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Autism Spectrum Disorders (ASD): Compendium Thread

I'm torn between thinking that it's a good thing that we discuss this very important matter, while also thinking that doing so is depressing enough to upset people. :(
 
This paper shows the widely reported stats as less bad (UK):
https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00195-3/fulltext#:~:text=years) for women.-,The apparent reduction in life expectancy for people diagnosed with,–19.02 years) for women.

https://www.ucl.ac.uk/news/2023/nov/premature-death-autistic-people-uk-investigated-first-time

"The researchers found that autistic men without a learning disability had an average estimated life expectancy of 74.6 years, and autistic women without a learning disability, around 76.8 years.

Meanwhile, the estimated life expectancy for people diagnosed with autism and learning disability was around 71.7 years for men and 69.6 years for women.

These figures compare to the usual life expectancy of around 80 years for men and around 83 years for women living in the UK."

This also :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6713622/

"Taken together, these studies suggest that individuals with ASD may be at a greater risk for early mortality compared to the general population. However, little is known about the factors that explain this risk."

And this:
https://www.sciencedirect.com/science/article/pii/S1750946722001647

"However, we found only a three-year difference in median age at death between autistic and non-autistic decedents, which is a much smaller disparity than reported in some other studies. This potentially suggests that when autistic people live to the age of 65, they may live to a more similar age as non-autistic peers."

This one mentions the findings of research in Sweden:
https://researchbriefings.files.parliament.uk/documents/POST-PN-0612/POST-PN-0612.pdf

https://www.spectrumnews.org/news/large-swedish-study-ties-autism-to-early-death/

"People with autism are more than twice as likely as their peers in the general population to die prematurely1. Previous studies have hinted at premature death among people with autism, but most of them explored mortality risk in small populations and focused on specific causes of death, such as accidental injury or epilepsy. The new study relies on data from more than 27,000 people with autism and 2.7 million controls from the Swedish population. The researchers found that autism increases mortality risk regardless of the underlying cause of death.

he most common cause of death among people with severe autism is epilepsy, which affects roughly 8 percent of people on the spectrum. By contrast, the most likely cause of death among people with mild autism is circulatory diseases.

Suicide is the only cause of death that is more common among individuals with mild autism than those with severe autism. The risk of suicide in individuals with mild autism is about 10 times higher than in the general population. Women with autism are more likely than men on the spectrum to commit suicide."

Nationality seems to play a big factor (access to healthcare?)

Epilepsy, accident (drowning), and suicide seem key factors.
Maybe someone with a good grasp of reading such material or medical or stats training can glean more.
 
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More:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6924702/

"The growing body of evidence suggests higher rates of physical and mental health conditions, increased mortality and higher rates of intellectual disability than in the general population.10 Autistic adults have higher prevalence of chronic medical conditions, including conditions such as stroke, vision and hearing impairments, and Parkinson’s disease.11–14 These outcomes are experienced by many autistic adults regardless of intellectual functioning.7 It has been reported that between 25% and 84% of autistic adults have a diagnosed mental health condition, with depression and anxiety the most commonly reported conditions.15–19 Autistic adults have higher rates of suicide,16 20 increased mortality and reduced life expectancy.21"

I'm getting the impression that different studies are finding quite different findings; that many of the headline grabbing stats are outdated; that autistic people do indeed have a reduced life expectancy and increased likelihood of a range of health conditions; that high needs autistic people have a much lower life expectancy lower needs autistic people and that may be connected to things like epilepsy; that lower needs autistic people are at much higher risk of suicide than others; that nationality and health care really matters.

I'm obviously no expert, or even someone medically literate, so bare that in mind.
 
Stormkhan said:
When it comes to taking readings, I literally draw the requisite squares and write the numbers in one at a time.
Which is odd because ...
Growing up, at school, my maths was crap. Mental arithmetic - minimal; division - an arcane art! I got lousy 'O' level and CSE results for the subject ... but something was there.
In my hobby/profession of (tabletop) role playing games, I had to review many - bad and good. One (a science fiction game called Other Suns) was fun to play but the character generation and even ship creation system was lousy; I suddenly realised what was wrong. All the (laborious) calculations were based on flawed algebra! I sat there, before starting a major month-long campaign, correcting the bad algebra.
Over a decade later and, to help with my company accounts, we took a C&G course in Book-keeping and accountancy. Both t'missus and I passed with distinction. I'd figured it out.
While my mathematics is poor, my condition means I see patterns and errors in that pattern. The numbers to me are irrelevant - I tend to spot faults in the pattern and unexpected results.
Still and all, the proliferation of calculators was a godsend to me. Thanks to my early 80's 'O' levels, I have the pointless skill of using slide-rules!
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I remember when I was doing my accountancy course the lecturer stopping me as I questioned him and saying "no ignore the maths, just look at the process" and he was spot on, thats what accountancy is, a series of processes
 
Regarding the life expectancy rates for people with autism, I wonder how much of the physical and mental health care issues stem from communication difficulties between patient and doctor.

