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Hospitals, autism, gender, and risk

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ASPartOfMe
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25 Jul 2019, 3:41 am

The Spectrum

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Adults with autism are nearly 50 percent more likely to die in the hospital than their neurotypical peers, according to the first analysis of these patterns, based on discharge records from hospitals in the United States1.

The risk is even greater for autistic women; they are more than three times as likely as typical women to die in the hospital.

Several studies have shown that people with autism are more than twice as likely as their typical peers to die prematurely. Autistic adults are also at increased risk of health conditions such as diabetes and depression. The new study extends these findings to hospital settings.

Hospital records include valuable information, such as the circumstances under which a person was admitted to the hospital and the health conditions she may have been facing at the time of death, says lead researcher Ilhom Akobirshoev, research scientist at the Lurie Institute for Disability Policy at Brandeis University in Waltham, Massachusetts.

The new study also highlights the co-occurring conditions most likely to increase an autistic person’s risk of death in a hospital.

These high death rates may be due to the poor care autistic people tend to receive at hospitals, says Lauren Bishop, assistant professor of social work at the University of Wisconsin-Madison, who was not involved in the study.

“In-hospital mortality can be a measure of care quality or it can be a measure of care complexity,” that is, how hard it is to treat a particular person’s mix of conditions, Bishop says. The researchers controlled for co-occurring conditions, so the new findings indicate that, regardless of the specific conditions involved, “autistic adults are receiving lower-quality care in hospital settings, which may be leading to their mortality,” she says.

The researchers analyzed a large set of discharge records, which are part of the Healthcare Cost and Utilization Project Nationwide Inpatient Sample, for the years 2004 to 2014. The researchers compared the records of 34,237 autistic people with those of 102,711 controls.

Their analysis showed that adults with autism are 1.44 times as likely to die in the hospital as are those in the general population.

“We [found] unique differences within the autism population,” says Akobirshoev. “There’s these huge within-group differences; to me, it was striking.”

Women overall are less likely than men to die in the hospital, but autistic women are almost twice as likely as autistic men to die in the hospital, and more than three times as likely as typical women.

Because autism is often overlooked in women, Bishop says, the women who have a diagnosis tend to be more severely affected than autistic men. The severity may contribute to their high rates of death, she says.

A host of co-occurring conditions increase autistic individuals’ risk of dying in a hospital, the researchers found.

Autistic adults with certain neurological conditions, such as multiple sclerosis or Huntington’s disease, for instance, are more than five times as likely as typical adults with these conditions to die while in the hospital; autistic adults with psychoses have nearly seven times the typical risk of death and those with hyperthyroidism more than fourfold the risk.

However, although previous work shows that having epilepsy increases an autistic individual’s risk of dying prematurely, the new study did not find a link between epilepsy and death in the hospital. Researchers reported the results 12 June in Autism.

One shortcoming of the study is that hospital records may be incomplete, so the risk results for specific conditions should be considered preliminary, the researchers say.

In particular, hospital death records may omit contributing factors from the weeks, months and years before a person was admitted and died, says Monika Mitra, director of the Lurie Institute for Disability Policy in Waltham, Massachusetts who also worked on the study. By following individuals over time, she says, the researchers might be able to identify some of these factors.


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25 Jul 2019, 7:27 am

Well that's scary

I wonder if this putting off going to the hospital part of it would be reduced if hospitals weren't so ridiculously brightly lit and if someone's routine could be incorporated into their recovery, as much as possible


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TheOther
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25 Jul 2019, 8:25 am

I have a few ideas:

1. People with autism come off as strange, so nurses and caretakers might avoid them to avoid the awkward interaction, and keep care taking to the minimum.

2. People with autism have a hard time making connections with others, and that lack of a connection might end up with interactions between autistic patients and caretakers being more brief and formal, leaving less time for caretakers to notice any medical oddities.

3. Autistic people might have more difficulty understanding and applying the instructions they get from caretakers, resulting in less consistent and effective self-care measures.

