Barriers to good health care for autistic women

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B19
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22 May 2015, 5:42 pm

I am starting this thread with the hope that we can pool some experience in overcoming the barriers and identifying some really good resources.

One problem I have encountered is communicating symptoms and answering questions in the way they want.. For example, ambiguity of questions like "is the pain sharp?" (What is their meaning of sharp? What does sharp mean applied to pain? Does it mean stabbing? Or do they mean is it the opposite of dull pain? And what is dull pain?)

There has been so much miscommunication and misdiagnosis in the past that I now tend to say, "I'm sorry, I don't really understand what you are getting at". Though honest, this just seems to exasperate them - it's like an exam and I am refusing to come up with the answer they want.

So -

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

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?

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?

4) If anyone in New Zealand knows of good doctors for Aspergers women (physical health) in Auckland, please let me know.. I have asked Autism NZ though no response came back. Their terrific adult liaison person has left unfortunately.

I think this is an important and overlooked area of our well-being. It has really impacted on me and so probably the issue is much wider..



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22 May 2015, 6:16 pm

Good topic!

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

Definitely communication! Not really the types of things you mention, just actually speaking. Because it takes me so long to speak, I'm am almost always cut off (by everyone, not just doctors). But, in a doctor's office, it equates to the doctor thinking I am done explaining my symptoms when I may not be. And because I have so much trouble explaining that I am not, in fact, done, that they always end up diagnosing me on incomplete information if I go in all by myself.

Because I know this is a problem, I've often had people go with me--usually my mom or even my mother in law. Even my son has spoken for me on my behalf before.

I have an AAC, but I'm often paranoid that someone will take my children or investigate us if I seem "too disabled", so I've never used it at a Doctor's office (though it would likely solve most of my problems).

I have often relied on writing my symptoms down as a list and just handing them to the doctor though. This actually gives the best results. And, I think it's useful for them, too.

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?

Yes, quite frequently. I was medicated for years for ADHD (many, many, MANY years), because of my lack of ability to communicate. When I finally did, that was when I was referred for a more thorough consultation that ultimately diagnosed me with Aspergers and NOT ADHD.

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?

Write every symptom down on a piece of paper and hand it to the doctor. I've had better success when I've read some medical literature so that I can use the language they expect to hear. Though, truthfully, every time I've done that...the doctor is put-off a little bit. ...but, in the end, it has always proved useful.

Having an advocate has been really helpful for the doctor treating me with more respect.

I also don't really like my medical doctors to know I have Aspergers. So far, all of the ones who knew treated me in weird ways. Reporting that I have a language disorder is helpful, though. While most of them don't seem that knowledgeable about it, they *are* more likely to give me more time to speak.


I really need my own doctor who knows me well and that I feel comfortable with. I haven't found that, so I bounce around a lot...


_________________
So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


B19
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23 May 2015, 1:18 am

I won't disclose my status unless there is evidence that the doctor is ASD literate. My current GP is on the spectrum, I have just transferred to his care. Met him by chance when he was doing a locum, he noticed my watch (a bit of a collector's item) and told me that he is a watch collector - we had a fascinating discussion about the history of watch collecting for 10 minutes as if this was a perfectly normal thing to do (it was for he and I!) and he diagnosed something that 3 other doctors had missed. His medical diagnosis was spot on, and possibly life saving. Even with this GP neither of us have acknowledged our spectrum status - yet - though in time perhaps I will raise it. Just going slowly for now. I've had so many bad experiences with NT doctors that I want to take this carefully.

Found this interesting discussion about the topic of this thread:

http://autismwomensnetwork.org/accessib ... ic-adults/



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23 May 2015, 1:48 am

Long story, oh it's not autism, must be me hallucinating!

After 2 children i ask my medicine-man for IUV (normal 5years) he says, I'm certain you want more children so I give you one for two years only. Moving and another medman later, I go after the two years, he insist a iuv for two years doesn't exist, make me look like an imbecile by calling a 'confrere' with the poch-accent and they decide i'm crazy because such thing doesn't exist!
Getting pregnant within two month from that, i go for the PI but before being helped you must participate at an obligatory discourse on birth-control and a talk to a SW, the hole thing being very humiliating!
Then on the table, so to say, the team finds the iuv and act so surprised "oh see there's such a thing, how surprising"

Really!! the whole thing as s**t as this, you couldn't make it up. How many medical wrongdoings? , absolutely everyone!! !



B19
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23 May 2015, 1:52 am

And another article about the topic of this thread:

https://www.psychologytoday.com/blog/as ... tic-adults

Appalling link within it about a man turned down for treatment because he was autistic.... :evil:



B19
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23 May 2015, 2:44 am

One suggestion I found in my online search is to use this "hospital passport":

file:///C:/Documents%20and%20Settings/Administrator/My%20Documents/Downloads/My%20Hospital%20Passport%20UPDATED%20WEB%20COPY.p

Would you use it?

Have you used it?

If yes, what was your experience of using it? Better, same or worse?

Could this instrument be improved do you think?

