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Autistic Girls Are Undiagnosed, Underserved And Misunderstood

This article is more than 8 years old.

In a July 2015 piece in The Guardian, journalist Angela Naustatter homes in on a UK school that has a large population of autistic girls. The girls collectively show a mix of symptoms, including self-harm via cutting and obsessions that, at least at first look, don’t seem especially confined to autistic girls—things like body image obsessions and a strong interest in movie stars.

The article brought some much-needed attention to autism among girls and women and the possible ways that both fly under the diagnostic radar. They do so because of differences in how males and females manifest the condition and because of concepts like the "extreme male brain" that have taken over much of the conversation. What’s certain is that a lot of girls and women on the spectrum get labeled with – and treated for – something besides autism, sometimes to their detriment.

Naustatter's piece describes the girls as differing from autistic boys or from neurotypical girls in several ways, including a tendency to “implode emotionally” with their unhappiness whereas autistic boys are characterized as expressing themselves physically.

Compared to neurotypical girls, the article says, autistic girls are more obsessive and tend to be bullied and have a higher rate of eating disorders. The pressures from being underecognized as autistic and treated instead as being simply “hormonal” or having some other condition, leaves many of these girls feeling different, isolated and depressed.

I was curious about the distinctions drawn about autistic girls in the piece and how they relate to the real-life experiences of autistic girls. So I asked autistic women, via Facebook, about their impressions of the piece and their own experiences as autistic girls who sometimes weren’t recognized as autistic until they were adults. I quote from some of their comments below.

Elizabeth: I wish they would talk more about tendencies but be clear they are not hard and fast rules. Any autistic, boy or girl, will get overlooked if they can pass or it can be dismissed as hormones or emotional behavioral problems (how many get EBD [emotional-behavioral disorder] label? I bet lots of boys too). I also don't like tough love as an approach to people who feel intense emotions. It is scary being left alone with those intense feelings.

Emily B.: ...there is this undercurrent in the way the girls are being talked about that frames all of their problems as being results of their autism, and their success at the school being about not letting their autism hold them back, rather than being issues of having information about their own lives or not, having a supportive environment or not, being able to get the emotional support they crave, having probably been let down and betrayed by adults before their arrival at the school.... (The girl who wouldn't follow any adult instruction for 6 months...gee, couldn't be because adults in her previous schools gave vague, contradictory, nonsensical directions, or ones that she *couldn't* follow and wound up in more trouble when she tried, so there was no history of being able to trust adult instructions? Just a thought....) and likely just being expected to be more normal without sufficient education or support in developing coping mechanisms that work for them or healthy relationship boundaries.

Emily B.: if I never heard the phrase "just quirky" again for the rest of my life, I'd be a happy girl.

Regarding this passage from the article: “Beth is autistic and has been diagnosed with pathological demand avoidance, meaning she would go to great lengths to avoid situations that filled her with anxiety – one of the prominent symptoms of girls on the autistic spectrum":

Emily B.: "pathological demand avoidance" can be real, I guess, but often its invocation really means "I don't understand exposure anxiety."

Mildred: Neurotypicals go to great lengths to avoid situations that make them anxious. It seems to only be a disorder when we do it as well. And the first person I ever had to block on fb was actually an autistic male who was angry that no one would be his girlfriend. Who wrote this thing? I am beginning to wish no one be allowed to talk about autistic people but other autistic people.

Emily B.: Yeah--non-autistic people can't see the things that make us anxious.

About a passage from the article describing how the school reacts to an upset girl.

Iris: While most of the methods the school uses seem very positive, I am disturbed by the fact that nobody intervenes when a child is publicly crying. I also dislike the language used to describe autism. If a non-autistic girl wanted a boyfriend that would be seen as normal, but for some reason an autistic girl wanting a boyfriend is a problem that must be dealt with.

Zoe: ... just ignoring students who are visibly upset in order to "teach them a lesson" is unhelpful, humiliating... dehumanizing, really. And I think it's telling that the school for autistic *girls* is specifically focused on stamping out behaviors that are perceived as "attention seeking."

Sarah: I see a lot of talk about "emotions," for example, but little on sensory issues that affect emotions.

Regarding quotes in the article making comparisons between how autistic boys behave versus autistic girls:

Sarah: I'm also tired of the "autistic girls are like this, autistic boys are like this" rhetoric. While it is important to recognize the diversity of autistic people and the presence of autistic girls, I wonder if this rhetoric is not just as limiting in its own way as the standard story. I know plenty of autistic men and boys who care very much about social contact with others--many of them more so than me, an autistic woman. I don't think it serves anyone to re-inscribe myths about Girl Autism vs. Boy Autism.

Many autistic women I've spoken with have expressed frustration about two aspects of their experience: the lack of a timely diagnosis and the gendered expectations around how they will behave and what will interest them.

They can often go without resources and supports for years thanks to the prevailing concept that autism is "supposed" to be rare among girls and women. Because girls are socialized differently from boys, their needs can go overlooked and their autism unrecognized. They also are far less likely to be included in autism-related research studies, and much of the diagnostic approach to autism is filtered through the male behavioral prism.

That said, autistic girls might finally be getting some of the attention they need. A team at Yale is doing something unusual in the world of autism research: They're focusing on autistic girls and what autism looks like in this group. This kind of investigation is critical because autistic girls who go undiagnosed throughout childhood and endure years of stress and anxiety can end up struggling with depression and other negative outcomes.

Another study from a Stanford team comparing brain structure differences in autistic boys and girls has turned up some results that suggest one reason autistic girls might go overlooked. The brain scans showed distinct differences between autistic girls and boys in motor-related areas. That's a fit with the observation that girls, the researchers say, may be less likely to manifest the visually obvious motor behaviors, such as repetitive motions, associated with autism.

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