My diagnosis

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Hello Wrong Planet users. I haven't posted for over a year on this forum (I switched to an AS forum in my own country) but I have something to share which maybe someone can help me with with a comment or two.

The situation is this. I am 59 and became pretty sure about two years ago that I had been somewhat autistic all my life without knowing quite what it was that I had and that it had affected me quite a lot. After getting confirmation of this from a number of sources (autism centre, therapist etc) I signed up for an official diagnosis at the autism clinic in a teaching hospital in a top university. The waiting time was 13 months but eventually I had my first appointment and they decided to do the full testing procedure. It consisted of about six appointments over four months. Three weeks ago I had my final appointment and was given the results. At the time I agreed completely with their conclusions and was happy to have an official "verdict". Since then however I have started to feel a bit bewildered about how I should view myself in the light of their conclusions. The reason is this:

As their first point they said I was in fact autistic as I had thought. The clinician then explained a lot of results and tables and I asked her to say in two sentences what she meant, because it wasa lot of information. She said "You have Asperger Syndrome". The next thing she said was that my Aspergers is not conspicuous and that as a result I would not be given a formal diagnosis of Aspergers. So far so good. Next I asked if she meant that although I was autistic it wasn't clinically relevant. She said no, it is clinically relevant, and mentioned all the problems I had had as a result of it and if it hadn't been for the Asperger Syndrome I would be in a very different situation socially and professionally, so it was relevant clinically. They then asked me if I would be prepared to meet parents of children and young people with Aspergers to share my experiences of life because often parents worry about their children and would like to get an idea of what to expect. She said that they don't get many older people at the clinic with AS and it would be good if I would meet the parents. Then she asked if it was OK to give me the result of the diagnosis verbally or whether I would like it in writing, namely that I was autistic but wasn't being given an autism diagnosis. They are going to send me a letter saying that I am autistic and that I will not be given an autism diagnosis. She also said that if things became difficult for me later on I could come back to the clinic.

At the time I was happy with this arrangement, because I do sort of cope in a way within narrow limits and didn't want to wave a diagnosis in front of anybody to claim special help. The problem since then is more a question of identity (or something like that). It seems strange to be getting written confirmation that I have AS and not a diagnosis, because it is not clear to me what exactly the difference is between written confirmation that you have something and a diagnosis that you have something. I understand exactly where the clinic is coming from and have no complaints about them at all because they were really great with me the whole time I was there and I loved being there and felt I was really in the right place for once (sounds strange but that's how it was). On the other hand it is harder than I expected to know what to think and feel about this result, because it is a bit strange. It is even harder to know whether if it came up as a question I should say I have officially confirmed Aspergers or not. I suppose it is officially confirmed, but not diagnosed. I don't really understand. Any ideas or similar experiences?

Many of the people I work with who are diagnosed with Asperger's were diagnosed as children. The ones that were not diagnosed as children, like yourself, are rarely diagnosed as adults. The reasons for this are numerous. There are hardly any services to assist adults with Asperger's. The clinicians assume there are no problems if you are married and/or have a job...although in my experience there is much more to life than those two things. Also, if you are not in any distress or suffering they do not see a reason to diagnose you with anything.

That being said, in terms of getting an official diagnosis, it is totally up to you. I am sure if you go back to the clinic and ask them to formally diagnose you, they will. Is that what you want? Do you want the official label? If you do not want it for gain in the environment, it is still valid to want it for your own peace of mind. If you do not need it for any reasons then let it go. Know that you are different than most, that might be enough for you or it may not. Ask yourself what is important to you and do it. Tell people you are on the Autism Spectrum if that is how you want to define yourself. Another person in the same situation as you may not want to identify themselves as autistic at all. It all comes down to you.

Keep me posted on what you decide! Also, visit my website for more information on what I do for a living. It may interest you.

It sounds to me like it might possibly be some legal / bureaucratic / insurance (I don't know what would apply in your country) garbage. That you are autistic - they've given you a letter stating this. But you are not "diagnosed", so you can't be eligible for assistance, disability, whatever.

Sometimes there could be discrimination issues too. Some people do not want a diagnosis because they don't want to be treated differently.

