50 years old - is Aspergers diagnosis worth it?

Hi recombinantsocks,

Thx for the suggestion. Unfortunately, my GPs knowledge of ASD services is extremely limited and they originally suggested a diagnosis was only available privately.

However, I've contacted PALS at the hospital, and they are getting the clinic to write to me with (1) a likely timescale for CBT sessions and (2) any alternatives which may be available while I wait for CBT. We'll see what they say.

Richard

Hi Richard,

You could go back to your GP to discuss the situation. They have control of the funds for treating their patients. Perhaps that could refer you to a different service provider with a shorter waiting time?

Having had the diagnosis, I was told that I would be referred for ASD-specific CBT. Since then, I've asked repeatedly about the timescales. I finally got the clinic to work out the likely waiting time based on the number of people waiting (16), how many people they saw at once (4), and the length of the sessions (12 weeks). So that means I'll be waiting a year! Why don't they tell you this at the diagnosis?!

My access to other talking therapies has been stopped due to the ASD referral, so now I'm in limbo. Hope the depression doesn't kick in again in the next 12 months ...

NAS18906 said:

Congratulations (I think?). Hopefully, the ASD specific CBT will be more successful than your previous attempts with CBT.

Thanks!

Strange mixture of feelings - relief after 9 months of assessment and finding a possible cause for things my moods/depression, mixed with frustration at having a rather vague diagnosis and thinking about all the explaining I'm going to have to do.

Congratulations (I think?). Hopefully, the ASD specific CBT will be more successful than your previous attempts with CBT.

So I finally got my assessment results today.

They're saying I have "atypical autism", which basically means that assessment scores didn't reach their threshold (for ASD) but there is obviously something there. They also suggested that my scores may be lower due to the various coping strategies which I've developed (without realising) over the last 50 years. So even in my assessment, I didn't appear as autistic as a I really am!

Next stop is some CBT (cognitive behavioural therapy) designed specifically for people with ASD, which could include issues with work and family. I've had CBT and other talking therapies for my depression in the past, but they didn't do much for me. Apparently this isn't unusual for people with ASD, as the therapy isn't focussing on the key issue and the therapist may also not understanding ASD fully.

So, there we are. It's taken 9 months and now I'm feeling very relieved.

richardsw16 said:

I'm currently working with engineers who can't stop fiddling with projects to reach their nirvana.

Well, that is their aspie tendencies coming out to play. Do you see obsessional attention to detail? poor communication skills? better understadning of things rather than people? A lot of engineers are on the spectrum but their environments have usually worked out how to accomodate them - it is common to separate man-management duties from technical subject matter experts and it is common to recognise technical skills as at least as important as political skills. I have also found that two undiagnosed aspies can be a recipe for fireworks - before I was diagnosed I was driven to tears by another who I comprehensively failed to get on with. In hindsight, it was sooo explainable and understandable. I am learning to be utterly patient and calm when dealing with others - particularly with people who I think are on the spectrum. There is no point in getting worked up. Listening is also a skill that we are not good at - if someone is being resistant to your ideas then there may well be a valid reason but they sometimes can't communicate that reason well.

Regimented regimes are bad. A previous boss was ex-forces and I couldn't work with him because he treated everyone the same and tried to enforce process as more important than the actual product. Good processes are essential and serve to help the process along. Bad processes become ends in themselves.

Thanks for the book tip - I think it might be useful for my current situation ("resting" between jobs!)

NAS18906 said:

I have had bad experiences in small organisations and larger ones. I am currently working on the theory that my last job (bad) was not structured enough. It was supposedly a fast-moving environment but there were no systems or structures to help one manage the flow of tasks. I think that I may be better off in an environment where work is managed properly - e.g. sensible systems in place for prioritising and documenting the work. Organisations have different cultures - some thrive on chaos and creativity - some thrive on control and precision. Marketing companies (or departments) provide very different social environments compared to engineering companies where it is normal to work to a different timescale and precision. There are large and small variants of each but I don't think the size is the crucial factor.

Yes - I'm coming to a similar conclusion.

I've worked for start-ups where the lack of systems/priorities/planning has done my head in. I'm currently working with engineers who can't stop fiddling with projects to reach their nirvana.

My biggest challenge at the moment is to find a suitable job/employer/culture where I can enjoy what I'm doing, and achieve something without getting too brassed off with everyone else. I'm easily bored and like developing new projects and ideas, so a regimented, process-driven environment gets me very frustrated.

Reading "Aspergers on the Job" (https://www.amazon.co.uk/Aspergers-Job-Must-Have-Functioning-Employers/dp/1935274090) has been very helpful. I've scribbled "YES!!" in the margins several times.

richardsw16 said:

This doesn't always happen in larger organisations.

