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Autistics Have High Rates of Chronic Health Issues

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ASPartOfMe
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18 Jul 2022, 10:08 am

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According to a recent University of Cambridge study, autistic people are more likely to experience long-term mental and physical health disorders. Additionally, autistic people report that their healthcare is of worse quality than that of others. These discoveries, which were reported in the journal Molecular Autism have profound important implications for the healthcare and support of autistic individuals.

There is a lack of research on the health and healthcare of autistic people over the adult lifespan, despite the fact that several studies show that autistic people are dying far younger than others. Only a few, small studies have compared the healthcare experiences of autistic people to those of other people, despite the fact that some studies have previously revealed that autistic people may face major difficulties in getting healthcare.

The researchers discovered that, across 50 of the survey’s 51 questions, autistic individuals self-reported worse healthcare than the general population. Autistic persons were far less likely to indicate they could express how their symptoms felt in their body, describe how awful their pain felt, explain what their symptoms were, and grasp what their healthcare professional meant when they discussed their health. Autistic persons were also less likely to understand what is expected of them when they see their healthcare professional and to believe they are given sufficient assistance after obtaining any form of diagnosis.

Autistic people were over seven times more likely to report that their senses frequently overwhelm them so that they have trouble focusing on conversations with healthcare professionals. In addition, they were over three times more likely to say they frequently leave their healthcare professional’s office feeling as though they did not receive any help at all. Autistic people were also four times more likely to report experiencing shutdowns or meltdowns due to a common healthcare scenario.

The team then created an overall ‘health inequality score’ and employed novel data analytic methods, including machine learning. Differences in healthcare experiences were stark: the models could predict whether or not a participant was autistic with 72% accuracy based only on their ‘health inequality score’. The study also found worryingly high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions, anorexia, anxiety, ADHD, bipolar disorder, depression, insomnia, OCD, panic disorders, personality disorders, PTSD, SAD, and self-harm.

Professor Sir Simon Baron-Cohen, Director of the ARC and a member of the team, said: “This study is an important step forward in understanding the issues that autistic adults are facing in relation to their health and health care, but much more research is needed. We need more research on long-term outcomes of autistic people and how their health and healthcare can be improved. Clinical service providers need to ask autistic people what they need and then meet these needs.”

The study was funded by the Autism Centre of Excellence, the Rosetrees Trust, the Cambridge and Peterborough NHS Foundation Trust, the Corbin Charitable Trust, the Queen Anne’s Gate Foundation, the Medical Research Council, the Wellcome Trust, and the Innovative Medicines Initiative.


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08 Sep 2022, 3:26 am

Yeah I've tried for 20 years to get help with my issues. I have not gotten any help so I'm not going to ever go again, it's more dangerous for me to go then not to because of the frustration of being dismissed, misbelieved, insulted, abused and mistreated and the stress and then having to pay for appointments when I can't go... It's just very likely to less importantly give me credit problems and more importantly a dangerous meltdown that can lead to suicidal thoughts. Because I have no help and more danger from healthcare then I will also not get help with my mental health and it is very scary to be on your own or dependent on the few friends. I have experienced for myself bad situations in mental healthcare and heard from others so many awful situations where autistic people come for help and then are trapped in mental institutions and basically tortured; unable to leave because they can't mask enough and unable to mask because their surroundings are giving them meltdowns. The amount of abuse in the health industry to autistic people is appalling. It is an awful spiral in any way you look at it. Unless a limb falls off I won't go anymore. I believe doctors are the same to autistic people as police are to black people and in whatever situation its safer for me to stay as far away from doctors as I can.



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08 Sep 2022, 9:05 am

Trachea wrote:
Yeah I've tried for 20 years to get help with my issues. I have not gotten any help so I'm not going to ever go again, it's more dangerous for me to go then not to because of the frustration of being dismissed, misbelieved, insulted, abused and mistreated and the stress and then having to pay for appointments when I can't go... It's just very likely to less importantly give me credit problems and more importantly a dangerous meltdown that can lead to suicidal thoughts. Because I have no help and more danger from healthcare then I will also not get help with my mental health and it is very scary to be on your own or dependent on the few friends. I have experienced for myself bad situations in mental healthcare and heard from others so many awful situations where autistic people come for help and then are trapped in mental institutions and basically tortured; unable to leave because they can't mask enough and unable to mask because their surroundings are giving them meltdowns. The amount of abuse in the health industry to autistic people is appalling. It is an awful spiral in any way you look at it. Unless a limb falls off I won't go anymore. I believe doctors are the same to autistic people as police are to black people and in whatever situation its safer for me to stay as far away from doctors as I can.


