Barriers to good health care for autistic women

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An afterthought re your symptoms Amity: are your iron levels ok, did the doctors rule out anaemia?

I haven't had endometriosis, though I do know of women who suffered twice - from medical prejudice,negligence and ignorance; and the severe pain of their condition.

This morning I heard of this book called "Pain and Prejudice" which may be a must read for every woman and especially young women who have severe pain from this often very painful condition. Here's the link:

https://www.theguardian.com/books/2019/ ... h-about-us

I've been borderline anemic many times before supplements helped to sort that out. It hasn't been a problem for a while. Getting bloods checked again next week. Doc reckons tiredness, brain fog etc is linked to the emotionally challenging therapy for past trauma that I've been doing for a few months now. He could be right.

Have you ever looked into Haemochromatosis? It can mimic anaemia, but it requires very specialised iron tests which might actually indicate you have too much iron. It's confusing, because regular iron tests might indicate a deficiency. This is a fairly common disorder for people in Northern UK, especially women with Irish descent.

At a glance it doesnt seem familiar to me Isabella, but I'll have proper read about it all the same, interesting, thanks.

Hemochromatosis is pretty common - and sometimes women don't know they have it until they're menopausal, because their periods stop and a treatment for hemochromatosis is to donate blood, or getting your period and releasing some of that iron buildup in your system. We used to have people tested for this at the genetics clinic I worked at. The most common cause is a pathogenic variant of the HFE gene.

Hmm this has got me thinking, the two things you mentioned, blood donation and periods are things that have changed.

I used to donate blood regularly, but I stopped meeting the criteria after the contaminated blood scandals here, I needed a blood transfusion as a child, before checks were more tightly regulated.

More recently I've switched to having my period every 3 months...
Was planning on moving to the rod or the coil next week as I kept getting breakthrough, think I might hold off on that now until I've done some more checks...

Barriers to health care


My insurance requires that clients phone the Access line for psychiatrist and counselor referrals

The intake clinician tells the client a clinician will call back in 48 hours

They don't tell you what time

If you don't have a phone, you have to try take an incoming call from a pay phone


You can't make a counselor or psychiatrist appointment online


You can't email the counselor or psychiatrist



This is why I keep postponing both . Among numerous other reasons

When I looked at the dangerous drug regime that this man was concurrently prescribed, I felt sick to my stomach, nausea and disgust. It happens to women too - in fact it happens much more often to women. The article is an exemplar as an illustration of the real danger in this "leap to psychiatric diagnosis". I suspect that if we knew the real life rate of this happening, we would all be too shocked to speak, before we were able to comment on the outrage of the harms done by the combined impact of missed diagnosis + misdiagnosis.

https://www.odt.co.nz/regions/central-o ... al-illness

I literally shuddered reading this account. The Otago Daily Times is a paper in NZ that is recognised as non-sensational, thorough and factual reporting.

Further comment on this topic:

https://www.psychologytoday.com/intl/bl ... l-disorder

We do have to be our own advocates when it comes to health, what happens to people who dont have that ability though... there is surely some people with ASD in this category.

I'm lucky at the moment, the doctors I attend now are relatively recently qualified (practicing about 10 years but with almost instant access to very experienced GPs and consultants) they have up to date practices, work as a team and are not at all jaded.
It's better now than when it was just the very experienced GPs. I do feel like they listen to me, but if I felt they werent I would get a second opinion and start letter writing.

I found in the past that a physical paper trail helps with achieving whatever you need (within reason of course) a professional/business to do.

I think receiving a letter from a client/customer outlining their concerns introduces the thought of accountability at a later stage.

Perhaps the mind-body connection needs more emphasis, learning about it (thank you for helping that happen B19) is the reason why I've started trying to find out if there are any body related illnesses negatively affecting my mental wellbeing.
Mental health issues can lead to physical ones, and vice versa.

And thank you Amity for your always thoughtful, respectful and interesting posts.

I would add to that article that the mind body connection goes far beyond only disease and ailment connections, it is intrinsic to our everyday (and every night eg dreams) experience and function. If I had a wonderful dream and wake from it feeling energised and excited about it, that's a personal experience, and I don't need psychiatric referral to diagnose or explain it. Overall I thought the article helpful, until I got to the promotion of psychiatry for what is a natural function of animal life: what affects the mind affects the body, what affects the body affects the mind. It can be pathologised a bit too readily by some practitioners IMHO.

