Barriers to good health care for autistic women

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AlienorAspie
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25 May 2015, 6:06 pm

B19 wrote:

-sexism (women are more likely to be discounted, especially with cardiac symptoms)
-ageism (so what, you're old, you're going to die anyway)
-gender based medicine (applying studies based on middleaged men to women of all ages, when this is unsound for many reasons);
-paternalism (we know best, what do you know?)
-patriarchy (enough said- medicine is still contaminated with patriarchal attitudes despite advances - see Heart Sisters)
-autism (I don't display the body language, eye contact, facial expressions and descriptions that NTs do nor in the same styles that NTs do). I relate factually not emotionally and am familiar with medical terminology.
-resentment: how dare I presume to know something about my condition? (Dislike and prejudice against informed patients)
-protection for being sued
-extreme imbalances of power

There is quite a lot of research on gender based differences in cardiac treatment - the men are far more likely to be referred to angiogram, stress testing or cardiac rehab; the women are far more likely to be sent home, with or without a prescription for benziodiapines or SSRIs (mental prescriptions for neurotic "anxious" women..)

Recently a man I know asked a physio at Cardiac rehab "Where are the women?" Answer he got "They die before they ever get referred here".



Nice comprehensive list!

The hysteria situation is beyond ridiculous. The reaction I get when I take a man to the doctor with me is very different to the usual, patronising, "oh god here comes the hypochondriac" one. I did manage to get an ECG to "prove" there is nothing wrong with my heart but I felt fine on the day I got it, annoyingly. The pain is probably to do with nerve pain in my neck/shoulder as I've had a few painful episodes of that recently, so it must have just felt like heart pain before it spread and got worse. When I talk about this stuff I feel like I'm falling apart lol.

I've always had a fascination with childbirth and I cannot imagine myself giving birth in hospital. I just know I would get similar reactions as you have all talked about (I'm so sorry for what you have been through- awful) and friends accounts of how they were treated goes totally against what I could cope with (on their back on a bed, held down screaming and unnecessary interventions). This hospital has performed a forced cesarean on a woman with "mental health problems", after getting a judge to OK it against her wishes, which puts the final nail in the coffin. I will not even be able to look them in the eye. Bastards.

If I can ever get bloody pregnant (! 5 yrs infertility- too sick of the doctors to trust them giving me IVF) I will try everything to keep the labour to myself and have an unassisted birth, using a heart beat monitor intermittently, but I bet my partner will freak out and call a midwife :/ Weirdly I've always wanted to do it that way- I know I could do it naturally and know how my body will react if anyone comes near me. Watching videos of unassisted births and hospital births confirmed that for me :o

It definitely is more about the mental effects of bad care than the physical. I'd be fine if I'd never heard of modern medicine- I'd just get on with it til I died, without all the stress of dealing with those patriarchal systems.



B19
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25 May 2015, 7:44 pm

I found this paper very concerning which addresses the bias against people presenting to doctors for medical assessment when they have had previous mental health issues recorded:

https://meded.duke.edu/practice/wp-cont ... h20071.pdf



AlienorAspie
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26 May 2015, 12:51 pm

This just popped up on my YouTube suggestions - thought it was an interesting account of not being believed by doctors and the mental effects, as well as the Possible physical effects of missed diagnosis.

This girl doesn't identify as autistic, but she has a young voice and certainly talks about her pain/symptoms in poetic, unusual ways, which may be the reasons she gets ignored by the docs. She also seems to be unable to fully advocate for herself when she describes how her "brain told her" not to go up the stairs as a child, rather than crying and saying "Ouch! I Need a doctor now". People thought she seemed fine while she gave up trying to tell them how serious she thought it was. The fact is was a heart/lung condition is serious but irrelevant really- all complaints of pain or weird symptoms should be thoroughly and properly investigated.

She also seems incredibly focused on the fact a doctor finally listened to her talk about her experiences to diagnose her, despite her appearing fairly healthy.

I thought the doctor who talks is ok. She did listen and investigate, but what's with her putting a plastic box over the girl's head in theatre for a whole day?! She was clearly disturbed by this and I can't see any reasonable explanation for them to do that to her!?

https://youtu.be/BjzK-cOCwEg



B19
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26 May 2015, 1:12 pm

What do you think of using something like this worksheet? Can you suggest any improvements to it?

One potential benefit is that if you took 2 copies (IF you had time, IF you were well enough to construct one, IF you had a functioning printer at the time..) you would have a 'document trail' for use later if your symptoms were ignored. However they would possibly say that you never gave it to them (meaning they never bothered to look at it, probably, and filed it in the rubbish bin after humouring you..)

Yet it might be better than nothing, especially if you present there on your own, you aren't good at verbalising/describing symptoms, and you could ask them to read it with you, to save their time and make things clearer (they can only say no, at worst). Then you could say, "Do you have some questions for me arising from this?"

It might at least work to focus their attention on the actual issues. (?)

http://www.whendoctorsdontlisten.com/re ... gnosis.pdf



Amity
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27 May 2015, 4:11 am

My communication difficulties and working memory are usually worse when Im ill, I realised as a teenager that I needed written lists of symptoms/complaints for doctors. Lists are generally well recieved in the public health care system, (it seemed to make their job easier) but generally not welcomed in the private health care sector (it seemed like i was creating extra work for them).

I have had three experiences with different doctors insist that I put my list away, and tell them my symptoms, without looking at my list, like i was faking and had to pass their test to be taken seriously. (I didnt return to them)

Sometimes its not only that I forget about certain symptoms, (which decreases their significance to another) I just dont know how to communicate the urgency of an issue, or at times even gauge how urgent it is myself (also decreasing significance). Before April I had only experienced the private health care system, and as such only went to the GP out of absolute necessity. 'We dont exclude, but our prices do' ....Minimum needed for GP fee and prescription €90.
I didnt go to them for the craic, a concept that bypassed those three muppets.



B19
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31 May 2015, 5:41 pm

Another significant article from the woman who runs the Heart Sisters blog - don't ignore this just because heart disease may not apply to you (it may do, in the future); what she has to say applies much more widely, particularly for anyone who 1) is interested in finding out all they can about any condition they have, and 2) people with rare illnesses or syndromes and 3) everyone else.. fundamentally she is addressing the power imbalance in medical practice and how it affects everyone:

http://myheartsisters.org/2015/05/31/pa ... he-doctor/



B19
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19 May 2017, 8:46 pm

I decided this week to create a blog about this topic, and have set it up today. Hope this link works:

https://healthmattersforaspergerssyndro ... press.com/



B19
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23 May 2017, 6:44 pm

Interesting comment here, in an article that was published by The Atlantic, reflecting barriers to health care in the USA for women, personified by one woman's experience of them; the article also has some intriguing facts: women ED patients are kept waiting significantly longer before receiving pain relief than men, which is consistent with other kinds of discriminatory treatment they receive in ED situations.

(That leaves us with an important and unanswered question: do AS women wait even longer than NT women?? Wouldn't we like to know that...my surmise is that the answer is yes)

The issues in the article below probably reflect a very similiar situation in New Zealand, from what I have experienced and observed.

https://www.theatlantic.com/health/arch ... sm/410515/



Amity
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24 May 2017, 5:04 pm

I must have been in a stinker of a mood when I last posted in this thread!

Nice blog B19 :)
I think that article is a good example of how important it can be to have close relationships, to have someone advocate for you when you are ill and vulnerable. Without her husband to speak for her that lady's situation could have been much worse.



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24 May 2017, 5:19 pm

Hello Amity!! Always good to hear from you and get your feedback. (The blog link worked for you? Great!)