Thanks for your comments. I find them very helpful . The situation with the official diagnosis is just the way it is and I have no plans to push for one. I'm not even sure I know whether I really need extra help or not. The strange thing is that I just about manage to survive in society, albeit with no friends and a very precarious job with no pension prospects at all. However I have a girlfriend (she's 51) who I see once a week and when left to myself I am generally happy to be left in peace with my "interest". The confusing thing was really the apparent contradiction between "you have X and we'll give it to you in writing" and "you won't get a diagnosis". As regards identifying oneself as autistic, I don't know that many people to "out" myself to, which is one of my symptoms I suppose, or a side-effect thereof. At work they expect me to function in ways that I either can't or only with extreme difficulty, but they seem to have accepted that I'm a bit odd and not at all flexible or stress-resistant. If they weren't so desperate for employees I probably would have been fired a long time ago, but they are desperate so I am still there. If I said I was autistic I'd probably be fired straight away. The clinic said I am an "inconspicuous" case and that was a key word in the whole final assessment. The thing was also that during the evaluation procedure they did a full IQ test over 2 hours and it turned out (much to my surprise) that I have an IQ of 145, which seems very high. The question then arises why with such a high IQ is everything so difficult for me that I can't do many of the things that most people take for granted. But the net result of the high IQ and the autism taken together seems to be that I can survive. I think they want to restrict diagnoses to people who really can't cope at all and need a diagnosis to get the help they need.

As of last month there is no AS diagnosis in DSM V so most places in the world will not be giving an AS or an autism diagnosis from now on but an ASD (autism spectrum disorder) diagnosis instead. Professionals will still be talking about the presentation in terms of AS and autism but the diagnosis, if you get one, is always going to be ASD.

If the clinician was saying that your history shows you have an ASD then you should get diagnosis.

However, it is likely that your presentation as an adult is not clinically severe enough to match the criteria so the clinician may have difficulty justifying the diagnosis as it labels you as disabled when your presentation may not look severe enough to warrant that label. ASCs do not have to be disabling but diagnosis is generally only given if you are disabled by your condition. While you have been influenced by your condition you may be one of those fortunate enough to have been able to develop beyond the point where it causes you to be significantly impaired in your life.

It may also be that your clinician is inexperienced and does not recognise that the underlying impact on your life is still present but that you may have managed to mask most of the problems.

In the UK adults do get diagnosis even if they appear to be clinically below the threshold for diagnosis providing that the history supports the ASC - if it is clear that you were on the spectrum as a child then it is accepted that the condition is still present and diagnosable even where your development has taken you beyond the point of significant impairment in clinical terms; this may not be the case in all countries and it may be to do with access to services, etc. In the UK most services are provided through the NHS or social services and are not dependent on insurance, etc. This means that a diagnosis does not give the person any direct rights to funding or services in most settings - funding and services are provided where need is discerned but that is not dependent on diagnosis. Although having diagnosis helps if you have a relatively "mild" presentation and also if you need services specific to your condition, if you are severely impacted by your condition or disability, whatever it is, then services should be provided to meet your needs regardless of diagnosis.
The system isn't quite as efficient as that but in essence you do not need any diagnosis in Britain to access services, only evidence that you need support which is assessed independently by social services, etc. and actually anyone can ask for that assessment if they feel they are struggling to cope for any reason even if it is not due to any form of disability.
Where you have an insurance based system it is very different as you have to prove your needs formally so diagnosis is essential and it may be that clinicians are discouraged from giving formal diagnosis for a disability unless there is an obvious need to access services to avoid unnecessary insurance claims.

In the UK there is one area that diagnosis really helps - reasonable adjustments. This is where employers, educators, etc. are required to make adjustments to meet the needs of someone with a disability. Without diagnosis they are not required to do this - or at least it is difficult to convince them that they should. I work in an autism specialist setting and I receive significant adjustments in my job even though I am not formally diagnosed - my boss took one look at me when I arrived, declared I was on the spectrum, and made adjustments on the basis of his assessment of my needs. I could probably get away with murder and he would make adjustments for me, lol! This level of respect for differences and willingness to make adjustments for it is extremely rare - I am very, very fortunate. I have a friend who works in what might be considered one of the more ASC friendly professions - he's a lecturer - who recently came to me desperate for help to get diagnosis because he cannot cope after changes at work where they reorganised into open plan offices and his department is refusing to accept that he has a problem with the new environment. With diagnosis they would not be allowed to force him to work in the open plan office that is driving him insane but without it they can ignore him and even treat him as difficult which in turn can lead to bullying in the workplace. He has been aware of his ASC for some time but has never considered the need for diagnosis till this happened to him.

Personally, I don't actually need diagnosis but I still swing between whether or not I want it - my boss specialises in helping people through diagnosis and I know he would make it as easy for me as possible if I asked him. But I know I'm on the spectrum and I have all the understanding and adjustments I could need and I have developed past most of the problems my ASC has caused me in my life. However, I am thinking of going back to university and it would mean I could get equipment, support and adjustments as they are funded on the basis of diagnosis in that setting...

You have to think about what formal diagnosis means for you in your setting - if you are happy just knowing without formal confirmation and can get on with your life then that's fine, but if you do need to access anything then you should consider asking for formal confirmation.

