Barriers to good health care for autistic women

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TwilightPrincess
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09 Aug 2018, 6:52 pm

I need to read through this thread later. It took me a long time to get diagnosed with endometriosis and for my issues in pregnancy to be taken seriously.

In retrospect, I didn’t complain enough. Doctors expect all women to complain about female issues, so it’s hard to be taken seriously. Maybe I needed to be even more vocal in my complaints than I was.


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B19
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12 Oct 2018, 12:52 am

Comprehensive 2018 article on how AS women are missing out on adequate health service:

https://www.independent.co.uk/news/heal ... 84341.html



huimaa
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12 Oct 2018, 1:01 am

Being labeled as fictitious or hypochondriac is a real issue because sometimes we can't express ourselves clearly and have maybe strange eye movements or speech patterns, when thinking hard what to say, I know this by going through multiple very unprofessional doctors for my cfs symptoms (and also Ehlers-Danlos) and I have a list of diagnosis that are 100% untrue. Like psychotic depression, because of my lack of eye contact (seriously...)

I was in such a bad shape that I seemed of course depressed, but it was not that, and I said it multiple times, without anyone listening to me. After five months I got in touch with a private neurologist who knows these things well and takes me seriously.



B19
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12 Oct 2018, 1:36 am

What three things do you most need doctors to understand prior to treating you?



hurtloam
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12 Oct 2018, 2:55 am

I don't know how many Dr surgeries in the UK have this triage system now. But I'm finding it too confusing to actually make an appointment these days.

The triage system works like so. You phone at 8:30am and ask for an appointment that day. If you want an appointment another day they won't give you one. It has to be that day. But you don't get a face to face appointment. They book you in for a call back and a Dr phones you to assess whether they need to see you face to face.

So. I need to see my Dr for a check up and renew my prescription. I have a bit of a cold, so figure I'll leave it till im feeling better. It's just a virus, I don't need to see him. But then the virus turns into the worse chest infection I've ever had. I phone up. My Dr isn't available, so I get a call back from someone I've never met before. She agrees to see me. Turns out, it's just a virus nothing the Dr can give me. Then she asks why I haven't had my check up with my regular Dr (after reading my notes).

I waffle. I'm not well. What I say doesn't make much sense. This Dr tells me to go to reception on my way out and book an appointment with my regular Dr for a check up. I didn't know I could do that. How the hell am I meant to know I can ask for an appointment on another day when the receptionst hammers me with the "triage system" when I phone up.

I manage to book an appointment with my regular Dr on my way out, but can't see him till the end of the month as he's going on holiday. That's fine, he can have holidays.

I'm annoyed that I could have had an appointment with him sooner if I'd phoned and asked to book a check up and tell the receptionist that he had told me to book the check up. I didn't know I could do that. I wasn't told there was any way around the "rules".

I need to have how to actually see the Dr explained to me. I feel so stupid

I hate going to the Dr. I've been really ill this year and we don't seem to be getting anywhere. I've been suffering from depression too. And I'm sweating all the time. I feel feverish, but whenever I have my temp taken there's no fever. I can't convey how miserable I am at the moment.



traven
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12 Oct 2018, 3:05 am

where has decency gone?
when doctor laughs in your face, or doesn't want to listen to you and say that too,
never ask you why you came, but talk on the phone when you're in their office,
funny they find the time to make you pay,

if you are not a sociopath, they take you for an idiot, a liar and a ret*d

it may be that i should bow for the mighty doctor when entering the office, crawl forward and pretend myself as some important topmonkey in my show

//
i had better experience with the docters who also were medical coach for sport clubs,
they might have a better communication and a different look on people/women,
(or the can-do approach vs the poor-me approach) ?



B19
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05 Aug 2019, 6:23 am

The shocking extent to which AS women are failed and mistreated by the mental health system:

https://theaspergian.com/2019/06/23/autistic-women/

When will they ever learn?
When will they ever care?
When will they ever listen?
When will they ever take responsibility for their failures?

