had assesment - still not right

Thanks Scorpion.

On the subject of CBT, my understanding of it is that whilst CBT can help those on the spectrum, it, once again, must be administered by someone who is trained to administer CBT to those on the spectrum! This is because the standard CBT techniques were developed to treat the neurotypical mind, not the autistic mind! And, so, if standard CBT is administered to someone on the spectrum, the person can, as you have described, Jon, end up feeling like a failure, because they're being asked, and expected, to do things they're not capable of doing (due to the way the autistic mind is wired)!

Regarding whether you should be here on these forums, Jon, I say, if you're comfortable here, and you find here helpful, then here you should be! And, I, for one, welcome you. :)

Thanks for your comments Hope and longman. I think the assesment was flawed, but I am trying to accept the result. Its that just don't know what options I can explore now. To add to things I just got back from my CBT session and it seems that it was the last one. I am not sure if I offended the therapist or he thought I wanted it to stop or just that he felt I was now OK. Very confused as to what happened there today. I was really devestated when I came out but on reflection it may be the best thing. I am not sure if anyone on here has tried CBT but it does make you feel like a failure when you are expected to reprogram yourself and can't. I am not knocking the therapy and can see its usefulness but I just can't seem change my feelings.

I don't think I can go to the GP again because I don't know what I would say. I am really at aeason loss. I am really frustrated by not being able to get myself across.

If I am not on the spectrum then should I even be here on this forum? I want to accept the results of my assesment ut that still leaves me with the problems of social interaction, depression, anxiety and all the other things they lead to.

The NHS seems to be very narrow in its thinking.

This is a tricky area with many dimensions, and I may possibly be accused of hypocrisy because I have suggested in a previous thread that misdiagnosis of AS may be more common than we presume, me playing Devil's Advocate. But I also accept that there are people with AS who are overlooked, misdiagnosed with something else.

I cannot comment on Jon's case because I do not know his situation, so it may well be that Jon has been misdiagnosed and does have AS, but equally the doctor might be correct.

However, I think what Longman says is very plausible, and there should be more research done on people who do not meet the full AS criteria, but who still have difficulties that are similar to those with an actual diagnosis of AS. People without a diagnosis may struggle with depression due to social interaction difficulties and these difficulties should be taken into account, and doctors should avoid simple medical approaches. THere is, in fact, something called the Broader Autism Phenotype, which means someone can have traits of AS, but not enough of them to meet the threshold for diagnosis. Again, more research should be done.

Regarding Jon's comments on friendship and eye-contact: I do make eye-contact, but often find it uncomfortable, particularly in close proximity. Moreover, I gain no real information from the eyes, although I can sometimes vaguely work things out with my Dad, but only because I know him very well. I have learnt how to gesture, but struggle to understand other people's gestures. I did play with other children as a child, and initiated contact, but I could not maintain friendships and often fell out with people. As a teenager I had no friendships, and currently only have acqaintances. Making friends has become harder the older I have got. People with AS often do play with other children, but questions should be asked about the quality of this interaction because having AS means that the child would interact atypically. The same with metaphors: I get most metaphors now, but only because I have learnt them, but I did not learn them inferentially, as Longman puts it, like the other kids did. I learnt the meaning of metaphors from my parents, by being told what they mean. I often took things literally as a child, and still do sometimes, but not as much as I did.

Unfortunately experience of life enables people to compensate and this doesn't seem to have registered with the medical profession. They look for diagnostics designed for children in adults who must in some ways have adapted.

Eye contact is a prime example. I look at people's mouths (why I don't know - I cannot lip read and it wouldn't serve any purpose as I can hear; mouths aren't comfortable visual targets but the eyes are still a problem).

One of the conflict areas for people on the spectrum is over paying attention, looking at people when you speak to them or are being spoken to. As a potential source of friction, many adults attempt to look roughly in the direction of the eyes without engaging, because doing so gains some element of approval rather than conflict. It stands to reason a lot of adults must be looking broadly at the face.

