Barriers to good health care for autistic women

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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

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

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.

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/

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/

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/

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.

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

My barrier is probably myself as I tend to let things go and not bother with something. I'm often too shy to make regular doctors appointments too as lame as that sounds. And when I do go I barely breathe out a word, I feel like anything I say will be considered invalid.

Pictures that speak thousands of words..

https://thenib.com/medicine-s-women-problem

I always find it incredulous that health care providers miss thyroid problems so frequently. It's a common problem with an easy test and relatively easy treatment.

I've always been very content with my current doctor, though previous doctors, I'm not even sure why some of them are in medicine. It's as if some of them thought I was spending my time and money just to tell them I didn't feel well. It should be taught in medical school, that when a patient walks into a doctor's office, they are doing so because they are 1. Feeling unwell. 2. Are feeling unwell to the point that it's impacting their lives. 3. Want to know what is causing them to feel unwell. and 4. Want the doctor to cure them.

Article by Cynthia Kim posted by the Autistic Women's Network:
https://autismwomensnetwork.org/autisti ... -it-right/
Interesting comments too.

One blog I follow is called Heart Sisters - for women who have experienced difficulty in getting correct diagnosis and care for any cardiac issues. For anyone in that particular situation, I heartily recommend it; here's the latest post on it:

https://myheartsisters.org/2017/09/10/i ... diagnosis/

I was reading this recently
http://doctorslounge.com/cardiology/dia ... /chest.htm

I found point 111 interesting. I think most Dr's start at point 111 when dealing with women, especially women on the spectrum, and work back from there

Carolyn, the blogger at Heart Sisters would agree with you, as would I. She has widely collected women's experience after presenting at ED rooms with chest pain - and they were simply misdiagnosed, (the exclusion process wasn't followed. Most were told they were "just anxious" or "just had indigestion"..) Few seem to have been diagnosed on their first presentation with cardiac symptoms, and repeat presentations were not much better, it was usually only once the missed diagnosis women went on to have a heart attack that they were finally correctly diagnosed. The gender bias put lives at risk in a dangerous way.

Thank you for that useful addition.

https://myheartsisters.org/2017/09/17/h ... inorities/