Here’s something I missed last week in Newsweek:
Because they may have different symptoms than boys do, some girls with Asperger’s syndrome don’t get diagnosed
It’s not uncommon for girls with Asperger’s to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don’t think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger’s manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger’s seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.
It’s got me thinking about sex difference in medicine. The first time I presented with the symptoms of MS, my doctor told me I was having a nervous breakdown. I said, ‘Fuck you,’ and flushed the tranquilisers he gave me down the toilet. The second time I was told I was stressed, and asked if I had problems at home. (I said, Yes, if too many girlfriends counted as a problem. Then I said, Fuck you.) This kind of stuff continued off and on for nearly ten years.
It took nearly ten years to get my MS diagnosis. Most of the women I’ve talked to tell me the same thing. I was lucky–I never believed for a second I was crazy. I know many (many) women who ended up on heavy-duty drugs and/or therapy and were convinced they were mad. The men I’ve talked to, on the other hand, were diagnosed briskly–in about half the time–and taken seriously from the beginning. (I have no data to support this statement. It’s purely anecdotal.) Last year, I also came across an article fretting about the fact that fifty years ago the female/male ration of people with MS was 2:1 but is now 4:1. ‘More women are getting MS in increasing numbers,’ they said. I think they’re wrong. I think more women are now getting the right diagnosis, especially young women.
Many of women’s complaints have historically been dismissed as hysteria. It’s particularly easy to do that with uncertain teenage girls. Now doctors–many of them women–are finally learning to listen, finally beginning to see women and girls as reasoning human beings.
There still a long way to go, of course, but I’m curious about readers’ thoughts and experience. How do doctors treat you?
Nicola Griffith 
I’ve heard of this kind of thinking happening over and over and over again with ovarian cancer. It’s one of the reasons that it has such a high death rate. Many, many women have gone to their doctor repeatedly with the symptoms (such as abdominal pain, bloating and constipation) and told by their doctors that it is just stress or depression. They keep going back and the doctor keeps ignoring them.The reason so many women die from OC is that it is so often not diagnosed until the latter stages.In my mind this is the worst kind of malpractice.True, the symptoms could be a lot of things, but when they persist, it should be a huge red flag to any doctor. More women should be made aware of what to look for and given appropriate (vaginal ultrasounds) tests. There is also a blood test that is not conclusive, but good to establish a baseline (CA 125). It’s not always the dr that ignores the symptoms, sometimes it is the woman herself. I think because our culture has taught her to think that way.That stuff makes me furious. Furious.I’ve experienced it with my own body on a much more minor level. When I was first having knee problems I went to one of the top sports dr.s here in LA. He wanted to do the surgery immediately. I didn’t have insurance, so I waited. Once I had the insurance for a time, I went to another dr. He told me just to stay off of it, “…don’t go shopping for awhile.” I couldn’t believe how clueless this guy was. He didn’t want to do the surgery because he didn’t think it was much of a problem for me, and now I’m glad I didn’t do it then. But he was no help at all because of his attitude towards me as a woman and what he thought my life was like – despite my telling him differently.
