Barriers to good health care for autistic women

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Type D and heart risk:

https://myheartsisters.org/2009/07/17/type-d/

The link discusses how it is not "Type A" women who are at most risk of heart attack, but another personality type (D) which is reserved, bottles up things, worries... I think Type D might be quite common in AS women. So on top of the barriers to good diagnostic practice already noted in this thread, doctor's ignorance of Type might be another barrier and risk factor for women with heart issues..

There is also a link within the article which is fascinating, revealing the real reason that Philip Morris (huge tobacco company) funded the research on "Type A" heart attack risk.. not surprisingly, for their own hidden agenda. A must read for anyone interested in the politics of tobacco marketing.

...

Type D: (excerpt from the link, the post begins with this

According to the Harvard Heart Letter, if you are the kind of person who . . .

tends to sweat the small stuff
sees the glass as half empty
keeps your feelings bottled up inside

… then you might well be termed a Type D (distressed or distant) personality, and be at increased risk for heart disease.

I saw a psychiatrist recently. I asked if he knew about autism his response was "Of course I know about autism but I work with adults so I don't come across it." So willful ignorance is a pretty big barrier. I'm sad for all the people he's no doubt wrongly diagnosed with personality disorders because he's too lazy to educate himself.

Thank you for your report. It saddens me though it reflects something that I think is not restricted to one individual doctor.

That happened to a friend of mine, not autistic, but still. Took herself to hospital at night then wasn't believed, got ignored all night and then in the morning spoke to the head ward nurse who recognised how ill she was and who was then angry with the nurse that had admitted her and not seen to her treatment. She didnt get an apology though.

As if people go to the hospital for fun.

Thankfully I've not had any serious health issues in my life so far so not had to go through any bad experiences.

excellent topic. timeous too. i have to go to the doctor for winz (i see you are from nz) - happens every year - and i am dreading it. going to the doctor is something that completely baffles me. if i am sick (ie dont have to go for winz), i just dont go.
question 1:
the first problem is communication. i struggle to make the appointment and get to the appointment. the offices themselves (lights, lots of people, and its next to a railway line).
the doctor herself really wants to help me, and i know she doesnt know how. the appointment is probably frustrating for her too. i email her beforehand to try mitigate some communication problems
question 2:
yes, we seem to spend most of the allocated time miscommunicating instead of discussing my health
about three years ago (one of those compulsory visits) i had my blood pressure taken and it was extremely high. i was (and am) worried. i managed to go to the doctor (a new doctor) at the beginning of this year to have it checked again. she allocated funding for a longer appointment (like i said, she really wants to help me) but 30 minutes was spent miscommunicating and i didnt get my blood pressure taken. she made a second appointment, i managed to get there, 30 minutes and still no blood pressure taken.
the consequences for me: an hour of miscommunication and $36 out of my food money and i still have no medical support. i try not to contemplate the long term consequences.
(although i devised my own support - yoga, meditation, and diet)
pap smears, mamograms, etc just not even possible
question 3:
i havent
question 4:
one of the founding members of the ASK Trust http://www.asknz.net/ here in NZ is a doctor (retired) who may know of an ASD friendly doctor in Auckland (she runs workshops for doctors, to help them help their autistic patients). she can be contacted via the site
off topic:
wow, autism nz in auckland had an adult liaison person! wellington could definitely use one!
hope this helps

i have to go to the doctor for winz (i see you are from nz) - happens every year - and i am dreading it. going to the doctor is something that completely baffles me. if i am sick (ie dont have to go for winz), i just dont go.

I'm assuming that you can go to a doctor of your own choosing, not one off a list of theirs. Do you go to the same doctor each time or a different one each time? If the same one, could you provide some feedback on the previous visits using these binaries:


Interrupts/doesn't interrupt
Let's me finish sentences before replying/doesn't let me finish sentences
Stares into my eyes during every interaction/ doesn't stare at my eyes while talking
Listens, hears what I say/doesn't listen doesn't hear what I say
Asks open vague questions like how are you feeling/asks specific questions like How has your asthma been since we last met?
Knows I am on the spectrum/doesn't know I am on the spectrum
Understands ASD in women/has no idea or thinks he/she has but doesn't in fact know, thinks in male-based autism stereotypes
Understands that a significant proportion of the AS population has special health needs - eg higher incidence of autoimmune issues
Speaks very rapidly/speaks at a normal conversational rate
Lets me ask questions to clarify the outcome/dismisses me when time is up
Knows and remembers my medical history/doesn't know and/or not interested in knowing


question 1:
the first problem is communication. i struggle to make the appointment and get to the appointment. the offices themselves (lights, lots of people, and its next to a railway line).

