Barriers to good health care for autistic women

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This discussion reminded me of the difficulties I had when I was in labor with my firstborn (how could I have forgotten!) I went in with strong contractions which were close together, but irregular. I was told that I was in false labor because I was not dilated, and sent home. After about 18 hours, the contractions stopped. About four days later, contractions started again and at this point I was one week past my due date. I went to the hospital again, again told I was in false labor, and again sent home. I was actually told by a nurse that "it was not possible" for me to be in labor because I was not crying, even though the contractions were registering very strong according to the machine.

I went home, but returned a short time later because I had to take a few breaks going up the stairs to my 2nd floor apartment b/c the contractions were so strong. When I returned to the hospital, the main doctor in charge (not my Ob) was upset with me. She told me that I was NOT in labor. I refused to leave and said, "I am not leaving until this baby comes out." She huffed and gave me morphine to relax the uterus and end the false contractions, and sleeping pills. Neither worked. I slept in-between contractions all night, which didn't end this time.

I found out later from a woman I met in the new moms group at the hospital whose son was born a day before mine, that this doctor was badmouthing me to the nurses and in front of other patients, calling me a "hysterical new mom."

Finally, when my own doctor came on in the morning, she said I was having dysfunctional labor, which basically meant lots of contractions that didn't result in dilation. She gave me an ultrasound and found my son was out of amniotic fluid. Despite that, she tried having me go through regular labor, which was not a good idea. After a whole bunch of medications, interventions, problems, and 26hrs of contractions, I finally had an emergency C-section. My son was near death - blue, heart-rate very very slow, not moving. He had to be resuscitated and transported to the nearest neonatal intensive care unit.

This is just one more story of not being taken seriously. I also believe that perhaps a slow processing of what is happening or having some kind of implicit trust in the doctors made me not directly question the decision to proceed with labor, even though I knew in my heart it was going to end up in a C-section anyway.

Another time I was not taken seriously involved my son when he was 3. He had a cough and a fever. I brought him to the pediatrician and was told he "just had a virus" and to bring him back in if he was still sick after three days. Well, he was... So I brought him in again to be told the same exact thing. Three days later, after the weekend, after he has been sick for an entire week, I call the office again. The nurse says to me, "Well, if you *really* think he needs to be seen..." I hung up on her and called my mom who was working for another doctor. I told her I was switching doctors immediately and could she get my son in to be seen with the doctor she worked for. I brought him in, and the doctor *immediately* diagnosed him with pneumonia.

So, why is it that we are NOT TAKEN SERIOUSLY??? This is what I do not understand. I know that if my sister or mother-in-law (some of the two most NT people I know) went in with the same problems, they would not be blown off. It's like I have this invisible mark that says "ignore this person." That is how I feel in general relationships, too. It isn't that I am not liked, but that I am overlooked or ignored, dismissed.

An article making suggestions to doctors for improving their communication with patients. If only. However the focus on patient body language is a bit concerning because I suspect we use less of that to communicate at any time. Is that a core issue here? (One of many). Can we develop a 'protocol body language' to adopt in these situations, and refine it as a practiced behaviour for this specific situation? Is that likely to help? Is that possible? Would it make much difference?

Obviously we are not showing whatever it is they want to see at some level and probably verbal and nonverbal ie body language deficit issues complicate this.. however it may be possible for us to come up with more workable strategies through brainstorming here and reporting back 'trial runs'..

http://jaoa.org/article.aspx?articleid=2093086

Nerdygirl, that is an awful story about the birth of your son! I'm so sorry.

I knew that I could not advocate for myself while in labor, so I chose out of hospital births. Even so, because I was not believed to be in labor, one of my kids was born in our car (while it was moving, in the passenger seat, fully dressed).

I think you were right on about not outwardly showing as many signs as health practitioners are taught to expect. They need different protocol for us.

On workable strategies, for me I wonder if it would be useful if I complained more.

