Hello Internet! I’m finally back home after visiting family in Alaska with my mother. Apologies for the long delay between updates.
I found an article this morning on my Facebook newsfeed:
Autism characteristics differ by gender, studies find
…and, well, anyone who knows me knows where this is going. I’m too chatty for my own good.
I care very strongly about this topic. As an autistic woman who meets the DSM criteria for Autism Spectrum Disorder (ASD), yet doesn’t fit the standard profile of what an autistic person is “supposed” to look like, I, like many autistic women, embody a paradox within the autism research world.
Even though contemporary research seems to be catching up—more girls like me are diagnosed every year—there’s still a lag in the development of an adequate female profile for autism.
To address the above article specifically, I’ll say that one thing that always bothers me about these types of reports is the fact that research scientists seem to be in a strange cultural transitory period where they accept that the female profile is different from the male profile, yet still frame the female presentation as a deviation from the “classic” (male) profile. This article thankfully included a refreshing dose of gender context (emphasis mine):
…for individuals with IQs above 70, the most striking difference between girls and boys with autism is a lower prevalence of restricted interests among girls.
Some researchers say this last finding doesn’t jibe with clinical experience. “They do have restricted interests, but their restricted interests are more socially appropriate,” says David Skuse, professor of behavioral and brain sciences at University College London, who was not involved in either study.
For example, a 10-year-old girl with autism might bombard a listener with facts about her favorite pop star whereas a boy might rattle off train timetables, and a teen girl with the disorder might obsessively collect makeup rather than old coins. Clinicians may be more alert to certain stereotypical restricted interests, such as trains, than they are to female topics.
Every single autistic woman or girl I have ever met has intense special interests, and becomes “autistically obsessed” with anything that she enjoys. Get any aspie woman talking about her current home renovation project, new favorite TV show, or favorite celebrity, and you’ll see the obsessive, restricted, monologue-style thought patterns widely observed in autistic males.
These obsessions in females are often overlooked, however, because they don’t target cliché autistic topics (aka, interests that are fostered and encouraged more often in little boys).
What’s more, autistic girls will often have more opportunities to develop social skills and form friendships than their male equivalents because of what Tony Attwood refers to as the “Mother Hen” phenomenon of female peer dynamics.
This phenomenon refers to the observation that nurturing behavior is more normalized and encouraged in and between girls. As a consequence, allistic girls will take autistic girls under their wings, so to speak, befriending them and introducing them to social norms, “appropriate” interests, and wider groups of friends. While autistic boys tend to stay loners—or group together in all-autistic circles—autistic girls will often have access to a wider variety of friends from which they can pickup social skills; everything from how to dress to how to act.
This common occurrence leads to data that can confuse researchers.
Not surprisingly, the researchers found that individuals with autism score lower on the Friendship Questionnaire than controls do.
Within the control group, boys score lower than girls do — consistent with the general sense that girls have better social skills. Among those with autism, too, scores differ by gender: Girls with autism have higher scores than boys with the disorder, but their scores are lower than those of girls in the control group.
This leads to the ultimate frustration for autistic women, a false belief that many of us have encountered and fought against time and time again:
It’s possible that girls with subtle social deficits aren’t diagnosed with autism because they don’t actually have autism.
What most—coincidentally, male—researchers leave out is the crucial influence of cultural gender roles, as opposed to biological sex, in regulating social and emotional development.
Girls and boys grow up in different worlds, in entirely different social contexts. This leads to incredible contrasts in the clinical presentation of conditions like autism and ADHD. Girls develop entirely different social profiles and coping techniques than their male peers, in large part because they grow up in an environment of entirely different expectations.
Autistic girls occupy a world where, from birth, they are assigned a gender that is culturally defined as more emotionally intelligent, less externally reactive, less impulsive, and more socially aware as a matter of course.
These are not always rules that we teach our children explicitly—that boys are rowdier and girls are more empathetic—but these expectations are prescribed from infancy.
The ways in which we react to children’s behavior, the adjectives we use to describe them, the specific traits and behaviors for which we lavish praise, and the cultural archetypes in which we immerse them, all teach girls and boys exactly what it means to be a Girl or a Boy, and what it is we expect of them.
Autistic girls are not immune to this cultural process of gendering.
While many autistic men don’t begin to intentionally teach themselves social and emotional skills until they are adults (if ever), autistic women have been encouraged to put effort into developing these skills from early childhood.
This is a regularly overlooked explanation for why autistic women often present with the social abilities to read and use facial expressions, vocal intonation, eye contact, body language, and cognitive empathy, while their male peers lag years behind.
In fact, many autistic women will remain undiagnosed long into adulthood, bouncing from doctor to doctor for issues ranging from depression and anxiety to IBS or insomnia. The signs may still be there, but even the women themselves won’t identity with the ASD criteria.
If you are an adult woman who suspects you may be on the spectrum, who has struggled with anxiety, executive functioning, and other issues, but who still feels uncertain due to your social abilities that research and popular culture tells you should disqualify you, know that you are not alone.
These skills you spent years learning, that you still have to expend effort to maintain when they seem effortless to your peers, these skills are supposed to come naturally to neurotypicals. Knowing when to smile and laugh, how to make smalltalk, and when it is your turn to speak in a conversation are things that neurotypicals say they don’t even think about.
We can teach ourselves these skills, but the very fact that we had to try in the first place is what sets us apart.
Autism isn’t just a nerdy little boy with a stoic face who loves trains.
Autism is also a little girl who compulsively twirls her hair while talking her mother’s ear off day and night about Justin Bieber.
Autism is a teenage girl who hoards beauty products as avidly as any stamp-collector, spending her nights on makeup forums and her days lining up and taking pictures of her rows of nail polish.