the doctor herself really wants to help me, and i know she doesnt know how. the appointment is probably frustrating for her too. i email her beforehand to try mitigate some communication problems

It's good that the doctor wants to help you, it's a start, first base... goodwill without knowledge though is limited in effectiveness.

As you know when these appointments have to occur (yearly), most medical practices these days have a "flagging" system on their software, that brings up patients' names who are due to review of something or an annual check they need. The practice then contacts the patient with a reminder. Could I suggest that you ask them to set this flag up (write to them about it, probably like me you find phoning very stressful in this situation) and sends you out an appointment when the flag comes up. Ask them to send you an email if they can't do this, and if they can't, can they provide another solution to assist you. Ensure that you know exactly how long the appointment will be for, and if it is very short (ten minutes), request a double appointment be made on all occasions. Ask for the time of day that suits you best. Be as concise as possible with these requests, avoid long explanations about why you are making the requests. They will place a copy of your request on your patient file.


question 2:
yes, we seem to spend most of the allocated time miscommunicating instead of discussing my health
about three years ago (one of those compulsory visits) i had my blood pressure taken and it was extremely high. i was (and am) worried. i managed to go to the doctor (a new doctor) at the beginning of this year to have it checked again. she allocated funding for a longer appointment (like i said, she really wants to help me) but 30 minutes was spent miscommunicating and i didnt get my blood pressure taken. she made a second appointment, i managed to get there, 30 minutes and still no blood pressure taken.

the consequences for me: an hour of miscommunication and $36 out of my food money and i still have no medical support. i try not to contemplate the long term consequences.

Miscommunication is the absolute biggie, even more so than their ignorance about AS conditions and communication styles. When there's a specific, easily accomplished need like BP, start the consultation with "Before we begin, could you first check my BP quickly as I forgot to mention it last time". (I know you didn't forget, however it's not going to be useful to seem critical of the lapse). If that is ignored, then broken record it: Before we go there, can we just get the BP out of the way first? Thanks."

What I know from my own long years of experience as a patient is that the back and forth question and answer pattern doesn't work for me, it raises anxiety due partly to past medical trauma, and the raised anxiety interferes with my ability to rapidly formulate verbal answers, so there results a stuck kind of situation rather than mutually constructive problem solving. So I don't let this happen anymore, I set the terms of the encounter from the outset, explaining that "back and forth questions and answers are too stressful for me to provide you with the best information, so I am going to propose a solution to this - I will speak for x minutes about the issue while you listen, then you respond for x minutes while I listen, then we can clarify any lingering issues. Are you ok with that?"

Using that strategy was the quintessential turning point for me in getting my needs met during my GP encounters. Both GPs I see have nice personalities, warm and approachable, and this is ultra important. The cold fish purely scientific types are in my view best avoided, though they may suit others.

Hope something in my responses will be of some value to your quest for better care. Sorry for the delay in replying to your post.

B19, thank you for your reply and i apologise for my lateness - I had a terrible week last week (and i know i can say that on this site and people will just know, liberation!)
in answer to your questions:
i can go to a doctor of my choosing, the same one everytime. she is a holistic doctor who operates as part of a group of likeminded doctors (and probably patients) in a holistic practise. i find this makes my experiences there calmer than in other doctors rooms i have attended appointments in.
the binaries:
she interrupts
Let's me finish sentences before replying and doesn't let me finish sentences - mix
Stares into my eyes during every interaction (this is so uncomfortable! i look at the floor and i can feel her watching me)
she tries to listen and hear what I say, but she doesn't listen or hear what I say
Asks open vague questions like how are you feeling
Knows I am on the spectrum
she has no idea or thinks she has but doesn't in fact know, thinks in male-based autism stereotypes
does not understand that a significant proportion of the AS population has special health needs - eg higher incidence of autoimmune issues
Speaks very rapidly
dismisses me when time is up
i am pretty sure she does not remember my medical history because she makes the same communication mistakes every time, despite my emailing her before hand and putting on my file my communication requirements (eg, auditory processing disorder)
and yes, likewise, always good to meet another flightless bird!