I remember having an ultrasound for my gallbladder and I had to drink a lot of fluids and wait. My mother encouraged me to frequently complain to the staff so that they would know I was uncomfortable. She had believed that they would not take me back at all until I had complained a few times, so they would know I was uncomfortably full.

When I was pregnant with my first and second children, I found it nearly impossible to convince anyone that I was actually in labour. I wasn't able to describe the type of pain or the severity (felt like dull cramps). Because I was able to talk normally and calmly without, I guess, screaming or moaning, they decided I couldn't possibly be in real labour.

Only when nurses finally arrived reluctantly and checked my cervix, they found I was fully dilated and ready to give birth right then! Then the hospital admission staff tried to make me sit down and go through a bunch of forms because they saw that I was still walking (and from what I can gather, women in labour apparently don't walk around calmly). The nurses who had checked my cervix had to actually yell at them to get them to allow me inside!

This was the only time in my life where I saw nurses arguing, fighting and screaming at each another in full view of the public. The nurses were carrying on in a mad panic like this while I was the only calm one.

1) what are the problems with an initial encounter when you present with symptoms?

The main problem is most doctors - especially male doctors - are just immediately dismissive of me the first minute they see me. I don't even get a chance to really explain my symptoms or what is going on.

I've had several different doctors tell me right off that my "color" looks good, as if this means there couldn't be anything wrong with me. I have a very fair, rosy complexion and look younger than my age, and I mean people often do stare at me and comment on how young I look and ask about my ancestry.

So I think there are a few things going on here. One is that I look young and maybe they don't take me seriously because of that.

Two, I think even if I'm sick or in a lot of pain, somehow I still look too well to really be suffering, because of my complexion. I probably don't look haggard enough or something. Also, maybe pain doesn't show in my facial expression the way it would on someone else.

Three, and this might sound weird, but honestly I believe they are making some kind of racist assumption against me, like I must be too "white" to have any real problems. Actually I suspect this may happen to me more often than I'm aware of.

The male doctors usually seem like they want to just rush me out of there as fast as possible. Only female ones have really taken me seriously at all.

I also have problems understand "the way they do things" at doctors offices. It seems like there's always something they assume I'm just going to "know" without being told, and in reality I probably need things spelled out in very clear instructions as in "having a doctor's appointment for dummies." The nurses and receptionists get very snappy and mean with me about it and I just cannot tolerate it. I will leave rather than be spoken to that way.


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?

The consequences for me are I just don't go to doctors, unless I'm really desperate for relief. All they really do these days is write prescriptions. So there's absolutely no point for me to go, unless I think I might want pain medicine, or an antibiotic. Otherwise it is U S E L E S S, just a waste of time and money, that leaves me feeling very angry afterwards.


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?

Nothing really...maybe seeing a female doctor instead of a male(?) but even that has never really seemed to accomplish anything.

I feel like I really need someone to go to the doctor with me and speak up on my behalf, but I don't have anyone who can do that.

YES EXACTLY.

And also me.

I relate to everyone's responses, and am surprised at how similar our experiences of being unheard/invalidated have been.

My adult son came with me to a GP for support a couple of years ago to make sure she didn't dismiss my symptoms or just bypass them and change the subject; the female GP spoke to him instead of me as if I was not there.. then did the usual 'let's do some blood tests'.. in a perfunctory way. Over and out. Next time I saw her, she used up the time I was paying somewhat handsomely for telling me how much she had liked him.. happy to report that I 'fired' that one too...

I feel caught in a double bind: maybe if I don't remember to smile they think I am ?grumpy, ?angry ?too serious and if I do remember to smile, they ?assume I must be well, faking.. either way they take the expression/non-expression as a reason to discount me? Is it something to do with how we LOOK in the first instance, as Dianthus mentioned?

Is it something to do with some mismatch between facial expression and circumstance that we are not aware of?

