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Autism and life expectancy research out

(15 Posts)
PolterGoose Fri 18-Mar-16 07:16:20

Shamelessly 'stolen' links from a thread in 'In the News' but feel it's important to share here too.

BBC: People with autism die younger

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

sad

zzzzz Fri 18-Mar-16 08:36:26

I think likely mismanaged epilepsy, diet/exercise, and MH account for this. Thanks for link

jellyhead Fri 18-Mar-16 08:54:59

It is a Swedish study and Sweden has a high suicide rate which may be a factor in the research.
It is an eye opener though. Personally I wonder if poor diagnosis plays a part with people having a condtion they don't fully understand and get appropriate support with.

zzzzz Fri 18-Mar-16 08:59:06

But if they weren't dxd then they wouldn't be part of the statistics.

PolterGoose Fri 18-Mar-16 09:05:45

It may be a Swedish study, but there was a huge control group. It would be less worrying if suicide rates were congruent between autistic and NT people, but this suggests a huge discrepancy.

jellyhead Fri 18-Mar-16 09:21:15

I said poor diagnosis thinking late diagnosis so support wasn't in place as a child.
I don't know how well autism is diagnosed in Sweden but I hope it is better than the UK.
I'm not disagreeing with the study. My ds1 has autism and I worry constantly about what his future holds.
High suicide rates is massively upsetting to me .

ChowNowBrownCow Fri 18-Mar-16 09:34:37

I had the news on in the background this morning - when my ds is who is 10 heard this and started getting upset and saying I don't want to die! I quickly turned it off but he now believes he could die young!sad.

PolterGoose Fri 18-Mar-16 09:44:41

Chow horrible as it is, if he's able enough to hear and understand the news you have a good foundation to support him developing good mental health. Now is the time to work on confidence, self-esteem and resilience. IME his 'outcome' is likely to be much better if he's happy with himself and able to do what he enjoys.

MadameBonbon Fri 18-Mar-16 10:16:46

My aspie son is 12 and my greatest fear for him is poor mental health and the road that will lead him down. Like all of you my blood ran cold when I heard the news this morning. I'm clinging to the hope that, as this survey has presumably been based on findings of diagnosed 50+ year olds passing away earlier than average national mortality rate, the fact that our younger children have had early diagnosis and therefore likely early intervention, through us they will be accessing a huge portfolio of information that will ensure they DO take good care of their physical and mental health - eat well, exercise well, don't sit in dark rooms glued to screens for days on end but get out into the real world, pay attention to their bodies and build relationships with others who will also be mindful of their welfare ("don't forget to go to your dental appointment, John" or "did you go for your cervical smear Sue?") These are all benefits that, possibly, weren't available to the study group, hence higher rates of suicide/poor health awareness and management etc. I eagerly await NAS and our National Health response.....and in the meantime, I'm telling myself - and all you other worried Mums out there - try and stay calm. We're doing all the right things for our children and their outcomes will not be solely defined by their autism or research study findings but more by how we are raising them and the limitless love, compassion, empathy and respect we show them.

tacal Fri 18-Mar-16 10:20:33

Chow my ds would be the same if he heard it. My ds really struggles with the thought of death. I think the thought of dying is making him depressed and he is only 7! I am trying my hardest to help him with this but it is very difficult. I hope your ds does not keep thinking about this. It will be very upsetting for him.

tacal Fri 18-Mar-16 10:24:06

thank you for the positive words MadameBonbon you have made me feel a bit better smile

jellyhead Fri 18-Mar-16 10:26:50

Thank you MadamBonbon.
Lovely post

PhilPhilConnors Fri 18-Mar-16 11:25:23

My son often begs us to kill him and makes detailed plans to kill himself, but CAMHS won't take it seriously, or offer any advice/help, we were quickly managed to discharge.
Suicidal thoughts are seen as normal when it comes to ASD. I've wondered for a while if families were actually helped, or even given a booklet with practical, simple tips, instead of families being blamed and diagnoses ignored, would this make a difference to the suicide rate of adults with ASD.

For my son, we have the added problem that the headteacher at school will not acknowledge his ASD, ignores my emails, and isn't trying anything supportive, so whilst ds appears to manage fine in school, his stress levels are very high, which then contribute to violent meltdowns and more threats to kill himself.

NTs in a position like this need to seriously up their game, parents cannot deal with this alone.

Tutak Fri 18-Mar-16 11:31:55

Can I pop in? I'm a sister of ASD brother just turned 60. Constant vigilance needed as he is minimally verbal and has epilepsy too. Wrote about poor health outcomes/early mortality for people with ASD and LD for The Guardian a year ago -http://www.theguardian.com/lifeandstyle/2015/mar/29/autism-ill-health-learning-disabilities-non-verbal-patients. I'm a big believer that there's a lot of 'diagnostic overshadowing' among professional carers and health workers - i.e. putting down some symptom that would ring alarm bells in neurotypical person but is written off as 'autistic behaviour' when it isn't, it's a health problem. Particularly worrying when you're so old you've lost parents and may not have siblings/old friends in life who can spot a new behaviour, just supported by underpaid/undertrained/overworked professional carers... There is a lot of work still to be done to raise awareness of particular health needs, but for mums of younger people with ASD/LD, awareness is much better than it was in my brother's day ….

Tutak Fri 18-Mar-16 11:40:21

Sorry, link not clear
www.theguardian.com/lifeandstyle/2015/mar/29/autism-ill-health-learning-disabilities-non-verbal-patients

There's a Utah study as well which is older and says much the same thing as Sweden. For some UK research there's the excellent CIPOLD too (not ASD but LD, but there's overlaps).
www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf

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