In my last post, I said that I think researchers have overlooked Asperger’s syndrome in females, and that’s the biggest problem I have with the “extreme male brain” theory of autism. I’m not the only one that thinks so. Recently I read a very interesting article online from the British Sunday paper The Observer:
Doctors are ‘failing to spot Asperger’s in girls’ by Amelia Hill, April 12, 2009.
The article quotes Dr. Judith Gould, director of the UK’s National Autistic Society. In 1979, she and Lorna Wing co-wrote a paper that helped to begin the process of defining Asperger’s and the autism spectrum. The British government is forming a strategy on dealing with autism, and Gould is pushing for an effort to pay attention to girls on the spectrum.
“We’re failing girls at the moment. We are doing many thousands of them a great disservice. They are either not being picked up in the first place, but if they ask for help they are being turned away. Even if they are referred for diagnosis, they are commonly rejected.”
One problem that you can run into in science is that forming a theory requires making assumptions, and if you’re not careful, those assumptions can be self-reinforcing. If you go back to the posts about defining Asperger’s, you’ll remember that the syndrome is defined by a set of outward characteristics that seem to go together.
Most of the people diagnosed according to those characteristics are male, which leads to the expectation that most of the people who will be diagnosed will be male. And because Asperger’s is still such a new diagnosis, even a lot of professionals don’t know a lot about what to look for. I have read accounts of girls being told “You can’t have Asperger’s; you’re a girl,” even when they believe the traits of Asperger’s actually do describe them quite well.
In addition to that problem, what if the definition itself is biased because it is based on what Asperger’s typically looks like in a male? Might it not be the case that the same cognitive condition might tend to have different outward signs in females than in males? The differences in behavior between genders are not all due to physical differences in the brain. There are a lot of societal and cultural differences in the things that boys and girls tend to do, and in the ways that they are expected to behave. It seems quite reasonable to me that Asperger’s syndrome would tend to look a bit different in girls than in boys, and we won’t know what to look for until we pay attention and look for it.
Gould believes that the actual ratio of boys to girls with Asperger’s might be closer to 2.5 to 1 rather than the 4-to-1, 9-to-1, or higher ratios often suggested. Psychologist Tony Attwood, author of several books about Asperger’s syndrome, agrees with her estimate:
“The bottom line is that we understand far too little about girls with ASDs because we diagnose autism based on a male conceptualisation of the condition. We need a complete paradigm shift.”
Attwood explains why he believes Asperger’s in girls often goes unnoticed:
Girls slip through the diagnostic net, said Attwood, because they are so good at camouflaging or masking their symptoms. “Boys tend to externalise their problems, while girls learn that, if they’re good, their differences will not be noticed,” he said. “Boys go into attack mode when frustrated, while girls suffer in silence and become passive-aggressive. Girls learn to appease and apologise. They learn to observe people from a distance and imitate them. It is only if you look closely and ask the right questions, you see the terror in their eyes and see that their reactions are a learnt script.”
People might find it odd if a boy never speaks up in a conversation, but if a girl displays the same behavior, they may be more likely to say “She’s just shy.” One of the most noticeable traits of Asperger’s is often the tendency to lash out or “melt down” when circumstances simply become too overwhelming. A child might throw a huge tantrum for seemingly no reason– but maybe it’s because sensitivity to the light in the room hurts their eyes, for example. But not everyone turns frustration outward where it can be seen. Some people focus it inward on themselves, and that can make it a lot harder to detect.
But it can still be hurtful. The article says that girls with undiagnosed Asperger’s may struggle with low self-esteem, eating disorders, or self-harming.
A couple of other interesting comments from the article about why Asperger’s in females has been overlooked:
- Attwood suggests that girls with Asperger’s tend to be more social than boys– they may have just one close friend instead of none, for instance.
- A girl’s areas of special interests might not stand out as unusual, because “it is the intensity of their interests that is unusual, and not the oddity of what they do.”
Check the article out for more.
Now, I don’t mean to utterly dismiss Baron-Cohen’s theory– it does seem that there are more males with Asperger’s than girls for some reason, and it’s worth finding out why. But I definitely think that we’ll have a skewed picture of what Asperger’s is without taking females into account as well.
(What I think would really be interesting would be to survey the people who have the genes linked with autism– How many of them actually have autism or Asperger’s? What other traits do they share, and should any of these be added to the diagnosis? Is there a trend among women that is different from the trend among men? Of course, such a study would need to wait until we actually know what genes are linked to autism!)
And here’s one big reason why– even though I think the view that Asperger’s presents differently for boys than for girls is on the right track, even that view is insufficient if it merely consists of saying “All boys are like this, and all girls are like this.” I think that individual personality and experience can have a huge effect– likely even bigger than gender– on what outward traits a person with Asperger’s shows.
One of the things I found amazing when I read this article was how adeptly the paragraph I quoted described me when I was in school! Appeasing? Absolutely; I was always worried that something I did was going to upset the teacher. Apologizing? All the time. Sometimes I apologize for apologizing too much. Suffering in silence? Definitely; I thought such was my calling as a Christian. (I was wrong, by the way.) Passive-aggressive? I have to admit I can tend to be when I’m annoyed. I was very much the person on the periphery of the conversation, trying to learn by observation but terribly unsure of how to participate.
I was never one to lash out or throw a tantrum– and even though doing so would have been a clearer signal that I was struggling with some things, I’m very thankful that I haven’t had to deal with controlling an urge to become disruptive– that has to be really tough.
And I am definitely a boy. 😉
I shared the fact that this article’s description seemed to fit me well in an online community for people with Asperger’s and autism, and I found out that I was not alone. Some other males said that it described them as well, and that they felt the difference was more a matter of personality than gender. And some females shared that they weren’t like that description when they were in school. One woman said that she had always let it be known how she felt or what she thought about others (which could lead to some conflicts).
My point is that all of these things are matters of personality. There is no rule that says that women cannot be logical or decisive, and there is no rule that says that men cannot be sensitive or empathetic. These are all good qualities that anyone can display– the Bible has examples of each.
So there you have some of my thoughts on this subject. Thanks for reading!