Autism in girls going undiagnosed due to gender bias.

So sayeth the Guardian.

I can well believe this. Autism and ASD are probably more obvious in boys given the effects on their social skills; girls may well be better at adapting or covering it up. There’s a certain point on both where it becomes obvious - and I know people of both sexes who are clearly autistic - but ASD is a sliding scale, a spectrum, and a quiet girl could easily slip beneath the radar, much more easily than a quiet boy.

Here’s hoping that all those who need help get it, regardless of sex.

Yep. I agree. The working understanding of what the condition is has effectively been tailored to describe boys’ manifestation of it, not girls’.

April was Autism Awareness Month. I realized that I barely understood what autism was, so I Googled it. Found the Autism Spectrum Quotient test, an assay widely used in the initial stages of diagnosis. I love to take multiple-choice tests, so I took it. Out of a 50-point maximum score anything over 32 is considered “significant signs of autism.” I scored 42.

I’m not going to pursue a professional diagnosis because I have nothing to gain from it, but it was a huge mindfuck for me. So many pieces fell into places. I am a woman and I am good at masking, but it drains me. I have sensory issues and other physiological issues that fit the profile. I have always had social development problems that fit the profile. I have attention and interest and blah blah blah issues that totally 100% fit the profile. I’ve even, in hindsight, had episodes of autistic regression that I mis-labeled depression because I didn’t understand what was going on.

I’d like to note that the ASQ was developed by Simon Baron-Cohen, who is somewhat on the autistic community’s shit list. For a grounding in the understanding of autism as it’s regarded today, I highly recommend Neurotribes by Steve Silberman.

But yeah. I’m a woman. I’m pretty damn sure, for all intents and purposes, that I’m autistic. I’m married, I have a kid, I got a PhD, I’ve held jobs. But I am far from normal and have far from a normal capacity for enjoying or even dealing with “normal” stuff. And I finally have a name for it that isn’t “I’m a neurotic asshole.”

It’s damned comforting, and fuck anyone who tries to take it away from me.

The reality is that it just presents differently. The obvious cases get diagnosed pretty easily, but the borderline cases are much harder in girls. Some might be gender bias, but a lot of it is just brain development. Girls as a whole are much more socially motivated than boys. Social cues are one of the easy first signs of autism in boys. They avoid eye contact and make little or no effort at socialization - it’s a classic sign and pushes you into the autism camp as opposed to some other sensory issue. Girls with autism aren’t that way. They may have reduced eye contact, but it’s still there. They may be socially awkward, but they aren’t completely avoiding socialization. It leads to a lot more ambiguity. Do you want to be diagnosing a girl who maybe is a little bit shyer than other girls as autistic when she’s not? That’s kind of where practitioners are on it.

The reality is that autism spectrum disorders are very hard to diagnose in the first place for many kids and especially when they are young. My wife is an OT that specializes in autism with 15 years in the field and there are many times when she’s just not sure. Being a bit strange isn’t a disease ( or else half the people of SDMB would be diagnosed :slight_smile: ) and girls with autism will frequently when they are younger just display as ‘a little bit off. I know that there’s something there, but I’m not sure what.’ as opposed to boys who display as ‘completely unable to exist in a social environment.’

Father of a daughter on the spectrum chiming in.

There is a saying “if you’ve met one person with autism, you’ve met one person with autism.” Autism is a broad spectrum. If you met my daughter, she avoids eye contact, and the socialization. Even today at 13. I don’t think you can say boys on the autism spectrum do this and girls do that. Maybe there are some testing biases, and maybe there is some presentation differences, and maybe not at all. The collective we don’t understand autism very well, and certainly not the causes.

One of the tests performed during my daughters diagnostic at age 5 was the doctor blew up a balloon, held it out at arms length, and after about 1 minute let the balloon go and fly around. A typical child will glance to the face of the person holding the balloon, back to the balloon, back to the face, back to the balloon in anticipation. My daughter simply stared at the balloon and never to the face.

IMHExperince, There is one HUGE delineator for the autism spectrum. Those with “normal” verbal skills and those without. Those with normally developing verbal/communication skills may learn to cope much better because they can communicate. Imagine those that can’t speak or have much in the way of communication skills. It’s like being locked into a confusing world you don’t understand, and as your body grows you still lack a way to communicate. It’s heartbreaking actually. Thankfully, my daughter slowly developed non verbal communication, and at age 5 1/2 started to be able to speak single words. At 13, she is not a great conversationalist, but she can communicate, needs, wants, understand answers, and sometimes can express herself pretty fully. Asperger’s isn’t formally used any longer, but as I understand the previous usage, Aspies had more or less normal speech development and autism did not. Now both are on the same continuum of “autism.”

