Newbie: Undiagnosed Aspergers? Aged 61

Tried so hard to get a referral for an assessment.  To no avail, was told that the health authority (or trust or something) won't pay for adult diagnosis where I live, and in any case it wouldn't do any good being diagnosed!  So I am considering going private but don't know where the money will come from!

Excellent. Go for it. Although it does not change the past it does help to explain it.

Trainspotter said:

I think even with my age it is well worth finding out whether it has been my problem all my life.  It will explain so many things, yes I know that there is the 'if only' point but then life is so full of disappointments and if only we had the benefit of hindsight.  But it can still help me at work, not least the 'reasonable adjustments' which will have to be made instead of constantly having constant criticism for the way I behave and being made a figure of fun for some of my perceived eccentricities.  Six months would not be an over long wait (I have waited 61 years so six months would not be too much to bear) but I would like the diagnosis before I retire!  And I don't look on it as anything to get upset about if I do get the diagnosis.  It is all part of life's rich tapestry.  I will push my GP for a referral when I next see him in a couple of weeks time.  And it has been very helpful reading the experiences of others.

Good luck, mate. Agree with everything you've just said.

I think even with my age it is well worth finding out whether it has been my problem all my life.  It will explain so many things, yes I know that there is the 'if only' point but then life is so full of disappointments and if only we had the benefit of hindsight.  But it can still help me at work, not least the 'reasonable adjustments' which will have to be made instead of constantly having constant criticism for the way I behave and being made a figure of fun for some of my perceived eccentricities.  Six months would not be an over long wait (I have waited 61 years so six months would not be too much to bear) but I would like the diagnosis before I retire!  And I don't look on it as anything to get upset about if I do get the diagnosis.  It is all part of life's rich tapestry.  I will push my GP for a referral when I next see him in a couple of weeks time.  And it has been very helpful reading the experiences of others.

lostmyway said:

I think there must be many people who are in fact on the AS but have remained undiagnosed for many years, partly because they never realized they had this condition or that there has never been much help available on the NHS. They may well have seen a GP about things like anxiety and depression but their Aspergers was not picked up so the person never got to know about their real issues.

Exactly the way it was for me.  It took a therapist to finally point me in the right direction. Now... everything makes sense to me.  Never being able to make friends.  Never understanding things at school.  Always failing in relationships.  Always preferring my own company.  Never getting body language or social cues.  Never being able to make eye contact.  Being hypersensitive to sounds.  Always finding patterns in things.  Always concentrating on minute details.  Being completely absorbed and focused on a few things at the expense of many others.

Everything.

You see, just because someone does not necessarily qualify as 'clinically' Aspergers does not mean they don't have day to day problems and issues deriving from having some autistic traits. We have to remember that it is a spectrum condition and, as such, there will always be a 'cut-off' off point at which the medical criteria will determine whether someone gets an official diagnosis or not.

I can understand the need to help people who are experiencing real and urgent problems due to being autistic and the lack of provision for treatment but does that then mean others, who are still significantly impacted, are left to get on with it as best they can? Presumably, such individuals are expected to make their own arrangements in gaining some kind of professional help and advice which is not always an easy thing to do.

I think there must be many people who are in fact on the AS but have remained undiagnosed for many years, partly because they never realized they had this condition or that there has never been much help available on the NHS. They may well have seen a GP about things like anxiety and depression but their Aspergers was not picked up so the person never got to know about their real issues.

changewillhappen said:

Thanks Tom for the thoughtful reply,

You make some good points.  I would say, although I communicate well, the feeling I have is that it is a well rehearsed 'act' and that I'm cleverly imitating the behaviour of 'earthlings.'  I can be very social but usually find I get over talkative and buzzing with nervous energy.  I know 'ration' my social contact so as to keep my nerves steady.

My own son (who I see 2/3 days a week) who is 15 is now thought ot have autistic traits so this invited a reconsideration of myself.

You make a good point about the psychology of repsonding to the Quotient test.  I deliberately factored in a slight bias to choosing answers I though would confirm things but i wasn't always clear which answers did except in obvious cases.