How 'should' we look? How do NTs look to them when they first set eyes on them as patients? What happens in those first four seconds when subconscious judgments are made about newly met people? Are we broadcasting something they are receiving? I don't know, I really want to get to grips with this issue..

Maybe if we had some video-recording of doctor-patient interactions with both NT and ASD patients, we'd be able to see the differences...

I do think part of it is that I am too matter-of-fact and not "emotional" enough about what's bothering me. If I went in whining and complaining, moaning and groaning, maybe they'd believe me more? But to me, that seems like ACTING... And a search for ATTENTION... which is something I am usually trying to avoid... However, when we need medical attention, that is exactly what we need to get.

It seems to me that attracting attention to one's self is natural NT behavior, but may come harder for people on the spectrum, which causes problems when we actually need attention.

Oh, I hate when the doctors won't speak to me!

The worst:

My husband has surgery. My mother (not his mother) came and sat with me in the waiting room. When we went back to see him, the doctor kept telling my mom how to take care of him at home. She kept saying to tell me instead because I would be with him at home, not her. He.just.kept.speaking.to.her. I guess he looked at me (or heard me speak) and assumed I was incapable of watching my own husband after surgery. Made me so mad!

I sometimes have this problem off and on with doctors not taking me seriously or not understanding my descriptions of symptoms, but the bigger problem is that I just keep running into doctors that are ignorant. This mostly relates to medication (giving me false information about the drug they're suggesting I take), but I also I encounter them not knowing about the existance of conditions with similar symptoms.

My poor assertiveness is also a problem. Like I'm pretty sure I have psoriasis, but my doctor decided it was a combination of fungal infection, seasonal allergies, and having injured myself but forgotten about it. She was kind of sheepish and uncertain and gave me plenty of chances to argue or ask for clarification, but... I just couldn't.

I once tried to hand my doctor a list of symptoms, but she wouldn't read it. Granted, it was three pages long.

I've heard stories from people who've been both normal weight and overweight and found that they received inferior care whenever they were overweight. I saw a study that overweight people are more likely to have executive function problems, and lots of autistic people have executive function problems. Are we more likely to be overweight than NTs? Is that making our doctor problems worse?

http://www.emsworld.com/article/10816986/body-language

I am not posting this article because I like the perspective from which it is written. I am posting it because it reveals something about how some doctors think, judge and perceive patients - and how they get that wrong so often.

Re: people speaking past me to someone else, yes I've had that happen in all kinds of situations.

I've experienced a lot of variations on that as a salesperson, but it's not universal. People respond to me and treat me in all different kinds of ways. I used to blame myself for it if I couldn't get someone to listen to me. I would try different approaches to no avail. Over the years though I've found out that other people have had the same experiences that I've had, and certain customers (as do certain doctors) get a reputation for being difficult.

My experiences in this job have made it abundantly clear that it's not all "me." So I'm not willing to approach things anymore from that perspective anymore.

Things are not always what they seem on the surface...it may seem that other people get listened to more, or spoken to more directly, or get preference in some other way. But in actuality it may not translate into real results for them. The doctor who is dismissive and rude to one patient is still going to be a rude, dismissive doctor to other patients as well. The difference is that the patient who gets more attention just has to put up with more of it, and may not really get the treatment they need either.

Other people have their own intentions, agendas, prejudices, beliefs, etc. and changing your approach is not going to magically change who they are and how they treat you.

I have been reflecting on my last visit to ED and the dynamics that play out there.

I was admitted by ambulance after collapsing in a supermarket, following severe angina, lost consciousness and fitted while unconscious. I regained consciousness and was taken to hospital with a "galloping" pulse (heart beats irregularity and long history of angina and cardiovascular issues - blockages in the vertebral artery etc.)
My clinical records had the recorded history.

Several issues arise from what happened at this admission:

1) Over-reliance on technology to "tell the full story". I was informed (in a dismissive kind of way) by a young female doctor that my ECG was normal. This was not done so much to reassure me as to discount me from being a 'genuine' presentation.

