To all who have been, or are in the process of, being diagnosed as an adult.

had a diagnosis since 1994, most self styled experts are full of a brown runny substance, on the whole it is a convenient label for people to use.

 Further to this there seems to be a black hole for help 

Hi. I have suffered with mental health problems all my life but nothing ever came out until i was 16 when i wouldn't go back to sixth form and a teacher sent me to the Dr where i confided i self harmed. Since then i have been in and out of psychiatric hospital and mis-diagnosed twice. It was only last September i had an official assessment and was diagnosed with Autism aged 23. Compared to some on here that is young to be diagnosed but i also get told i should have been diagnosed as a toddler or young child with what i have been like and struggled with. I have seen many psychiatrists, and other mental health professionals over the last 7 and a half years but the Professor and psychologist i saw that diagnosed me where fabulous. I was terrified but they were really good with me. I sometimes get told i "couldn't be autistic" because i have eye contact sometimes and can cope with some things like washing myself. I find this annoying because nobody understands unless they suffer.

I hope you get some help. I urge going to your GP if you feel it necessary and like us, keep going until you get the result you feel you need.

Take care.

Anne.

Hello Brian, I was recently diagnosed in January of this year, (2012), with Aspergers. Although I am not young, I am now sixty-four I have always known that I wasdifferent to other people but I had no real idea why? I have also, for as long as I can remember, suffered on and off with anxiety and depression. I had a reasonably well-paid, albeit extremely stressful job up until 1984 which, I lost because of being unable to cope with various aspects of it – almost certainly associated with the effects of high-end Autism.

I was medically retired and, sadly, have not worked since. Although I did seek help from the medical profession in the early days nothing was forthcoming and like many people in similar circumstances I was left to fend for myself. GPs I encountered back then paid little more than scant regard to my difficulties and, apart from a few unproductive visits to self-funded religious-based (all I could afford) counselling sessions and trips to the local Samaritans, I muddled through somehow. I currently exist on a meagre ex works pension which doesn't allow for luxuries but I get by. 

To get back to your original post, I took advantage when registering at my new medical centre soon after I moved to the area where I am now and, approaching one of the practice GPs asked if he would refer me for assessment with a view to diagnosis for high end autism. In common with some of your other contributors, my new GP knew very little about Aspergers or Autism but agreed, once I had explained my reasons for seeking his help, to make the necessary inquiries on my behalf.

Soon after, about two-three weeks later I was asked to return to the surgery and was subject to a preliminary assessment by an outreach worker, a member of the local mental health team. This was by no means a pleasant experience for me and I found her manner patronising and superior. She turned every answer I gave to her questions back on me and suggested that my problems were not autism related at all but were nothing more than most people would expect to encounter from childhood through adulthood. I told her that with the help of the internet I had sought to find answers as to why I was like I was and, my research had led me to discover that my experiences and feelings were similar to those encountered by people on the autism spectrum, Aspergers in particular. She tied me up in knots, I felt awful. She seemed to have little understanding or awareness of what I was trying to tell her and I found her unsympathetic, uncaring and unfeeling. Admittedly I am a very poor verbal communicator which is why where possible I prefer to express myself in writing. 

I was called a few weeks later to attend a second assessment at a different place but this time it was altogether a more friendly and professional affair and I felt able to talk to that mental health worker who seemed to have a good understanding of Autism and Aspergers and, he was of the opinion that it was highly likely that I was on the Autism spectrum. 

In the space of a another few weeks his report had been sent to my GP who told me of his intention to contact the Autism Centre in Cambridge that I might be more thoroughly assessed.

After I had received a reply from Cambridge and had completed the many forms sent, I attended for my assessment and spent a good three hours or so with the clinician who seemed very nice and put me at my ease. It was a very comprehensive and thorough probing into my background and life from early childhood to present day and, at the end of it I felt physically and emotionally drained. I was formerly diagnosed as having Aspergers Syndrome and I felt a great weight had been lifted from me. At last I had the answers to at least some of my very many questions as to why I was like I was and why I felt the way I did. Each of us is different of course and perhaps a diagnosis is not for everyone but, it was what I wanted and I feel it has helped me enormously. I'm learning to adjust gradually and beginning for once in my life to gain a little self esteem where there was none before. And I now realise that my self imposed feelings of stupidness and hopelessness encouraged by some in the past are, unfounded. Iamdifferent, but I am not stupid. And there is a clinical reason for that difference.

^ Thanks for your advice.   I think the best thing to do would be to phone NAS when I get back to the UK and ask for advice and information concerning my area.  I hope I won't have to deal with anyone like the gateway worker Azaezl described.

LoCommotion said:

This all sounds like a very drawn-out and frustrating process and I'm beginning to question the value of it...  I would like to know one way or another, but even if I decide not to ask for an assessment my research into the matter has already heelped me to understand a lot more about myself.

The only part I found frustrating was the gateway worker I saw, she was the most ignorant person I have ever had the misfortune to meet. She came out with such gems as aspergers being a childhood disorder so I couldn't possibly have it. When I mentioned my concerns about my daughter possibly being on the spectrum she said all kids have little obsessions and quirks and that any problems my daughter had were my fault, that she'd learned behaviours from me. I really don't know how I managed to restrain myself she was such an evil person but wrapped up in one of those happy smiley 'I'm the professional so I'm right' personas.

As I said my GP was fantastic, he unfotunately has left the practice but my new favourite GP is my daughter's doctor and again she is absolutely fantastic and really goes out of her way to help.

You could try going for a diagnosis, see how you get on if your sent to the wrong people (i.e a general mental health practioner and not someone trained on autism) just demand to be seen by the right people.

I also can't recommend the NAS helpline enough, I've called them on the verge of tears because of being messed around (with both myself and my daughter) and they have been fantastic at getting me the right info and giving me the confidence to go back and insist I get referrals.

