Aspies For Freedom

Hello! :o)
This is my first post. Sorry its long. I know you must get a lots of these. I hope somebody will read it and knows what I am blabbering about.

I have effectively self-diagnosed myself with information on the internet (particularly wikipedia (just ordered new Attwood book though)) as either Asperger's or HFA (quite confused on what the difference/similarity is!!).

I wanted to get an official diagnosis as all my friends/family see me as a paranoid hypocondriac for some reason. I took the advice of the National Autism Society (UK) and went to my GP to be referred to a psychiatrist or psychologist. She didn't respond particularly well and kept insisting that I was depressed and seeking attention (true, I am probably depressed - have been in the past) which wasn't nice. Finally got her to contact local expert, which turns out to be a learning disability centre. Apparently they don't 'treat' or diagnose adults, and she had a conversation on the phone with them. I began to have problems when I was 3 years old, when I suddenly changed from very outgoing to reclusive and shy (roughly the same time that my mother left home, btw - doctors alternative explanation). The Doctor and psychologist insist that this proves I do not have aspergers, as it would have been at 2 years old. Is this right??? I am male and 31.

I have scored highly on all the online test, one of my uncles and his son has HFA or aspergers (haven't talked to him (no good at approaching relatives) to find out exact details, but they are both very intelligent and have some kind of autism) interpret people literally and pedantically, have stupid sense of humour based on obsessive interest with spoonerisms and literal meanings of metaphors, get annoyed by loud noises, have weird tics and internal repetitive vocalisations, can't socialise, can't hang on to friends,struggling in marriage, very original but scatty thinker (did very well in degree but couldn't organise myself at all and all essays were last minute).

Thanks for any help.

Sorry, I forgot to add a full stop and 'I' before 'interpret' in the last paragraph. That list at the end is about me, not my Uncle! :o/

The clearest thing I can say to you is that these diagnosticians don't know what they're doing. If this is the only help you're going to get in your local area, I suggest you save up to pay out of pocket and find someone out of your area who is VERY experienced in Aspergers, your age range, and your sex.

I don't know the UK scene too well. I'm over in the US. However, you may try contacting Dr. Baron-Cohen's staff at Cambridge and asking for them to recommend a diagnostician.

As for getting it paid by the social health care, you're probably not going to get the right diagnostician. I've noticed from other peoples' diagnosis stories, they tend to think just about anyone will do. And unfortunately worldwide there's a severe shortage of experienced diagnosticians who really do have a fluid understanding of ASDs and not the superficial stuff you're running into now.

Just to let you know, this kind of thing unfortunately is not uncommon at all. I've gone through it several times before I finally went to an Autism Center for assessment. And other people have gone and are going through it, too.

Words like depression and stress seem to crop up alot. Andy you are a similar age to me and I find your post very intersting and your search for help mirror's mine, the 'experts' like Doctors and occupational health and councillors do not understand what we are talking about because I think, as there is no cure, then they struggle to find a point in trying to diagnose or even refer. I agree with Sophist that the only answer maybe to go private. If I get no further with my GP in the next month that maybe something I'll look into. I would like to get a postive diagnosis because that could help me in employment. It seems confusing though. In my first post I said that a work medical by a Doctor showed me as very high on Anxiety and mildly depressed, my boss and HR dept. very very concerned but have made no changes at all to my experiences at work. My own GP says I have an anxious personality but does not believe I am depressed at all ( she was the one that first mentioned Aspergers in Dec. ) and the councillor my work are paying for is convinced I have asperger's, but would she have thought that If I hadn't told her? Very confusing!

Hello,
Thank you for your comments - its looks like i'm in for a long ride then!
My GP made me feel pretty stupid when I first went to see her - she didn't believe that an adult who was married with a decent job could have aspergers. My mother in law, who is a nurse said that "people grow out of it when they become adults". What chance do we have with this kind of disinfo flying around????

I agree with you Michael - my doctor can only see somebody in front of her with an assortment of 'treatable' problems - depression, anxiety, poor social skills. I suppose she COULD be right, but I have had these problems for 25 years!

So is the 'first symptoms occur at 2 years' thing incorrect as well?

"First symptoms occuring" and "first symptoms noticed" are often two completely different things. Aspergers is developmental and is there from day 1 (and before during the foetal period). As for whether you can tell it's there from day one may be another story.

So that's sort of a yes/no answer.

