Why do many autistic people die before the age of 40?

[Auti]

Study finds Autistic adults with learning disability life expectancy is 39

Also autistic adults without learning disability are nine times more likely to commit suicide than the general population.

Autistic adults without learning disability (Aspergers and High functioning autism) life expectancy is 58

Shocking figures but not a great surprise to many autistic adults I'd say.

[Lweji]

The news reports give such differences that I feel the need to read the actual study.

Anyway, why is there a photo of a person who seems to have Down's with the caption as having autism?
How would they know who has autism in the parade???

It's quite sobering, though.

[QueenElizardbeth]

I don't have a proper diagnosis because when I asked about it the doctor laughed at me, but I score very highly on the self-test you can do online (around 45)

I've spent a lot of my life wishing I was never born, and the only thing about this 'news' that surprised me was the fact no one has mentioned it before in the wider public domain. I can't understand that.

I was also fairly relieved at first because I thought it might mean I get to die a few years sooner, but then I realised it was because of suicide and that means being brave enough to do that, and I'm not.

So back to plan A, which is just basically getting on with it.

[PhilPhilConnors]

I read this on FB this morning.
It said it was taking into account epilepsy, suicide and other co-morbidly of ASD.

My 10 yr old often expresses a wish to die, even in everyday conversation. A few times he has put things round his neck in a "mock" suicide.
He has been through CAMHS, two appointments, then discharged. Because this is typical ASD apparently and not a mental health issue.
I can't see suicide rates being reduced until the mental health of people with ASD is properly acknowledged and addressed.
People with ASD are encouraged to do everything that NT people do, there is pressure to "act normal", but the people expecting this don't understand the cost to the individual with ASD, because IME it's largely seen as self indulgence and an excuse when they can't be arsed.
Educating stupid people is also stressful and takes its toll.

[fanjoforthemammaries7850]

Queenelizardbeth can you see another GP and tell them how you are feeling in the hope of getting a more enlightened one?

Hard I know after them laughing. How dreadful.

[hedgehogsdontbite]

Suicide rates are high because of having to deal with situations like this every single day:

www.mumsnet.com/Talk/am_i_being_unreasonable/2594740-Who-was-in-the-right-me-or-the-cyclist?msgid=59929068

I asked a question because I didn't understand what the poster meant. Rather than helping me fill in the gaps people have responded with sarky comments calling me terminally stupid and a pedant. I still don't understand what the poster meant but now I'm in tears and my anxiety levels are off the scale because there's clearly some other script going on that I'm not party to and people think it's ok to treat me like shit because I can't read it the same way they do. This happens all the time and it makes me want to give up on life too.

[fanjoforthemammaries7850]

Some people on AIBU treat everyone like shit. They just need a way in.

[MephistophelesApprentice]

pinkflowerbluesky
Rebecca254
FanjofortheMammaries

Thank you all for the kind thoughts. I was provided with psychiatric support, which convinced me that people would be hurt if I was to die. I disagree; I think that's how people would act due to social expectations but I genuinely don't think they would feel it. But I felt so ashamed and guilty - I hate the idea of hurting people I care about - that I didn't do it. But I feel even worse, even more of a burden, even more not-right. I struggle through the motions of being normal, throwing myself into the miserable screaming tempest of work, constantly terrified of offending people, paralysed with fear at letting them down. It's a grinding storm of shattered glass in my head, swirling round a pit of black empty despair.

I know I'm one of the insanely lucky ones. My specialism is linguistic (can't you tell?) which concealed my diagnosis for a long time. I have friends who help me self medicate. I have a job. I live at home with my parents (at 31 - more shame, more self loathing) but at least I can afford the rent and don't have to worry about administration. I even have a long term relationship with someone who seems to love and respect me. But I don't believe I deserve it - it's a fragile thing that a momentary mistake, one tiny slippage of my agonising hold on normality would break utterly. I know it's going to happen and I wish that some twist of fate would end my life before I'm forced to do it myself.