I have had bad experiences in small organisations and larger ones. I am currently working on the theory that my last job (bad) was not structured enough. It was supposedly a fast-moving environment but there were no systems or structures to help one manage the flow of tasks. I think that I may be better off in an environment where work is managed properly - e.g. sensible systems in place for prioritising and documenting the work. Organisations have different cultures - some thrive on chaos and creativity - some thrive on control and precision. Marketing companies (or departments) provide very different social environments compared to engineering companies where it is normal to work to a different timescale and precision. There are large and small variants of each but I don't think the size is the crucial factor.

Hi guys,

Thx for your posts. Interesting to get others' viewpoints on my own.

My concern about my assessment is that I understand the specialists have to come up with some objective "score" based on my appointments to give a diagnosis. However, as ASD traits appear so differently (and I've got 50 years of covering mine), I'm not sure what the result might be.

@recombinantsocks - the failure to recognise social feedback is a key thing with me. I just don't "get" it, and plough on with a work project or totally misunderstand why someone is being "difficult". I just avoid any office politics or small talk, but that leaves me in a difficult position when I try to persuade others to take my ideas. My career of short-term and varied jobs is probably a reflection of this, as I've just got frustrated/depressed and looked for something else which might be better or easier for me. My most successful jobs (or hobbies) are where I've had a lot of autonomy but also have access to specialists for advice and guidance. This doesn't always happen in larger organisations.

LMY your description of your reaction to working out what is happening in a social situation is very classic and fundamental to autism. From the sound of it, you react worse than me - I manage to maintain conversation but often completely misunderstand peoples true thoughts and emotions - I react to the words well enough but not well enough to keep up with appropriate sympathy for the person I am talking to.

If you are living a reclusive life and are happy with that then there is perhaps no need to put yourself in the lions' den. I do wonder, however, how sustainable that is in the longer term?

I think so rbs. From my brief look at the subject aspies do not possess the instinctual ability to read non-verbal signals that average people possess and have to work hard at figuring out, intellectually, what is going on. Many videos put out on YouTube by sufferers make it clear that this can be very tiring and the reason why people on the as don't do a lot of socialising from choice. I think I can relate to this a bit from my pretty much traumatic experiences (few that they are) in social situations consisting of a lot of people I really did not know well and the feeling of being 'lost at sea' in not having a clue how to conduct myself. I often found myself travelling inwards in my mind in order (I assume) to figure out what I was experiencing. The problem with this, of course, is that you can't be responsive to people when you are pre-occupied with mulling over the meaning of what is happening to you and end up 'going through the motions' just to survive the overwhelming sensory stimulii. I'm told you can learn to cope better in social situations with practice and the right kind of strategy but this takes a good deal of commitment and determination so there has to be a good reason for aspies to want to put themselves in the lions' den again and again.

The "difficulties at work in negotiating and persuading people" that Richard mentions are a big telltale hallmark of the issue in his case. This suggests difficulties with communicating with others and difficulty with imagining other people's points of view. This is a clear manifestation of two of the three issues in the diagnostic "triad of impairments". People's apparent, or superficial, eccentricities are often a result of our failure to recognise feedback in social situations. We learn bad habits (and have consequential issues like mental health issues) and do not get the social training that other people instinctively soak up in social situations. The actual social communication blindness is actually invisible particularly if one is markedly eccentric or 'odd' in some way. People with autism often have other things, like sensory issues, that seem to come along for the ride. but the central diagnositc criteria are detectable by experts.

My understanding of the spectrum term is that some people are completely blind to all nonverbal communications and are completely clueless about what other people are thinking or feeling. Other people may have some sense and can pick up some of the signals some of the time.

@LMY, I hope this helps?

One thing that I have discovered in studying different cases of Asperger's is that every case is different so that the patterns of behaviour one person exhibits won't be the same as another person and that the severity of certain traits also differs. This is why you have to be tested by a qualified person who is experienced enough in order to give you an interpretation of your particular patterns of behaviour. It can be quite confusing to try to self-diagnose yourself because sometimes you can see similarities between your behaviour and people on the autism spectrum, yet at other times there doesn't seem to be any correspondence at all, which I guess, is why it is called a 'spectrum' and not a black and white thing. However, you must feel you might well be experiencing tendencies that are due to an autistic predisposition which is cleary affecting your life in a negative way so it is well worth pursuing an official diagnosis. Self-knowledge can only be beneficial because knowing our strengths and weaknessess will allow us to manage our lives more effectively than not being aware of what makes us tick. Even if it turned out that you were not on the autistic spectrum this would also be valuable because you would then know the problem must lie in another area.