Doctors tend to not listen to people’s concerns, in general, whether due to time constraints, or their own biases. Women know that doctors always either ignore or downplay their concerns. This is regardless of whether the doctor is male or female.

People who are autistic have difficulty identifying what is the important piece of information that is needed when trying to express their feelings. I would imagine that if someone is fearful and anxious of something not feeling right, this would make it even more difficult to get their point across when expressing a health concern.

These two factors alone would, imo, create barriers to accessing the necessary healthcare, thereby affecting life expectancy ratings.
 
brownmane said:
Regarding the life expectancy rates for people with autism, I wonder how much of the physical and mental health care issues stem from communication difficulties between patient and doctor.

Doctors tend to not listen to people’s concerns, in general, whether due to time constraints, or their own biases. Women know that doctors always either ignore or downplay their concerns. This is regardless of whether the doctor is male or female.

People who are autistic have difficulty identifying what is the important piece of information that is needed when trying to express their feelings. I would imagine that if someone is fearful and anxious of something not feeling right, this would make it even more difficult to get their point across when expressing a health concern.

These two factors alone would, imo, create barriers to accessing the necessary healthcare, thereby affecting life expectancy ratings.
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Given the difficulties I've had with healthcare over my life, I'm going to say I agree.

I struggle with admin and phoning and memory etc - getting to see a GP is very difficult for me, and often I just don't bother because it's so difficult.

When at the GP I find it hard to articulate my issues because I have difficulty with sensory perception of my body - pain is either far less or far more than 'normal'; I feel 'bad' in my 'insides' even when apparently nothing is wrong; there is very little time during an appointment so everything is rushed and the GP doesn't seem to talk in a way that I can engage with very well.

Many times the GP has just brushed me off with a 'we can't find anything; come back if it gets worse; it'll probably go away on it's own' type response, and that is usually embarrassing and I leave feeling confused and somewhat of an imposter. Again, this means I avoid the GP as much as possible.

I have a range of lifetime issues that are quite vague - headaches, IBS, insomnia, bladder issues, organ discomfort, joint pain, etc etc - which mask other issues and symptoms, again making it far less likely I go to the GP.

Add in everyday work and transport issues, and I avoid the GP as much as possible even when I really should go. And when I do go, it often seems pointless. And I have terrible medical anxiety and hypochondria, so mostly I live in discomfort and stress and fear. I imagine I'm not alone.
 
Delightful said:
Given the difficulties I've had with healthcare over my life, I'm going to say I agree.

I struggle with admin and phoning and memory etc - getting to see a GP is very difficult for me, and often I just don't bother because it's so difficult.

When at the GP I find it hard to articulate my issues because I have difficulty with sensory perception of my body - pain is either far less or far more than 'normal'; I feel 'bad' in my 'insides' even when apparently nothing is wrong; there is very little time during an appointment so everything is rushed and the GP doesn't seem to talk in a way that I can engage with very well.

Many times the GP has just brushed me off with a 'we can't find anything; come back if it gets worse; it'll probably go away on it's own' type response, and that is usually embarrassing and I leave feeling confused and somewhat of an imposter. Again, this means I avoid the GP as much as possible.

I have a range of lifetime issues that are quite vague - headaches, IBS, insomnia, bladder issues, organ discomfort, joint pain, etc etc - which mask other issues and symptoms, again making it far less likely I go to the GP.

Add in everyday work and transport issues, and I avoid the GP as much as possible even when I really should go. And when I do go, it often seems pointless. And I have terrible medical anxiety and hypochondria, so mostly I live in discomfort and stress and fear. I imagine I'm not alone.
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I don't think you are the only one, and I also don't think it is just people who have your difficulties.

Doctors are not really taught how to converse with people. They often can't explain any issue without using their medical jargon.

It is telling, to me, when nowadays police officers are taking training on how to approach people who are autistic or have mental illness, but the medical field doesn't seem to have the same inclination.

I know the reason behind the officer training - because there have been disastrous outcomes to altercations with people who act differently - but you would think that the medical field could see the benefits to learning how to communicate with patients.

Working with people who have developmental challenges, I see often that even nurses don't know how to communicate with people who are different. Though tbf, I recently helped one of the people I support (who is nonverbal) with his hospital stay. The nurses that I had contact with did listen to my explanation of how to communicate with him and did as I explained, so there is some change.
 
I think I need to 'drill down' to what we're saying.

