Hello, I'm new here

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Yes. Of course I thought about it I don't have any long-term hobby but when I start digging on something... well.



Yes, I am aware of that. I absolutely don't want to be turned down because I am not, as you say, a text book case. On the other hand I don't want to get a false positive or an inconclusive result. I have collected some data but I feel I lack the self-distance to make any meaningful self-diagnosis. I did a bit of research and it seems I am lucky enough to live quite close to one of the few NHS clinical psychologists who explicitly say they do ASDs assessment - including AS - for adults. She is accredited to use the DISCO toolset (which seems to be the reference here), and is in the directory of the national autistic society. This is probably as good as I can get short of being actually sent to someone by a person I know. I will try to get a referral from my MD to see her.

Anyway, I want a professional diagnosis because I have the feeling almost nobody in my close ones is competent and neutral enough to give me any good advice about that. My parents, my girlfriend and my few friends all have strong emotional bias. My MD and my therapist have not and I will speak to them, but they have no reason to be specially competent on autism spectrum disorders. In fact I am suddenly feeling very alone. It's especially painful that I don't manage to talk about this with my girlfriend, since she is usually the one who listens to me and help me get better when I am brooding too much on my problems. Thank you very much for your messages, they really help.

I think I will talk about what I am thinking with my therapist tomorrow (and bring my document, which has grown a few more pages), she is always helpful and listening and I think she will be receptive. And then try to talk to my girlfriend afterwards. I will also get an appointment with my MD to try to get an assessment. I will keep you posted

I hope it goes well with your therapist today. Mine is really helping.

As far as your doctor goes, there may be some resistance (I got a note from my therapist) but in the UK you have a legal right to an assessment, so don't take no for an answer. They also can't say that your PCT doesn't offer it, as the law now requires ALL UK PCTs to offer referrals for diagnosis. There's a long waiting list though, so don't expect an immediate assessment. I suspect us high-functioning people wth coping mechanisms end up somewhere near the bottom of the waiting list.

When I eventually get my assessment, I may take my sister and possibly my partner but not my mum as she has gaps in her memory at the best of times, being 78. I don't think the people you take get asked whether they think you have it, I think the questions are more around specific childhood behaviours, because you may have learned to mask certain traits as an adult, or they may have become milder.

Thanks. She is really good at listening, I think it will go well.




That's good to know, thanks.
When you say you got a note from your therapist, do you mean you got referred directly to the assessment psychologist by your therapist or that he gave you a note for your doctor ? I am sorry, I have only be here for a few months and I am not completely familiar yet with the UK public health service.




I could not find anything about AS or autism on my local CCG (which seems to be the new name of PCT) web site, but the psychologist I located is very clearly practising in its area, and she works with NHS, so I suppose it should be OK ?
I am expecting some waiting, I can understand some people have more urgent needs that I do. I can wait a few more months.


OK. I have thought again about it and I think I may come with my mother. She has her problems but she does some psychotherapy herself and understands what working on oneself is.
I will also try to find again the report by the psychologists who assessed me when I was 5 and read it. It was rather short (2-3 pages) and I don't completely remember the content but the point was that I was unusually good for my age at language skills and symbolic thinking, but had some "delay" for social and emotional development.

When I first went to the doctor to ask for a referral, I got a locum who was completely useless and wouldn't refer me. So then I went to my therapist, and she gave me a note to give to the doctor, saying that she had informally diagnosed me and that she would recommend I be sent for a proper assessment. It may be that you happen to have a GP that knows a bit about autism or is more receptive, in which case I guess you won't need a note. The second doctor I saw, who is the senior doctor in the practise, was much better informed and more receptive as well.

Thanks. I don't know what my GP will say but I don't think he will be too bad. I don't know him that much but when I spoke to him about my depression and my need for therapy he was attentive (if not especially supportive) and gave me some valuable advice and addresses.