Sattua, you may have a lot of the indicators but testing with an experienced professional versus self testing may not reach the same results. Or to say another way, having some of the traits at some level, doesn’t necessarily put you on the spectrum. Or it puts you on the high function side of the equation, and as an adult frankly I’m not sure there’s much you can do about it beyond self-awareness (would ABA therapy be beneficial at this stage of life?). I’m just curious if you don’t mind answering two questions:
-Did you develop speech along a normal progression as a child? My guess would be a normal development, thus giving you a much greater ability to cope.
-did you have any friends growing up? This isn’t a trick question. Children on the spectrum rarely have friends, and if they do, it’s not how most of us would traditionally define a friend. (My daughter has no friends. Thankfully she has a wonderful twin and great older sister. My daughter’s “friends” are actually her siblings friends that she has some interaction with by extension. she has no traditional friends among her classmates.)

As I said in my post, I don’t see any point in pursuing professional diagnosis at this point in my life. I’m not seeking accommodations in a workplace and I am satisfied with most aspects of my life. That’s the nice part about being old and rich.

  1. My speech development was, if anything, ahead of schedule. I did and still do the thing where I use a $10 word where a $1 one would work. Yes, of course that made my life easier, and yes, of course I am on the high-functioning, wishy-washy end of the spectrum.

  2. I had few friends. Usually only one at a time who I might consider inviting over to play. My mantra was that if I had someone to sit with at lunch, I was okay. My social life really blew apart during adolescence, when my peers matured out of my league. Since then my “friends” have almost exclusively been older men, mostly neurodivergent in one way or another. We moved to the Puget Sound region three years ago, and I can honestly say that there is no one I’ve met here who I could call up to invite to coffee.

I would like to point out, China Guy, respectfully, that your post contains a soupcon of exactly what The Guardian’s article is getting at. You are gatekeeping autism according to the presentation you learned from medical professionals, focusing on aspects that present most often and most strongly in boys, and which your girl happens to present strongly also. Part of the “girls’ differential presentation” includes tendencies to be excellent at masking, therefore to more superficial socialization, and better verbal skills. There is more to it, though. There’s hypersensitivity to certain kinds of stimuli, melting down when overstimulated, stimming, executive dysfunction, attention problems and imbalances, fail to recognize social cues, the list goes on.

I haven’t made a new friend since I met my husband so I am, like I said, socially isolated right now, but I do interact online a lot (because there are no physical cues to miss and it’s totally normal for people to drop out of conversations for “reasons”). Mostly I use Twitter. When I first took the ASQ and was discussing this stuff there, all four of the women I would consider to be my “Twitter friends” DMed me that they had recently learned the same about themselves. Two have been professionally diagnosed, while two, like me, just consistently score in range on various assays. A couple of younger family members I particularly like have been diagnosed, too. We are drawn to each other.

Thanks for this. I just scored 28, which put me in the Asperger’s part of the spectrum. Figured as much.

The school psychologist put me on the spectrum around '77 but my parents neglected to submit me for further tests to find out exactly where on the spectrum.

The bias easily could be correct. Maybe this is a quibble over the higher functioning part of the spectrum versus more towards the low functioning end. Or as Senoy pointed out borderline cases.

BTW, if I didn’t make it clear, this is just one father’s experience with a daughter on the mid to low end of the spectrum. We are part of a very large Chinese speaking autism family community in the Seattle area (A Family aka 西雅图A娃家庭), around a fair number of kids on the spectrum, and look forward to discussing this topic with the other parents. FWIW, all of the therapists, the ABA program lead, teachers and all of the autism medical professionals we have interacted with are women (with the exception of one of several neurologists).

Sattua, appreciate both your replies and the candor.

I wasn’t officially diagnosed with autism until I was 32 years old. I was always an oddly-behaved child, and my parents/teachers/other adults did try to get me help, but nobody suggested I might be autistic, maybe because I could talk more or less normally and do schoolwork, etc. Wasn’t good at socializing, and had (still have) sensory issues, among other autism traits.

Part of the reason I wasn’t diagnosed as a younger adult is that someone, somewhere, somehow had mis-diagnosed me with schizophrenia (?!) and it somehow became my official diagnosis. I’d still like to know how that happened.

