Barriers to good health care for autistic women

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Thanks for this thread, B19.

Most every woman I know (and some men too!) has some negative stories to tell about the doctors office, ASD or not! The stories in this thread are unfortunately very familiar to ones I've heard and experienced already! It would take too long for me to list all of the stories I know, but I'd like to answer a couple of your questions as best I can.

1) what are the problems with an initial encounter when you present with symptoms? AND 2) if there are misunderstandings, do you think these led to misdiagnosis or missed diagnosis? How did that occur? What were the consequences for you?

To me, here in the United States, the initial encounter is defined negatively by two things, mainly.

First, the insurance companies seem to be allowed to dictate how much time a physician is allowed to spend with a patient, and the patient rarely has time to explain the problem thoroughly. Older patients in particular have a longer history, and need more time to talk to the doctor.

Second, this all tends to be compounded by the problem that doctors are always retiring, moving, etcetera, and records are eternally disappearing; or else the doctor hasn't actually read the records before the appointment, and so patients are continuous strangers to their doctors. It would be very nice if there was developed a way for patients records to be accessible through their whole lives, doctors office to doctors office, and it wasn't left up to each practice to store a patients records.

3) what have you found to do that 'worked' - that bypassed these initial miscommunications and bad outcomes arising from them, what are the most effective ways to self-advocate for your symptoms?

Well, I haven't found anything yet, but I do have one idea that seems like it would be pretty simple for doctors offices to implement. I'm middle age, and some of my medical issues are chronic.

What that means is that I've already tried a lot of things.

If doctors offices would just ask, "What have you already tried?" I think that a lot of patients would avoid getting caught in this never ending loop of trying the same ideas, repeatedly.

For example, I experience chronic muscle pain. I spent 30 years going from doctor to doctor, and for 30 years was repeatedly told that exercise, and or physical therapy would improve my pain. I complied every time, and every time it made my pain worse. The same was true for the chiropractor. After the first time, I was told by a different doctor to try again. So I did.

It is unproductive to keep repeatedly trying the same ideas for the sake of a new doctor who doesn't know that you've already tried it because your records didn't follow you, and they didn't have time to ask you what you've already tried, thanks to the insurance company rules.

(My muscle pain finally has started to improve due to a diet change, which I want to say a doctor did partly recommend, I think maybe based upon my autism diagnosis. So sometimes they do get things right, and maybe if I had been diagnosed earlier, I would have gotten better advice earlier. What annoys me a little is that I spent 2 years going to a psychiatrist and a therapist because of muscle pain, and so they had to know me fairly well. But I didn't get the autism diagnosis from them. That didn't happen until maybe a year later, when I made an appointment with a psychologist and specifically asked for an evaluation for autism; which I only did because a counselor noticed that I don't like being lied to, and said I must be autistic.)

Thank you for your interesting contribution. I can certainly relate to your experience of being given the same useless advice as if my experience of it being totally unhelpful was of no account.

This kind of medical disregard over a long period makes us begin to doubt our own perceptions and reality. It is a form of psychological harm, of which the perpetrators are unaware and often we too are unaware of. Medicine and medical care is always more than a purely physical thing, as bodies act as whole, not as separate parts, and that includes the mind, brain, emotions and memories of the patient.

And though many women know only too well how and when this cycle of invalidation happens, they are less aware of how to resolve it and how to heal from past invalidations. So I hope this thread contributes to some kind of healing as well as a collective point for individual experiences.

https://mountainx.com/living/gender-bia ... l-experts/

That's a good article, thank you, B19.

I had heard of the lack of research/studies which included women, and knew that it could affect health care. Imagine if all of the medical studies only included female subjects! Men would figure out pretty quick that this wasn't going to apply always to them, and their bodies.

You're right on target about the self doubt. I've heard women say that, repeatedly, and felt it plenty myself. And I agree that the mind can have an effect on physical health. Good point!

I think this article belongs in this thread, and is important, because gaslighting of AS women by medical personnel is one of the core issues in the barriers to good health care for us, and something which I believe is a very commonly experienced:

https://annsautism.blogspot.co.nz/2015/ ... hting.html

^ Thank you for that - it describes how I was treated for 40 years, until my autism diagnosis. (Since then, it's been better, and my current doctor understands that I struggle with stress-related physical symptoms.)

Hopefully in time, doctors will become more educated on this issue.

I think the only education will have to come from us, and in this I am somewhat expired by the woman who created the Heart Sisters blog. She went on to give presentations to medical audiences (and still does). However AFAIK, she is not on the spectrum, and public speaking is not an AS forte (it's certainly not mine), though if some of us can pair up with partners in the NT medical world who are fully sympathetic (they are rare, though they exist) some progress could be made I surmise. Meantime we have to work out how to challenge gaslighting when it happens to us personally; how to respond from a position of empowerment rather than disempowerment. I know that when gaslighting happens, there is an instant kind of "inner collapse" that happens to us, that's our default response; I understand that. However we have to work out and learn effective ways to follow up as best we can.

https://myheartsisters.org/2011/11/25/gaslighting/

http://www.misstreated.org/blog/2015/11 ... sare-wrong

Updated my "health matters for AS women" blog today:

https://wordpress.com/post/healthmatter ... ss.com/444

https://intersectionalneurodiversity.wo ... autistics/

I found this article very interesting. If the shutting off of discourse between NTs and AS people in social settings by NTs is factual (it seems valid to me), and most doctors - say 98% in ED and general practice are NT's, then how does it affect medical encounters in ED and General Practice?