Don't trust the mental health system if you are AS and female. It's dangerous to your mental well-being in very significant ways. Take care.



traven
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06 Aug 2019, 1:07 am

it's for everyone, the medical is very very self-protecting


the expert on trauma :skull:



ASPartOfMe
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08 Aug 2019, 3:41 am

Autistic women twice as likely as autistic men to attempt suicide

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People on the spectrum, and girls and women in particular, are at high risk of suicide, according to the largest study yet to analyze suicidal behaviors in autistic people1.

The study is the first one large enough to analyze suicide data for autistic people by sex, intelligence and the presence of other conditions.

Even in the general population, women tend to attempt suicide more often than men — but this sex difference is more pronounced among those with autism, the study found.

Autistic women who also have attention deficit hyperactivity disorder (ADHD) may be at particularly high risk: One in five attempts suicide, compared with about 1 in 11 men with both conditions. Among autistic people with intellectual disability, 1 in 13 women attempts suicide, compared with 1 in 20 men.

“Autistic females have a higher risk for suicidal behaviors in almost all types of suicidal behaviors we analyzed,” says lead researcher Tatja Hirvikoski, associate professor of clinical psychology at the Karolinska Institutet in Stockholm, Sweden.

Siblings of autistic people are also more likely to attempt suicide than siblings of controls. This pattern also holds, although less so, for half-siblings and cousins.

Other studies have suggested a genetic component to suicide, but this is the first study to explore a genetic link between suicide and autism.

“This is the first time we’re even thinking about this question,” says Anne Kirby, assistant professor of occupational and recreational therapies at the University of Utah in Salt Lake City, who was not involved in the research. “It’s a good way to start thinking about it, but probably a lot more work would need to go into understanding familial risk.”

Some studies have suggested that autistic people are as much as 10 times more likely than people in the general population to die by suicide2. However, given the rise of suicide in the general population, researchers have been unsure whether these numbers reflect a real increase in risk, says Paul Lipkin, associate professor of pediatrics at the Kennedy Krieger Institute in Baltimore, Maryland.

The new study, which looked at more than 2 million people, settles this question.

“There is clear suggestion here that yes, there is a greater [suicide] risk over the general population for people with autism,” says Lipkin, who was not involved in the research.

people with autism diagnoses recorded from 1987 to 2013, and 347,155 of their typical siblings, half-siblings and cousins. They matched the participants to more than 2 million controls.

Relative to controls, people with autism alone have four times the odds of attempting suicide, more than six times the odds of a suicide attempt that results in hospitalization, and eight times the odds of dying by suicide. These odds decreased when the researchers adjusted for conditions such as depression, anxiety and substance use disorder but were still significantly higher than in controls. The findings were published in June in Psychological Medicine.

Autistic people who also have ADHD have an even higher risk relative to controls: 7 times the odds of attempting suicide and 13 times the odds of dying by suicide.

This isn’t surprising, given that ADHD alone is also associated with suicide, Hirvikoski says.

Autistic people with typical intelligence have higher odds of suicidal behaviors than controls do. However, contrary to common assumptions, autistic people with intellectual disability are also more likely to attempt suicide than controls, Lipkin notes.

“Autism in and of itself, independent of intellect, seems to be an important contributor to suicidal thought — which makes one wonder if there’s a neurobiological relationship between the brain of someone with autism and the brain of someone who has mood problems and suicidal ideation,” he says.

Bolding Mine.
Blaming the victim, blaming the autism, hysterical woman stereotype again. No consideration that what has been talked about in this thread for six pages might be a factor, none whatsoever. I think the attitude expressed is one reason for what has been discussed for six pages.


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Amity
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13 Aug 2019, 9:16 am

B19 wrote:
The shocking extent to which AS women are failed and mistreated by the mental health system:

https://theaspergian.com/2019/06/23/autistic-women/

When will they ever learn?
When will they ever care?
When will they ever listen?
When will they ever take responsibility for their failures?