Please make certain that the person doing the diagnosis is prepared to order medical tests, especially an MRI, before deciding a child is autistic. My son was misdiagnosed very early on and, had such tests been done, would have received a correct diagnosis of a rarely reported brain injury it is possible that some of the affects of this disorder could have been lessened. Alas, the “professionals” who diagnosed my son never considered this option

I’m hindsight i should have been more vigilant, that is my burden to carry. But perhaps let this anecdote serve as a guide

I tried the test and got 29, essentially the same as Skywatcher. It didn’t surprise me. I really have only one really close friend and a few distant ones. But I talked early and have some social skills. Dating, especially calling girls on the phone, was painful. Once I married, I put all that behind me. At my age there is not much to be done about it.

It doesn’t surprise me. While my daughter was diagnosed at an early age due to those severe markers two years ago she was feeling depressed so I got a referral to a pediatric therapist. It was actually a child psychiatrist who advertised “wholistic healthcare” (his spelling, and if you doubt it you can google this term and Memphis psychiatrist; he’s the first hit) who told me after a seven minute intake, “I don’t believe your daughter has autism. It’s really more of a male condition. I think she is just coddled and has low self-esteem”. This was after two years of testing to rule out other conditions and several years of therapies AND an IEP signed by the school psychologist every year regarding her condition. I mean, what do you do with that kind of reaction? I walked out and never went back. Sadly he is the only child psychiatrist in my city that takes my daughter’s health insurance so she goes without treatment. The school counselor does talk with her every few weeks at least. He’s autistic too so that helps a lot.

I know that I was diagnosed with something called "nervous child (or it may have been “girl”) syndrome when I was a child in the early 80s. I had panic attacks, I had bad eye contact and I was called “high strung” and shy by teachers. I had serious auditory processing issues and always got in trouble for saying “huh? oh”. I was made to sit on my hands because when I was trying to focus on school lectures I would tap my fingers and wind my wrists. Any school counselor these days would probably recognize it for what it really was but I was given all these labels and treated like a behavioral issue. Conform, that’s all they wanted.

Even working with autistic students for the school system a few years I didn’t think about it but a a few years still after that I was talking to my daughter’s OT and mentioned I worried that she copied my behaviors and didn’t know if it was “really autism or picking up on my weird quirks”. She asked if I’d ever been tested. I never once thought about it before that. I HAD been diagnosed with five other conditions that I questioned all along, because none really fit … and thinking about it all I realized that if you added all those up based on my symptoms it came down to autism. I got an assessment and a preliminary diagnosis. I can’t take it any further though, because I don’t have insurance, nor do I have money for the host of tests I’d need to rule out other conditions. I had to pay a developmental psychologist who really focuses on children to even get that because there isn’t ANYONE who diagnoses in adults around here. She used some long panel that took 2 hours and she said it was her professional opinion that I am autistic but that in order to get a medical diagnosis I’d have to do those further tests. I expected this because my daughter went through the same. The problem with further assessment for adults is that it’s complicated by the need for school records and pediatric medical records and the perspective of people who knew me as a child. I have none of those things anymore. At one point I had a single paper from third grade tucked in a report card with this "nervous child syndrome"diagnosis with some notes on eye contact and being high strung but that paper disappeared a long time ago.

What is helping me more than anything now is being a part of support groups with other autistic women. It could not be more obvious to me now that I’m autistic and I finally feel like I’ve found my tribe. Better still, some of them have been to therapists and offer valuable insight and suggestions to help me live a better life. Like I’ve stopped balling my fists to stave off stimming. I have been teased for many years for my wiggling and wrist winding so I’ve always tried to hold it back in public. Now I let it go and I find I don’t have panic attacks when I get to my car, like I used to be so wound up by the time I got done grocery shopping I usually cried all the way home. Every single time it was an ordeal, especially if I was alone. These days I let myself go and I’m even able to talk to cashiers whereas before I probably seemed rude and shifty because I couldn’t look up. I’ve learned how to look up without eye contact, which of course should never be forced but I’ve found not making some sort of effort makes non-autistic people uncomfortable. And honestly a lot of the treatment therapies for autism ARE about making non-autistic (allistic) people more comfortable.

If you haven’t read Steve Silberman’s book Neurotribes I highly recommend it. There was a long time in the mid-late 20th century when cases of autism were diagnosed as “childhood schizophrenia.”

And China Guy, I appreciate your very level-headed response. I’ve avoided this thread since my last post because I was afraid I was about to be shouted down. Phew dabs sweat from forehead

Some autism was indeed described erroneously as “childhood schizophrenia”.