She sounds like a really poor fit for your needs, for safety you may need to see if you can find an Aspie-friendly GP in your area. She doesn't sound "educable" somehow.

Perhaps you could join StrangerInGodzone's Facebook page and ask the members there if they can recommend one? Or perhaps you could message her via Facebook messenger.

StrangerInGodzone is a kiwi/aspie woman who also has a blog of the same name where she writes about ASD issues, however the one thing she doesn't write articles about there (about the only thing) is health care and barriers to them, it's a very neglected area but such an important one I think. I like her blog generally and you may find it interesting too.

B19 - thank you! I really needed someone to tell me I could get another doctor, I do not have to keep hitting my head against a brick wall. And it is a brick wall, it physically and mentally feels that way; I like the word "uneducable". But I often wonder about that: I dont pay for doctors appointments to educate my doctor, I pay for health care. Which yes, you are right, I need a new doctor because I am not getting that health care.
My apologies, I am ranting a bit.
thank you for the blog/FB recommendation - I had a look around/joined and like what she writes very much
and yes, always good to meet another flightless bird

Could I also suggest you have a look at a blog called thesilentwave, which is written by an aspie woman who is a practising doctor, and (like me) very concerned about the way that AS women are mislabelled as malingerers and so on because of the different way we present. It's a blog I find very affirming - I reblogged one of her pieces onto my blog, and check mine out too if you are interested, there's a link to it in the earlier pages on this thread. I hope you find something of value in both places.

Good on you for deciding to move on to another doctor. If a doctor isn't a good fit, keep moving until you find one who hears you and gets you.

Here's a great piece from thesilentwave you may relate to:
https://thesilentwaveblog.wordpress.com ... lingering/

And a wonderfully insightful quote from another blogger called ASPIEDOC:

Healthcare is emotional labour. It is never simply an objective clinician-scientist treating diseases with technology, but all care that involves people communicating with one another, is psychodynamic, emotional labour.

Anyone have tips for getting your eyes tested? I keep on getting bad prescriptions. I normally just put up with it, but the most recent one was obviously too weak and gave me headaches. Part of the reason I don't mention my prescription is not working out for me is because I feel like my vision issues are all in my head. One annoying issue is that the eye chart and details in general look abnormally small, but not obviously blurry. So the 20/20 line is "clear", but too small for me to obviously read. This makes it hard to get tested. It doesn't help that this is my special interest. I'm worried it will make me look like some hypochondriac. Even though it was a special interest long before I got glasses.

1. First, I suggest that the day before and on the day of the test, you keep to a low fat diet. This is because I have personally found that lots of fat makes my eyesight more blurry than normal.

2. Discuss the issue with the tester, that you end up with the wrong prescription and perhaps ask them this in advance:
"would it help if we did the test twice, as a double check, so that you can compare the results to see if they are the same? I really want to solve this problem, which has been ongoing for me, or can you suggest a better solution".

3. If discussing that is too anxiety provoking, as it might be, enlist a supporter to do 2.

4. The key is to get them (the provider) to solve the problem, in a way that doesn't come across as critical of them. If they ask why you need this, just briefly say that anxiety interferes with your judgment during the one off test. Don't elaborate, keep it simple, and repeat it if they don't seem to take it on board the first time.

5. It might be useful to schedule the second test on a different day.

I hope something in ^ will be helpful in reaching a workable solution. If they are not receptive at all, and just dismiss your request, then say "well I don't think that repeating what didn't work for me before will solve the issue, do you have a better suggestion?"

Communication on your part and co-operation on theirs is the key to solving this. It's not in your head and you aren't a hypochondriac, I have visual problems (lots) and it is a challenge to get the best treatment and prescription, so validate yourself and know that you are entitled to advocate for yourself in the situation. They may appreciate your feedback and input if they are seasoned professionals committed to getting the best outcomes for their clients.

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!