4. A poor sense of self awareness might make autistic people less likely to inform medical staff of any problems they have, or even less likely to notice something has gone awry to begin with.



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25 Jul 2019, 8:36 am

Sensitivity to medications. A nurse disregarded my concerns and put me on a morphine drip overnight. Bad news. Then when the overdose symptoms started she made me out to the be the bad guy. Thankfully the shift changed and a good nurse came in and calmed me down. She put on my record that I'm allergic to morphine, which isn't quite true, but better than overdose. The nurse told me to let everybody know that I "metabolize" medications differently. I had previously figured out on my own to let anesthesiologists know I'm sensitive (after so much vomiting and headaches).

"Lack" of self advocacy. Once I was unknowingly dying from an internal hemorrhage but when asked repeatedly said I felt fine (because my vomiting from the pain meds had stopped). The doctors couldn't figure out why my vitals were briefly plummeting then bouncing back up... apparently other hemorrhage patients don't bounce back like I did, and they don't say they are fine? Anyhow, the dr called in a surgeon to be on the safe side so when I stopped "bouncing" they were ready (and saved my life … obviously).

Plus the whole high pain threshold thing for me...



ASPartOfMe
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25 Jul 2019, 9:31 am

TheOther wrote:
I have a few ideas:

1. People with autism come off as strange, so nurses and caretakers might avoid them to avoid the awkward interaction, and keep care taking to the minimum.

2. People with autism have a hard time making connections with others, and that lack of a connection might end up with interactions between autistic patients and caretakers being more brief and formal, leaving less time for caretakers to notice any medical oddities.

3. Autistic people might have more difficulty understanding and applying the instructions they get from caretakers, resulting in less consistent and effective self-care measures.

4. A poor sense of self awareness might make autistic people less likely to inform medical staff of any problems they have, or even less likely to notice something has gone awry to begin with.

As far as number 1 goes a lot of patients in the hospital are strange and difficult to deal because they are drunk, stoned, psychotic, and just feeling very lousy. As far as number 3 goes autistic patients are not any less intelligent than NT patients. What may make it harder for autistic patients to follow instructions are sensory sensitivities a lot of light and noise and people touching you, inserting things in you, interrupting you to do these things. Being in the hospital is both a massive change in routine and often demands multitasking and answers from you ASAP.

I advise you to enter in your device while you are feeling good a list of your pre existing medical conditions and medications and store it so it is easily available to show medical staff. I have been complimented by doctors a number of times for doing this and probably treated better because of this. I also advise you to store in your device readily available materials about your special interest for in between interruptions soothing. I have posted to WP from the ER and my hospital bed.

SharonB wrote:
Sensitivity to medications

This is the thing that scared me most when I knew I needed major surgery. Our autistic brains are different so it seems to make sense our brains would react differently to medications. There has been little to no research into this area(also research into how women react to medications). I am glad to report nothing untoward happened but this still worries me.


Another potential problem is lack of friend or family support and advocacy. We often do not have a network of advocates or any advocates readily available to us in a moment of crises. An advocate can give the medical staff necessary information when we are unable to do so. Also medical staff will often treat you better if they know someone is watching out for you.

Mistreatment and mistakes are often are not the result of sadism or sociopathy but a result of overwork and being slaves to the insurance systems. So many patients, so little time, so much time on paperwork, 12 hour shifts at odd hours with no meal or pee breaks etc etc. This is why I advised earlier to have when possible information readily avalible.


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25 Jul 2019, 3:27 pm

It's because a lot of people on the spectrum put all their ailments down to a physical correlation to their ASD, instead of just admitting that their ailments are likely to have nothing to do with their ASD.

"I keep getting migraines - but it is common in autism"

"This big lump on my leg must be due to having autism"

"This numbness in my fingers must be an autism thing"

The answer is put your autism to one side for a damn moment and go to see the doctor before it's too late.