It's another barrier which I haven't blogged about or discussed here previously (work in progress).

I am also going to contact the researchers and ask them for their thoughts on how it may impact on health encounters, which are a special form of social encounter.

I'm certain it works against us in health care settings. I'm pretty phobic about Dr's because I seem to unwittingly bring out the worst in them. I've been bullied, harassed, dismissed and one even sexually assaulted me when I was a teenager. I think my lack of eye contact and general odd behaviour draws attention and marks me out in the same way an injured baby wildebeest trailing behind the herd will be noticed by a predator.
I think I am viewed by most Dr's as weak and they feel that excuses their poor treatment of me. Why should they treat me with respect when I'm so obviously beneath them.

I’ve experienced many instances of being lied to, ignored, talked over, and not believed.
I’ve found two things that have helped although it may only be useful in the United States.

First, the nurse can often help you much more effectively than the doctor. I’ve had horrid nurses often enough but when you find one you can work with ...they do appreciate it when you realize and treat them as the ultimate weapon that can be used to get what you need. Nurses in my area at least are very knowledgeable and most doctors will listen to them. The doctor recommmended a certain pain medicine. I said I thought I had tried that and it was useless for me. I asked if he could check my record and he said no since it wasn’t the same health network. Nurse was able to see it all and confirm that I had indeeed had that med when I thought I had.

Second , you have the right to say “no”. No, I won’t take that medicine. No, I will not have that test. You should never be rude or angry, then you will get the worst treatment guaranteed, but you can refuse politely and find out alternatives. There are often several.

This article will be particularly of interest to women with auto-immune conditions:

http://www.latimes.com/opinion/op-ed/la ... story.html

My own experience (being coeliac, which is one of the many auto immune conditions) was much as the writer describes. The discounting of women in medical situations is still very much an issue as a barrier to good health care.

I wish there was some good research on AS women and their medical experiences, with a sound design and methodology. However as far as I know, there isn't, most of it the commentary is descriptive and anecdotal - though it rings very true to me.

What I'll be reading soon:

https://www.marketwatch.com/story/one-s ... 2018-03-15

If it's like this for young NT women, how much harder is it for AS young women? I have to add that it doesn't get easier as you get older re doctors believing you if you are a woman.


..

On another topic, I would appreciate women members telling me their stories about HOW LONG it took to get an accurate diagnosis after first seeking one for any chronic, autoimmune or other condition, as I am interested in looking into average times it takes to get a correct diagnosis, building on some existing work done by others.

For example, the average time for endometriosis correct diagnosis is NINE years from first presentation, and many misdiagnoses before that.

I suspect that coeliac is another - it took me 40 years to have it identified. All they did before hand was zero in on symptoms (like persistent serious anemia) and none looked for the cause, until an immunologist finally cracked the case. So after those 40 years of iron tablets, very painful iron transfusions, more red meat than I care to think about, B12 injections, bone marrow biopsy, chronic fatigue, and not being believed about eating an excellent diet, I became a diagnosed Coeliac, which had been the issue all along, because my gut was too damaged by gluten to absorb nutrients.

Heart disease in women is another with long delays, and missed diagnosis, (though not men) as are thyroid conditions. Whatever your condition, I would like to hear how long it took (and how many false diagnoses preceded the correct identification) before your condition was eventually recognised. Thanks for any feedback on this you can give.

13 years is a long time, especially to put up with an uncomfortable/painful condition.

The overall thing I wonder about is how frequent an experience this is. I suspect that the general public assumes that these are rare events. I also suspect that in women's lives they are not rare events, and that the barriers to good health care for women (especially AS women) are much higher than is 1) safe 2) necessary and 3) consistent with good practice. As the medical profession has no interest in looking at this, it's got to start with us, our stories, our experience. So I really appreciate women sharing in the thread.

Delayed diagnosis might have more to do with health insurance type than a persons sex in some instances.

In the U.S. the two primary types of insurance are HMOs and PPOs, though EPOs are becoming more common.

For those with HMOs, the person often needs to go through their primary care physician to get authorizations from their HMO for specialists and certain tests. Sometimes the doctor will request a test or an authorization for a specialist and the HMO will come back and say that they won't pay for it because it's not medically necessary, and many doctors found this a hindrance to their ability to provide care for their patients, and also found navigating the HMO system time consuming. I believe there were also some conflicts of interest at one point.

With PPOs, a person typically doesn't need authorization to see a specialist and does not have to go to their primary care physician first unless the specialist requires a referral from the primary care physician. Doctors are not impeded by HMO red tape and can also order just about any test they want for someone with a PPO. If the test is particularly expensive, for example, and MRI, the testing facility will seek authorization from the insurance company to ensure they will pay for it. The patient can have the MRI without first receiving an authorization from the insurance company but the insurance company may decide they don't have to pay for it and the patient will be responsible for the entire bill.

The quality of care I received increased significantly when I switched from an HMO to a PPO and my doctors seem much happier when they walk in the room.