UK Diagnosis

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Has anyone else here found it really difficult to get an asperger's / autism diagnosis? I've been to see a therapist, referred to a psychologist who didn't know anything about autism / asperger's but would investigate for me. I think it's fair enough and he is trying to help but found it a bit strange to be told that this is a new area and not every psychologist knows much about it.

This is just my perception but it seems as if the USA is more condition focused whereas the UK is more about anxiety / depression, treating things as part of a complete system. Personally I think I would find the diagnosis helpful so that I don't blame myself, but worry about labelling myself with conditions and feeling like there's no hope.

My daughter was never diagnosed in the UK. All her problems were put down to bad parenting. Same with my nephew. I spent most of my life being told I had depression and being given anti-depressants that had no effect whatsoever.

We moved to Sweden 3 years ago. Last year my daughter was diagnosed with Asperger's and I was diagnosed last week. My nephew back in England got his diagnosis a month ago but only because my daughter's diagnosis gave his mum the confidence to insist on him having a formal assessment for Asperger's.

have to agree - my son who is now 8 was flagged up at nursery as having a problem but it took till December 2008 to finally get help, then till recently to get a statement. My older son, who I've worried about for years and finally saw the doctor was seen over the summer and the paediatrician was adamant he is normal, yet that's what they said about my younger son.... The eldest one has started at senior school (he's 11) and is finding it a bit hard going.... Grrrr!

Hi Sushiewushie,

I can really relate to the part about "is normal". When I was 5 I was taken to see a child psychologist but was told I was normal. I still feel a bit angry with this person, I mean he was outsmarted by a 5 yr old! I think I might have just acted in a normal way just to make sure I didn't create a fuss, so never presented any of the symptoms. Also there was unlikely to be any awareness of autism in those days. I'd personally see someone else until you are certain there really is nothing to worry about. Not detecting autism / aspergers can lead to social anxiety and not detecting that can lead to 20+ years of misery (in my case).

WP would have been a great way to meet people who thought like me and would have helped me make sense of the world better.

Healthcare is devolved in UK and therefore will be different between countries. I think it's very hard in Scotland.

Totally...my doctor decided to pull the whole depression thing out of nowhere (but without meds luckily), and basically said I "may" have AS, but that was the end of it.

I just gave up in the end. Maybe I should have pressed the issue...I don't know.

I had to go private to see an aspergers specialist.

i may have been lucky but it was very simple for me. having said that i did figure it out myself before going to talk to a psychiatrist. The actual diagnosis was a maybe 45min talk nothing hugely formal.

How can you be diagnosed in 45 minutes?

The diagnostic system in the UK is pants really. My mum noticed problems with me back in the early 90's as I didn't speak to anyone except her, rocked, lined up toys, span around and gave myself carpet burns (a sensory thing). I also never responded to my name. The doctors did a hearing test when I was 5 but when that came through clear they basically dismissed my mum saying she was hysterical and over-anxious. My brother came along when I was 2 years old and as he got older Mum could see something wasn't right with him either, except his problem was intense hyperactivity, a poor concentration span, impulsive behaviour... all the hallmarks of ADHD but that didn't 'exist' back then (as a common diagnosis) and my brother wasn't 'hyperactive enough', despite the fact that my Mum had to keep him on a child lead at ALL times because otherwise he would be destroying things. Again she was told not to worry, to be thankful that at least ONE of her children was calm (me) and to calm down. There was nothing wrong with either of us.

Zoom on another 10 or so years. Aged 14 I was sent to a psychiatrist with regards to my aggressive and impulsive behaviour. Despite the fact that I spent the whole time in the waiting room throwing things around, bouncing on chairs and ticcing violently, the psychiatrist said there was nothing wrong, but suspected psychosis and put me on Risperdal which made me REALLY sick. Thankfully a school nurse had already figured out that I wasn't psychotic (she knew I had some kind of autism) and told the psychiatrist where to stick her Risperdal!

Between the ages of 14 and 19, I was told nothing about diagnosis. At 15 I was told I had 'Asperger traits', a tic disorder, anxiety disorder, depression and dyspraxic symptoms. I spent the next years trying to get a proper diagnosis because I was getting no help. At 19 I was FINALLY referred to the Maudsley in London where I was diagnosed with Asperger syndrome, Tourettes syndrome, Obsessive compulsive disorder and possible ADHD. Despite this, and a request from the Maudsley that our family were given help and support, we were offered nothing.

The moral of this story? The NHS suck...