My linguistic ability meant I could write (bad) poetry when I was younger, which gave me somewhere to vent and some tiny way to communicate with proper folk. I can only imagine the hopeless misery of those who don't have even that.

[StealthPolarBear]

This thread is scary reading, the op itself and the reality of the posts from people living with these conditions and their loved ones.

[fanjoforthemammaries7850]

Don't feel shame living with your parents. You are achieving so much. Maybe too much for you, lots of pressure.it's perfectly fine to live somewhere where you have less pressure and support. And of course you deserve a loving relationship. You sound like an amazing woman.

[fanjoforthemammaries7850]

I assume you use the support thread on here for women on the spectrum? Talking to others living it is often the best help. Although obviously not that simple a solution.

[fanjoforthemammaries7850]

Excuse my typing. Am very tired.

[PhilPhilConnors]

Hedgehogs, AIBU is an awful place. The fight club of MN.
I haven't read the thread but . You're not stupid, and being a pedant is a good thing!

I've noticed that there is normality around children with suicidal thoughts, an assumption that it's normal for young children to think like this, it's a way to express how bad they're feeling when their language skills cannot cover adequately how they feel.
Every time I've been told this, I truly believe it is wrong, especially when you look at suicide rates amongst autistic adults.

[QueenElizardbeth]

Thanks Fanjo,

yes I'm afraid to bring it up again with any of them - and no sure what the point would be in any case, if that makes sense - it feels too late for me.

My son's being assessed next week, he also expresses suicidal thoughts from time to time and I hope if he is given a diagnosis it might help him access resources when he is still young, and not feel so awful about himself.

[fanjoforthemammaries7850]

I would tell them about your experience, at the assessment. They may be able to point you in a more helpful direction.

Also assessment time is very stressful, take care of yourself.

[PhilPhilConnors]

Support thread for MNers with ASD (diagnosed, self diagnosed or suspected.

[PhilPhilConnors]

Sorry, missed a )

[PacificDogwod]

[thank] to all of you affected - either personally or if they have a loved one with autism.

I am surprised by those number although I agree the reporting is a bit sloppy.

I think it is very easy to look at 'average life expectancy' of the wider population and forget how poor a measure 'averages' are when it comes to knowing how individuals might get on.
And as ever there will be many complex factors coming in to play: how easy does a person with autism find it to access health care for autism-unrelated illness or disease, for instance?

I am a GP and in our practice of 8.000+ patients the oldest person I can think of who has a diagnosis of being on the spectrum is in his 40s. I am sure there are of course older adults out there who'd meet the criteria but were never assessed and are high functioning enough to be 'invisible' to services.

Also, I tried to refer somebody for an assessment re whether or not he might be on the spectrum and you have no idea how hard, frustrating and time-consuming it was to find somewhere who would assess an adult AND then apply for the extra funding for that assessment (£ 2.500! ).

I am in no way suggesting that things are rosy for people on the spectrum, but I do think that even in the 20+ years that I have worked, things are slowly inching in a better direction. In health care anyway, I think. So many more people are aware that not everybody is NT. The political will to improve things otoh….

[PacificDogwod]

There's the intended flowers - I should not try and type while the morning madness goes on around me.

[VertigoNun]

There are the false accusations of FII towards mothers on the ASD spectrum and bullying from professionals too.

[FaithAscending]

Mephistopheles do consider joining us on the Neurodiversity thread We're tucked away but we're very friendly. I was diagnosed in January and found invaluable support while waiting for my assessment and after diagnosis.

That does make scary reading although like many things, it needs further reading for clarity. I spent many years feeling anxious, which sometimes tipped me into depression. I never fitted in, when people continually call you 'weird' and alienate you, it's starts to stick. Let's add in as well the stats that something like 90% of adults with HFA can't hold down a full-time job (that's from the Sarah Hendrickx video on Aspergers and employment) so you've got potentially lower income/unemployment on top of the other stressors...it's not easy!

[QueenElizardbeth]

What's FII/Fll (sorry can't tell what the letter is)

Thanks for the link to the thread, I might put a toe in later.

