has had a different experience. I have a degree and postgraduate qualification , most of the time I am under employed or un employed. I am changing my direction. Prospects do not do a good job for high skilled, highly intelligent people including those with high level qualifications. They seem to think all people on the autistic spectrum are the same. They seem to plasce people in any job regardless of qualifications. It is easier if you are London based because there is more opportunities but out of a big city there are fewer opportunities, going to London requires time, money and effort. A lot of graduates with asperger syndrome are unemployed or underemployed. I think 20%-25% are in full time employment, maybe 10% max of the total are using their skills and qualifications. I need a high paid job to live and fulfil my potential. I was undiagnosed with AS when I was in education. If one has few qualification there is loads of support but what about for graduates with AS , especially living outside London, diagnosed as an adult, with AS only marginal? Einstein, Newton, probably had AS they did well.