1. There's a link with being ND and poor physical health?
2. Some ND find it hard to voice their concerns to, or even approach, the healthcare professionals. (Note: a long implanted 'guilt'? Disbelief by the professional?)
3. A breakdown of clear communication between patient and doctor puts a real difficulty between them and successful communication.

So is it the physiology of the ND that affects adversely the life expectancy etc. or is it the communication barrier?

Let's not discount the pressures of the general practitioner to deal with all patients with the same general approach. They won't see 'Neuro-divergent' on your case notes and if they were there, most might glance at it.
 
Stormkhan said:
I think I need to 'drill down' to what we're saying.

1. There's a link with being ND and poor physical health?
2. Some ND find it hard to voice their concerns to, or even approach, the healthcare professionals. (Note: a long implanted 'guilt'? Disbelief by the professional?)
3. A breakdown of clear communication between patient and doctor puts a real difficulty between them and successful communication.

So is it the physiology of the ND that affects adversely the life expectancy etc. or is it the communication barrier?

Let's not discount the pressures of the general practitioner to deal with all patients with the same general approach. They won't see 'Neuro-divergent' on your case notes and if they were there, most might glance at it.
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My thought is that it is the communication difficulties that affect the care that ND people receive.

As @Delightful states, she has trouble identifying her own concerns (as well as following through with making the appointment) so that she can discuss them with a doctor. Then the doctor does not know how to communicate in a way that she understands.

If you cannot get your point across well and the other person doesn’t take time to really listen, then you are not getting the help you need.

I do not believe that there is anything physiologically different between ND and NT people.

There are, I believe, many other factors affecting health. Poverty is one. ND people often cannot find employment, or when they do, they have difficulty holding onto jobs. And so are more likely to live in poverty. Research has shown that people living in poverty have poorer health.
 
I think it's likely a mix, from what little I've read and can understand. There are a range of physical aspects that come with ASD (increased likelihood of gut problems, epilepsy, etc), but also there's a huge range of social compounding factors (poor healthcare, bullying and trauma, etc).

I think ASD will make someone more prone to range of health issues in and of itself, but NT society makes it much worse than it should/could be.
 
Delightful said:
I have a range of lifetime issues that are quite vague - headaches, IBS, insomnia, bladder issues, organ discomfort, joint pain, etc etc - which mask other issues and symptoms, again making it far less likely I go to the GP.
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It’s interesting that the Autoimmune Protocol diet that I am looking to start on next week raises a potential link between autism and auto immune disorders.

I don’t know enough to comment on autism but the other symptoms you mention could all have an autoimmune link. It may be worth doing some research to see if there is anything you could take from an AIP diet. (I hope I don’t come across as preaching given I haven’t even started the diet in full)

I must admit I was astounded to see how many illnesses and conditions are a result of an autoimmune response in the body, literally dozens are listed in the book I recently purchased. And there was me thinking it was inflammatory bowel disease and arthritis.
 
Steven said:
'WHAT CAN YOU EAT?
Nothing.

WHAT CAN'T YOU EAT?
Everything. Soz.'

:D
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It’s predominantly meat and vegetables which will suit me.
I bought the AIP cookbook and even the wife is impressed with the variety of recipes.
Don't forget this isn't a diet for people who want to look good on a beach, this is for people with serious health issues.
 
I wasn't really poking fun - it just looked to me as if practically everything enjoyable was off-limits. :(

Don't forget this isn't a diet for people who want to look good on a beach, this is for people with serious health issues.

Yep. I should've remembered that important fact.
 
Steven said:
I wasn't really poking fun - it just looked to me as if practically everything enjoyable was off-limits. :(
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Not if you like steak, bacon, pork chops, chicken.
The diet advocates offal, which I’m ok with, I might make the grandkids some meatballs or burgers with a bit of heart and liver mixed in.
I‘ll tell them after they have swallowed the lot.

But let’s see where I am in six weeks time and whether or not I’ve waved the white flag and gone for pie and mash after a BLT breakfast.
 
Tempest63 said:
I’ve waved the white flag and gone for pie and mash
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Mmmmm Pie n Mash

IMG_0569.jpeg
 
I've found by trial and error over the years that I function better (not perfectly) just eating meat and potatoes, with crisps and apples as my main snack foods.

Seems very similar to this diet.

I'm super-picky with food anyway.
 
Delightful said:
I've found by trial and error over the years that I function better (not perfectly) just eating meat and potatoes, with crisps and apples as my main snack foods.

Seems very similar to this diet.

I'm super-picky with food anyway.
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Historically I have always been better on the food combining (or Hay) diet. No proteins or starches at the same meal. Allow 4 hours minimum between proteins and starches.
 
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