If so, how might it be better?



traven
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23 May 2015, 3:11 am

1 deliberate ostracising
2 promoting medical ball and chain



B19
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23 May 2015, 3:21 am

Traven that sounds interesting, could you elaborate a bit?



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23 May 2015, 3:23 am

B19 wrote:
file:///C:/Documents%20and%20Settings/Administrator/My%20Documents/Downloads/My%20Hospital%20Passport%20UPDATED%20WEB%20COPY.p


Um :?

You do realize we can't see that link, on you can?



B19
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23 May 2015, 4:43 am

iliketrees wrote:
B19 wrote:
file:///C:/Documents%20and%20Settings/Administrator/My%20Documents/Downloads/My%20Hospital%20Passport%20UPDATED%20WEB%20COPY.p


Um :?

You do realize we can't see that link, on you can?


Try this one then:
http://www.autism.org.uk/living-with-au ... sport.aspx



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23 May 2015, 4:50 am

B19 wrote:
iliketrees wrote:
B19 wrote:
file:///C:/Documents%20and%20Settings/Administrator/My%20Documents/Downloads/My%20Hospital%20Passport%20UPDATED%20WEB%20COPY.p


Um :?

You do realize we can't see that link, on you can?


Try this one then:
http://www.autism.org.uk/living-with-au ... sport.aspx

Better :D



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23 May 2015, 5:40 am

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

My biggest problem is that I do not communicate urgency well, or the level of pain that I truly have. I always come across like what is going on is a mild problem.

I happen to be very good at explaining symptoms. This is where noticing details comes in handy! The details help the doctor to come to a quicker diagnosis.

However, I often forget to discuss certain problems with the doctor (ones that aren't urgent, but are still a concern to me.) This might happen at physicals when I'm not going in for a specific problem.

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?

I had some problems with abdominal gas pains for years before it was finally discovered I had a problem with my gallbladder. When I finally did get it removed, it was because I had a full-blown attack and learned all about the symptoms on my own. I went to the doctor and said, "I think I have a bad gallbladder, and this is why:" Before this, I complained to the doctor about the gas pain, but I kept getting ideas on how to reduce gas. "Gas" is such a vague symptom, but that's all I had to say about it. I gave all the detail I could. I'm not sure whose fault it is that it took so long for the problem to be identified.

A few years ago, I had sciatic pain due to a disc problem in my lower back. I did not have a problem with misdiagnosis. In this instance, the problem I had was a long delay in proper treatment. For some reason, I was not able to get my back doctor to understand that this pain was SEVERE and causing real problems in my day-to-day life. At one point, she treated me like I looking for drugs. She was absolutely convinced that if I just kept going to physical therapy the disc problem would resolve. I could not get through to her how much pain I was in. I even cried at an appointment, but she just treated me like I was overreacting. When I finally did have surgery (which was the ONLY solution, in my case), she learned the problem was much worse than she thought and didn't show up in the MRI. I knew she was wishing she had listened better. It took 6 months of severe pain to finally get the surgery, and by the end of it I couldn't get out of bed without help.

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?

I second writing things down and bringing someone with you.

I don't know if medical terminology is necessary, but listing as many symptoms as possible is very useful. Doing one's own research is helpful for this. When I finally had my gallbladder out, I was able to explain the attack more fully to the doctor because I had done research. The more details, the better. The doctor will be able to sort out which ones are superfluous when there are so many, so include the ones that you aren't sure pertain to the problem or not.

I think it would be better to write down the list of symptoms and hand it to the doctor, especially if the list is long. It takes less time to read than to speak the same amount of words, even at a normal rate of speech, so it saves the doctor time. It also means one won't be interrupted while listing symptoms.

I prefer female doctors. Perhaps I am being sexist, but I have found that (in general) female doctors seem to be less hurried and listen more. However, my back doctor was female and blew me off.



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23 May 2015, 6:12 am

B19 wrote:
For example, ambiguity of questions like "is the pain sharp?" (What is their meaning of sharp? What does sharp mean applied to pain? Does it mean stabbing? Or do they mean is it the opposite of dull pain? And what is dull pain?


Sharp pain is a strong, puncture, short term pain - similar to the one you feel when you put a needle into your skin or cut yourself with a knife. It comes suddenly and can disappear just as fast or turn into a dull pain after a while.

Dull pain is pressure pain, as if someone was squeezing you - it's generally weaker than sharp pain but takes a bigger area. A common example are woman monthly pains or a toothache(the constant one, not the cold/hot reactive one). Dull pain can come in waves too(for example labor pains) but each wave grows gradually, not suddenly as the sharp pain.

Sometimes you can feel mix of both - for example when you fall and hurt your knee you will feel sharp pain of the cut skin surrounded by the dull pain of damaged muscles.



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23 May 2015, 1:00 pm

Quote:
One problem I have encountered is communicating symptoms and answering questions in the way they want.. For example, ambiguity of questions like "is the pain sharp?" (What is their meaning of sharp? What does sharp mean applied to pain? Does it mean stabbing? Or do they mean is it the opposite of dull pain? And what is dull pain?)