Fact: ECG has a high false positive and false negative rate. Angina does not generally show up as an abnormality on ECGs; unstable angina, the kind I have, is particularly dangerous and comes on without exertion or warning

2) I was told I could not have had angina as I was not exerting myself when it happened, I was sitting in my car when the attack began. The characteristic of unstable angina is that it happens at rest..

3) The report of the ambulance officers, the bystanders who witnessed what happened, and my own report were discounted. Despite all of these attesting to the loss of consciousness and seizures while unconscious, the notes recorded at the hospital said "possibly lost momentary consciousness for a few seconds". I was unconsciousness for a couple of minutes.

4) The ambulance officers noted with concern a significant difference of BP readings in the right and left arms (more than 15 points is seriously indicative and cardiac abnormalities) This was ignored by ED staff who took BP in one arm only.

5) Questions were fired at me, rather than giving me any opportunity to tell my account of what happened. If they are asking the wrong questions, they won't get the right answers.

6) Scant attention was paid to past history showing arterial blockages. These were discounted as unimportant and by one doctor as a figment of my imagination (he obviously hadn't read the old notes of MRI and CT findings); when I tried to protest, he told me I was just anxious and needed to see someone about my anxiety.

7) The anxiety I had arose from the poor treatment and evaluation I was receiving, not being heard and susbsequent invalidation.

My son tried to assist by providing information on the history and was ignored.

9) I lodged a complaint with the hospital's complaint service.

10) The response to the complaint was how well trained the staff were, ignoring issues of how they responded to and misevaluated me. The implication was that they knew what they were doing and I was ignorant. The actual complaints were side-stepped by this power-tripping obsfuscation. There were biases of commission and omission in the complaint response, particularly omission - they ignored whatever showed them in a bad light.

11) There were 11 factual errors in the clinical notes taken of this admission - wrongly recorded allergies, wrongly recorded dates, wrongly recorded past history, abnormal findings described as normal.. there was a brief allusion to a finding that showed I may have had a silent heart attack in the past based on current ECG findings - the same one that I was told was "normal"..

12) I found a blog called "Heart Sisters" which had a wealth of information about women with cardiac disease who had the same kinds of dismissive treatment in emergency rooms. I recommend it to women with similar issues and concerns.

13) About 2 in every 50 patients sent home in the same circumstances die of cardiac arrest within 24 hours in the USA (research); case history findings of health commissioner in New Zealand suggest this happens more frequently here). New Zealanders cannot sue doctors for malpractice. The damages awarded to USA citizens in the same circumstances have been high.

I think that the poor evaluation and misdiagnosis I received was biased by all these variables:

-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".

Fact:

1) Heart disease is the number one killer of NZ women
2) More women die of heart disease in NZ each year than men

Question: Now why would that be......

The National Heart Foundation of NZ in disengaged in this differential and doesn't say a word about it - treats the issue as if it doesn't exist. It is run by men who sell the right to put "the heart foundation tick" on any manufactured foods - healthy or not - to raise money for the Foundation, which seems to function to serve its own needs rather than the target population. Institutions like this can become centrally self-serving, it's not unusual unfortunately. It's a form of corruption that flies under the radar..

I fear the possibility that something urgent will happen and that I will be taken back there unwillingly and unknowingly, unable to get myself to alternative help from specialists in private practice (who tend to pay attention). Going back to ED would certainly cause me anxiety, that's for sure...

Can you get something drawn up by a lawyer to ensure that you won't be taken anywhere against your consent? And maybe assign someone to be a medical proxy if you are unable to make decisions?

I'm not sure how the law works for that there, or here either really...I think in an emergency situation they probably have the right to bypass some legal arrangements and types of consent, but not others.

I'm so sorry you are had to go through something like that. Heart disease is not taken seriously in women. I worry about it too because there are a lot of heart problems in my family. My mother had a heart attack at age 42.



Now that is an extreme imbalance of power.

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

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.