There's also a history of poor 'mental health' in my family background so it's difficult to sort out the mental health bit and the autism bit.

The mental health bit could so easily be related to the autism bit.  Once things started to catch up with me, and I began to get depressions - that's what I was diagnosed with: depression.  Either that or 'anxiety disorder'.  There's very little else GPs can do, I suppose, if they're not familiar with mental health/autism conditions.  I was referred to the local mental health unit, who diagnosed 'substance misuse' - even though I didn't drink at unhealthy levels.  That was then the treatment programme I was put into!  Later, as I said, my therapist thought it was BPD.  I went back to the MH unit - and the CPN there, in so many words, told me to go away and stop wasting their time.  It was only during further therapy that the possibility of autism, as the root of everything, was suggested.  And so it turned out to be.

I often wonder how many seriously ill people there are out there, taking anti-depressants for 'depression' or 'anxiety disorder' or something like BPD, when the root cause might actually be neurodiversity, and a consequent inability to function to the standards required for a neurotypical world.

Thanks Tom for the thoughtful reply,

You make some good points.  I would say, although I communicate well, the feeling I have is that it is a well rehearsed 'act' and that I'm cleverly imitating the behaviour of 'earthlings.'  I can be very social but usually find I get over talkative and buzzing with nervous energy.  I know 'ration' my social contact so as to keep my nerves steady.

My own son (who I see 2/3 days a week) who is 15 is now thought ot have autistic traits so this invited a reconsideration of myself.

You make a good point about the psychology of repsonding to the Quotient test.  I deliberately factored in a slight bias to choosing answers I though would confirm things but i wasn't always clear which answers did except in obvious cases.

There's also a history of poor 'mental health' in my family background so it's difficult to sort out the mental health bit and the autism bit.

Thanks Tom for the thoughtful reply,

You make some good points.  I would say, although I communicate well, the feeling I have is that it is a well rehearsed 'act' and that I'm cleverly imitating the behaviour of 'earthlings.'  I can be very social but usually find I get over talkative and buzzing with nervous energy.  I know 'ration' my social contact so as to keep my nerves steady.

My own son (who I see 2/3 days a week) who is 15 is now thought ot have autistic traits so this invited a reconsideration of myself.

You make a good point about the psychology of repsonding to the Quotient test.  I deliberately factored in a slight bias to choosing answers I though would confirm things but i wasn't always clear which answers did except in obvious cases.

There's also a history of poor 'mental health' in my family background so it's difficult to sort out the mental health bit and the autism bit.

changewillhappen said:

Hi there,

This is my first post and I'm particularly interested in this discuassion as I'm 56 and only now considering getting a referral from my doctor after years of wondering whether I have autism problems.  My life has been very chaotic at times and I have lived getting deeply frustrated with what I see as my own incompetence at organising and ordering my life.  I have had therapy and treatment for depression but because my inter-personal skills 'seem' good I had doubts about whetehr autism could be a real issue or another 'excuse' I'm creating for the 'balls up' my life appears (to me) to be!

I scored 31 in the Autism Spectrum test, so doea that indicate 'some' traits rather than the 'full job?'  behavioural traits I have are:

Quite a lot of pacing around not knowing what to do next.

Great difficulty prioritising tasks.

Sudden obsession with things from nowhere which I go into deeply even without any background in it (e.g some years ago I trained as a rugby referee having zero backround in it-and did it!)

Holding down jobs and relationships have been very hard.

Dispraxic tendencies doing practical tasks

Difficulty moving objects and reordering things which creates anxiety.

Plenty more but |I wont bore you with them.  Any advice here, appreciated.  I'm worried my doctor will think I'm exagerating as I appear 'well' and good on communication.

Hi there,

Your score and you last comment are interesting.  Most of us who have reached a certain age without diagnosis have learned to adapt to situations and to communicate.  We also, having a hidden condition, can appear very well and 'normal'.  Some people I know refuse to accept that I have Asperger's because I seem to have good communication skills.  But they're not natural or instinctive skills.  I've learned to make eye contact, but I'm very uncomfortable with it and can't sustain it beyond a couple of seconds.  It was only in relatively recent years that I began to realise that I was hogging conversations, and going on at great length and in great detail to questions like 'How was your weekend?' - without even thinking to return the question to the other person.  I still don't 'get' body language.  I can be very friendly and sociable at work - because I have to be!  Outside of work, I have no friends, I rarely go out, I never use my phone - and that's how I like it!

