Aspies For Freedom

This is a thread for British people to specifically discuss the responses of the NHS to people with AS. I started it in response to whitbywoof, who wrote:

My own experience is that getting access to support in the NHS, via GPs, is very hard, simply because the NHS doesn't fund enough staff resources. A referral for depression and nervous exhaustion (a typical presenting situation for someone with AS) can take 2 years to reach a specialist: mine did. A course of psychotherapy (CBT), counselling or support from a GP practice psychiatric nurse is unlikely to run to more than 6 sessions.

I'm currently in the process of getting a formal AS diagnosis. I don't know what may change in the available support if I get a YES diagnosis; and I don't know how I'll proceed if I get a NO. This is quite possible: I'm VERY 'high performing' and have learned a lot of 'how to look capable' tricks in 60 years. I AM capable, amazingly so, and proudly so. But I also have a very hard time swimming in the daily tides of a world that less than 1% asperger.

Does anybody have a very positive experience to report, of NHS responses to an adult-diagnosed person with AS?

/michael

Sorry I can not help.  I just wonder about this:  could we organize ourselves to establish a programme of self-help for people with Asperger's to organize their lives.  I need something step by step.  On different topics like how to get help for depression, housing, a steady job.  Is this feasible?

Depending on where you live, there may be voluntary orgs that address some of these things. In Brighton for example, there's ASpire <http://www.aspire.bhci.org/> which provides mentoring and some AS-to-AS networking. Have you checked your local voluntary orgs? Have you googled 'AS' and your town?

bw/michael

I’ve been treated for depression for years, mainly with drugs but also one prolonged programme of psychotherapy. The GPs have always been OK about prescribing anti-depressants, but then, I’ve been in a complete state when I’ve gone to them. I try to cope on my own but reach the point of realising I need help once I’m really messed up. A couple of weeks ago a friend said to me: “When I first knew you, your were a complete mess. Now you’re just very untidy!” I think that sums it up well!

My biggest grouch with the GP and anti-depressants is the NHS guidelines – they are only allowed to prescribe one month at a time and I have to see the GP every two months to get the repeat. I resent the frequency partially because of the expense of monthly prescriptions and partially because of the inconvenience of having to take time off work so often just to see the quack. I brought this up with my GP at the last visit. He assured me that the guidelines were nothing to do with cost, but because of the suicide risk of depressive patients (not that he considered me to be suicidal, he hastened to add!). I was surprised at this because I’ve been on SSRIs for years. I knew tricyclics were potentially lethal in overdose because of heart irregularities, but I didn’t think the same problems occurred with SSRIs. I’m on Cypralex which is (allegedly) newer, safer and more effective than Prozac.

The psychotherapy (which was five or six years ago now) was more difficult to organise. I can’t remember how long I had to wait. I think I got the initial assessment fairly quickly but then had to wait for sessions to become available. The initial delay in getting the assessment was more due to me moving house and relocating and therefore being ‘between area health authorities’ for several months. I ended up in temporary accommodation for a while and didn’t even know which area health authority I would end up in because I was close to county borders, so for a while I had to get anti-depressants and sleeping pills privately.

My referral and diagnosis of AS was a very smooth ride. It’s about a year now since it was first suggested to me that I am AS. I read up and identified with much of what I read. I think it was last December that I asked my GP for a referral to CLASS in Cambridge. I had my assessment and received my positive (and overwhelming) diagnosis on 16th February – only two months from referral to diagnosis. Pretty good going really.

For me, the diagnosis was official confirmation of what I suspected. Having it ‘official’ seemed important and now that it is ‘official’, I feel much better about myself. And the more I read other people’s stories, the more often I chuckle to myself and think: “Yes, I do that” or “That’s just what I was like”. My diagnosis is a positive experience and I’m quite proud to be “on the spectrum”. But then, I am high functioning: I have a house, a partner, a job; so I’ve had no real follow up after my diagnosis other than a letter from the psychologist to my employer – at my request – outlining some of the difficulties I was having and how to avoid them. Other than that, I’m looking at Aspie websites to find somewhere that I feel able to fit in to.

Another positive is that I now feel that it’s OK if I need time out from, say, a party; or if I get overwhelmed at the supermarket. My partner is pretty good about it all and has become very defensive towards me if someone upsets me – intentionally or not. He takes the micky out of me if I don’t conform to an Aspie stereotype(!) and he calls me “Aspie Freak” – but only ever as a term of endearment. And besides, I prefer that to “Hobbit Toes”!    

The biggest challenge at the moment is with his children. He has three, ages 11, nine and seven, He’s had to fight really hard through the family courts to get proper access to them and at the moment they visit us every fortnight. They’re all lovely as individuals but the three of them together = constant fights and squabbles. I do find the noise and the lack of logic in their arguments totally overwhelming. The middle child seems to have noticed this and will sometimes tell the youngest one off because “you’re upsetting [whitbywoof]”. Also, the kids have no sense of privacy or personal space, so even if I go to the bedroom to quietly read for half an hour, one or the other of them will turn up sooner or later.

Part of me wants to try to explain that I need some uninterrupted quiet time. I’ve got a book aimed at 8-15 year olds explaining Asperger’s. I have been considering not exactly making them read it, but leaving it lying around so that they pick it up out of curiosity. However, their mother has been so obstructive over their visits as it is, I am scared that if she gets any hint at all that I am “mad” she will turn it against us and stop the kids coming altogether. It’s been an interesting time getting to know them. I was petrified at first, partially because of my AS weirdness and partially due to my own lack of traditional family experience. The plus side is that I get a huge kick out of tiny gestures – like when one of the girls asked me to put a hair slide in for her. She could have asked her sister or her dad, but she asked ME and I was floating on Cloud Nine for hours afterwards.

Sorry I’ve rambled and gone a bit off-topic; the point of this post was to outline my experience of mental healthcare on the NHS. However, if there happen to be any other UK Aspie step parents I’d love to hear from you as it seems a minority set of circumstances!