Unfortunately the medical profession seem obsessed with "gaze aversion" - the actual avoidance of eye contact, which is more likely to occur in children and is an obvious trait. Once you are looking broadly in the right direction it must be very hard to determine whether or not eye contact is being made - the "aversion" is in the nature of a very slight deflection. So because there is no "gaze aversion" that means the person has eye contact - apparently.

How this simple fact can be conveyed to health professionals is beyond me. But they persist in this naiive concept, which to me demonstrates inflexibility and ignorance.

Again understanding of metaphors as you suggest, must be affected by learned understanding as distinct from interpretation. The confusion possibly arises because people on the spectrum do not receive the inferential information conveyed by their peers - consequently they do not become aware of the difference between metaphor and fact as easily. But over time that must change.

But diagnosis is based on what works for children must work for adults! Does intelligence come into medical training? Or is it just follow what it says in the book?

This business of having friends is also perplexingly naiive. People on the spectrum have difficulty forming and sustaining close friendships and relationships because of social interaction difficulties, understanding non-verbal communication, and responding in the right way. I don't think it means they are incapable of forming friendships. Because people on the spectrum are likely to be less familiar with the bonds formed between neurotypicals so their interpretation of "friend" is likely tio be different.

However it seems health professionals cannot grasp the subtelties of this themselves. So all someone on the spectrum has to say is "yes they have friends" and the textbook led health professional reads itt simplistically.

We are usually the oners accused of black and white thinking. But it is the deficiency in perceptive thinking that prevents health professionals from diagnosing properly. Maybe we'd be better off with computer diagnosticians.

I have thought quite alot about adaption and think that it has to play a part. In the assesment the psychiatrist asked if I took things literally. I explained that the obvious examples such as ' its raining cats and dogs' really doesn't wash with me. As I am 39 I have learnt quite alot. I still don't always know where people are coming from though. I find it easier to just avoid people lots of the time. In the assesment it was hard to just come up with examples..... I find it hard enough to get myself across to people I have know for years.

One result of the assesment was that I had 'good eye contact and appropriate use of facial and bodily gestures'. I am very concious to try and look in peoples eyes when I talk to them although I don't find it comfortable. I suppose I try to fit in and not get noticed.

In the assesment I was totally honest. So when asked if I played with other children as a child I said yes. I now think that this was an important question. Compared with other children I spent most of my time on my own. I only occaisionally remember being at a 'friends' house. I did play with my sister. However the psychiatrist asked a question and I answered corectly. Yes. My mother seems to think I played with lots of children.....

I am just trying to understand myself.

I wonder whether assessment of adults takes into account that if they have reached, say, their 40s, they will have had to have made adjustments to fit into the NT world, but these adjustments don't necessarily make life easy and can cause an enormous amount of stress in the individual.  Stripping off the veneer of neotypical behavour can be difficult, especially if you are understandably tense about the whole interview.

When it comes to parental input it doesn't surprise me if oddites in their childrens' behaviour are played down, or denied, bearing in mind that the parents of adults seeking diagnosis grew up in a period when mental illness was feared and seldom acknowledged.  In Jon's case, when speaking to the psychiatrist, his mother was not only apparently in denial of his difficulties when growing up but contradicted what she had told him about family health problems.

There is another side to this. A lot of people, it seems, experience many of the social interaction problems associated with autism, whether or not they are able to obtain a diagnosis.

If it was recognised that there was a condition that significantly affected people's lives in this way, a scientific approach might recognise the problem, research solutions, and come up with a more productive way of addressing it.

It would seem they would rather misdiagnose people, treat them inappropriately with drugs and consultations for other supposed explanations, and waste huge amounts of resources.

If they actually addressed the problem, irrespective of whether it was autism, we might actually gain greater understanding of both autistic spectrum and lesser conditions.

The trouble is the medical profession is a bit like the established church before the reformation - anything rather than lose face. Their exalted opinions are more important than the welfare of those they are supposed to address. So we won't get anywhere over diagnosis until the medical profession stops being self important and actually addresses real problems.

thanks Scorpion0x17

Hmm...