As an older male on the autistic spectrum, I feel sure that girls are being under-diagnosed.

It was Simon Baron-Cohen who came up with the theory that autism is “extreme male brain”. He’s completely and utterly wrong, but this idea has percolated through the psychological and medical professions. It’s the main reason that professionals think of autism as being ‘a male thing’ today and don’t like to diagnose females.

My problem as an adult is that I’m so good at pretending to be normal that it’s difficult for many people to accept that I have autism at all. I can hold a conversation, look people in the eye to some extent, make social chit-chat, remember to ask people how they are, ask them about things that are important to them that they mentioned last time I saw them, etc. - but it’s just an intellectual process for me, for the sake of dealing with other people. I refrain from stimming in company, I don’t react to loud background noise that disturbs me, and so on.

But all this takes it’s toll. It’s a strain for me to be around other people because I can never relax. I always have to put some attention on appearing and acting ‘normal’. I’ve done this since childhood.

I’ve been accused of being lazy my whole life, because people can’t see how hard I’m trying, and how much I’m straining just to get by. I never look like I’m straining. I look cold or silent or withdrawn if I don’t have the energy to keep up appearances. People think that because I’m obviously intelligent (post-grad degree in physics, a lot of experience in computer science, wide-ranging knowledge of many subjects) I can cope, but I can’t.

As a result I’ve suffered from severe and chronic depression my whole life, which has brought its own problems. And people understand depression as little as they understand autism.

My situation now is that I can’t handle working in an office environment any more, and I can’t handle commuting. I’m utterly alone, I have nothing, and I live precariously from month to month doing freelance programming from home. I don’t even want to want talk about how bad my situation is, and this isn’t the place for it anyway. Sorry for the rant.

Glad you are back! Sheesh, reading emotions in person is hard, figuring it out on line has it’s own challenges, no? :smack: So, to be clear, absolutely NOT being snarky, questioning your situation, or experience. In fact, very eager to hear from you. AFAIK, I’m no where near the autism spectrum, but I think I learn something from everyone who is. Temple Grandin kinda started the voice of experience. Which maybe opened the door for The reason I jump, Carly Fleischmann, and others including Sattua on this board.

“High functioning” and “low functioning” are rejected by the majority of the real experts. The fake experts rely heavily on “functioning” descriptions. (The fake experts are the ones who are not autistic themselves.)

You don’t need to break your arm to be a bone expert. You do need to be autistic to be an autism expert.

Gotta cite? I would gladly use any terminology you think is superior to “functioning”. Autism is a continuum, with people on various parts of that non-neurotypical continuum. How would you describe it?

My view, if you can argue this on a message board, then by definition, you are functioning. Contrast that, with say my daughter, who doesn’t understand the concept of a message board, has serious challenges writing a complete and coherent sentence, and can’t even define “functioning”. Again, happy to use descriptors you recommend.

The BBC have followed up with this article about a young cartoonist. I wish I had even an ounce of the tons of talent that she has.

I’ve been having thoughts about that lately. Apparently being queer (in all its various ways) has some amount of positive correlation with autism. One of my autistic women friends likes to talk about being genderfluid and dressing masc and whatever–but the truth is she’s a long-haired woman who likes to wear overalls (the tight sexy kind mayiadd) and doesn’t like makeup. I only know her online and I’m not about to quiz her about what genderfluid means to her, but as I know her, it just means that she isn’t stereotypically super-girly. And the same applies, in some ways, to me. As a young adult–probably into my thirties and maybe still today–I simply didn’t understand gender dynamics. Why COULDN’T I be awesome platonic buddies with young men??? Why COULDN’T I argue academic points with older male professors??? I’m not saying these things can’t be done, but I think normal people would have been aware of the likely weirdnesses surrounding them.

I mentioned autistic burnout earlier in this thread. That’s when you’ve been masking for so long that you sort of collapse and just can’t do it anymore. Sounds like, as you age, you’re falling more and more into that, which is understandable though very frustrating in a world that doesn’t accommodate it.

I have retreated from the world too, though I’m very lucky to be in a situation where that is fine financially.

I had a period of real burnout while I was pregnant. The bigger I got the less I wanted to go anywhere, to deal with anything not immediately under my control. The last trimester probably the only places I went were to doctor’s appointments and to the corner store. I rotated the same two outfits every other day. I couldn’t bear to wear contact lenses or makeup, to be hot or cold, to be hungry or tired or anything. I just wasn’t putting up with it. So I stayed home and didn’t see anyone but my husband.