I saw my therapist tonight and talked with her about AS. It went well but I got a bit frustrated in the end because we hadn't enough time. She is not an expert on ASDs so she wouldn't try to make a diagnosis or tell me I was right or wrong, and I liked that. But we only had 1h and we spent a lot of time going through what I had brought (the document I linked and a much shorter thing which is just a listing of the DSM-IV criteria with a few examples of why I think I may qualify for each one which is relevant) and we hadn't any time to speak about what I was most anxious about, which is the diagnosis, how to talk to other people about it and the impact on the way I will handle my life if I do have AS.

I am in a weird state of mind. I am reading Attwood and a few other books and websites and although I obviously don't match everything, I think I am reading things relevant to me every other page. It is a well-known cognitive bias that when you have a theory, the more evidence you look for, the more you find so I try to keep some scepticism and a sane self-distance but it is difficult at times. I am analysing my own behavior and feelings and I really believe that many ways I am behaving and reacting to others are coping strategies and don't reflect my real instinctive feelings. But it is so opposed to the social norms and the rules of behavior I have spent years learning that at some times I wonder if I am not just finding excuses to be rude.

For example, we were speaking about emotions and at some point my therapist asked me what I thought her own emotions were during sessions and if it was disturbing me. I told her that although it pained me to say so because I was feeling I could hurt her, I just didn't care about her emotions, because I like her, I think she is a good therapist and doing a good job, but I come to therapy to try to solve my problems and I don't really care about other things. Although she took it very well, admitting those feelings made me cry with guilt.

And I could only speak honestly because we were in session and speaking about AS and symptoms, in another situation with someone else I would have lied, said that of course I cared and tried to guess the emotions. And there are plenty of similar examples. At times I say "what's up?" to my housemates because they are nice people and I want to be friendly with them but usually I don't want to socialize with them and force myself to be more sociable that I would spontaneously be. And right now my girlfriend is sending me text messages, which I answer in a good mannered way (I hope) but I find annoying because I really would like to focus on writing this message without external disturbances before talking with her. But I can't help thinking that all those thoughts may just be "normal" thoughts everyone has and hide in the same way I do, and that not doing the same is just rude and bad manner. What do you think of that, did you experiment similar feelings ? (Especially other undiagnosed or late diagnosed AS adults.) To summarize, I don't manage to be sure or wheter dismantling all those layers of coping and learned responses is fighting years of guilt and self-denial to access my true self or if it is just learning to behave like a jerk. (No offense intended to anyone, I am just in some kind of personal dilemma and I would be glad to have some insightful advice. I don't judge anyone else's construction.)

Anyway, even if I do have AS and those toughts and way of feeling about emotions are not "normal" (neurotypical?), it gives me no licence to hurt people and I will have to find strategies to express them in a respectful way. But it is hard to believe I could be so far from other people and at the same time look superficially so similar. And the amount of work I would have to do to rebuild my social behavior in a way acceptable for me and other people is a bit frightening

Edit: Sorry for the huge amount of text. There are not many other people I can talk about this so I am putting everything here.

Yeah that all sounds very familiar! And I can't speak for anyone else, but I understand completely about wondering whether some of the behaviours have been picked up rather than being inherent.

Takes a lot of processing I think.

Hello I can relate to a lot of things you said in your presentation, like the muscle thing (I do that literally all the time, I thought it was only me), and also in your last message, about how hard it is to learn stuff and analyze your own behaviour without being biased. So welcome here, hope it will bring you some relief. It feels good to get things off your chest.
And don't worry about the "It's hard to believe you can be so different inside and look similar outside". I think it's what we learn to do in order to survive in a world from which we cannot isolate ourselves... and it is so tremendously exhausting. The "self-analysis" work you are doing proves you can be very lucid about how you see yourself and the image you are able to build towards others.

Thanks for reading all that stuff and giving feedback I really make every effort to remain objective since except the people here I can't really rely on anyone's external advice right now.

I am still deep into the processing and self-analyzing. I was able to tell my girlfriend, and she took it very well (in fact she said she was not really surprised) but I don't know if she really grasps all that it can mean. I don't mean being an aspie has to be something tragic, it's just she and I probably have a completely different emotional information processing and therefore very different and maybe contradictory needs. I hope our relationship can survive that, but I can't automatically expect her to accept living with someone who will never process emotional information in the way she and most of the other people do. There is still much to do for us. But now I know that even if we end up splitting, it's not because either of us is stupid.