I consulted several colleagues with expertise, I then asked the local diagnosis centre what I should do. They said I needed a referral by my GP.

I sent a letter to my GP explaining why I thought I had aspergers and asking for a diagnosis, giving the contact details suggested by the diagnosis centre. My GP did not discuss this with me but referred me to a psychologist.

I told the diagnosis centre and they managed to bypass the psychologist, though it was four or five months before I got an assessment.

At the assessment I was shown my GP's letter to the psychologist - it said that as aspergers was a childhood condition that they grow out of I was possibly delusional.

After diagnosis it took 6 months to get it in writing. I asked my GP if he had received this. He made a joke about it being a new kind of vegetable, and refused to discuss it further.

I was given six follow up sessions with a councillor. At the end they wrote to my GP asking if I needed more counselling session. He sent a letter, without asking me or even telling me, saying I no longer needed any help. He has never spoken about it or given me the opportunity to speak about it.

I have tried to get my GP to put leaflets on autism and aspergers on display in the surgery but he wont. Autism might as well not exist.

I do wonder what happens to any other adults in my area seeking a referral from that GP. Evidently the BMC is happy that that is professional conduct.

I handed the GP a piece of paper, explaining why I beleive I have Autism. He asks me a few questions, explains (he's a student GP) that he doesn't know how adults are diagnosed and will check with his supervisor and he explained that I may be harder to diagnose due to other disabilities.

4 days later, he calls me and explains that I can be assessed by the mental health team at the local hospital.

6 weeks later, I had my first appointment. Like the GP, the pyschiatrist explains that me having other disabilities makes me harder to diagnose. He asked me some questions and gave me a questionare to fill in.

I saw him again 2 and a half months later and bought my mum with me. He asked mum some questions and went over something that was discussed when it was just me and him. He told me that I am Autistic.

Almost 2 months later and I still have no report. Someone lost it, apparently.

It's not always long and drawn out, LoCommotion

Though having said that I had started writing a very long post outlining my route to diagnosis! :p

However, I realised most of it was not so much the 'diagnostic process' as 'what lead me to seeking a diagnosis in the first place'.

Once I'd actually started, the time to get from 'asking for a referral' to 'recieving a diagnosis', was, if I remember correctly, more a matter of weeks, rather than months (maybe two months total).

But I was pretty certain I knew what the diagnosis was going to be (in fact, when I got to see a psychologist (after having to jump through the hoops of seeing two or three psychiatrists) I litterally went in and said something like "I'm pretty sure I have Asperger's".

This all sounds like a very drawn-out and frustrating process and I'm beginning to question the value of it...  I would like to know one way or another, but even if I decide not to ask for an assessment my research into the matter has already heelped me to understand a lot more about myself.

I took a printout of the info for GP's on this site to my GP along with some printouts of what I believed to be my traits, some of the tests I'd filled out (such as the aspie quiz) and expalined that I wanted to be referred to a specialist.

He was honest and said he had not heard of Asperger's and dind't know how to proceed so I left it with him he spoke to the other GP's and I was referred to the mental health team.

I was then seen by a gateway worker who quickly skimmed my notes, laughed several times and told me I had OCD. She said she would refer me to a psychiatrist but she neede to check exactly who. A few weeks later I get an opt-in appointment letter for cognitive behavioural therapy for my OCD

So back to see my GP, I was furious, told him what had gone on, he was furious, he called the gateway worker up had a right go at her telling her she had no right(or the training/degree etc) to diagnose me with anything. He then took the diagnostic info off me that I'd brought in and referred me to the CLASS clinic in cambridge.

CLASS sent me some forms to fill in as well as an AQ & EQ test and a CAST test for my mother. After sending all those back I was offerend an appointment soon after (they had a cancellation).

The Dr. at the clinic called my mother (because she lives 3 hours away from cambridge too far to come in  person) to go over my childhood and get an idea if these traits were present then. Then I went in to see her and she asked alot of questions, we went over alot of issues, it took about 2 hours in total. She said she was happy to give me a diagnosis of Asperger's there and then but obviosuly the form she'd been filling in throughout had to be scored and checked with the other Dr's but she was confident that Asperger's was the correct diagnosis. I received a formal report/diagnosis a few weeks later.

In total from that first appointment until seeing the DR at CLASS it was about 4 months I think which I've come to realise is quite fast. I was lucky in having a supportive GP and a specialist clinic nearby who happened to have a cancellation (their waiting lists can be up to 3 months long).

I'd advise you give NAS a call and find out where your local specialists are and what type of referral they accept, some will take GP others require a psychiatrist or similar to make the referral.

Good luck :)

Hi Brian.

I went to my GP's about a bad back and snook it into to the conversation. The GP basically give me mind's phone number and said my back was fine. 

After 3-4 of chronic back pain I got myself a new GP who sorted refferred me to get my back sorted. About a year later I went too the new GP and brought up autism again, and I took my girlfriend and a list of my reasoning. The GP then refferred my to my local mental health services to see a clinitian.

The Clinician, asked the same questions as the GP. They then refferred my to an "Autism Specialist" whom is a clinical Physchologist. I am waiting for an appointment with the specialist.

If your GP won't support you, you need a new GP. You need to tell them you need to see a "Clinical Physchologist".

PS sorry for spellings

I brought it up with my GP when I was seeing the Psychologist for OCD. GP referred me to Consultant Psychiatrist, who after seeing me for an hour concluded I could not have AS as interacted too well. I sought a second opinion, and the second psychiatrist I saw referred me to the Autism team. This all took a year. I finally got diagnosed by the Autism team. The first psychiatrist I saw had  no training in ASC, and jumped to conclusions without even asking me any ASC related questions.