There has been so much miscommunication and misdiagnosis in the past that I now tend to say, "I'm sorry, I don't really understand what you are getting at". Though honest, this just seems to exasperate them"

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



This is exactly my problem too. A doctor once questioned me about abdominal pain, and I said "it's lots of different pains, some random and some at different times of the month, and extremely bad menstruation pain to the point of feeling like I was going to die". She looked confused, and said sharply "yes but what TYPE of pain? Where?" I said it was all over and then started to point out exactly where I had pain, what it felt like, when it tended to happen, and what I thought was the cause. She cut me off and still looked at me as if she had no idea what I was talking about, typed the medical name for "menstrual pain" into the computer :/. My symptoms corresponded exactly with endometriosis, but I actually went under the knife to prove it to THEM because they would not take my 5 years of infertility and 15 years of serious pain seriously. I told them I appear to function normally when I'm in pain, but they saw that as impossible (now I have my diagnosis I feel so validated).
The laparoscopy surgeon seemed extremely annoyed when he had to face me within an hour of my op to tell me i was right and even went to extent of lying- when I asked "was it mostly on the right, here?", he just said "No" and ended the conversation. I saw his medical drawing and it is exactly where I said it was. They seem to really hate knowledgable patients :/. 6 weeks later, when I finally got to ask more about the op, he would not discuss the endometriosis

I also talk about symptoms I know are very important, that they seem to disregard, and forget to mention things I later realise they wanted me to say. But I know a I am very good at diagnosing my pain accurately, so I just wish they'd listen.

Quote:
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?


I feel like almost every time I know something is bad, it is a massive, MASSIVE struggle to get them to understand, as I try to appear as pleasant as possible and I'm polite to them etc I think they get the feeling I'm there for a day out. Some of the things I have been fobbed off for I know now are part of autism, and are long-term problems which I may have been considered hysterical about (allergies, light sensitivity, losing my sense of smell suddenly etc), but others involving trips to A&E (campylobacter food poisoning, slowly-healing wounds and fume inhalation for example) were missed or not treated because they just sent me home thinking I was fine, which caused me further problems.

Quote:
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 yet, but I have only tried pleading with them, taking lists and reading from them (not giving them the lists- I will try this next) and I have been reduced to tears a couple of times (my nerves turn to mush after a stressful doctor-patient experience), which they did not react well to.
I hope my recent ASD diagnosis means I can expect them to take the comorbidities seriously and finally agree to refer me to a gastrointestinal specialist. If not, at least I have some sort of medical backing- I will take leaflets to support my concerns (one clearly states there is increased mortality from gastro disorders in people with ASD due to sensory problems and lack of communication of symptoms).

I agree this is an important and overlooked issue, and I believe more training needs to be given to medical professionals to help them understand how people present with symptoms differently than how you expect, and how continually sending these people away can cause serious mental health problems. The common "God-complexes" are just ridiculous and these doctors need a good shock.



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23 May 2015, 2:43 pm

I really relate to that. There have been times (too many) when I too have experienced a doctor's exasperation as if I am wilfully refusing to give some kind of answer they want or in the way they want - I get the "naughty child" frown and what I do say is ignored.

It is a very invalidating experience, and the worst experiences of being misinterpreted have been in the serious circumstances (the emergency department). Years ago I presented with double pneumonia - high temperature, struggling to breath, severe pain and coughing up bloody sputum - and was told to go home as I was probably "just tired as you are parenting alone". The 'social diagnosis' trip... I refused; so I was left and ignored all night. In the morning I could not breathe well enough to speak so grabbed the arm of a passing cleaner and would not let go, mouthing "help me, help me".. she rushed to get a doctor, I was rushed to a ward, where they immediately recognised I was in a very serious state; the charge nurse called the consultant who found out what happened and went ballistic. He said, "you nearly died". He forced the idiot who ignored me to come to my beside, look at the blood I was coughing up, and asked "is this what happens to people who are just tired?"
Then forced him to apologise.

So that terrifying episode fortunately turned out well - they nursed me back to health; but the mental scars were not so easily healed, and though this was the most serious instance of missed and missed diagnosis, it is still happening, and as my health needs are increasing with advanced age, frankly I am frightened of the ongoing initial dismissals of serious symptoms. A couple of years ago I was very ill and saw four doctors before the fourth diagnosed (correctly) that a stroke was causing my visual and other symptoms; the others trivialised or dismissed them. One seemed to think I was inventing them. I have had four minor strokes since.

If I get more serious problems I don't think I will even call an ambulance - I am tired of fighting the battle just to be heard. When I had cancer the cancer doctors DID take me seriously and treated with great respect, care and kindness - they were the outstanding exception (though I did not present at emergency, where I have received the worst and most callous kind of dismissal and invalidation for serious issues; I was referred to them via general practitioner). So I am now too sensitised to emergency departments and their typically callous behaviour to be able to go there - it's bad for my health...



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23 May 2015, 3:25 pm

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.