Ugh. The Doctor Experience. I’ve only been going through it recently—the last five years. It sucks. Before that, we were raised far away from clinics and traditional medicine. My mom’s pretty suspicious of physicians. In her youth, they stuffed her with wrongly-prescribed antibiotics until she lost all hearing in one ear. Horror stories: doctors force-fed a bunch of experimental drugs to one of my aunts to stop her nausea, when all she needed was a pregnancy test. When the doctors realized what was really going on, they told her she needed an abortion because there was no way she’d have a healthy baby after all the crap they gave her. So she went for it. I guess my cousin would have had a twin, because she was still pregnant after that one abortion. Pfff!My sister is the only one in our family who goes in and out of clinics all the time. She has a temporomandibular joint disorder and is always in pain. So far she hasn’t had any luck with any of the traditional treatments she’s gone for. Doctors usually tell her she’s under too much stress. Yep, they’ve also prescribed her antidepressants, which I told her to throw away.She once dragged me with her to the otorhinolaryngologist because she was having trouble breathing. She suggested they also had a look at me. The doctor freaked out when he saw how useless my nose was and ordered a bunch of x-rays of my head and found out the bone around my upper-left jaw was reabsorbing itself. So that was good. I probably wouldn’t have a pretty face to smile with if it hadn’t been for that. Still, he told my sister she was just stressed out, that her nose and respiratory system seemed perfectly functional. I do believe she feels the pain she says she feels, that there is a reason for it that hasn’t been properly diagnosed. I’m afraid of Canadian doctors. In Mexico, they’re after your money. So if you request a pap smear, they give you a pap smear. You don’t have to escalate your way up the food chain convincing your family doctor to send you to whatever specialist you need to see. The last time I suggested a Canadian doctor it was time for a pap smear, she asked me, “Are you having sex with your husband?” And I said, “I don’t have a husband. Yes, I’m having sex with my wife.” To which she replied, “Oh, then it doesn’t count. I don’t think you need a pap smear.” Seriously… does she even know how EVERYWHERE HVP is? And that pap smears should be part of routine check-ups? Ah, but I’m a married lesbian freak, so I don’t count. I should have looked for a gay-friendly physician, but I really just felt like saving all my medical needs for when I go to Mexico. That’s what I’ve been doing ever since. Not that Mexican doctors are really better. But there’s the money incentive. Which can also backfire. Like the last time I went for an eye check-up and the oculist said, “You have a slight problem most Mexicans have. Your eyes are too small, so your face looks sad. But we could schedule a surgery for next week and cut a bit of your eyelids to reshape them. Then your eyes will look bigger and prettier and…” I told him to fuck off and stormed out of the room. My brother doesn’t go to the doctor. He just sticks to whatever homeopathy or acupuncture my mom gives him. He’s the healthiest of us all. My dad is very happy with his doctors, so I guess they’ve never told him that he’s crazy or stressed out and they’ve never prescribed him antidepressants. His Ménière’s disease was promptly and accurately diagnosed and treated. So, yeah, I agree there’s a lot of bias against women going around in the Med World.
Boy the crazy stressed out diagnosis sounds familiar, Unlike you Nicola, I wasn’t strong enough to say fuck you until they had me on said tranquilizers and in therapy. After a month I told the Doctor fuck you and went to a nutritionist who correctly diagnosed that I had a parasite. I am much more forcful when I go to the Doctor now.Hopefully this attitude of the hysterical female will disappear completely.
It makes me so mad! There is a story I remember from the UK that Parliament was considering a bill on a birth control pill formen. Some MP stood and said, “It would be too dangerous to put those chemicals in a man’s blood.” It’s alright for women though, I guess.
jennifer, I heard a story just a couple of weeks ago of a woman who went to her doctor with stomach torsion. They told her she’d eaten too much. She went to another doctor, who said she shouldn’t be such a wuss about a stomach ache. She called 911. They saved her life–barely.karina, I think it’s changing, slowly. Not fast enough. But regarding TMJ I read just this morning of a woman’s experience of a ‘miraculous cure’: vitamin B12 injections. I can’t think of a reason for this, but she’s convinced it’s what did the trick. FYI. But, my god, the rudeness of someone offering to ‘fix’ your eyes!rory, wow, a parasite. That’s not something I’d think to look for offhand. I’m glad you got tough and got it sorted.barbara, oh yep, double standards r us. Just look at Viagra and health insurance…
Yep, < HREF="http://www.cheryl-morgan.com/?p=2281" REL="nofollow">blogged about similar stuff<> last month. The key finding of the study I was talking about: “if the patients also complained of suffering from stress then the men were 2-3 times more likely to be diagnosed as ill whereas the women were much more likely to be told to stop being so neurotic and go away.”
