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.

[UrgentSchoolHelp]

DS had an immediately life threatening illness when young and also has a diagnosis of HF ASD, probably caused by the brain damaging illness when young.

I totally echo that the system is designed to withhold care as much as possible - there are only finite resources after all, so it makes sense.

The only time the NHS ever pulled their finger out and fucking did something was when DS's problem became life threatening, and even then I think we got very lucky having a pro active doctor.

Getting a diagnosis for ASD took one 3 hour appointment with someone well known who diagnoses for the NHS also. We were unbelievably lucky. I cannot imagine the torment parents go through trying for years to get an NHS diagnosis with the multi disciplinary team bollocks which takes years. I did ask the private consultant about NHS support post diagnosis but the impression she gave was 'more trouble than it's worth' if the DC is high functioning.

I found the article very depressing. But then I try to remind myself that it doesn't apply to everyone.

[VertigoNun]

My brush with mh services seem the same as others, I got not much from it and it's all games.

I got more from self study and help from a private ed psych working with my children.

I found using the rules of "the games people play" helpful.

[hiddenhome2]

Autistics don't receive help because we can't navigate the Machiavellian and treacherous world of The Mental Healthcare Professionals who receive extensive training in manipulating and running rings round vulnerable people.

And

First, you have to get past the GP - most of whom haven't got a clue about anything much at all, and virtually nothing about autism.

And

If you can make eye contact for more than a few seconds and aren't constantly stimming, you haven't got a hope in hell of being taking seriously.

The odds are stacked against us.

[Allofaflumble]

Thanks for your concern Bia, I was having a particularly bad day yesterday when I wrote that!
It is how it can feel like though.

[bialystockandbloom]

Oh flumble

Can you identify anything that helps you? Eg any certain activities? Being with certain people?

I find it heartbreaking to read your last post. Why tf isn't there any proper bloody support for this, especially for adults (not that there's much for children either), which is ASD specific? (Rhetorical question, not aimed at you!)

[hiddenhome2]

Could you talk directly to your bil? Get him to do some of the online screening tests perhaps?

[Cleebope]

Giraffe my bil is very physically healthy as he has never smoked, drunk and eats plain cooked food so a simple but balanced diet. He loves mountain biking which keeps him fit. I think he will outlive his siblings though he is 10 years older.

[Cleebope]

I worry about bil as if anything happens to mil then Dh and I are all he has left. I don't know if he has even heard of aspergers or suspects he has it. How would I broach this topic with him or would it be best never discussed? This thread is massively helpful. No one in dh's family discusses this openly or even covertly... Everyone pretends bil is fine when he obviously isn't.

[notagiraffe]

Not RTFT but am shocked and sad to read this statistic, as I wasn't aware of it. My autistic dad is going strong at 80. But I wonder if, as well as the MH issues which must spike the statistics, there is the general issue of self care. I have to remind and nag DS2 (HFASD) to shower, wash his hair, clean his teeth, wash his face. If I don't (and sometimes I stop to see if he has picked up on the cues) he can go for a week without properly cleaning himself. The dentist was shocked at how poor his dental hygiene is. And if I didn't encourage him, he'd never exercise and rarely get fresh air. He'd probably not eat much fresh stuff either. Long term, once he's an adult, all this lack of self care could play havoc on his health, unless he learns by rote to take care of himself and does it out of habit (which is what I'm hoping)

[Allofaflumble]

For me Aspergers is like being in a prison and I am responsible entirely for being there. Thing is I am not quite sure what my crime was.

I am the captor and the captive. The accuser and the accused. My mind is a labyrinth of the endless machinations, analysing, sifting, observing and criticising. Nothing is instinctive. I dont know what I am feeling. Just know I feel awful and want it to stop.

Yes, it gives you periods of respite (thank goodness or we would all commit suicide!), but as it wanders off for a while, like Arnold Schwarzenegger it is vowing "I'll be back".

It does have its good moments but when it shifts into the negative it is a living hell.

[hiddenhome2]

Autistics seem to be very practical, pragmatic people and suicide can seem like a logical choice really. It's distasteful, but true.

[wildrollers]

I was diagnosed with autism through the NHS as an adult a few years ago and I get quite a significant amount of support through mental health services, council housing and disability benefits. Getting the services was more closely linked to my MH issues than the autism though - I was receiving the support before my autism diagnosis. The therapy I've had hasn't been that helpful (although I've had a lot of sessions) because the therapists had no understanding of ASD. I've had a significant number of suicide attempts and I self harm and have an eating disorder, so I can definitely believe the statistics.

