Troubling stats

It feels an awful lot, too, as if I'm using my condition as an excuse.  People 'normalise' things all the time - even people who should know better.  It's like shouting into a gale.  'Invisible Illness/Disability Syndrome'.  All the 'Not all disabilities are visible' signs in the world are not going to change things, either.  It's a token gesture.  I'm glad to see it.  But I doubt many take much notice of it.

Know what I heard the other day?  'Huh!  Everyone's autistic now.  It's fashionable.'

I think that’s what I was trying to articulate. A psychiatrist asked teenage me if I heard voices. I thought well I can hear yours, and I can hear a discussion in the room next door, so I said simply “yes”. Hey presto I was classified as psychotic! If I’m asked if I drink my answer would be of course! If asked if I drink alcohol, an honest answer was yes. Nowadays I have to clarify what they mean before I answer. I fell on ice and broke my wrist 3 years ago. A very aggressive sounding gp demanded whether I drink! No. Ice is slippery. I stepped on it. No not on purpose!!! So I think I understand how you found yourself alongside those with serious drink problems. I ended up in a mental hospital at 19 and came out completely barking! But there were others there on my wavelength. And they accepted me. I accepted them. Now it is cheaper for the nhs if I have an ASD label and nobody has to see me. Suits me fine, as it turns out because I now know why growing up almost never happened. I actually am able to help myself, or I think I can. I despair that these labels are  stuck on with superglue though. Once in a category .... Plus you can have concurrent conditions. As for alcohol, none of us would turn to overuse for no reason, even if that reason turns out to have been our associates. I hope your friend can get them to consider either a misdiagnosis or concurrent condition. I’m sure it would help her immensely, as you probably do. 

DaveAsperg said:

but that is not easy

Well, no.  Quite.  We can all make choices.  But when you feel pushed into a corner, ignored, not taken seriously, it becomes very easy for these things to multiply.

In some ways, my problems have escalated the older I've got.  Just 8 years ago, in my early 50s, I was physically super-fit.  Coming home in the top 5% of runners in road races (in all runners, not just in my age category).  I can still cycle 18 miles in under an hour.  I'm still pretty obsessive about healthy eating.  I'm fitter than many men my age.  But other stuff has ground away at me.  Okay, I have my diagnosis, which has enabled me to make sense of my life.  But I haven't been able to get any support.  I go through my battles with the booze.  I'm not an alcoholic, but I can still have periods of abusing it - and then stopping.  I'm starting a period of being off it again now.  I'm working at it.  I want to live, to enjoy things, to see if I can achieve a few personal goals.  But I'm pretty much on my own.  There's not much support out there anyway, but particularly for people my age.  And you're right... it's not easy.

Hi Alice.  Yes, we're individuals.  'Autistic' becomes the category to lump us all together, though.  Basically, it's society doing what it does best: be lazy.  Find a convenient label and apply it.  In the same way that people are lumped together as gays, Muslims or anything else that can suit preferred beliefs or prejudices.  The vast variations within those 'categories' tend to get ignored, because it's easier to grasp onto something convenient: a stereotype.

In this sense, I can understand why some people keep quiet about their diagnosis, though I usually tell people.

Rip Van Wrinkle said:

I am an odd shaped personality who doesn't fit the boxes provided! In your opinion, do you think those of us who cannot quite function and ask for a bit of help get tossed aside because we don't have a classic mental health problem? I've noticed if someone gets addicted or drinks too much then there is support to get off the substance, but not to look at why the addiction started. Maybe statistics aren't the problem. It's the way society has let itself go. 

I can only relate my personal experiences (and feelings).  I'm sure I'm not alone.  When I started to get serious depressions in my 30s, all I could get was a bottle of anti-depressants.  Something to help me to 'carry on as normal'.  In my early 40s, after years of pestering my GP, I was finally referred to MH services 'to deal with this once and for all' (in his words).  Pretty much the first question I got at my referral interview was 'Do you drink?'  I answered in the affirmative because that was true.  Maybe on occasion it was more than I should, and maybe I also sometimes used it for the wrong reasons.  But it had never been a problem for me as such because I was too committed to personal health and fitness.  I ate well, I was a distance runner and cyclist.  Anyway... I was told 'Then we need to stop you from drinking first before we can deal with any underlying mental health problem you may have.'  I was then referred to an alcohol unit, where I was mixing with people who had serious alcohol addiction problems.  I couldn't understand it.  It was, however, the only place I'd ever found where I seemed to be talking to people on my wavelength: people who had trouble fitting in, who'd had struggles in early life, who'd suffered from depressions and anxiety and turned to the booze as a form of medication.  Before long.... it became my problem, too.  That wasn't prescience on the part of MH services.  That was me thinking 'What the hell have I got to worry about?  I'm not like this.'