Trachea, I read your post and I thought I would pass on one bit of information.
I locked onto one key thought DANGEROUS MELTDOWNS.
Aspies and NT are different in several ways. I am an Aspie and in general, I avoid exercise. Many NTs thrive on exercise. Stress builds up in our body. It builds and builds and builds until it reaches a point where it explodes. It results in a melt down. But NTs generally have a way to vent stress without exploding.

The way the human body removes stress is through exercise. But it is not all exercise. It is a type of exercise that takes your body to an extreme. For example, for me it is running the 50 yard dash at top speed. It only takes a few seconds to do this. If I do this ten times in a row, I remove my stress buildup and prevents a meltdown.

This is why many NTs do not develope dangerous meltdown.


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08 Sep 2022, 9:13 am

Sounds about right, I don't make a fuss even if my condition is bad,and if I do try to express how bad it is I usually get 'the look' as kitlilly says or told its not that bad.



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08 Sep 2022, 11:56 am

jimmy m wrote:
Trachea wrote:
Yeah I've tried for 20 years to get help with my issues. I have not gotten any help so I'm not going to ever go again, it's more dangerous for me to go then not to because of the frustration of being dismissed, misbelieved, insulted, abused and mistreated and the stress and then having to pay for appointments when I can't go... It's just very likely to less importantly give me credit problems and more importantly a dangerous meltdown that can lead to suicidal thoughts. Because I have no help and more danger from healthcare then I will also not get help with my mental health and it is very scary to be on your own or dependent on the few friends. I have experienced for myself bad situations in mental healthcare and heard from others so many awful situations where autistic people come for help and then are trapped in mental institutions and basically tortured; unable to leave because they can't mask enough and unable to mask because their surroundings are giving them meltdowns. The amount of abuse in the health industry to autistic people is appalling. It is an awful spiral in any way you look at it. Unless a limb falls off I won't go anymore. I believe doctors are the same to autistic people as police are to black people and in whatever situation its safer for me to stay as far away from doctors as I can.


Trachea, I read your post and I thought I would pass on one bit of information.
I locked onto one key thought DANGEROUS MELTDOWNS.
Aspies and NT are different in several ways. I am an Aspie and in general, I avoid exercise. Many NTs thrive on exercise. Stress builds up in our body. It builds and builds and builds until it reaches a point where it explodes. It results in a melt down. But NTs generally have a way to vent stress without exploding.

The way the human body removes stress is through exercise. But it is not all exercise. It is a type of exercise that takes your body to an extreme. For example, for me it is running the 50 yard dash at top speed. It only takes a few seconds to do this. If I do this ten times in a row, I remove my stress buildup and prevents a meltdown.

This is why many NTs do not develope dangerous meltdown.


Thanks Jimmy. I do go for a run when I am having a meltdown for many hours sometimes but it can also feel distressing and give more symptoms because if it is loud or bright out. So quite often if I can't go then I have boxing gloves and hit the mattress. I try to go for a walk at least everyday or every other day but I always cant because I'm sensitive. I also have a hard time with exercise although I do like some of it like dancing and yoga but sweat is difficult to handle. Also I have structural back problems so movements are difficult to do right without hurting.

Also easily I can slip into over-exertion, like I said run or walk for hours or just exercise too hard without noticing it, and then worsen my situation by becoming too tired or wired and hurt and not be able to sleep. I have lots of problems with sleep but this year has been better than last year! (I'm still in recovery from burnout)



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10 Sep 2022, 10:24 am

So autistics aren't "more likely" to get physical conditions than the general population, we're just less likely to receive the proper treatment due to the reasons stated in the OP. The title of the study is more scaremongering than the actual truth itself.


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11 Sep 2022, 12:58 am

Joe90 wrote:
So autistics aren't "more likely" to get physical conditions than the general population, we're just less likely to receive the proper treatment due to the reasons stated in the OP. The title of the study is more scaremongering than the actual truth itself.

The article says, "The study also found worryingly high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions..." So autistics do have higher rates of medical problems. They also have trouble getting medical care.



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19 Sep 2022, 9:34 am

Autism diagnosis in adulthood tied to increased burden of psychiatric conditions

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People diagnosed with autism in adulthood are nearly three times as likely as their childhood-diagnosed counterparts to report having psychiatric conditions, a new study finds.