There are support groups locally but I haven't attended them, but as far as I can tell they are open to self-diagnosed adults so there is no need for a diagnosis if your BIL wanted to attend. I'm also a member of various online groups but again, you don't need a formal diagnosis to use those.

I haven't been able to work for years so I don't know much about employee protection, but I've been in education and the diagnosis has helped me get support and adjustments for deadlines etc. Also, I've never had to claim JSA when out of work, I'm on ESA (support group so no interviews) as the work related activity and any back to work schemes would have been massively stressful for me. Financially I'm quite well supported as my rent is low and I get the highest rates of PIP and ESA.

So having the autism diagnosis is very important to me, I feel more comfortable asking for help about it than I would about my MH issues, and it helps me understand my problems much better.

[MephistophelesApprentice]

It's very interesting (in a bleak kind of way) how many AS children are showing suicidal ideation at around the age of 9 or 10. I was the same; my first referral was due to an expressed death wish in a school essay at around that age.

hiddenhome2 I get where you're coming from. If this relationship ends, then I'll be truly alone and there will be noone who wants damaged goods like me. Dignitas will seem truly appealing then.

[hiddenhome2]

Clee there's virtually no help or support after diagnosis. Even for children and teens.

If your brother has any mental health difficulties such as anxiety or depression then he may be able to get some help - usually just medication - but they're not interested in asd at all its a very lonely diagnosis to have.

A diagnosis can give a bit of protection at work though.

[Cleebope]

When Bil was job hunting and having to do back to work schemes it was incredibly stressful for him, he was nearly suicidal and nearly lost his Jobseeker's Allowance. He performed so badly at interview that no one offered him work, not even as a cleaner in a factory. And he would've been an amazing cleaner. So methodical. So then I thought if had a diagnosis he could get help to get back into work. Also maybe an adult support group or a family support group for mil may be available. Or even disability allowances? Anyway he finally got local work as a driver so he's OK for now.

[ArmchairTraveller]

Sometimes it can be a protection, sometimes a dx stops you getting a job offer in the first place, or people assume all sorts of things because 'they know what people with autism are like'
As an adult, it has to be the decision of that adult whether to go for obtaining a dx or not. What did your DH decide to do as a consequence?

[Themodernuriahheap]

Umm, I wish we had got a diagnosis. It might have meant dh's work would have made reasonable adjustments rather than pushing him into breakdown. It might have meant the police treated him more sympathetically.

No, no extra support, but a shield for protection.

[ArmchairTraveller]

Truly?
An adult diagnosis gets you little or no help or support. There's nothing out there even for those who hit adulthood with a dx from childhood.
It would only be useful if it helped him understand why he finds some things challenging when everyone around him doesn't.
he has found another niche after his car mechanic job, so I'd just be delighted for his good fortune and let it be.
You could do some reading if you think it would help you understand him a bit better. Conversations with my children are fascinating, I don't see the world the way they do.

[Cleebope]

After reading these posts I am asking advice on whether it is best to seek diagnosis for my adult Bil , aged 54. I am sure he has aspergers and also learning difficulties, so not high functioning. But never diagnosed. We have never discussed this with him. He lives with mil. Worked as a car mechanic for 30 years, then 6 stressful and soul destroying years looking for work after redundancy. We did suggest to mil that it may be helpful to seek a diagnosis, perhaps there is support available? He now has a job that suits him. Mil's gp told her there would be no point in a diagnosis at this point in his life. It would be damaging. Is there any point to middle-aged diagnosis for autism.?

[VertigoNun]

Small steps
www.theguardian.com/society/2016/mar/21/charities-call-for-mandatory-training-on-autism-for-all-teachers

[Philoslothy]

Thankyou for the advice, I don't think that he has ever had a friend and certainly not a girlfriend. I hope this changes as he is able to mix with people in his niche.

[Themodernuriahheap]

Philo, make sure he socialises with the people with whom he has common interests. and preferably has an AS partner who is also interested in the same things. It then doesn't matter what their life looks like to outsiders, it is what it is like for them that matters.

Though some research suggests that AS/AS marriages break down frequently, Sarah Hendrickx sees it differently and AS/NT can be hell for both.

[bialystockandbloom]

Thank you flumble

And yes, to everyone here struggling.

[ThirtyNineWeeks]

Meph, you're a great writer and I always admire your intellect on mumsnet. Please accept these

[Philoslothy]

We have created a world aWay from the world our son. We bought an isolated house where he can shut off the world. In some ways university has also provided a false environment there he will meet more people like him. I worry about the time he has to enter the "real world".

Who will want to marry my son? What kind of life will she have? Will he have children? How will they cope with him? How will he cope with the inevitable unpleasantness he will face? What happens when I am not around?