One of the puzzling things about autism has always been the disparity between the sexes. Boys have always been more susceptible than girls. This is not in itself unusual. There are gender differences affecting a whole range of conditions and, if this New York Times article is correct, men frequently come off worse.
But if boys are more susceptible you might have assumed that as the severity of the condition increase this disparity would become more marked. In fact you would have assumed wrong. According to this source:
The greater severity and lower frequency of autism in females has been cited as evidence for a multifactorial polygenic mode of inheritance with differential loading by sex, which predicts greater severity in the less frequently affected sex.
Greater severity is usually taken to include severe cognitive impairment as well and the greater the degree of cognitive impairment the closer the ratio between boys and girls. But there are problems with this model. David Skuse has argued that the association between cognitive impairment and autism is not because they share a common cause but simply because if you have both conditions you are more likely to be seen by a clinician and get a diagnosis. More able people may be just as autistic but have coping strategies that enable them to avoid a diagnosis. And if girls have better coping strategies than boys they will be disproportionately overrepresented amongst autistic people without cognitive impairment who are missed by the system.
Last week Woman’s Hour broadcast a segment on Asperger syndrome took up this argument and suggested that there may be as many girls as boys on the spectrum. Most of them are not getting a diagnosis because they present in ways that are unfamiliar to clinicians who are used to seeing the condition in boys. The programme is no longer available but Sunday’s Observer carried a two page spread on the same story.
Experts like Judy Gould and Tony Attwood cited by the Observer still believe there is a gender difference but they estimate that it is only 2.5:1. Asperger girls may be more passive than boys. They do not assert their difference or draw attention to themselves. Instead they observe and copy other people’s behaviour. Their special interests may be intense but are also likely to be more socially acceptable; reading fiction, following soaps, celebrity culture – the sort of thing that lots of other girls do – and so they do not stand out.
Conformity comes at a cost. The Observer quotes Tony Attwood’s estimate that 20% of anorexic girls are undiagnosed autistics. Then there is self harm and other evidence of psychological stress. There are important differences between men and women. They need to be understood and respected. But it does not help autistic women if autism is described as an extreme male brain syndrome. The Observer ends by quoting professor David Skuse who believes that:
if we can prove the ratio of boys to girls is as high as many of us suspect, it would be as significant a milestone in this field as the discovery that the condition is on a spectrum.”
Left Brain Right Brain 
I’ve suspected the same thing. That would explain why autistic girls typically have more cognitive impairment than boys.
One key criticism of Lovaas (1987) was this. There were too many boys in the experimental group, and too many girls in control group 1, which also showed the group assignment was messed up.
Incidentally, I found a study the other day which indicated that in multiplex autism families, females don’t have lower IQ than males.
Basically, in familial autism, the male:female ratio could be lower (although they don’t say that.) Actually, here’s another study that finds a “reverse sex ratio” in the siblings of autistic children who are found to also be autistic.
This, in turn, would explain something about the GR phone survey data (don’t laugh.) The male:female ratio in the group of unvaccinated children was closer to 1:1. Given the biases of the survey, I had suggested that the only way the prevalence of ASD in the group of unvaccinated children could be so high (3.6%) would be if it included many children who were not vaccinated because they had older autistic siblings. The male:female difference confounded me, though. Until now 🙂
I also wonder what this says about the male:female ratio of Hub autistics, which Jon Mitchell and others complain about. (Although I think that has to do with health and disability bloggers typically being female.)
This rings true for me, but then I am 1)female, 2)high-functioning autistic, and 3)from a family with lots of autism.
As a child, I knew I was not like the other children, what with my multiple imaginary friends (I still have many of them, as it happens), the fact that I was smarter (I have an IQ of ~130), and the fact that I really, really liked fiddling with stuff. In short, I was a highly imaginative high-functioning autistic with a penchant for stimming. However, I really didn’t get why I couldn’t leave the classroom when the lesson was boring (I did this repeatedly, to the consternation and rage of my teachers), why I couldn’t use the boys’ room when the line in the girls’ room was long (I have no brothers, and the fact that boys and girls are not the same in a basic biological sense didn’t really occur to me until I was about 10), why it was rude to say things that everybody knew, and many other things. So, one day, my parents sat me down and said that yes, society didn’t make sense, but I had to live in it. They gave me a list of rules and I essentially still live by them today.
One thing I notice, though, is that the idea that I might be autistic never occurred to anybody. At the school’s insistence, I was tested for ADD/ADHD, but the shrink said, “Well, she gets good grades, and besides, she’s a girl.” Also, once I got the idea that really, I couldn’t take my shirt off on a hot day just because the boys could, I blended in. I was simply the talkative blonde who got good grades. I became invisible. I was not diagnosed until I was 20 years old.
These days I occasionally encounter an organization for autistic people in my community, but I don’t feel like I really belong there, both because many of the people are low-functioning (by the way, I really don’t like the “high” and “low” functioning terms!) and also because it is overwhelmingly male. I, as a woman, stand out, and the others don’t get me (of course, I don’t get them, either) – because male and female autism are very different.
Incidentally, totally as an aside, I think something in the coding for the site is off. It made my browser crash several times – I never could get it to work in Firefox.