@lostmyway

It was my sister (a teacher) who suggested it. A mixture of things - dispassionate responses, difficulties at work in negotiating/persuading people, a series of shorts jobs where I got frustrated/bored and needed to move on, periods of depression, lack of response to talking therapies and antidepressants, problems at home with my wife and kids, lack of friends (or a need for them). I then started reading up on aspergers and saw myself in a lot of the traits which I'd thought were "normal". I'm trying not to make 2+2 equal 5 by trying to match myself to the ASD traits, but the more I read, the more I understand about myself. I was beginning to feel that I just "thought differently" anyway.

The difficulty (particularly for the NHS assessment) is that I've developed coping and hiding mechanisms over 50 years make me look "normal" to others. However, I am getting totally stressed, depressed and frustrated underneath.

I clearly don't have some characteristics of ASD/Aspergers - I have a daft and very sarcastic sense of humour. But I think I tick many of the other boxes. We'll see when I get my feedback in June.

Getting a diagnosis (even if they just say it's "mild") will help me with future job choices, and hopefully a better situation at home.

Hope that helps.

What makes you think you might be on the autism spectrum richardw16? What kinds of behaviours have you noticed?

Well, the process continues.

I had an ADOS test a few weeks ago, which was a mixture of questions and practical tasks (mainly with toys!). It was videoed so the specialist could watch it through again afterwards.

The test was obviously designed for children, but I did my best to act "normal" for me. For an adult, it was sometimes very obvious what the tasks were trying to identify.

At one point, the specialist said he had to "complete his paperwork", but then emptied a bag of random items (toys, stationery, and one of those pin-art things) on to the table in front of me before going back to his "update" his notes. Maybe he wanted to see which one, if any, I might look at or play with?

I've now got a final appointment in mid-June to hear the results. I will also get a "report" afterwards.

The previous assessment had been just questions, but this was more practical. One thing I realised about myself if that I seem to show more ASD traits when I'm *doing* things than when I'm talking to people. Maybe I've learnt ways to talk "normally" to people through my various jobs, but just can't stop myself when I do stuff.

I'll keep you posted.

Thanks very much Acoll, I've read and downloaded their leaflet.  It is good to know there may be something to fall back on if things don't work out here. However, I noticed that the leaflet states that unless there is evidence from aparent or sibling, a full diagnosis may not be possible.  I wonder if my psych meant the same thing, and just didn't explain to me about the questionnaire being one way of gaining such info?

I don't know why I missed this thread, I am 49 and have recently been diagnosed. I have not completed the process, which has taken just over a year from start to finish.

I had hoped my diagnosis would open up some ongoing support from talking therapies, but that has not been the case, I'm still fighting that one.

My journey has been a bit different, as it was my cousuellor that refered me initially. The autism team then got it contact with my gp to get a referral. At the time I could not see my gp because of the anxiety they keep putting me through for another medical condition. I still have problems accessing my gp and medical appointments, which is compounded because I can not see the same gp, they do it on a rota basis.

Its early days, but I think my diagnosis will help me understand the chaos I find myself in. 

I think the main thing it is going to help me with is work, I am generally finding life getting harder all the time. This is now affecting my work, and being able to explain to them why this is happening is something I think I will be able to use to help work/life balance.

Random

It is worth getting a diagnosis.

Technophobe's experience is sadly repeated by others, but it's an absolute falsehood to say that you can't be diagnosed without parental input - it may be helpful to have some, but a good diagnostician won't need it. Any diagnostician who says it is essential is not a good diagnostician for autism spectrum conditions as they are only admitting to their own limitations. In this case, you can say so and ask for a second opinion, hopefuly from somebody who actually knows what they're talking about.

What does a diagnosis lead to? There isn't a 'single' answer to that because diagnosis, like life, is what you make of it. What it has lead to for me is that I finally have an answer to who I am, why my life has been mostly poo, what my difficulties are, but mostly it lead me to this website and a 'family', at last, who 'get' me. I love it when we squabble, because it's just like a real family, but I don't doubt for a moment that if I was having a bad time (they are still going to happen) that I'll get anything but understanding, care and support from the others on here.

I get loads of support from my local services and I have come to understand just how vulnerable an adult I am, and how much they also understand that. I don't tell them enough how much I appreciate their support, but I'm certain that without their help I'd be a crumbled wreck once more. My diagnosis got me that support.

I don't know anyone who regrets getting their diagnosis, but there are several people who regret their choices in sharing it. It is private medical information and I would advise extreme caution before you tell anyone, but this question doesn't arise for you at the moment. So, other than that, is it worth getting a diagnosis? I give you a very firm 'Yes' to that question, no doubt in my mind whatsoever.