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.

[caroldecker]

Without belittleing the issue, the headlines are misleading. The study follows ASD diagnosis from 1987-2009 and states diagnosis was rare before 1990. The results show that 0.91% of the general population died in the study period vs 2.6% of the ASD group. This shows that ASD sufferers are more likely ot die young.
However the average age calculation is spurious because 97.4% of the ASD group are still alive and the fact that diagnosis prior to 1990 was rare suggests the ASD cohort is significantly younger than the non-ASD group - ie the non-ASD group almost certainly has a large number of undiagnosed cases.

[Devilishpyjamas]

I suspect (unfortunately) it's fairly accurate for people like my son caroldecker (diagnosed with severe autism, severe learning dusabilities & epilepsy).

[CoteDAzur]

carol - "the fact that diagnosis prior to 1990 was rare suggests the ASD cohort is significantly younger than the non-ASD group"

No. Your link clearly says "Odds ratios (ORs) were calculated for a population-based cohort of ASD probands (n = 27 122, diagnosed between 1987 and 2009) compared with gender-, age- and county of residence-matched controls (n = 2 672 185)" - They did not compare young people with ASD with older people of the general population, some of whom also have ASD. They compared people with ASD

And if they had, the contrast would be even more damning than it already is, as you would expect an older population to have higher mortality rates and a pure non-ASD group would have lower rates than a mixed one.

[CoteDAzur]

Devilish - It sounds like an improvement since the last time I saw you speak about your DS. Best wishes

[Devilishpyjamas]

Thanks cote. Yes it definitely is - and it's a big relief to see him well again & also to know what is probably going on when he has an unwell episode.

[Allofaflumble]

Just to add a little balance. I know an autistic old lady of 93! She is on NO medication which is incredible really. Hardly ever sees a doctor. She lives quite happily living alone, just pottering about.

She still loves clothes shopping and cooks daily for herself. I have Aspergers and live with suicidal thoughts, high levels of stress and anxiety. Diagnosed at 60! Always knew there was something different about me.

[bialystockandbloom]

I can't pretend to know much about comorbidities but it wouldn't surprise me that the suicide rate is higher among the ASD population

Like phil above, my ds is only just coming up to 9 but has been talking about killing himself for months. It's terrifying enough atm, and we don't even know where/who to go to for help, but the thought that he'll become a suicidal teenager/young man is just too bleak to contemplate. Yet i must do, as I'll fail him even more if I bury my head in the sand and don't try and help him more now.

[bialystockandbloom]

I would give anything to think my ds could be as that lady you describe allofaflumble - she sounds awesome! We could take anything if ds was only as happy as he was even a year ago.

[Allofaflumble]

She is awesome Bia , quite an eccentric but awesome with it. She is fitter than a lot of people I know!

[Allofaflumble]

Bia I meant to say very best wishes for you and your son. At least he has parents who know what the problem is and above all love and care for him.

[VertigoNun]

to all struggling.

[Philoslothy]

I can't bring myself to read the article. My eldest son has made numerous suicide attempts, he head bangs, self harms he can also be violent and it worries me that he may lash out at the wrong person. I worry endlessy about his future

[VertigoNun]

I attempted suicide twice when a teen. Despite Eling even worse since I didn't try again. I will only try again when I know I will be successful. The mh care I received was not suitable to me, they even ignored my physical health conditions and said they were all in my head. I don't trust them due to their behaviour when I complained.

I believe we are best to do as the old lady, get o with our own life and potter about safe at home.

[Themodernuriahheap]

My ILs are on the spectrum, or were. And lived to an immensely long age. And were fulfilled and content in their chosen roles.

So don't despair, parents..

It does depend in part, I suspect, on either having an AS partner who gets it, and just not having to conform at home, or having a patient wonderful NT partner who copes. Sadly for DH I fall into neither category.

But although this thread and the underlying data are distressing, I am relieved to see it. There is so little support for adults, and a whole generation of the undiagnosed. Anything we can do to make it more visible is good. (And the UK is better than eg France, a/ c various MNr s and others. )

[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?

[ThirtyNineWeeks]

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

[bialystockandbloom]

Thank you flumble

And yes, to everyone here struggling.

[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.

[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.

[VertigoNun]

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

[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.?

[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.

[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]

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?

[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.