My ex’s sister has MS. She is in her forties now. I remember well when she was first diagnosed-in her mid 20’s. My father-in-law, as her sister,and her husband, did not believe it. They said she was “just lazy.” Forget they did she was a cheerleader,an honor student, a homecoming queen, athletic,and a beautiful young woman inside and out. Years later, when she could only bump on her bottom up/down the stairs, did they finally realize there really was a problem and took her to someone beside the town doc.Although I have been divorced from her brother for many years, she and I still keep in touch. Her youngest daughter recently got married. She was wheeled in but was able to stand for photos. She has some cognitive issues as well. And she is still very beautiful.I have never forgotten this.
cheryl, intertesting study.linda, yep, my father took years to believe I was sick. I just ignored him. It’s a useful strategy: ignore those who are wrong :)
The deacon at the church I used to attend was diagnosed with her MS finally at the age of 70. She had had symptoms since she was 32 but her doctors never took her seriously. She is now 83 and stronger than she was at 40 because she has very good doctors who pay attention and listen to her.
15 yrs of drugs before they decided I had celiac. And it wasn’t diagnosed by a doctor, but by Brian Stableford. Then I demanded the tests and the rest followed,I have a girl with aspergers in one of my classes. It’s so obvious I don’t know how anyone *could* misdiagnose it, but I think she’s having a harder time than a lad would because the other girls expect a girl to be higher functioning socially.
clindsay, it’s amazing how something as apparently trivial attention by one human by for another can save and vastly improve lives.rackstraw, I worry that I might be celiac. My mother was; I had the book test but it came back negative. I’ll probably have it done again in a couple of years just to be sure. I hope Brian S duly gets his Christmas cards :)
“Wandering uterus trouble again, eh?”Health care is a messed up situation. A lot of people I know are very picky when choosing their doctor or their free clinic, but then, I live in New York where woman-friendly, gay-friendly, trans-friendly options are around.Of course, that doesn't help with funding…A couple of friends of mine just have to move from one of the Carolinas to (probably) California– one has cystic fibrosis & her insurance just dropped her. You know, for being too sick. So now they are scrambling, looking for alternatives.
That reminds me of this:http://www.autismvox.com/girls-and-getting-a-diagnosis/#comment-520422“…You know how some self-proclaimed ‘nice guys’ throw themselves at women who throw themselves at male jerks and claim ‘we’re finishing last, all women want jerks instead of us!” as if the other women, their female counterparts, don’t even exist?“I wonder how much of the denial of women and girls having ASD/AS is the same kind of thing. You know, people claiming that guys with ASD/AS finish last because the cheerleaders pick the Big Men On Campus instead and ‘women can get sex whenever they want.'”
Thanks for the link. Perhaps I’m being a little dim today but I’m not seeing the connecting thread.
I’m coming to this very late; I stumbled upon your post when searching for this very article about Asperger’s.
I have MS. Lesions in my brain in a very standard MS pattern. Symptoms for two years. Need crutches/wheelchair to get around most days.
I still have no diagnosis, and the MS doc keeps trying to get me to take uppers for the exhaustion, and Xanex for . . . I don’t know what for. To make my legs suddenly work? I refused it all.
I am ashamed to say that I do occasionally buy into the idea that I must be crazy. A very sweet coworker of mine tells me his mother, even AFTER her MS diagnosis, has had doctors treat her like she’s crazy. Another friend of mine was told by her doctor that her blindness was HYSTERICAL BLINDNESS BROUGHT ON MY PREGNANCY. I am not kidding.
oops. Brought on BY pregnancy.
Welcome to the blog. (Have we met? At WisCon maybe? Maybe your name is familiar from your fiction…)
I’m sorry to hear about the MS. It pretty much sucks. Sorry, too, that you’re unhappy with treatment suggestions. I can recommend exploring info on < HREF="http://asknicola.blogspot.com/2008/03/doctor-writer.html" REL="nofollow">low-dose naltrexone (LDN)<>. Also, I’m happy to chat off-blog if you would find that useful.
Just email me: asknicola2 at nicolagriffith dot com.