Michael 1, these people didn't know what they were talking about. Some people don't show many aspie traits until they leave home and have to fend for themselves. With others, the issues only show up once they start attending school. There are many aspies (probably in most cases, relatively "mildly" affected) who are married and/or have a job but out of all aspies, they are a minority.

It is really difficult to get a diagnosis as an adult in the UK.

The vast majority of diagnostic services here are aimed at children, and as an adult, you won't have access to those child health services.  Also, adults present differently to children, because they've very often developed coping strategies.  

Lots of ignorant practitioners seem to believe that for an adult to be Aspie, they should present exactly the same as a child.  This, to me, is an absolute nonsense.  When they diagnose a child, they will offer all kinds of strategies and assistance: speech therapy, teaching children to learn how to read facial expressions and body language and so on.  If Aspies are so set in stone, then why bother implementing all these therapies for children?  

The reason why they offer therapies for children is that some of them work for some children, some of those therapies are effective, because Aspies are capable of learning and changing and 'improving'.  Instead of thinking of AS as a disability, an inability to do something, think of it more as a developmental delay.  

It is often/usually possible for Aspies to acquire skills throughout their lives, albeit over longer timeframes and perhaps to lesser degrees than neurotypicals.  This is why by the time an undiagnosed adult Aspie reaches a conclusion that they are Aspie and are looking for official confirmation, many of their experiences are historical, because they've developed those coping strategies or overcome deficits (to a greater or lesser degree).

You really need to see someone with a lot of experience in diagnosing AS in adults, such as Digby Tantam in Sheffield, or Simon Baron-Cohen in Cambridge.

Here's how to get a referral:

Your GP tells you you don't have AS.  Explain to your GP that diagnosis of AS in adults is an extremely specialist area and you would like a referral to a specialist.

You get referred to a random psychiatrist/psychologist in your local area who has no specialist expertise or knowledge of AS and this person says you don't have AS.

You go back to your GP and say that you do not accept the opinion of your local mental health practitioner on the grounds that they do not have the specialist knowledge, expertise or skills to diagnose AS in adults.  Tell your GP that you specifically want a referral to someone with expertise and knowledge in diagnosing AS in adults.  

If there isn't an appropriate person within your local area, your GP will have to ask the Primary Care Trust (PCT) for funding for an 'out of area referral'.  

You will then probably get trapped into a bit of a Catch 22 situation.  The PCT won't want to spend this money and they will probably ask for an opinion from a psychiatrist/psychologist within your local area.  The PCT will probably say that you can have the out of area referral if the local psych says you probably have AS -- but they won't say that, because that's the whole point, you want the out of area referral because the local peeps keep saying you don't have it, because they don't know what they're talking about.

The PCT is not allowed to refuse the referral on financial grounds (although don't kid yourself, this has a lot to do with it), so you actually need them to specify this Catch 22 silliness:  the local peeps don't think you have AS, so you can't have a referral for an assessment for something they don't think you have.

You then have to make your arguments on clinical grounds:

You argue that the local psych who won't support your referral is not in a position either way to offer an opinion, because they don't have the specific knowledge or expertise.  You could play hardball and venture to suggest that them offering a medical opinion about a specialist area in which they have no knowledge or expertise could be potentially considered to be negligent and that you reserve your right to take legal advice with a view to pursuing a claim for medical negligence.

Basically, you put them in the Catch 22 situation they've been messing you around in:  In my case, I told them that if their local psych with no expertise or specialist knowledge said I don't have AS, then I'd be getting legal advice, likewise if they said I do have AS, I would also be seeking legal advice, because they weren't qualified to make that assessment/diagnosis.  

In my layperson's opinion, if a psych does not have sufficient specialist knowledge/expertise to rule in a diagnosis, they cannot rule it out either, although lots of them try to rule it out, in order to rule out the out of area referral.

Going round in these circles *will* take time.  But it will be worth it in the end.  They can have no real clinical grounds for refusing to make a referral to an out of area specialist if there is no specialist in your local area.

Hmm, very clever there. Sadly, I had to "act out" a lot before anybody would refer me to a qualified psychiatrist with experience in autism in adults. I didn't purposely set out to cause trouble, but the stresses and strains of trying to cope with my condition finally got to me about 3 years ago.

Your Mum leaving home is a *very* big deal for a small child, so I really wouldn't dismiss that out of hand. The impact of such an event can genuinely have an effect on your personality and the way you form attachments with others for the rest of your life.

However even your Doctor might have heard of how the whole 'vaccines=autism' stuff came about because some children "regress" at 2-3 years, so it might be worth pointing out that this is't *that* unusual.