I can’t change to my user name so this is Bullet. As a female diagnosed with Aspergers I agree with a lot of the article, but there are one or two aspects that I must question. The first is the concept that females are aware or indeed want to copy other people’s social behaviour. Not all the time. For example, if I go to collect Jacob from playgroup all the other mums are talking amongst themselves and I’m counting the letters on a notice, or looking at the leaves. Afterwards, in hindsight I might think that the theory is to talk to the other mums. At the time I focus on other things. I have people around me who know what I’m like and accept me. This has changed a lot from when I was younger and my reactions and behaviour to things met with either bullying, being patronised or being called stupid.
I didn’t get diagnosed until I was 31 for two main reasons. The first one is that because I do not think most of the time of what I do in relation to other people and because I can not ask for help very easily I never thought that I was different to other people. If you mix with very few people and you can’t tell people what you think and feel about things most of the time and you are passive and have good receptive language that can ensure you can sometimes slip under the radar. Eg I could not ask for painkillers when I had a painful head for two weeks at the age of 17 after the family dog bumped her head against mine. Now, if I can’t say I’m in pain or show I’m in pain then other people aren’t going to pick up that my being even quieter than normal is down to my being in pain. So they presume I’m ok. Or that people presume you are coping fine because you don’t show you are upset or worried about something. The other reason is that my mum did not want me labelled and so she deliberately lied and covered up some things and made other excuses with the result that very little was done. I asked her later on if she never realised that my probable selective mutism, my social difficulties, my repetitions and obsessions along with various other factors had all been connected and she said that because I could talk and could understand she didn’t connect all the other things up. She knew about them of course, but she never fitted them together. She told me once when a paediatrician was asking about me “oh no, I could see where this was going. I could see special schools for you and I didn’t want that.”
When I finally did go to getting myself diagnosed there was no trouble. No doctor/psychiatrist has ever questioned that I’m on the spectrum. I was told that ironically one reason I’d “managed” was that I don’t think about how I appear to other people or what I should do in relation to other people. So I wouldn’t fret about not fitting in, for example. I asked my husband recently why he’s never found it odd that I’ve never phoned up anyone for a chat or gone into town with a mate for example and he told me of course he knew I wasn’t doing these things, but that I was just “me”.
In terms of impact of my life well, I’ve been very lucky to meet someone who does like me for me and who is of a similar temperament in a lot iof ways. And I can work, but there are restrictions to this. Firstly I must work either on my own or in a small office environment and I’ve never done a job that would tie in with my academic level of qualifications. I can write a report or sort out a new filing system, but I couldn’t work in a call centre or stack shelves in a supermarket easily. I could manage myself but never manage other people in a work capacity. I can make online friends but not maintain them in real life. I have never flirted, made eye contact or thought about what I should say or do on a date. Most of the conversations I have even now with my husband are not about myself or him, but about something like the Ancient Romans or the medieval Church. People presume that because I’m married I must be a whizz at dating and how no signs of being any different. I’m not. If my now husband had not talked to me I would never have even noticed him sitting next to me. What I have is a fantastic mostly platonic relationship that sometimes goes a bit further. If I sit down and think about all the things I theoretically should be able to do given my age and academic qualifications there is a big gap between what I should be able to do and what I can do. But I don’t. I focus on what I can do.
Sounds like another call for ‘more research.’ I thoroughly enjoyed the Woman’s Hour article. Thank goodness for ipods.
Cheers
This is also something that’s seen in special ed services in general. Fewer girls are referred for screening, and those who are tend to be the most severe cases.
There’s a nifty chart here: http://www.infouse.com/disabilitydata/womendisability/2_4.php It’s a bit old, but I think it serves the point.
I think part of it is that girls react differently, but part of it has to be referral bias. And if everyone assumes autism is rare in girls, that’s only going to increase the problem.
In working with many children with autism, I definitely see this differences between boys and girls. I wonder if perhaps autism in boys and girls is clinically different? Of some of the teenaged students I know with Asperger’s, and I’ve noticed the boys tend to move towards more inappropriate and often offensive behavior, whereas the girls are more shy and awkward. What other differences has everyone seen?
I strongly suspect the differences are mostly going to turn out to be social. The social expectations for girls and boys from about 6 to 18 are very different.
Consider that teenaged boys without Aspergers are encouraged to be rough, macho, and aggressive. Is it any surprise that boys making a vague attempt to model this, without picking up on the details, come out as inappropriate and offensive? Indeed, they may be aggressive simply in reacting to the aggressiveness of other boys. The girls are experiencing a totally different social environment, with the other girls behaving totally differently. Look at girls in an all-girl street gang and boys in an anti-macho environment (if you can find one) and I suspect you’ll find the girls with Aspergers being inappropriate and offensive, and the boys being shy and awkward.
Having been raised in very…. unusual social circumstances, I seem to fit almost everything people describe for typical “girl” Aspergers. But I was a boy with Aspergers. One who, as a teenager, got along with girl society. Treated as “one of the girls” at times; never as “one of the boys”.
I think the social rules of teenage boy society in the US are exceptionally perverse, insane and difficult to understand. Those of teenage girl society are bad enough, but those of teenage boy society involve mock hostility which is supposedly (they say) not hostility, which is particularly difficult to understand. So the social comprehension barrier may be higher for boy culture than for girl culture — resulting in more “problems” for boys.
More mildly Autistic people may have the same issues, but also have coping strategies that cause them to miss diagnosis.
FTFY.