I was guessing the same thing -- from your nickname etc I'm guessing we're in roughly the same geographic area, and from what I gather, a diagnosis here would mean

a.) a permanent mark on your medical records that would make it impossible to apply for some jobs, permanent disability insurance, etc.
b.) maybe some benefits depending on the severity of the condition.

I'm actually really glad to hear of this "assessed positive, no diagnosis" option.

I think it can be the right option in some cases (maybe in a lot of cases). In the letter ( I don't know the actual details until I get it) they are going to write that I am autistic, that it has had clinically significant effects on my life but that the symptoms are "inconspicuous" in the sense that I can cope independently and that one wouldn't automatically think upon meeting me that one is meeting a person with autism. They will also write that that is the reason I am not being given a diagnosis. They mentioned a "Schwerbehindertenausweis" or severe disability card but I reacted with "I am not severely disabled", which was perhaps the wrong thing to say, but I'm not sure a severe disability card would help at all. Maybe they would have given me a diagnosis if I had said "Oh yes, a disability card would be great". I don't know. The idea behind the letter is that if things become more difficult as I get older I can come back to the clinic (it is also a therapy centre) and then the people working there at that future time will know the situation and not just think "This person didn't get a diagnosis so isn't autistic and has no problems". I do feel disabled by the way I am but not so disabled that I can't cope at all. More like a short person having to play basketball all the time. Everything is very precarious and it is frustrating to be permanently overchallenged socially but other people have their problems too. What was really important was to get the official confirmation that I wasn't just imagining things. They told me that when one takes the general population as a whole I would count as autistic but if one took just autistic people I'd be right at the almost normal end of the scale. Which is what I had thought all along. Being "almost normal" has its own disadvantages because no-one understands why you are so strange, but with an evaluation at least one understands oneself why it is so.

This, this, a thousand times this.

I'm still very new at adapting to the idea that I probably have AS/HFA and chicken out of contacting the closest diagnostic centre constantly, mainly because I'm probably in the same range as you are and ... I don't know, other people have more trouble and will need the assessment slot much more than I do? On the other hand, it would be nice to have an official confirmation.
If I could get a confirmation without the SBA, I'd probably feel less like I'm ... taking away from people who need it? Which I realise is nonsense, but that's my brain for you.

So, again -- fantastic to hear that such a thing is possible, and congrats on the assessment. If you indeed come to find you'd like to have the SBA, you'll probably be able to get it -- for comorbids if nothing else, if what I've read in other places is true.

Some comments for Germany:
* Private insurance for work incapability: I got one, on basis that I put on my best NT behavior when I went to the insurance company. You get a list questions on pre-existing conditions, which may preclude you from getting this type of insurance. Only officially diagnosed conditions count and nobody asked about neurological developmental conditions anyway. Having been in psychotherapy may already be a reason for not obtaining this type of insurance. I never was officially. So, no detectable reasons for not insuring me...
* being >30% "schwerbehindert", i.e. being severely disabled gives protection against being fired from your job under certain circumstances. But despite all laws against discrimination, it may well make it more difficult to get a job in the first place, and as for getting rid of the employee, there is need for more creativity in finding a reason, that's all. Asperger's syndrome would count for 50-80% disability.

This is perhaps a bit off-topic in relation to the last few items in this thread, but I just wanted to add a few comments about dealing with/accepting/coming to terms with (or whatever) my diagnosis, as I have experienced it in the month or so since my final appointment at the clinic (it seems a lot longer). At first I was happy about being told I was inconspicuously autistic (as I wrote above), because it confirmed what I thought was the case and was like the missing puzzle-piece in my understanding of why life has always been so strange and difficult despite my good intelligence. It was as if in order to be as strange as me I must be someone with psychological or emotional problems, which was confusing because I didn't really seem to have any psychological or emotional problems (at least not more so than anyone else would have who was strange and different and had trouble fitting in). Getting the diagnosis or assessment or whatever one wants to call it solved this puzzle for me and all sorts of strengths and weaknesses fell into place in accordance with the profile they described at the clinic. Next. I thought "What if they don't know what they're talking about and have assessed me wrongly? How can I be sure that they've got it right?" After worrying about that for a while I realised that there was no "higher court of appeal" one could go to, because an autism clinic in a teaching hospital is presumably the highest court of appeal and so it makes no sense to question the "verdict". So I decided to think of myself as being officially diagnosed as what I was officially diagnosed as and to leave out the question as to whether I "in fact" have what I was diagnosed as having. The same with the IQ of 145 which I was also "diagnosed" as having. I have decided to ignore the question as to whether I actually do have a high level of intellectual ability or not (that is, whether the result means anything at all outside a test setting) and just think of it as an official designation. Both the autism and the IQ are in this way taken out of my hands and I'm back to being just me, albeit with a couple of official labels and better self-understanding. At the moment I think I accept my oddness and limitations much, much better than before the diagnosis. Many people in AS forums talk about having a different operating system to the norm, and that is exactly how it has always felt. It is very healing to have an official verdict which says the same, so that one can stop beating oneself up for the way one is. I am very grateful to the clinic for the understanding they showed, for the considerable amount of time they gave to the diagnosis over many appointments and for making what I think is the correct diagnosis and a helpful one. I'm not planning to inform people of it (ie. family of origin, place of work) as they would probably try to drag the idea through the mud and make me feel terrible and full of doubts, but if it came up as an issue I would be okay about doing so to an insightful or open-minded person. If they were sceptical I could be agnostic about it and just say that that is only the official position and leave it completely open whether it is actually true or not (which I believe it is).

