The consequences of “medical misogyny“ for autistic women

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ASPartOfMe
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22 Jun 2022, 6:53 am

Medical misogyny is causing a mental health crisis among autistic women - Glamour UK

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“How did you get diagnosed, then? Through an internet quiz?”

On the surface, he was asking a question. But the airiness of it, and the smirk that somehow radiated through the phone made it clear to me that he thought he already knew the answer. I didn’t expect the validity of my autism diagnosis to be questioned by a doctor, of all people, during an occupational health appointment — but looking back, I shouldn’t have been so surprised. After all, since when have women everbeen taken seriously by doctors?

A 2019 study found that 1 in 2 women (52%) believe that gender discrimination negatively impacts their medical care, while nearly a third of women said they felt a need to “prove” the legitimacy of their medical concerns and symptoms for their doctors. Despite having my autism diagnosis for over ten years, I was put into a position where I felt the need to ‘prove’ myself to this occupational health doctor, and the sad part, is that I was one of the lucky ones.

Tatum Spears, 30, recently went viral on Twitter after sharing her own story of medical misogyny on Twitter — with her thread, which recounts her experience of being dismissed by a male psychiatrist over autism, being viewed over 2 million times.

Tatum had expressed her suspicions to her psychologist once before, but was “dismissed” by him, with the psychologist claiming she couldn’t be autistic because she was “socially engaged in the phone call” and “didn’t talk in a monotone voice.”

“I was crushed beyond belief,” Tatum recalled. “His invalidation and dismissal devastated me.” But she persevered. “​​Over the course of eight months, I read peer-reviewed articles, learned about ASD, took nearly a dozen assessments, and they all said the same thing,” she explained to GLAMOUR. “They said that these assessments weren't meant to serve as a diagnostic tool, but if the results are consistently high, I should mention it to a medical professional.”

This led to Tatum raising it again, but said he “once again refused to assess me.” She said, “His reasons for this were based on a rigidly incomplete and unforgiving "symptom" list that sounded like it was from the 1990's.” When she explained to the psychiatrist that the reason she had enhanced communication skills was because of her performing arts experience, extensive therapy, and an advanced reading age, he responded by suggesting that she had Narcissistic Personality Disorder.

It’s exceptionally rare for autistic women to even get diagnosed with autism in childhood: if at all. According to the National Autistic Society, the ratio between diagnosed autism in men vs women ranges from 2:1 to 16:1, with the most up-to-date ratio being 3:1. But even then, while 50% of autistic boys are diagnosed before age 11, only 20% of autistic girls are diagnosed before that age. And even when they are identified as autistic, they gain support and diagnosis significantly later than autistic males do.

Because autism is so intrinsically rooted with masculinity — with countless researchers even pedalling the theory that autistic people have an ‘extreme male brain’ — it seems like all autistic boys have to do to get diagnosed is be socially awkward and extra good at maths.

Ellie Middleton, a social media executive and neurodiversity advocate, only got diagnosed with autism at 24: despite exhibiting signs of autism from early childhood. “One thing that I think about a lot is how lucky I was to spend so much time with medical professionals – but still no-one ever considered that I might be autistic,” she said.

Recent research revealed that more than 22% of autistic women —more than one in five — are hospitalised because of their mental health by age 25. To get to such a crisis point at such a young age doesn’t happen overnight. It’s the result of long-term, systemic failures in correctly identifying and supporting autistic women.

A recent study revealing that more than half of autistic women, specifically, experience comorbid depression (62%), anxiety (67%), and suicidal thoughts (62%)%. Without the support and self-understanding that comes with an early autism diagnosis, it is clear to see why so many autistic women are reaching crisis point.

With autistic women being thirteen times more likely to die by suicide than the average person, the implications are clear. If clinicians don’t work to address their internal biases now, the consequences will be deadly.

bolding=mine


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SendInTheClowns
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22 Jun 2022, 10:51 pm

The medical bias has been studied, confirmed, voiced for years; this has achieved no change whatever - that I can see - has not led to any apparent knowledge nor practice gains, and the diagnosing community seem now as incompetent, misinformed and dangerous as they were ten years ago. Even more so perhaps.

So why is it so hard for autistic women's voices to be heard? What has happened in the past ten years - which IS a remarkable change - is the plethora of published work, online and off, by AS women. I follow much of this work, and much of it is impressive. But what audience are they reaching? My answer to that is: autistic women.

The big question is how genuine practice protocols and awareness of AS presentation in women can be introduced meaningfully to the retraining and training of existing and future practitioners so that there is take up. Information alone is apparently not sufficient (Tony Attwood has worked hard to educate practitioners, without discernible apparent impact). I am not surprised by the reportedly high level of suicide; autistic women face multiple barriers as do AS men, but the women more of them, more frequently.