Autism is a woman who can do nothing but smile and laugh during the smalltalk part of a conversation, tapping her foot under the table, but who lights up into an animated frenzy when she finally gets to discuss (and accidentally dominate the conversation with) her new favorite HBO show.
A therapist once said to me, “You can’t have autism because you have friends.” I know too many adult women who think the same sorts of things about themselves.
We are more than an outdated clinical profile.
“When you’re looking at the female phenotype, if you look at it through the male prism you’ll only see the male characteristics of autism,” Skuse says. “You only see what you expect to see.”
Some resources for autistic women:
- Feminist Aspie
- Autism Women’s Network (AWN) (and their Facebook page)
- Wrongplanet.net’s Women’s Discussion forum
- A downloadable seminar on girls and women with Asperger’s
Some blogs run by autistic women:
You’re an extremely gifted writer, and I hope you find the proper outlet/ employment for your talent and skills in NYC. And the photos from Alaska were breathtaking! Hope your summer is going well.
Sent from my iPhone
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I also care very deeply about this subject! I am just starting to write about raising my aspie daughter who is now in college. Nice post!
Great article. The very female profile of asperger’s doesn’t fit me personally; I have never been into pop stars, fashion or make-up, and never been good at playing a girlish role with stereorypical girlish virtues like empathy, social attention, fashion sense, small talking et.c, that has always been an alien world to me. However, I don’t fit the male stereotype either, and my big childhood interests and activities were typical for girls – horses, guinnea pigs, animals overall, toy collections, drawing animals, reading, writing stories et.c. I had either one friend, or several friends, most of my childhood school years until my young teenage years, but I wasn’t able to adapt to an adolescent style of friendship, and therefore “crashed” socially (lost the social confidence & skills I had, lost all friendships, developed mental problems, became almost completely isolated and remained out of contact with people/society for most of my young adulthood). Still now in my 40s don’t have friends I see in my everyday life, although I do have “distance-friends”, but I’m married and have a low need for outgoing social contact (and it is very stressful/tiring), so I am not feeling lonely. I very much agree with the importance of not overlooking the signs of female autism even when it presents as “mild”; because the “more socially adept” (at a glance) profile of females does not necessarily translate to higher social success (than the males). What the professionals tend to forget is that the social expectations to women are also much higher – in terms of social life, in the workplace, in schools et.c. So as a woman the risk of ending as socially ostracised even with subtle cognitive impairments and differences is actually surprisingly high in real life. That can easily translate into employment failures (and perhaps chronic unemployment), interrupted education, social isolation and mental health problems. It doesn’t pay off to overlook the females and lose people who could, with better self-understanding, support, and understading from others been able to overcome their challenges and get their life on track to be in whatever way that’s possible for them, productive, integrated members of society.
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Sounds like we have a very similar profile, but I’m a bit older. Was never “girly” though always feminine. Interests (obsessive) were horses, animals in general, and classic movies (as a young girl/teen – kinda weird!) Most of the things you mention were/still are me too. Wish I’d understood it when I was younger.
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Beautifully written. This is exactly it!
As always, excellently written and expressed. Every day I see more and more evidence of young girls who are “obviously” (to me) on the spectrum. We are not alone, but I hope things change fast enough for them to grow up knowing they aren’t alone either, and to get the support and acceptance they deserve. The boys too, of course!
Thank you. I’ve been “studying” Asbergers for a while now. I’ve felt such an empathy and affinity for people with Asbergers. Lol.. Reading your blog is clarifying for me why I’m so interested. It is me. I feel like a thousand pounds is coming off my shoulders. So nice to know I’m not crazy or screwed up. My brain just works differently. 🙂
Thank you for the great post! I just started actually paying attention to my diagnosis of autism. Too busy doing other things… Been misdiagnosed, over-medicated, under-medicated, and damn near killed by M.D.’s who definitely see things through the ‘male colored glasses’ that both male & female caregivers can wear. I have to learn about Asperger’s, and how it applies to females, so I can help my P.C.P. help me. I have serious medical issues because of discriminations against persons with autism, and LGBT here in Central MO. That’s being dealt with, as well. Anyway, thanks again for the very well worded post that makes perfect sense and puts things in perspective…
How then does one diagnose autism in a girl..?
I like the way you frame it: I’ve thought about it a lot in terms of my own experience, and I realize that the reason I presented differently is that I got the equivalent of Early Childhood Intervention just by virtue of my gender. From this we learn two things: one, the importance and effectiveness of early intervention, and two, how badly we are at raising ALL boys.
Allistic friends are not the only teachers: girls are merciless bullies, especially when it regards a deficit in social skills. Many of my learned skills were learned in an attempt at self-preservation (as, I’m guessing, the preference for socially acceptable special interests would generally indicate – at least it did in my case – dogs, horses were weird but tolerated.) One of the reasons girls need professional evaluation and support is that this type of “learning” involves trauma that can have lasting effects: I know it did for me.
An entirely separate point that I am sure affects most women on the spectrum who can “pass” – learned skills are more costly to use than innate skills. Even if you have received enough “training” to know what to do in any given social interaction, the amount of energy you have to expend to do it is significantly higher than for an NT. These women (as well as men who can “pass”) are less likely to be taken seriously by the mental health community, and are diagnosed with all kinds of vague mental health maladies and offered all kinds of pharmaceutical remedies…all of which are band-aids that do not address the root cause.
We need more time to recover from doing ordinary things, in the same way that someone carrying 100lbs would. There is not a “remedy” for that, and it is a simple intervention – but one that is very difficult to get in our society (how many of you have been labeled “lazy?”)
Note: this is not to say that people on the spectrum can’t ALSO have co-morbid mental health issues – I’m not talking about those, just about the way burnout is mismanaged by professionals.
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