Aspies For Freedom

Recently I posted details of a ceilidh taking place at the end of this month in aid of the National Autistic Society (see Announcements and Local Groups fora). Or more precisely, a celidh to raise funds for someone to run the London Marathon in aid of the National Autistic Society. That's the way these sponsored charity challenges work these days.

Anyway...when I saw the flyer my reaction was "Running a marathon in aid of the National Autistic Society? Can't see myself doing that." Not just because the commitment to training required - I find it hard enough to manage more than 2 gym workouts a week and the greatest distance I've ever run on the treadmill is 1.06 miles - but also because I don't feel that kind of loyalty towards the NAS.  The only dealings I have with them at present are emails they send me inviting me to support their latest campaign, which to date have always focussed on children. Less often they have contacted me inviting me to sign up for planned services for adults, as in befriending, social skills training or whatnot, coming to my region at some unspecified point in the future. (Once I made an enquiry regarding social skills training in Exeter and got the reply "Where's Exeter, is it in South England?" NT readers will be pleased to hear that I resisted the temptation to write back "Get yourself a bloody atlas!")

I have twice attempted to use the NAS helpline to make a complaint, without much success. After a bad experience with the Windsor support group, I sent the helpline an email beginning: "Unlike the young man quoted in your leaflet What next? Moving on from diagnosis I haven't gained anything from attending AS support groups. If anything it's made me feel even more of an alien..." The NAS response (by snail mail) consisted of a letter advising me to join clubs and societies related to my hobbies and interests (how original is that?!), and this letter was accompanied by a report into "The effectiveness of support groups for adults with ASDs" or suchlike which concluded that NT facilitators up and down the country were doing a splendid job laying on organised jollies for socially incompetent Aspies. When I read it I felt I could hear the collective sound of hundreds of support group facilitators patting each other on the back.

The other complaint was regarding a psychotherapist in Exeter who'd been recommended to me by the NAS's PARIS database. He was a total waste of time. The sessions I had with him felt more like chit-chat than therapy. He didn't appear interested in probing into the underlying causes of my problems. Worse, he was often patronising or belittled my worries. For instance, I tried to talk about my apprehensions about buying a property and he said "Just go round the estate agents" as if it were the easiest thing in the world! After three sessions I challenged him and asked if he was really giving me CBT (which is what I had asked him for when I joined his waiting list) and he said no, just "practical advice". He then asked me why I wanted CBT anyway and I said I'd heard great things about it, that it had really turned people's lives around - and he told me to forget it, that Aspie lives couldn't be turned around. The only response I got from the NAS was a one-sentence email: "Dr Williams's details are on our diagnosticians' database, and are primarily given out to people seeking a diagnosis." But I had already been diagnosed for crying out loud!

I suppose some might say "Ask not what the NAS can do for you, but what you can do for the NAS!" But right now I feel I'd need more reassurance as to what they'd spend funds on before I'd go to the trouble of doing a charity challenge for them. Does anyone else feel the same way?

That sounds terrible. The solutions of just go to an estate agent and just go join a club are particularly expert offerings, i think. I have an appointment with a gp on tuesday, having found all of those pages (eg. 'what next, moving on from diagnosis') quite helpful and reassuring. Now I feel a lot less optimistic, although i'm not sure a referral to a psychiatrist/clinical psychologist would necessarily involve the NAS. Do you know if it would? Anyway i'll eventually put my experience of it up here. If it's really great I might even gear up for a marathon.

'Just go get sponsorships from people'. Ok, good tip NAS.

I doubt the NAS has much control over the people feature on the PARIS database. They don't go check everyone over and never would have the time to do so. I'm just glad they have the DB at all.

I can sympathise with being referred to "namby pamby" professionals though, I was referred to this coach once for some sessions that cost like £150 altogether. She usually worked with people with ADD but as it turned out she looked for some "subconscious" reason for everything and utterly confused me with her attempts to help me brainwash myself into thinking I was happy.

She seemed to think all problems with getting things done had some weird subconscious reason, and spent two sessions trying to teach me a concept only to say "Well with AS I always knew this was not going to work". Um, why do it and let me pay for it then?

