This article was originally featured on Undark.
It’s been more than 30 years since the award-winning film “Rain Man,” starring Dustin Hoffman and Tom Cruise, put a spotlight on autism — or, more specifically, on a specific type of autism characterized by social awkwardness and isolation and typically affecting males. Yet as far back as the 1980s, at least one prominent autism researcher wondered whether autism’s male skew might simply reflect the fact that autistic females were, for some reason, going undiagnosed.
Over the past decade, spurred by the personal testimonies of late-diagnosed women, autism researchers have increasingly examined this question. As it turns out, many autistic women and girls are driven by a powerful desire to avoid social rejection, so powerful, in fact, that they may adopt two broad strategies — camouflaging and masking — to hide their condition in an attempt to better fit in with neurotypical peers and family members.
Such behavior is “at odds with the traditional picture of autism,” writes Gina Rippon, an emeritus professor of cognitive neuroimaging at Aston University in Birmingham, England, in her new book “Off the Spectrum: Why the Science of Autism Has Failed Women and Girls.” And while the ability to blend in might seem like a positive, it can ultimately take a heavy toll. Rippon points, for example, to surveys showing that by age 25, about 20 percent of autistic women have been hospitalized for a psychiatric condition, more than twice the rate of autistic men.
In the U.S., the rate of autism has been increasing since at least 2000, and many autism researchers, including Rippon, believe more inclusive diagnostic criteria, coupled with increased awareness, have contributed to the rise. Last week, however, Health and Human Services Secretary Robert F. Kennedy Jr. dismissed this idea and insisted that the condition is caused by environmental factors. The National Institutes of Health has begun work on a research initiative that aims to look into this further.
Rippon spoke with Undark about how autistic individuals who use camouflaging and masking, including some males, often pay a high price for putting on their “best normal.” Our interview, conducted over Zoom, has been edited for length and clarity.
Undark: In the book, you write that clinicians may need to ask finer-grained questions to identify autistic girls and women. You gave a really interesting example, “Does your child have friends?”
Gina Rippon: How autism has always been identified is through social isolation. If you read the very early reports, it’s almost intentionally isolated — [individuals with autism] didn’t seem to want any contact with other people, or care if they didn’t have it. So, the issue about friends was key: “Does your child have any friends?”
If the answer is no, then that’s a red flag for the autism checklist. If the answer is yes, but you’re not asked, “Does your daughter find it difficult to make friends? Or if she makes friends, is it just one child that she gets kind of fixated with and then there’s some breaking up?’’ There’s not the kind of deep dive that is necessary.
UD: In the past decade, researchers have increasingly turned their attention to camouflaging and masking. Can you explain what these terms are? And what do findings from brain imaging studies suggest about these behaviors?
GR: Way back in the 1980s, when people started to notice that there weren’t many girls [diagnosed with autism], there was a kind of almost off-the-cuff comment that maybe girls were just better at hiding their differences: They weren’t causing any disturbance in the classroom, or something like that. It turns out — particularly via a lot of really powerful personal testimonies of late-diagnosed women — that they had actually spent all their lives disguising the fact that they had the difficulties associated with being autistic.
They had lots of sensory difficulties. They needed to calm themselves down by what’s called stimming: hand flapping or unusual bits of behavior, which they desperately tried to suppress because they didn’t want to stand out as being odd or weird. Therefore, they “camouflaged,” tried to blend in with everybody else.
They tried to watch how conversations worked, and literally, they would write a little script if they were going to a friend’s birthday party or something about what people might say and how they should respond. They would practice in front of the mirror.
Masking has the same aim, but the idea is you hide who you really are because who you really are is somebody who’s quite anxious, who has all kinds of difficulties interacting with the outside world because of autism. So, you mask that and you become the class clown or the person who’s really good at acting.
Once people started realizing what was going on — very often through these powerful personal testimonies — they found ways of actually asking the question: “Do you spend a lot of time practicing being social?’’ This was never anything that was asked in the past, and it was the basis of the discovery of this big gap in the autism story.