Fast-forward ten years.  An increasing cycle of depressions and drinking.  And then I finally get someone to say to me 'Have you ever thought that you might be autistic?'  Boom.  Then I get the diagnosis.

So... I had all those years of early life wondering what on earth was wrong with me, then the depressions which - as I now see - were largely a result of that, plus childhood family difficulties: disruption, bullying, emotional disturbance, etc.  Then finally the answer.

For me, alcohol wasn't the cause.  It was the symptom.  But that's not how it was seen. 

I have a friend who is now in her forties.  She is bright and intelligent.  She crashed out of Cambridge with all kinds of problems.  She was assessed and diagnosed with BPD.  Since then, that's all she's been treated for.  She has never worked - not paid employment, anyway.  She is absolutely convinced, as am I, that ASC is the true root of her problems in life.  But... her GP and care managers, etc, won't even consider it.  She's had her diagnosis.  And that's what she's treated for.  Her life for the last 20 years has been a long, painful and distressing round of medication, substance abuse, rehab, Sections....

Hi again Jenny B. You've made a good point. If there is a strong genetic cause for ASD and if they really believe there is yet another strong link to suicide, then identifying those at risk should be a much higher priority. The lack of support could be a much bigger problem! But another point you made seems sadly true. Lack of willingness to finance Autism diagnosis and support. Most are not dangerous, so why help non dangerous individuals to help themselves? Wait and see who becomes dangerous, then help that small minority far too late. Sometimes I do wonder who REALLY thinks in black and white! 

Hi Martian Tom. Like Jenny B I find statistics can be alarming. Then I realise they are basically guesswork, albeit educated guesswork. Some are more accurate of course. Some are heavily biased to prove a point. I strongly believe in individuals, rather than groupings. I may now have an ASD label, but I'm just an individual with a quirky personality, possibly unique, with problems. I am an odd shaped personality who doesn't fit the boxes provided! In your opinion, do you think those of us who cannot quite function and ask for a bit of help get tossed aside because we don't have a classic mental health problem? I've noticed if someone gets addicted or drinks too much then there is support to get off the substance, but not to look at why the addiction started. Maybe statistics aren't the problem. It's the way society has let itself go. 

This is the NHS take on matters

https://www.nhs.uk/news/neurology/people-with-autism-are-dying-younger-warns-study/

We must all try and live healthily and get on top of mental health problems early, but that is not easy

Rip Van Wrinkle said:

Personally I feel if the general public were more accepting of differences of any sort, less judgemental of others, less aggressively competitive, then many people would live longer and suicide rates would fall.

I agree that it's probably in good part a socio-economic problem, driven by a society that places a premium on earning capability and financial advancement: you are what you earn, or what you have the power to buy.  In such a society, as we've seen over the last decades, many fall through the cracks, regardless of whether they're autistic or not - though autistic people face greater challenges.  It shouldn't need people to have to get some form of diagnosis before they can begin to get anyone to take notice.  Even getting a diagnosis is no guarantee of anything - witness people failing to get PIPs, failing ESA assessments, failing to get reasonable adjustments in the workplace.  Failing to even have their diagnosis - conducted by a qualified medical professional - taken seriously at all.

Yes... it all does drive people towards bad lifestyle choices (or even bad lifestyles they have little choice about in the first place), ill health, suicide...

Hi JennyButterfly. The stats cannot possibly be accurate. Life expectancy cannot be ascertained when most older people have never had the chance to be assessed, so do not feature in the stats. Secondly, diagnosis is not an exact art. It’s early days with diagnosing the full spectrum, and certainly older people hardly feature. Also a lot of females are misdiagnosed. For those who ARE diagnosed, many have other conditions as well, physical and/or mental health. Would a death or suicide be down to ASD or depression, heart defect or what? Personally I feel if the general public were more accepting of differences of any sort, less judgemental of others, less aggressively competitive, then many people would live longer and suicide rates would fall. Also if the services would help people who are having serious problems in their development/lives without the need for a formal diagnosis, there might be an improvement. Formal diagnoses are black and white thinking. Spectrums are not black and white. And if a person is having problems functioning or existing, it IS a problem whether the doctor, psychologist, nurse, parent, teacher etc. understand it as a problem or not. It’s not THEIR problem, it is the original person’s. So I think the stats are just a guess by people who cannot possibly know. Statisticians love numbers. Anybody who is going through serious problems who wants to know how to help themselves deserves help. It shouldn’t need formal diagnosis. If anything, this system is driving people towards bad lifestyle choices, Ill health and suicidal thoughts. I’d love to gather the statistics for the number of people who ask for support to help themselves and get turned away as if they are not deserving enough. Maybe those figures would depress me too much though!