“Experiences of childhood- versus adulthood-diagnosed people are likely to be quite different,” says lead investigator Vanessa Bal, Karmazin and Lillard Chair in Adult Autism at Rutgers University in Piscataway, New Jersey. Generalizing findings from one group to the other “is going to have serious implications for research.”

The substantial differences between these groups suggest “studies reporting outcomes for adults with autism are now incomplete in their conclusions if we do not know when the diagnosis was made,” says Eric Butter, chief of the psychology section at Nationwide Children’s in Columbus, Ohio, and director of the hospital’s Child Development Center. Butter was not involved in the study.

Increasingly, studies of autistic adults involve people identified later in life, in part because of expanded diagnostic criteria for the condition and online surveys that make it easy for participants who live far from the researchers to join in. But little is known about how these adults compare with those identified as autistic earlier in life.

The new study drew on data from 4,657 legally independent autistic adults — including 2,826 women — from the Simons Powering Autism Research Knowledge (SPARK) project. (SPARK is funded by the Simons Foundation, Spectrum’s parent organization.)

The 2,210 participants diagnosed with autism at age 21 or older were 2.7 times more likely to report co-occurring mood, anxiety, personality or eating disorders than those identified with autism in childhood, the researchers found. Adulthood-diagnosed people also reported more lifetime psychiatric conditions: an average of 3.2, versus 2.8 in their childhood-diagnosed peers.

“We don’t know if this is due to their being misdiagnosed with other conditions, or whether those diagnoses — for example, anxiety, depression — may be the effects of living without a proper autism diagnosis throughout childhood, adolescence and beyond,” Bal says. “Probably both are factors.”

The findings suggest diagnostic tools and processes need improvement to enable earlier diagnoses for autistic people with co-occurring mental health conditions, says Micah Mazurek, Novartis U.S. Foundation Professor of Education at the University of Virginia at Charlottesville, who was not involved in the work..

“When children or adolescents don’t receive a timely diagnosis, they miss opportunities for appropriate services and supports that are tailored to their unique needs,” Mazurek says. “They also miss out on opportunities to build self-understanding and connections within the autism community, placing them at greater risk for negative mental health outcomes.”

The results, published 29 August in Autism Research underscore “the mental health crisis facing autistic adults,” Bal says. More autism training is needed for all mental health fields at all levels — and not just in pediatric care, but in adult care too, she notes.


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19 Sep 2022, 11:25 am

Pteranomom wrote:
Joe90 wrote:
So autistics aren't "more likely" to get physical conditions than the general population, we're just less likely to receive the proper treatment due to the reasons stated in the OP. The title of the study is more scaremongering than the actual truth itself.

The article says, "The study also found worryingly high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions..." So autistics do have higher rates of medical problems. They also have trouble getting medical care.
Seems very obvious to me. Mental & psyical issues are often linked toether in various ways. Us autistcs tend to have different lifestyle habits, different dietary habits, can be physically bulied growing up, take various psych meds to better deal with our mental issues that can have phsyical side-effects, problems with employment wich may lead to us doing harder phsyical labor in hazerdious working conditions, problems with income & getting along with others which may lead to us living/staying in places that are hazerdious to our physical health. Etc etc...


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19 Sep 2022, 3:20 pm

Am thinking and from my experience it is better for Autists to see a good Naturopathic doctor ..been through that entire , mess of MDs that are not even aware of physiological difference between NTs and Auties. Most overlap but
Auties nervous response is generally higher as a 1 st thing . And Auties want to know, we don’t just take drugs
On demand .( usually) . I hope . This is were Google can help research.
Naturopathic doctors tend to almost always treat the body Holistically .(As in treating what causing the issue).
To the best of my knowledge . A Good ND will try to keep you healthy .
And of course if your having broken parts , a MD might set the bone you still need a Orthopedic Doc .
Now days there are much better pathways to better health than Allopathic medicine ever thought of .


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20 Sep 2022, 12:10 pm

nick007 wrote:
Pteranomom wrote:
Joe90 wrote:
So autistics aren't "more likely" to get physical conditions than the general population, we're just less likely to receive the proper treatment due to the reasons stated in the OP. The title of the study is more scaremongering than the actual truth itself.

The article says, "The study also found worryingly high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions..." So autistics do have higher rates of medical problems. They also have trouble getting medical care.
Seems very obvious to me. Mental & psyical issues are often linked toether in various ways. Us autistcs tend to have different lifestyle habits, different dietary habits, can be physically bulied growing up, take various psych meds to better deal with our mental issues that can have phsyical side-effects, problems with employment wich may lead to us doing harder phsyical labor in hazerdious working conditions, problems with income & getting along with others which may lead to us living/staying in places that are hazerdious to our physical health. Etc etc...