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martianprincess
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25 Jul 2019, 6:48 pm

I think we'll need to come back to this study in 20 to 30 years and re-evaluate the data. It'll be interesting to see what happens when the wave of kids that were diagnosed in the past several years become adults and maybe some quality studies will come out.

Studying hospital records is also kind of iffy - medical records are so disorganized and disjointed, usually missing a lot of information and don't tell the whole story. And if you have ASD and you end up in an emergency room of a hospital you've never been to, how much medical history are they really going to get (unless they somehow use the same electronic health records system, which is unlikely).

Anyway, that was kind of addressed in the article, but I think this study says that highly-affected adults with ASD that had other high-risk medical conditions were more likely to die... I have a few guesses as to why that could be, but it's not too surprising.


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27 Jul 2019, 11:29 am

To make a long story short, I live 2 blocks from a small hospital, and I had a simple fracture of my thumb. I'm in Canada, with the usual Medicare. I also have a sleep disorder that affects my ability to keep appointments, so I have to be a bit fussy about bookings, which I explain up front.
The various medical people did help by diagnosing a fracture, and by providing some physiotherapy, but in between, they never even set the bone, and they destroyed my health with demands to visit distant specialists. I'm lucky I didn't get in another accident. Everyone got paid, of course, while I had to cover the transportation.

My AS mother's greatest fear was being stuck in a geriatric hospital with long visiting hours, and mine is similar.



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27 Jul 2019, 11:41 am

TheOther wrote:
I have a few ideas:

1. People with autism come off as strange, so nurses and caretakers might avoid them to avoid the awkward interaction, and keep care taking to the minimum.

2. People with autism have a hard time making connections with others, and that lack of a connection might end up with interactions between autistic patients and caretakers being more brief and formal, leaving less time for caretakers to notice any medical oddities.

3. Autistic people might have more difficulty understanding and applying the instructions they get from caretakers, resulting in less consistent and effective self-care measures.

4. A poor sense of self awareness might make autistic people less likely to inform medical staff of any problems they have, or even less likely to notice something has gone awry to begin with.


Articulation might also be an issue too and troubles judging their own pain and how bad it is.


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27 Jul 2019, 11:43 am

Joe90 wrote:
It's because a lot of people on the spectrum put all their ailments down to a physical correlation to their ASD, instead of just admitting that their ailments are likely to have nothing to do with their ASD.

"I keep getting migraines - but it is common in autism"

"This big lump on my leg must be due to having autism"

"This numbness in my fingers must be an autism thing"

The answer is put your autism to one side for a damn moment and go to see the doctor before it's too late.


Took me 4 months to finally go to a damn doctor for muffled hearing in my right ear and always having pressure in there like I am in the mountains or up in the air and having tinnitus. :roll:

It's hard for me to judge when I should go to the doctor and how long I shall wait before going.


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blackbaron1412
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27 Jul 2019, 6:47 pm

League_Girl wrote:
Articulation might also be an issue too and troubles judging their own pain and how bad it is.


This is true, these studies might be touching on something but we should always be careful in how we interpret them. A lot of factors that are not controlled for may have influenced the data. For example, the physiology of autistic people could be different in ways that would make them more prone to disease.



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27 Jul 2019, 7:18 pm

Joe90 wrote:
It's because a lot of people on the spectrum put all their ailments down to a physical correlation to their ASD, instead of just admitting that their ailments are likely to have nothing to do with their ASD.

"I keep getting migraines - but it is common in autism"

"This big lump on my leg must be due to having autism"

"This numbness in my fingers must be an autism thing"

The answer is put your autism to one side for a damn moment and go to see the doctor before it's too late.


I got this all the time as a kid. I have a possibly birth injury that was never even looked into because "she's just extra sensitive because of the autism". I would litteraly BEG my mother to stop telling new doctors I was autistic for that reason.


League_Girl wrote:
TheOther wrote:
I have a few ideas:

1. People with autism come off as strange, so nurses and caretakers might avoid them to avoid the awkward interaction, and keep care taking to the minimum.