Pacific - that's a lovely post. Thank you for trying - though if assessments are so £££ then I would feel awful asking for one, that seems utterly ridiculous.

It's nice to know there are GPs out there who believe in ASD in adults. The guy I saw said it was a 'children's disease' and that I was wasting his time. He seemed to have been educated abroad (I assumed from his strong accent and ethnicity) and maybe that's something to do with it, maybe the attitudes in other places are different and no one's heard of ASD.

[notonyurjellybellynelly]

My son, classic Kanners autism, Tourettes, and additional mental health issues. Keeping him healthy is as much a daily battle as the autism etc. He self harms, is on very serious medication that comes with its own problems and has a restricted diet, he is also like a vacuum cleaner when it comes to sweets and fatty type foods due what the medicine does to him.

I can recall once being told by Lorna Wing that people like my son dont get the healthcare they require because even getting them as far as the Dr's can be difficult, then there is the fact things can go undetected for a lone time and are only picked up when they've become serious.

So what we do with my son is ensure a full annual check up and because its second nature to him now he takes it all in his stride. We also seriously watch what he eats and we restrict him to one fizzy drink a day and 80gms of chocolate. His dinner is always, steak, or lamb chops, or chicken with roast potato, broccoli and carrots but its all weight out and we quite literally steal calories from him in order to keep things evened out well. He uses a fitbit so we have good idea of whats what. Oh and he also eats an apple and handful of grapes before going to bed. This in fact was one the benefits of his medication. It sorted out a lot of his sensory issues and he started to try different things.

Exercise wise he's walked about 4 or 5kms every night for about 10 years now but he still has a tummy on him because of his medication. He also works out with a personal trainer 3 times a week.

Then there's his teeth. They're also well looked after and I never adopted the softly softly approach to them when he was young. It was a case of 'this is going to happen' and after a while he would clean them himself. I'd get a bit of stick on autism forums at the time but as he's the only one out of 6 children discussed on the forum who haven't had teeth out I know I did the right thing for him. We started with a cotton bud on tow of his teeth and if later on there were days he was wrapped in a towel when a toothbrush was introduced then so be it. He can also floss and use a mouthwash. But he also allows us to do give his teeth a bit of scrub on alternate days just in case. He also goes to the dentist every 6 months for his clean and polish, and at 25 he's no cavities etc.

His feet - he gets cracked heels but they're seen by a chiropodist. He likes that as well. My aunty got cellulitis via a cracked heel and almost died so Ive been very wary of it every since.

Basically we treat small wounds as the occur, as we do with coughs etc. The aim is to try and not let something big develop out of something small. Plus the yearly health checks to ensure nothing invisible is going on in places we can't see.

Its been a real struggle getting this level of care going for him on a practical level because he's autistic and all that can go hand in hand with it makes things very difficult for him. It was also difficult finding practitioners to work with him but we did and no one has ever said no to being asked - would you like to try and make difference in the life of my son who's severely autistic and needs taken very good care of?

[ovenchips]

Pacific I often read the posts you write without taking in who the writer is IYKWIM and think what compassionate posts they are. Then I look for who's written it and it's your name!

I think your qualities must make for such a good GP.

[FaithAscending]

Ha we both linked Polter!

Pacific I'm pretty sure my Dad has ASD too...not diagnosed because he's fine as he is. He lives alone now so he just goes with his own routine. He's in his mid-60s.

[Caprinihahahaha]

I'm not surprised and I think the idea that the 'scary' death rate is due entirely to things like epilepsy is only part of the picture.

Having ASD and a LD is going to lower your life expectancy because often you cannot engage with your own health care .
My son cannot articulate pain. He cannot alert me to any kind of a symptom. He finds visiting the Doctor difficult so will do anything to avoid it. He could, for example, develop a lump and I would know nothing. He could be experiencing pain now for all I know. When we have had to go to the Doctor or hospital the Doctors balance the potential to upset him against the need to investigate. It's understandable but over the years that's not going to help either.

Yes it's shocking but totally up unsurprising to me