I struggle often to explain to people the difference between disability -- something being "broken" -- versus being different from the majority of people and having a hard time as a result. We need a different word for the case where someone is too different to be 100% comfortable in "normal" society. This is one of the best analogies I have heard in a long time... I will definitely be using it. Thank you!

Also, I think this is the distinction they are trying to make in your case. You are not disabled, but differently-abled, and so they hesitate to put a diagnosis on you, rather than a mere label, because a diagnosis means there's something wrong, not just different.

My 8 year old son is about to go in for evaluation. Everyone who knows him is confident of the outcome already: He is definitely HFA. I have resisted until now going in for a formal diagnosis, though I have known since he was a few months old (and suspected for much longer) that I too am on the spectrum, because I don't consider it a disability in my case, but rather just a different way of thinking. I am running Unix, and everyone else is running Windows. Both perform admirably with regards to their design specs and intended purposes, but each has its own strengths and weaknesses. I am about to bite the bullet, however, and go in for evaluation, to show solidarity with my son, and because I'd like to have a trained professional make it official. I plan to tell the doctor the same thing I have said here, that I am not disabled, and what I have is not a disorder, per se, but rather an alternate order, but I want an official label. I don't believe that here in the US I will be able to get a professional to make the distinction, however, and I will walk out with either a diagnosis of a disorder for something that is simply a different way of being, or no official label at all. I envy you in that respect.

Oh wow! I wrote my previous post, saying I was running Unix instead of Windows, right before I read this last post of yours! This is really ironic. I just joined WrongPlanet an hour or two ago, and had never seen anyone make this comparison before.

Er ... what?

She diagnosed and recognised that you did indeed have AS but she didn't give you a formal diagnosis because you weren't conspicuously autistic enough?

Good God, any halfway competent diagnostic specialist in the field can apply techniques to distinguish between a person's underlying autism and their adopted social persona and/or habitual interpersonal presentation.

In your case, you've had the best part of 60 years to learn a suitable variety of social styles and have gathered enough experience to be able to modulate your autistic tendencies when the situation demands. So it's not surprising that the characteristically autistic aspects of your personality and social viability are not as pronounced as they would be in a typical case involving a youngster (aged five or younger) whose personality is still in the process of being shaped and created, and whose autistic characteristics are usually presented clearly due to the subject not having begun to learn about appropriate behaviour, concepts of personal presentation and the related perceptions of others, and is (in all likelihood) already displayed some characteristics of unmodulated autistic thought processes and preferences (e.g., pursuing special interests in great detail, or displaying an OCD-like tendency toward personal organising methods relating to objects, typically exemplified by toys at this stage in life)

I can understand why you're confused: The clinician's behaviour was thoroughly irrational both confirming and negating your suspicions about your AS status, and leaving you not much clearer than when you went in. Her conduct was also unacceptably unprofessional on a deeper level: If you as a clinician have all the relevant information you need to make an obvious diagnosis, you don't arbitrarily withhold that diagnosis from the subject because of some irrelevant notion of your limited experience of some aspects of their (perceived) personality!

I take it you're in the US, so I'm not sure what procedural pathways and processes are available to you should you choose to pursue this matter, whether with an ultimate aim of formalising the unreasonably withheld diagnosis or just of gaining a personal level of satisfaction.

I can tell you though, that here in the UK if I had a GP who denied I had AS (despite access to that diagnosis in my personal records) I would be highly-offended, would certainly request with the practice manager that I see a different GP in future and would probably make a formal complaint to the relevant department of the NHS.

If (when I went for diagnosis) I had been treated as you were, I would have demanded a second opinion, and I think (although I could be wrong) that you have that right within the US Healthcare system.

http://blogs.discovermagazine.com/d-bri ... n1ClpGNNkh

Thanks, asnlifecoach. Very interesting article! This fits perfectly with the intense world theory.