2. People with autism have a hard time making connections with others, and that lack of a connection might end up with interactions between autistic patients and caretakers being more brief and formal, leaving less time for caretakers to notice any medical oddities.

3. Autistic people might have more difficulty understanding and applying the instructions they get from caretakers, resulting in less consistent and effective self-care measures.

4. A poor sense of self awareness might make autistic people less likely to inform medical staff of any problems they have, or even less likely to notice something has gone awry to begin with.


Articulation might also be an issue too and troubles judging their own pain and how bad it is.


This too was and still is a problem.


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28 Jul 2019, 11:09 pm

In my case, I'm just particularly gifted in doing things which require a visit to the emergency room.


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31 Jul 2019, 6:41 pm

ASPartOfMe wrote:
The Spectrum
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Adults with autism are nearly 50 percent more likely to die in the hospital than their neurotypical peers, according to the first analysis of these patterns, based on discharge records from hospitals in the United States1.

The risk is even greater for autistic women; they are more than three times as likely as typical women to die in the hospital.

Several studies have shown that people with autism are more than twice as likely as their typical peers to die prematurely. Autistic adults are also at increased risk of health conditions such as diabetes and depression. The new study extends these findings to hospital settings.

Hospital records include valuable information, such as the circumstances under which a person was admitted to the hospital and the health conditions she may have been facing at the time of death, says lead researcher Ilhom Akobirshoev, research scientist at the Lurie Institute for Disability Policy at Brandeis University in Waltham, Massachusetts.

The new study also highlights the co-occurring conditions most likely to increase an autistic person’s risk of death in a hospital.

These high death rates may be due to the poor care autistic people tend to receive at hospitals, says Lauren Bishop, assistant professor of social work at the University of Wisconsin-Madison, who was not involved in the study.

“In-hospital mortality can be a measure of care quality or it can be a measure of care complexity,” that is, how hard it is to treat a particular person’s mix of conditions, Bishop says. The researchers controlled for co-occurring conditions, so the new findings indicate that, regardless of the specific conditions involved, “autistic adults are receiving lower-quality care in hospital settings, which may be leading to their mortality,” she says.

The researchers analyzed a large set of discharge records, which are part of the Healthcare Cost and Utilization Project Nationwide Inpatient Sample, for the years 2004 to 2014. The researchers compared the records of 34,237 autistic people with those of 102,711 controls.

Their analysis showed that adults with autism are 1.44 times as likely to die in the hospital as are those in the general population.

“We [found] unique differences within the autism population,” says Akobirshoev. “There’s these huge within-group differences; to me, it was striking.”

Women overall are less likely than men to die in the hospital, but autistic women are almost twice as likely as autistic men to die in the hospital, and more than three times as likely as typical women.

Because autism is often overlooked in women, Bishop says, the women who have a diagnosis tend to be more severely affected than autistic men. The severity may contribute to their high rates of death, she says.

A host of co-occurring conditions increase autistic individuals’ risk of dying in a hospital, the researchers found.

Autistic adults with certain neurological conditions, such as multiple sclerosis or Huntington’s disease, for instance, are more than five times as likely as typical adults with these conditions to die while in the hospital; autistic adults with psychoses have nearly seven times the typical risk of death and those with hyperthyroidism more than fourfold the risk.

However, although previous work shows that having epilepsy increases an autistic individual’s risk of dying prematurely, the new study did not find a link between epilepsy and death in the hospital. Researchers reported the results 12 June in Autism.

One shortcoming of the study is that hospital records may be incomplete, so the risk results for specific conditions should be considered preliminary, the researchers say.

In particular, hospital death records may omit contributing factors from the weeks, months and years before a person was admitted and died, says Monika Mitra, director of the Lurie Institute for Disability Policy in Waltham, Massachusetts who also worked on the study. By following individuals over time, she says, the researchers might be able to identify some of these factors.
Wow!


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