Thanks to everyone who read and supported me. It made a big difference for me during the last days. <3

Hi again,

I have an appointment with my GP on Thursday and I want to tell him that I think I may have an ASD and want to be referred to a specialist. I am looking for advice on how to make that go as well as possible.

I have only been seeing that GP for 8 months and had maybe 4 appointments with him ; overall I like him well enough, I think he is a competent doctor and probably a good man, but I can't say I know him well. I have been speaking with him about depression in the past and he was supporting and intelligent about that so I am reasonably optimistic but still... Like all social interaction I can't know how it will go.

I have been doing my homework and now have a decent amount of knowledge about aspergers and ASDs, but I have no idea what my doctor knows about that, or which clichés or misconceptions he can have about AS. I have written two documents. One is just a 2 pages printout of the DSM-IV criteria for aspergers with some arguments in how I think it is relevant to me. The other one is a detailed 12 pages long account of all the aspie-like things I have noticed in my life, behaviour and history. I don't know what I should bring or show. I don't like the first document ; like the DSM-IV itself it is grossly simplified and rough. As for the second one, my doctor will probably not have the time to read it, and I am afraid to just look like some hypochondriac or paranoid maniac if I just show out with 12 pages of data on my life. I just want to be listened to but I am afraid I won't. Do you have any advice about that?

Just wanted to report that my appointment went well and I will get assessed.

My doctor did listen to me. I could explain him the things I had noticed. The only thing he did after that was ask me if I "really want that label", which is if I think having an ASD diagnosis will make me more good than bad. I explained him why I believe this is the case (reading self-help books for Aspergers has already be beneficial to me now) he told me he would refer me.

Apparently I will be referred to some local mental health board. I hope they will be competent on autism, but this is England (and London) so I can expect some level of awareness for ASDs. The delay is much shorter than I feared, my doctor said I would get a first appointment in about 6 weeks, even though it could take a total of few months for the complete assessment process to run its course and provide me with a diagnosis. Anyway that is much better than some persons I read about who waited for 6 months or even years before seeing anyone.

Hi, just a followup about my formal assessment procedure.

I got a call from the local assessment team on last week, they sent me some questionnaire (the classical AQ questionnaire and another one with 40 questions called the Cambridge beahviour scale) and booked me an appointment in about 10 days.

I am a bit concerned by the fact that the person I will see is a psychiatrist but probably not an autism specialist. But maybe it is just some kind of preliminary screening interview. Anyway the awareness of ASDs is quite good here in the UK so I should not worry too much.

So for the record, after being referred by my GP the assessment team got back in touch in 3 weeks and I got an appointment about 1 month after my GP visit. It is much shorter than what I had read, and in line with what my GP had told me.

More information in 10 days !

Welcome

Some news from assessment. I don't really need any advice or comment (but feel free to provide some if you want), but I write that for the record because it may be of interest to other people in my situation (UK resident (London), ~30, looking for diagnosis with NHS).

I got my first assessment appointment in the beginning of the week. I saw a clinical psychologist for about 1h15. She is not an autism specialist but she seemed fairly knowledgeable and aware about ASDs. I could communicate efficiently with her and I think she is a competent professional.

She told me that we will have a second appointment, and that after that they can usually give a diagnosis. They will only send me to a specialist if they really have a doubt. The psychologist asked me why I thought I had Aspergers and discussed it with me. She also quickly screened me for a number of other conditions (depresssion, OCD, schizophrenia and paranoia, from what I know) ; I believe they are more or less obligated to do so with anyone who is referred to them. I will see her again 2 weeks after my first appointment, and before that I have to get information from someone who knew me as a child. I will ask my mother, I was not very comfortable with it but I later discussed it with my therapist and we sorted it out. In the beginning she asked me to come with someone who knew me, but since my mother does not live in the UK she told me she could just talk with her on the phone or answer questions by e-mail. I chose the last option since my mother's english is not very good, it will allow me (or someone else) to help her understand and answer the questions if she needs.

More information in 1+ week !