There's always the risk of seeing a set of symptoms and building them up into a diagnosis for something that might not actually be there.  There's the likewise risk of taking the test and giving answers that you think are the ones most likely to point to autistic behaviour, rather than being totally honest about it.  Or, perhaps, you've been a bit more generous to yourself in your answers.  Whatever - it's not a diagnosis, just an indicator.  As I understand it, a score above 32 is indicative of autistic behaviour.  You're close to that.  Much closer than a NT would be, anyway.  So it could well be worth your while pursuing it.

Hi there,

This is my first post and I'm particularly interested in this discuassion as I'm 56 and only now considering getting a referral from my doctor after years of wondering whether I have autism problems.  My life has been very chaotic at times and I have lived getting deeply frustrated with what I see as my own incompetence at organising and ordering my life.  I have had therapy and treatment for depression but because my inter-personal skills 'seem' good I had doubts about whetehr autism could be a real issue or another 'excuse' I'm creating for the 'balls up' my life appears (to me) to be!

I scored 31 in the Autism Spectrum test, so doea that indicate 'some' traits rather than the 'full job?'  behavioural traits I have are:

Quite a lot of pacing around not knowing what to do next.

Great difficulty prioritising tasks.

Sudden obsession with things from nowhere which I go into deeply even without any background in it (e.g some years ago I trained as a rugby referee having zero backround in it-and did it!)

Holding down jobs and relationships have been very hard.

Dispraxic tendencies doing practical tasks

Difficulty moving objects and reordering things which creates anxiety.

Plenty more but |I wont bore you with them.  Any advice here, appreciated.  I'm worried my doctor will think I'm exagerating as I appear 'well' and good on communication.

Is your surgery a group practice, Trainspotter? If so, can you arrange to see another doctor? Not all doctors are the same and what one doctor thinks may not be the same as another.

I suppose some doctors need a lot of convincing because there will be people who have falsely self-diagnosed themselves and expect the doctor to confirm their diagnosis.

However, from what you have described I would say you do fit the AS profile pretty well and if I were you I would persist in trying to obtain a referral, even if this means waiting a long time. Self-knowledge can only empower you because armed with such knowledge you are in a better position to use the tools you will be told about when you are seen.

It's interesting you call yourself 'Trainspotter' since this activity carries Aspie connotations with it - further evidence of being an Aspie!

Hi Trainspotter,

Most of what you've said applies to me, too - and your score is close to mine, which is 39.  I was diagnosed last year, aged 56, following an almost 2-year wait from initial referral.  I was seeing a therapist at the time, who picked up on the autistic behaviours (she initially thought it was BPD, until she delved deeper).  She recommended referral, and my GP followed up.

There are many positives to diagnosis - my life makes sense to me, at last!  It also has its downsides, of course.  I sometimes dwell on the thought that my life might have been much different, with less grief and stress, if I'd been diagnosed earlier.  But there it is.  I have to move on.

Another positive is that my current employers now know the situation and will need to make any reasonable adjustments for me if circumstances arise.  I sympathise with your situation at work, because this has happened to me, too, on a few occasions in different jobs - usually, also, resulting in long-term sick leave.  Now, with my diagnosis, I have something on my side, and my employers need to take account of it or risk discrimination proceedings.

I agree with Paul.  Push your GP for a referral.  He or she might be saying things like 'Given your age, is it worth it now?'  Would they say that, though, if you developed a physical condition?

Good luck.

Hi and welcome.

42 is quite a lot. The things you are saying ring very true for me so I would put money on you having asperges.

Keep pushing your GP and point out the problems it's causing at work. Bear in mind though that waiting lists are long. You could wait 6 months to a year to get your assessment after a referral.

Paul