Don't trust the mental health system if you are AS and female. It's dangerous to your mental well-being in very significant ways. Take care.


Good to see your post B19, take care too!
Quote:
It seems to be a common experience of autistics who, when they sit in psychiatrists offices, feel lost, anxious, and overwhelmed while being asked open questions that are not specific enough to be understood by the autistic patient, leading them to be labelled as difficult or not trying hard enough.

The truth is, the patient desperately wants to be open and honest and to answer the question, but simply doesn’t understand the question enough to do so or what the clinician asking the question actually wants them to say.

Their specific autistic needs are neither acknowledged nor supported, such as their pervasive sensory needs, slow auditory processing, social overwhelm, autistic shutdown, or difficulty understanding verbal communication.

Then they are released back into the world without the support and help that they struggled so hard to ask for.

This is a system that desperately needs to be fixed. It is failing so many autistic women simply because practitioners do not have the training or education in female autism to be able to identify it.

This section sums up my experiences with General Practitioners and some therapists. If the therapist is honest about their lack of understanding of ASD in adult women then I can work with them.



Amity
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02 Sep 2019, 7:35 am

I suspect that I have an underactive thyroid, it runs in my family.
I had 3 T3 &T4 tests, but the results are borderline underactive each time.
Feeling tired so easily these days, despite making healthy changes.
Has anyone experienced something like this?



B19
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02 Sep 2019, 10:48 pm

Hello Amity. What I have recently learned is that the test boundaries (ie the amount of thyroid hormone present in the sample which gets labelled a positive or negative result) are abitrary, different countries set different levels. For example, the positive threshold is very high in New Zealand, (I don't know why, possibly ignorance? cost saving?) so a number of people will receive a negative result and be told their levels are normal, when they would be diagnosed and treated in a country that set the bar lower. I don't know what the USA levels are like.

This has implications for women's health, as women are more likely to have thyroid problems, though of course men too may have debilitating high or low levels.

Generally though, I have noticed, that whenever there is a condition that affects women a lot more than men - this includes all forms of autoimmune disease - less treatment and funding is available, there is less interest in specialisation by health institutions (there is no Department of Autoimmune Diseases", for example, it's absorbed into all the others as an often neglected "add on") and there is more missed diagnosis and more misdiagnosis.

So there is a long way to go. Won't happen in my lifetime, though I hope awareness has started to expand.



Amity
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04 Sep 2019, 4:55 am

It's great to see you back B19 :D
Thanks for the reply, just to clarify I'm in Ireland, not America.
_______

I might have to follow this up privately, thyroiduk.org suggest that the traditional blood test is not always the best indicator of thyroid health. Also for consideration is the adrenal gland...
I am cagey about the side effects of levothyroxine, osteoporosis already features in my family, but so does hypo/hyperthyroidism cholesterol and angina... Catch 22.
There are supplements that support adrenal and thyroid functioning, though taking them would skew results and make it more difficult for the GP to take this subclinical hypothyroidism seriously.



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04 Sep 2019, 9:38 am

Is your GP aware of your family history? Perhaps you need to talk to a specialist with more expertise?

I think it makes more sense to first try accepted hormone therapies with medical supervision and lab tests to monitor how your body is reacting than to try supplements.



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04 Sep 2019, 4:10 pm

BTDT Yes they are aware, I've discussed it each time I've gone for the appointment to arrange tests and at the follow up appointments. Though the anxiety/depression makes its confusing to know whether I am fixating on something in a way thats catastrophrosising, it's something the doctor has hinted at. Deep down I dont think I am.

I dont mean to say that I wouldn't consider prescribed medication, I can feel that something is off with me and until I find out what that is, supplements can't hurt.

Yes I should push to see a consultant, my difficulty thinking things through is another reason I'm posting about this.



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04 Sep 2019, 7:38 pm

One of the things they look for when testing drugs is any effect. A drug that makes a disorder or disease worse means that they may actually be close to finding something that works.