Maybe one small part of the way forward is to educate core providers of suicide services (outside of medical practice) to integrate the issues into the syllabus of every person they train/employ; such services also have meaningful access to the media - and to donors concerned with suicidal causation.

Autisitic voices are GREAT. However, as members of a disempowered, othered, group - autistic voices are denied power and ignored, treated as "noise". Change is always potentially possible; we have plenty of historical examples.

I recall corresponding with a very effective change agent a few years back, her mission was to overcome the needless deaths of women from heart attack because of medical bias. (The Blog is called "Heart Sisters"). It was a huge effort, but she did achieve meaningful change, and an inspiring educational resource for other women initially denied access to accurate, timely diagnosis of heart problems.

Maybe a targeted lobbying organisation could also be part of the way forward, lobbying media, medical schools and specific medical providers of "updating good practice" seminars to medical practitioners.

Ultimately, the solution - whatever it is - centrally relates to fundamental power relations (the giving away of, the medical misuse of) and pathways to empowerment. Change never "just happens".



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23 Jun 2022, 4:50 pm

I'm in a mopey mood today, so am not the Change today. Maybe other days.

I reached crisis before 20; I'm glad to be here. My female cousin reached crisis in her late 20s; I am sad she's not here to talk about it. We both sought help again and again - we were both intelligent and well-behaved - we were told to relax and figure it out.

It seems if I tell a male NT dr what I think the problem is, he will inevitably DX something else, cause me much angst and pain and then I have to find a female NP who will treat it as I said. I once had a female NT dr whom I could trust to listen and make thoughtful good medical recommendations for me. She was pushed out of her male-dominated workgroup and went into research. I am on the fence about my female primary care dr...



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23 Jun 2022, 6:45 pm

I so understand, SharonB. I have - like most AS women - been so traumatised by dismissal, invalidation and refusal to listen by doctors over decades that now, at the first sign of invalidation from a practitioner I go into brain freeze. The energy cost of self advocacy in this circumstance is huge. I no longer have the amount of emotional energy it requires, and part of me has withdrawn from attempted engagement to achieve better personal outcomes.

My current medical issues are serious; just coping with the pain and disability of them overwhelms my energy supply, let alone added unnecessary medical trauma. But it doesn't matter now: I'm old, frail, seriously injured, debilitated and declining, and I accept that (part of me welcomes it). I just want to believe the younger female cohorts of my family will not always have to fight the same personal battles (yet they are having to do so for now).

It breaks my heart.



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23 Jun 2022, 6:53 pm

I don't know that it's specific to women. I'd call it Medical Misanthropy, pertaining to all autistic people.

When I had my first stroke the ER doctor thought I was drunk or stoned on drugs because I didn't present like a normal NT patient having a stroke. He spent hours ordering toxicology screens and trying to send me home, with a very dismissive and belittling tone, instead of administering clot-busters or even doing MRI.

This was on a Tuesday afternoon and I was with a longtime friend / professional with a PhD, who could vouch that I was neither drunk nor "faking it".

The nurse who happened to have an autistic son convinced him that I was having a stroke, and demanded that I needed MRI. I heard them through the curtain. Without her, I could have died for want of anticoagulants and stroke treatment.



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23 Jun 2022, 7:12 pm

It’s very upsetting the degree of medical misadventures,I have had do to medical incompetence.
Am too old to fight them anymore also .. but generally am knowledgeable enough and good with language that, have got a few to hear me. But the most abuse came from the mental health industry , but several other physical issues were ignored , leading to some of my more permanent disabilities due to poor surgical procedures . But have taken a chance on a osteopath , with a good bedside manner .. and had surgery . Seems possibly to be going okay ..
But some symptoms still seem to be present , just hoping with more healing they may pass.


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24 Jun 2022, 12:19 pm

The misogyny in society is getting worse and more aggressive every day. There's more misogyny terrorist extremism than ever now, and something has to be done. And right now there are several male WP members reading this right now and are going to tell us why this is completely wrong.



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24 Jun 2022, 2:44 pm

There is a hell of a lot of misogyny amongst male health professionals. I've had far too many unpleasant experiences.

Also, some of my experiences are different as a woman of colour....I've been dismissed by white women health professionals too. Before diagnosis, I was told by a GP and CBT therapist that my Arab background is the reason for the symptoms I have (ridiculous assumptions were made, even though my parents are liberal). Autism was not even considered a possibility.

A woman GP of a similar background to mine took my concerns seriously and referred me to two diagnostic centres.


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24 Jun 2022, 7:01 pm

And here we are talking about Medical Mysogyny…. And what is Roe vs Wade going to do for that ? Other than
Making this kind of treatment legal .?????? :(


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20 Jul 2022, 11:22 am

SendInTheClowns wrote:
Maybe a targeted lobbying organisation could also be part of the way forward, lobbying media, medical schools and specific medical providers of "updating good practice" seminars to medical practitioners.