I don't know what to say.

I would expect that someone at something like the 'Sheffield Asperger Syndrome Service' would have the expertise to correctly diagnose you, but, at the same time I'm concerned that you say you were seen by a locum - who may not have had that expertise - particularly if they were, as you state, a psychiatrist, rather than a psychologist - I'm also concerened that their view may have been coloured by what your Mum said to them on the phone.

I wish I knew what to suggest - everything you've stated about your difficulties sounds very Asperger's to me, but as I've already said, I'm no expert, just someone with Asperger's themselves, and I do know that some of the symptoms of Asperger's can be caused by other conditions.

I hope you find the answers you seek, get the appropriate help, and can move on in your life.

Hi Hope,

My partner went with me.

I havn't ever been screened for anything else.

The Psychiatrist went through the main areas of Aspergers. I had tried to prepare and had written down alot of notes.It is only the last couple of years I have become aware of just how different I am from other people. My life has been a constant effort to try and live up to expectations.

I have had difficulties with social interaction and depression as far back as I remember.

The Psychiatrist has spoken to my mother on the phone. My mother has a very different view of me than what I actually am. I was surprised at how dismissive she was. I got angry when she was filling in the assesment form as she did not understand. She may have felt she was answering truthfully but her answers were not always what I remebered of my childhood. Also questions regarding mental health in the family contradicted what she had previously said, this wasn't helpful. I havn't spoken to her since. Before that I had never swore or openly got angry with my parents. I am partly to blame as for this misunderstanding because apart from when I was about 8 (when I said I was down and cried not wanting to go to school) I have always tried to give the impression I was OK and confident. This is despite having no friends in the last years of primary school and the first years at secondary. Even when I did 'make friends' I would often sit there and have nothing to say in a group. I have always and still do spend much of my time on my own.

The relationship with my partner has become so much better as we learn't about Aspergers. Previously she would misunderstand my motives and behaviour and we would often argue. I would often not be able to make sense of her reaction.

I have low confidence and find the world difficult and I don't know why. Aspergers provided some answers and reassurance but now I don't know where to look and thats frustrating and leaves me feeling at a loss. CBT can make me feel that I am wrong and the majority is right that I have to change.

40 minutes does not seem that long for an assessment of possible aspergers. I was seen for several hours, by several different autism specialists, over several days, and my parents were involved. Did anyone go with you to the assessment?. What questions were asked? Were you asked about obsessions/special interests, understanding emotions/Theory of Mind, tantrums, friendships, motor skills, school reports, sensitivities, phobias etc. Have you had difficulties all your life? There are also other developmental conditions other than AS, such as ADHD, dyspraxia, pathological demand avoidance etc. Have you been screened for these?

Hi Scorpion0x17,

It was at the Sheffield Asperger Syndrome Service. The assesment was done by a locum Consultant Phsychiatrist. I feel that I have to accept her proffessional view.However I am finding it really hard to move on even though I tell myself it is not healthy to keep thinking I may be on the spectrum. It is the thing that makes the most sense and I can't yet find any other way to explain how I am.

As I have always tried to put up a front that everything is OK. But I am now 39 and it is becoming more clear that I have few connections with the world and I am genuinely finding many aspects of adult life very difficult. I can and do function and outwardly may seem OK to many people. However if anything alters the structures that I have set up then I find that really hard to cope with.

The 40 minute assesment identified anakastic and anxious-avoidant personality. However from reading the assesment report I am not in total agreement at how these have been arrived at. It is as though I have somehow been put in a box that is not right.

Hi Jon,

Do you know whether the person that did the assesment was a psychologist, and were they trained in the diagnosis of autistic spectrum disorders?

Misdiagnosis is common, because of a lack of trained specialist, so, if you feel you have been misdiagnosed you may want to ask for a reassesment, and second opinion, from a specialist.

However, just because many are misdiagnosed, that doesn't necessarily mean you were.