The same practitioners tend in substantial proportion to be "hammers" with a tendency to look only for nails - and so they find them, because that is the tendency of tunnel vision. Psychiatry has not yet emerged from these severe impairments, and nor from seeing people in terms of labels and disease rather than whole human beings made up of a kaleidoscope of interactions. I know some will disagree with this and say or think that their psychiatrist saved their life/mind/marriage and to them I say "that's great". It doesn't explain away the greater rates of failure, some of those failures so appalling that they wouldn't be tolerated in any other area of medical treatment.

A lot of food for thought in this piece: "Autism & Mental Health: taking it personally" (It's available via Google search, sorry I couldn't get the link to work)


Quote:
Some areas have charities that offer programmes aimed at late-diagnosed autistics, providing information about autism, but too often these are led by non-autistic people, with pathologising language throughout. These sessions can too often do more harm than good.

...
There's much more in the article, written by an autistic person.

This very disturbing exposure of people with mental health conditions not being evaluated for heart disease because doctors instead focused on their mental challenges did not surprise me:

https://www.heartfoundation.org.nz/abou ... al-illness

While AS is not a mental illness, I think - because of the AS manner of communication is not considered "appropriate" or "normal" by many doctors, that the "ignoring of heart disease symptoms" may be much higher for AS patients presenting with them.

I would be interested in hearing from anyone who has experienced this (I have, and was fortunate that I found an Aspie GP who then sent me for private cardiac function evaluation with a top specialist, who identified the issues; however it was very expensive, and possibly beyond the financial reach for many AS people, if they have not been able to accumulate funds). I resented the fact that I could only get attention to my cardiac issue by paying for it, when as an NT woman here, I would have had much better chances of getting the help I needed via our public system (which I, as a taxpayer, also pay for).

I believe there is huge prejudice out there in the diagnostic/evaluation phase of medicine and you have to be strong, focused, persistent to get adequate care if you don't fit the standard, normative, majority NT type of profile and presentation.

Which is why I created this thread in the first place.

I have (self-diagnosed) raynaud's disease, self-diagnosed because the doctor didn't believe me. I told her about my symptoms, that my hands and feet go purple/blue/white when I'm cold or nervous, and that often they are so numb I can't use them. I didn't know the name for raynaud's at the time because I was a teenager and didn't have access to a computer to research it, so I said "I think I have very bad circulation". She simply said, "no you don't", and that was the end of the matter. That interaction continues to baffle me and I still think about it sometimes. It was one of the first times I'd been to the doctor on my own, and it definitely affected my confidence in self-advocating.

Not having a diagnosis has affected me as I've since been prescribed treatments and medications that wouldn't be prescribed to someone with raynaud's. I nearly caused serious damage to my knees by icing them on a physio's recommendation; it was just under 20 minutes and when I removed the ice packs, parts of my knee were frozen solid (not good). The areas turned into very painful burns, I basically gave myself frostbite. My GP also just gave me a medication to use for something unrelated, which says it should not be prescribed to people with circulatory issues.

I think in general I'm not very good at sticking up for myself in the moment, as I get overwhelmed and tend to go along with whatever the doctor says, even if it doesn't seem right. I did file a formal complaint against a GP a while ago because I felt she was very dismissive of me. I went to her with knee pain and she didn't even attempt to look at my knee or ask about the pain level. I also spoke to her about depression and that I was struggling to cope, I was on the verge of tears and my voice was starting to choke up. She ignored this and didn't take me seriously.

The first doctor I spoke to about getting an autism assessment laughed at me and said it was very over-diagnosed these days. A mental health professional I saw said that I wasn't 'dressed like someone with an eating disorder', which felt extremely invalidating. A good chunk of my wardrobe is oversized jumpers I can hide in; if I'd chosen one of those that day I would have got better care .

That said, the doctor I've been seeing recently is a lovely person and she's really gone out of her way to get access to resources I wouldn't have otherwise. She seemed to have read my notes before I met her, because she connected my autism/anxiety/mental health issues to the physical problems I'm presenting. I felt seen, it was great.

It also seems to me that you have to have an idea of what's wrong with you before you go in. Doctor's are busy and in my experience at least, you seem to get a lot further with them if you say 'I think I have X condition' rather than 'I have all these symptoms'. However, if you are too well-researched or don't come across in the right way (which may be difficult for an autistic person), you might be dismissed as a hypochondriac. It's possible that women are more commonly disbelieved anyway regarding pain levels and their own experiences. I also think there may be an issue with the way we as autistic women present or react to pain. There are a number of anecdotes on this thread where the women didn't seem to be in 'enough' pain to their practitioners, and so they weren't taken seriously.