Troubling stats

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!

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...

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...

I'd say those things are my only focus.  But when the service users arrive and I'm in their world, the rest of the world kind of fades away.

I'm writing a novel which is going off at all kinds of tangents and doesn't really have a plot, so I don't know how or where... or even if it will end.  But it's about all of these issues we talk about on these forums.  What it's like to feel like a lone voice.  What it's like to try to understand something that seems inexplicable enough to me... so what chance has the rest of the world got?  It keeps me out of trouble!

The old "Everyone has their struggles" - a statement which seeks to minimise then ignore any issues.  The workplace can be a particular course of stress and anxiety.  In one office I took my manager aback when I referred to a "seething cauldron of discontent".  And she laughed, although I really wasn't joking.  

Sometimes the best way through is by focussing on the time outside work.  Cats and gardening have been particularly helpful in my case.  

Daisy.  She's a rescue.  I got her not long before mum fell ill in her final decline.  She gave mum a lot of pleasure in those final months (I moved in temporarily as full-time carer, and Daisy came with me).  She kind of got me through it.  And she continues to.

Ah, the butterfly fascination.  I could see the assessor's ears pricking up when we came to that.  :)

What's your cat's name? Cats are lovely company. 

I feel pretty much the same - though it's still a struggle to get taken seriously.  At work, especially.  I don't like to say things.  It's not so much about being ignored or feeling a 'nuisance', but getting that blank response that often comes: 'Everyone has their struggles...'

I keep going, wishing the days would speed up so that I could retire.  Finding reasons to keep looking ahead. 

Sad though it may sound, it's honest.  After mum passed away, and with the problems I've had in the workplace in the last few months, if it hadn't been that I had my cat to be responsible for, I could easily have just given up and let go.  Sometimes, you need something like that.  Some kind of reason outside of yourself.  What would happen to her if anything happened to me?  So I keep that in mind.... and that gives me a stepping stone to the next thing.

On the other side of that, if anything happened to her now, it could be very difficult.

I haven't got a word for my response! What a dumb way of dealing with what they see as a problem! Jenny B if they did that to me I would hit the bottle! (With no previous alcohol problem). As Martian Tom said,  they want to treat a symptom without addressing the cause. A bit like giving painkillers for an infected appendix. I like your name, by the way. Butterflies fascinate me. 

That's probably why they like to check if certain difficulties were there from childhood. Just to check it's not a recent acquisition, like a designer tee shirt. And if anyone else says that, it is literal ignorance. I'm afraid I am quite tough with myself as I realise there is little support to be had. Except here. I'm afraid in this world not all disabilities, and not all ages either, are seen as equal. I do feel like I'm on the ultraviolet part of the spectrum. But I have to count my blessings. Life has taught me to survive. I am able to do most things for myself. And as I get older, I no longer care what most other people think of me. What they think is their problem, not mine. I'd like to help others. I'd like for them not to have to go through what I did. I'd like to know other people feel the same way. At the same time, I acknowledge the many problems we have encountered, and still do. I get depressed too. Ain't nobody else going to dig me out of the holes I get myself into. Maybe someone will give me a bigger spade. 

Indeed.  What I need, of course, is individually tailored support, but that's not on the menu.  

I have a long history with drugs such as Frisium, Propanalol and various SSRIs.  I even pinched some of my dad's Valium when I was 16 and had to do a presentation in class.  When I mustered up the courage to complain about nerves or anxiety, I was told I was just "being silly"!  That was as far as "help" went in the 70s.  

The thing is, though, it's not much better now.

Which is precisely not what you're doing.  Instead of making an informed decision to continue drinking, you're basically being told 'we can't offer you what you need.'  Disgraceful.

My GP dispenses a week's supply of Diazepam to me every now and then.  She's reluctant, though, because she says 'They're addictive.'  Well, guess what?  So's wine and whisky and beer, too.  Which is better?

I spoke to her about trying Propranolol again - though I don't remember it making much difference last time I was on it.

Yes, I recently came up against this very problem.  When asked about drinking habits it seems my wine consumption is a little over the top.  "Did I want help with this?" I was asked.  "Well, yes." I replied, "But not if you're just going to give me advice on numbers of units and alternative beverages.  Only if I can have support, advice and guidance on mitigating or coping with the various drivers in my life that mean I feel a strong need to drink."  I got referred back to the care of my GP with a note on my file stating that I am making an informed decision to continue drinking!

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 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