What's really needed, IMO, is a professional association of autistic autism professionals. This would be an organization of people with expertise both from lived experience and from up-to-date relevant science.

Recently at least organization has formed that is not quite the above, but does overlap with the above. A U.K.-based Association of Neurodivergent Therapists was formed in 2021. We need a similar org in North America.

We already have some relevant lobbying organizations. (Here in the U.S.A. the relevant org is the Autistic Self Advocacy Network.)

Such orgs could be much more effective if there were also an organization of autistic autism professionals, plus also more organizations of autistic (or neurodivergent, more generally) professionals in various specific relevant fields.


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20 Jul 2022, 11:35 am

I don't have any male doctors except for my OB/GYNs.

My GP, Neuro, Rheumy, OT, PT, SLP, Psychologist, and even my dentists are women. I didn't choose it that way, but there are far more women in medicine than men, where I live.

I find it difficult to communicate with all of them, even my GP who I've known for her whole life. I used to babysit her when she was little. In my case I think it's a communication block caused by my ASD. I have a hard time describing symptoms and I tend to do so much research on my own that I might frustrate them.

My daughter had an Autistic therapist for a few years and really liked her. Personally I'm having a hard time finding a PTSD psychologist who is ND. I've found a couple of them after months of searching, but they aren't taking new patients and don't even have waitlists in place.



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21 Jul 2022, 2:15 am

IsabellaLinton wrote:
I don't have any male doctors except for my OB/GYNs.

My GP, Neuro, Rheumy, OT, PT, SLP, Psychologist, and even my dentists are women. I didn't choose it that way, but there are far more women in medicine than men, where I live.

I find it difficult to communicate with all of them, even my GP who I've known for her whole life. I used to babysit her when she was little. In my case I think it's a communication block caused by my ASD. I have a hard time describing symptoms and I tend to do so much research on my own that I might frustrate them.

My daughter had an Autistic therapist for a few years and really liked her. Personally I'm having a hard time finding a PTSD psychologist who is ND. I've found a couple of them after months of searching, but they aren't taking new patients and don't even have waitlists in place.


PTSD doctor that are NDs. ,, not sure what is meant by ND ? Naturopathic Doctor ? That would be a rare find in the US. , I think ?


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21 Jul 2022, 2:58 am

I meant ND = Neurodiverse.

Ironically I used to have a Naturopath (ND) who is Neurodiverse (ND) (Autistic), and she used to do trauma therapy because she also had Psych credentials.



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21 Jul 2022, 9:16 pm

Medical professionals always seem surprised by my autism diagnosis.

I suspect most of them have so little up-to-date training on autism that they could only spot it in a child on the more severe end, and don't have a clue about presentation in adult women.

Even when my (mildly autistic, teenage) son saw a psychiatrist, the guy was quite happy to sign off on his ASD, even adding ADHD and GAD for kicks, but when I told him I was on the spectrum he clearly didn't believe me. And then had the gall to suggest I needed psychiatric treatment for mental health without doing any tests at all (!)

I count myself extremely fortunate to have found an autism expert who could do the diagnosis.



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21 Jul 2022, 10:01 pm

SendInTheClowns wrote:
I so understand, SharonB. I have - like most AS women - been so traumatised by dismissal, invalidation and refusal to listen by doctors over decades that now, at the first sign of invalidation from a practitioner I go into brain freeze. The energy cost of self advocacy in this circumstance is huge. I no longer have the amount of emotional energy it requires, and part of me has withdrawn from attempted engagement to achieve better personal outcomes.

My current medical issues are serious; just coping with the pain and disability of them overwhelms my energy supply, let alone added unnecessary medical trauma. But it doesn't matter now: I'm old, frail, seriously injured, debilitated and declining, and I accept that (part of me welcomes it). I just want to believe the younger female cohorts of my family will not always have to fight the same personal battles (yet they are having to do so for now).

It breaks my heart.


Yes, my recent PCP was dismissive and in retrospect it was a huge trigger for me, like you said. Probably took me near two weeks for the panic to subside.

Hugs for your hardships. Wishing you gentleness.



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22 Jul 2022, 2:27 am

most drs are women nowadays,
i even relate lesser to them, they to me i should say, :lol:
although the male drs here operate (=work) with your popularity and the frequency of your dr-visits as determination of your honesty, what ?? what has that to do with health, and that from the drs who hold lying-stealing-etc persons as exemplairy extraordinary citizens,
oh :ninja: no the same-of sorts with the new neighbor doctor, app your 'social-points' is on par with the social webs you hang out in advertisement
:cheers: :cheers: doctors, they stand with legion()
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beam me up scotty--