Yes but that's not exactly the same as actually being born with a physical health disease along with autism. Most autistic people have a normal-functioning body but the environmental factors you listed are the cause of physical health conditions.
For example people with downs syndrome are usually born with physical conditions which are additional symptoms of downs syndrome.


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20 Sep 2022, 12:39 pm

Joe90 wrote:
nick007 wrote:
Pteranomom wrote:
Joe90 wrote:
So autistics aren't "more likely" to get physical conditions than the general population, we're just less likely to receive the proper treatment due to the reasons stated in the OP. The title of the study is more scaremongering than the actual truth itself.

The article says, "The study also found worryingly high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions..." So autistics do have higher rates of medical problems. They also have trouble getting medical care.
Seems very obvious to me. Mental & psyical issues are often linked toether in various ways. Us autistcs tend to have different lifestyle habits, different dietary habits, can be physically bulied growing up, take various psych meds to better deal with our mental issues that can have phsyical side-effects, problems with employment wich may lead to us doing harder phsyical labor in hazerdious working conditions, problems with income & getting along with others which may lead to us living/staying in places that are hazerdious to our physical health. Etc etc...


Yes but that's not exactly the same as actually being born with a physical health disease along with autism. Most autistic people have a normal-functioning body but the environmental factors you listed are the cause of physical health conditions.
For example people with downs syndrome are usually born with physical conditions which are additional symptoms of downs syndrome.


Autism is almost always the result of a genetic mutation or genetic predisposition. When a gene or genes is affected it causes many differences for the person, not just ASD. There are at least 70 known congenital health conditions associated with my affected gene, including ADHD, blood disorders, and heart deformities. Not all people with this gene have all 70 issues and some may not even have ASD. I seem to have hit the jackpot having more than half of everything on the list, as did my parents and as does my daughter.

Add this to the fact we have difficulties with self-advocacy, interceptive awareness, and poor access to medical care for financial reasons, and those problems will fester.

As it is I was nearly turned away from the hospital following my major stroke because the attending physician claimed I was a drunk (I didn’t “stroke” the way a neurotypical person would).


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20 Sep 2022, 12:42 pm

Joe90 wrote:
So autistics aren't "more likely" to get physical conditions than the general population, we're just less likely to receive the proper treatment due to the reasons stated in the OP. The title of the study is more scaremongering than the actual truth itself.


It sounds like it's both. You're describing the second sentence.

Quote:
According to a recent University of Cambridge study, autistic people are more likely to experience long-term mental and physical health disorders. Additionally, autistic people report that their healthcare is of worse quality than that of others.


We're more likely to have issues and we're also less likely to get adequate and appropriate care.


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20 Sep 2022, 2:18 pm

So I should really go for a full physical check because I have a slightly different neurological wiring so it means I could have life-threatening illnesses without even knowing it? I could drop dead from a heart attack or stroke tomorrow, because of Asperger's.


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20 Sep 2022, 2:44 pm

Joe90 wrote:
So I should really go for a full physical check because I have a slightly different neurological wiring so it means I could have life-threatening illnesses without even knowing it? I could drop dead from a heart attack or stroke tomorrow, because of Asperger's.


No, that's an overly severe interpretation.

If nothing's ever been detected there's a good change that there's nothing to be worried about. That said, the overlap between people with autism and people with chronic health issues is increased compared to people with chronic health issues in the general population.

This overlap is significantly (but not fully) explained by some of the genetic mutations known to be connected to autism.
It's fair to believe currently unknown or not previously seen mutations that have yet to be associated with autism (but are) might have a similar tendency to cause health issues.

There's likely more to it than just genetics, the stress of being autistic in an unaccommodating world almost certainly contributes. The stress autism causes that can't be accommodated for by society also certainly contributes.


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20 Sep 2022, 3:54 pm

Sometimes just maybe Autistics health becomes delicate from constantly dealing with too much input .
And in order to keep up , maybe we have to use our adrenal reserves to try to maintain yourself . Especially in Public situations . So there goes all your spoons , And if you want to live in a NT world , Might leave you in negative spoon territory . Little Energy left for a body to maintain its own immune system ? :roll: .
( merely a representation of my own experiences)

[And No this is not intended as a Advert for Redbull,giving people Wings] 8O :)


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