Mine was only recognized when I was seeing a psychologist for something else and she happened to be trained in ASD. I'd never heard of it before then, lol. I don't think it's recognized in the same was over here as in US, although I think it's improving...

Similar story here.

I was sent to psychiatrists, CPNs etc, who didn't know much about ASDs and who told me:

'You're doing Ok, don't worry.' (as though I merely believed I wasn't matching up to my friends' achievements)

'You're not a priority, we've got people here who are suicidal'.

'People don't usually self-refer, it's usually other people who bring them'.

All these things are rubbish. The NHS system focused on anxiety and depression, which were problematic, but in one sense, were/are symptoms of AS. They wouldn't get down to the main cause. I feel that the NHS (as much as I love the fact we have a health service here) treat the symptoms and not the causes, when it comes to mental or psychological issues.

Since then (after a couple of years), I paid privately at the Hoffmann Foundation for Autism, in London. I self referred, no problem. It was £500. I drained a life-long savings account. This was half price, due to qualifying for concession, receiving state benefits. So it would have been £1000 otherwise. At least that's one good thing about being unemployed! I had a thorough assessment and got a diagnosis of AS. It was my last attempt and I worked hard at providing all the evidence I could to show why I thought AS was there.

I know how agonising it is to try to get diagnosed on the NHS as an adult. I guess keep at it. Do your reading, maybe bulletpoint reasons why AS is likely, using the diagnostic DSM criteria as a basis and giving real life examples. I did this and gave it to the GP. It didn't get me anywhere. I gave it to the staff at the Hoffmann Foundation too - I posted it ahead of time, and they read it thoroughly and they read other reports I had sent and they had them out on the desk when I was there. Quite a difference.

It is massively frustrating and sad when it's your personal feelings and identity that's being knocked around. I want them to listen to you. You could ask the NAS to recommend the nearest place that could diagnose you, so you can request to go there and not get sent to places that cannot diagnose anyhow and the misplaced hope and then disappointment that causes.

I think the main reason I got a diagnosis is because I live in Cambridge, which is basically the centre for Autism/AS research in the UK. Even so, it took some persuading to get my GP to refer me to the specialist clinic. Once there though they were very helpful and knowledgeable and diagnosed me after 1 interview (it was about 4 hours long though and I had to have my parents and husband there to provide background info on me).

This was last year though and before that I've been to see various therapists, counsellors, psychologists, you name it, for help as since my early teens I've suffered on and off with bouts of severe depression. Each time I was just given some one-on-one therapy (which always involved them trying to pin the blame on my parents for some reason or another) in conjunction with some anti-depressants. Once the anti-depressants kicked in my mood naturally improved, so I was then told I was cured and sent on my way, even though I knew that there was some underlying problem that hadn't even been touched on. It wasn't until a couple of years ago when I read an article in a newspaper about AS that I suddenly realised they were describing me.

I'd say if you think there's strong chance you have AS, try to get a diagnosis because then at least you'll know either way and you won't be stuck in limbo like you are now. I had a check on the website of the clinic where I was diagnosed and unfortunately they only do people from Cambridgeshire, but they do say that if you live elsewhere in the UK and are having trouble getting a diagnosis, to contact the National Autistic Society as they may be able to let you know of similar clinics near to you. You could then ask your GP or psychologist either for a referral to there or that they can get in touch with them for more info and advice.

^ Hello fellow Cambridgeshire Aspie ^

Adamantus posted: Has anyone else here found it really difficult to get an asperger's / autism diagnosis? I've been to see a therapist, referred to a psychologist who didn't know anything about autism / asperger's but would investigate for me. I think it's fair enough and he is trying to help but found it a bit strange to be told that this is a new area and not every psychologist knows much about it. This is just my perception but it seems as if the USA is more condition focused whereas the UK is more about anxiety / depression, treating things as part of a complete system. Personally I think I would find the diagnosis helpful so that I don't blame myself, but worry about labelling myself with conditions and feeling like there's no hope.
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In my view, the US system and the UK are both flawed (2010). In the USA, there is at least one very large HMO health care company with millions of members which refuses to diagnose Asperger, autism, or ADHD in adults ever. Such a diagnosis (adult Asperger, autism, ADHD) is excluded from health care coverage so as increase profits to the health care company. It is not about the best medicine available; it is about the most profitable medicine possible (aka cover the easy cases, exclude/forget about the rest). The US health care system also has a flawed track record (historically) on diagnosing and treating head concussions (from car accidents, sports concussions) too. If the condition doesn't glow in the dark (so to speak) accompanied by a loud siren and flashing lights, the condition can often be ignored by the system in place.

Hey!