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.

But actually the epilepsy thing - I have heard the rate of co morbidity is 1 in 3. Is that accurate, or based on old numbers, does anyone know?

I suspect some cases of epilepsy are misdiagnosed see stars site link and some cases of anorexia may be www.nhs.uk/conditions/gastroparesis/Pages/Introduction.aspx.

www.stars.org.uk

Ghost, Ive always been led to believe that apprx 37% of our loved ones have developed epilepsy by their late teens. And the late teens seem to be the time other things start to happen as well.

VertigoNun - in what way do you think they are misdiagnosed?

Two of my children had reflex anoxic seizures, and one of them went on to develop serious epilepsy. I've always wondered if they are linked. In our case, there is a huge difference between the seizures, with the epilepsy causing far moe severe seizures, ending up with ds in ICU.

Hedgehog - sorry don't know if this is helpful now or not. Road tax is an informal name for a tax that car drivers pay which helps pay for maintenance of the roads. So the poster who first mentioned it was making a jokey point that the car driver was more entitled to use the road than the cyclist. It wasn't a very good or accurate point so it annoyed some people. I think it was unfortunate that your question about the wording just happened to overlap with another person who WAS being pedantic about the name, because the real name isn't "road tax", it's something more technical. So your post was assumed to also be pedantic/sarcastic, whereas you were actually just asking a question.

I agree though AIBU is quite like that, people tend to jump on others for no reason or perceived slights. Good idea to hide it if you want to avoid that kind of thing.

The NT world is a hell hole and they don't realise or even care about how difficult they make it for autistics dealing with tricky and manipulative so called health care professionals just adds to the stress. They don't care either. The world is lonely, frightening and threatening. You're in a state of constant high alert looking out for the next perceived threat. Not to mention the almost constant noise which is stressful in itself.

Once dh has died I'm off to Dignitas. I do worry about ds2 though. He's high functioning so might be okay. I've advised him not to get a job working with the general public. I hope he gets to hide away in a lab or workshop or something.

The NT world is a hell hole and they don't realise or even care about how difficult they make it for autistics

Hidden, thats quite some generalisation but I'm sorry you feel this is the way of things.

Once dh has died I'm off to Dignitas. I do worry about ds2 though

Could you not reconsider that and stay alive long enough to help your son through life?

Obviously it's a balancing act between raising ds2 and making sure he's okay and getting the hell outta here.

Hidden, is your husband ill?

No, not yet.

So what makes you think he will die first?

I was undiagnosed until I pursued dd1's diagnosis - spent my teens/20s in a state of suicidal depression/massive anxiety which only lifted when I found a stable relationship/work I could do from home, in my 30s.

Dd1 is 12, recently diagnosed, and has already been treated for an ED. She also has a ridiculously restricted diet and goes through anxious phases, although OK at the moment.

He's older than I am and there's a history of aggressive prostate cancer in his family. He won't go for his checks. It's reasonable to think he'll die first.

Hidden, can you talk to someone about your thoughts and how you feel?

Because no one gives a shit.

No, there is no one to talk to and I can't afford to pay for someone to listen.

No, there is no one to talk to and I can't afford to pay for someone to listen

You could talk here. We'd listen. Wouldnt even comment if you didn't want us to. Maybe just getting it all out would help.

You can't talk about stuff here. It's personal. Thanks for listening anyway.

Hidden, please PM me if it would help you.

Im 4 hours ahead of Uk time and just about to go to bed. But I am an early riser

Right now ill bury my head in the sand thank you very much. My asd kids are 5 &7. Dont want to think about it. My thoughts are with all those who have lost their child

My 16 year old severely autistic son has just been diagnosed with epilepsy. He has an extremely cautious consultant & he had 4 tonic clonics & an MRI before dx (no EEG - not possible). His health has improved dramatically since starting epilepsy Meds a month ago & he has clearly been unwell (partial seizures probably) for quite some time but been unable to tell us.

He should have regular blood tests with his meds but I can't see how we'll manage that - he can't even tolerate a blood pressure check. Going to the doctor needs me to go along & do the waiting & have 2 carers or TA's come along with him when we have an idea of when he'll be seen. He usually lasts about 2 mins in a consulting room.

I can see is more at risk than my other children and when he needs help it is harder to access. (Seizures were suspected for 8 months before his first tonic clonic).

I've been putting off asking for support with the life threatening aspect of dd1s genetic condition(whether we should be accessing one of the hospice type places near by ) She also has Autism and it makes the condition far worse. Without the autism the condition means mortality rates in childhood are 3 times that of the general population so this stuff isn't new to me but still shocking.
Dd also has reflex anoxic seizures which were initially misdiagnosed as epilepsy . I do wonder if she also has epilepsy sometimes.

Depressing stuff and I worry for parents with a new diagnosis seeing those headlines but I hope it improves things having it all out in the open. My experience of the professionals monitoring dds health with her genetic condition is they are very cautious because of the autism as it means she can't always express if she has pain. They have been very aware and supportive.

I'm glad that you have found a treatment that helps, Devilish.

Has his anxiety improved, too?

Sort of cote. That's why his consultant chose valproate to try first as it has a known calming effect. We're only now reaching the time when we can accurately assess mood changes. He has a lot more happier moments & his energy levels are back to normal. However, that means he has trouble sleeping & when he can't cope with something he is back to full strength. He can't cope with school holidays so he is having a lot of anxiety spikes at the moment (mainly at home).

He had a week where he was very much his old self though - it may be that the dose needs tweaking or we may need to get through the school holidays.

I can see now just how much seizure activity he has been having though

So self injurious behaviour (head banging) has decreased dramatically for example.