The good thing about NAS is that as far as I know, they don't treat autism like it is "Oh so terrible" and just do their work. They help to provide for facilities for us so that we can live dignified lives and as far as I remember, they aren't associated with any quackery.

I volunteered for one of their social groups about a year ago (it seemed like good stuff for my CV for basically just hanging out with people. Yes, nasty lazy NT using aspies to make self look good). It was publicised all over the place, looking for 'users' and volunteers. They contacted me after 6 months to see if I could do a particular training day; I said yes. They cancelled that date, and I've heard nothing since. Whatever you think about what they're doing, they don't seem to be doing it here.

Which is where?

Highlands of Scotland. I didn't say that initially because it's such a close-knit area that I'd give odds on that someone can now identify me, which I'm not keen on.

That must be the same group I signed up for Beastie.

The NAS's campaign for adults on the spectrum has finally arrived. Here's the text of an email I received yesterday:

Although it's not all of the NAS,am a member of the NAS' day centre-victoria house,am had to get funding for it first off the SS/council,as it's around two hundred per day.
The staff are great,and very understanding.

I wouldn't worry unduly if I were you.  

While it's generally the case that a lot of official institutions would go about trying to 'correct' autistic children, for older people, there just aren't the services.

It's more likely that if you get a diagnosis you will be just left to fend for yourself and not offered or given any kind of support or therapies.

Having said that, I think that some interventions aren't necessarily aimed at 'correcting' but promoting better insight into Aspie and NT behaviours so that you can 'meet in the middle' or at least have an understanding as to why you do what you do, why NTs do what they do, and it can clear up a lot of confusion and misunderstanding.  

Doesn't necessarily mean you're going to change or adapt your behaviours but sometimes it can get better results if you try to conform and fit in with NT 'rules of engagement' in every day life, instead of always trying to battle against them.  With some insight, it's possible to pick and choose your battles, decide for yourself whether you want to adapt, or not to, and gives the insight and understanding to be explain to NTs, this is who and what I am, so that they're the ones who are accommodating.

This is a much, much better example of an advertising campaign than the ransom notes fiasco.

"We are firstly calling on the Government to do more for adults with
  autism by increasing the work it does in relation to autism. We also
urgently need the Government to fund a study to find out how many
adults with autism live in the UK, Without this, many will fail to
receive the services they need and remain isolated and ignored."

I have a theory about this bit.  In the UK NHS resources are stretched.  In my area, there isn't a single professional who has expertise and experience and specialist knowledge in diagnosing adults with AS.  I had to get a referral to a different region.

Statistically, there will be very few adult diagnosed Aspies and autistics in my area (because the NHS fails to provide diagnostic services).

This allows them not to provide services.

If you don't diagnose people, you don't flag up a need for support services, so you don't provide them.  So you don't have to spend lots of money on support services because there is no one in need, because you don't diagnose them.  Brilliant!

Hey you got further than I did. I responded to similar requests thinking that I could help bring along my experiences as an adult with Aspergers and indeed a father of a son with Aspergers and a daughter with Autism. Never heard a word.

Later I chased the NAS down and was told that they had more than enough volunteers thanks. Can you ever have enough volunteers?

I think problems regarding diagnosis aren't really the fault of the NAS, that's more a fault with the NHS services and how different services are offered in different areas, the 'Postcode Lottery' as it's usually referred to.

And I guess if there isn't a 'critical mass' of people who've been diagnosed in a particular area (which there won't be, if the NHS doesn't provide the diagnostic services), then it would be extremely difficult, if not impossible, for an organisation like NAS to assess need (they wouldn't be able to get accurate statistics about numbers of adults with AS in a particular area if they're not getting diagnosed), and if they can't assess need, it must be difficult for them to meet a need that can't be properly assessed.  And they are a charity, don't forget, they don't, so far as I'm aware, have any kind of statutory duty to offer their services in every town and to everyone who needs them.

I think they're striking the right kind of tone, and aiming to offer some of the right kind of services, but given that they're a charity their funds are stretched and they're not able to cover all areas they're needed.