Neuroscience kind of fell into this bias: Autism was believed to be a male problem, so the easiest way of investigating autism was only to look at male brains. I have to confess, I recruited people for my studies, and they were almost all male. And so the models that were being developed right up until possibly the last 10, maybe fewer years, were all based on almost wholly male participants.
Now it has become a part of research to look at individuals who camouflage, who try to hide the fact that they are autistic. Which if you think about it, is a bit odd. If people with autism “don’t care” about being social, why should they worry what they look like? That is now being incorporated into studies: “Let’s have a look at the network in the brain that supports social activity. Is it different in individuals who have higher levels of camouflaging than in individuals who don’t?” The answer is yes, it is.
UD: These individuals care very much about being social and feeling like they belong in a community, correct?
GR: Yes, that’s right. The social brain involves a social reward system — so, how are you affected by good social things? But, actually, what turns out to be a more important question: “How are you affected by negative social experiences?” The experience of being rejected, or ignored, or ostracized, or bullied seems to be much more powerful in autistic girls. Hence the camouflaging, which actually turns out to be quite maladaptive.
You might say, “Well, if you manage to hide the fact that you’re autistic, isn’t that a good thing?’’ But it’s exhausting. It is physically and mentally exhausting. Females in their 20s, 30s, 40s say, “This is how I’ve lived my life’’ and as a consequence suffered quite a lot of mental problems and physical as well. This is something that people should be paying attention to.
UD: It appears that adolescence is a particularly difficult period for autistic girls. In your book, you write that if “you were asked to profile someone at high risk of self-harm, an adolescent autistic female could be the ideal candidate.” Can you explain why?
GR: The issue very often is linked to camouflaging: Younger children — say, primary age children, most of whom are girls — manage to “survive’’ their autism in their early years by hanging around groups and sort of looking as though they belong. Very often, parents, when asked later on if their daughter has a problem, will say: “No, she was never any problem. She had friends. The teachers said she was ideal.”
Autism is very often associated with the onset of adolescence, which in itself can be very disturbing. Very often it coincides with moving to a secondary school, where you’ve got a big cohort of children that you don’t know, and you’re not in the same class with the same group of people and the same teacher. All of a sudden, there’s a big bewildering world out there. And it can be a very cruel world, particularly in school. All the framework that you’ve got in place is dismantled, and you’re confronted with not being able to cope.
Being an adolescent is bad enough. Being a female adolescent is also bad enough, particularly in the 21st century age of social media. If you’re also autistic, wow, life is hard. Your brain is undergoing dramatic changes — that’s what’s happening for all adolescents — but one of the aspects of the autistic brain is that its wiring is atypical: The way in which the connections are put together doesn’t follow the usual pattern.
So you arrive at an era of brain development where a lot of it is to do with reconnections. Old connections are dismantled, new connections are formed, but you’ve already got a brain which is unusually connected, and therefore the consequence of that is much more dramatic. I think that’s what’s happening in the female autistic adolescent brain. Hence, the eating disorders and the self-harm. There’s a much higher incidence of eating disorders and self-harm in adolescent autistic girls.
UD: In the book’s conclusion, you ask whether there should be a female autism subtype with its own diagnostic tests and research studies, but then you caution against that. Can you talk about why?
GR: I and other colleagues have an ongoing campaign to say, “Please stop saying ‘men are,’ ‘women are,’” because there’s a huge amount of variability in both groups, huge amount of overlap. It has had such profound political and educational consequences.
UD: Is there anything else that you’d like to add?
GR: There have been clinicians who say: “Our waiting lists are long enough as it is. Why are you suggesting that there’s another group of people?’’ Actually, this diagnosis is very important for giving individuals an identity. So many people are so relieved when they get a diagnosis. “At last,’’ they say, “my life makes sense.’’
I’ve spoken to people who’ve been diagnosed in their 60s and 70s, even, who said: “At last I know why my life has been so hard. If only somebody had said that to me very early on.’’
In terms of interventions, they need to be early. You need to be really looking, particularly in primary school, for girls who are currently being overlooked and missed. And when you get adolescent girls who present with eating disorders or self-harm, it’s worth saying, “I wonder if there’s an element of autism here as well.’’
