According to the CDC, 1 in 59 children are on the autistic spectrum. Researchers used to think that more males than females had Asperger’s/autism. (Autism level 1 is the official diagnosis for Asperger’s these days.) The estimate from 2013 and before had been that there was a 4:1 ratio in men outnumbering women. Now some researchers think that among those who have higher intelligence and verbal skills, the ratio may be 1 : 1.8.
Why are women so under-diagnosed? I get letters from women all over the US who think they are on the spectrum, but they are laughed away by professionals. The answer is fairly obvious. Many girls and women on the spectrum don’t look like boys or men on the spectrum. The diagnostic prototype is the male model: the nerdy guy who’s totally unaware of social norms interested in some strange topic who might show some kind of obvious unusual behavior.
Girls tend to be acute observers and are better at imitating social skills they observe in others. To a casual observer, a girl on a school playground can seem to be social; she’s around groups of girls. Boys tend to be alone while their peers are playing sports. The autistic girl might be making eye contact and talking to others. If she has a self calming movement (stimming) it would probably be more subtle and less noticeable than a boy flapping. However, she is still missing social cues. Other girls pick up that she’s different, so she tends to not fit in or be accepted by girl groups.
Why do professionals miss her? The diagnosis for autism has two main components: lack of social reciprocity (the back and forth of getting social cues and understanding, maintaining relationships), and repetitive behavior – either a behavior or an intense interest in something that the autistic kid might talk about even if it’s off topic in the conversation. Girls might make eye contact and carry on conversation (often by telling stories) and have interests that seem normal: art, reading, animals, even fashion. The gold standard test, the ADOS, often misses verbal girls without intellectual disability and almost all questionnaires are male-oriented.
Also, clinicians expect that parents or teachers would have reported autistic behavior in childhood. The problem there is that if the girl isn’t diagnosed to be autistic, her behavior would be misinterpreted. If she were outspoken, she would be called rude, oppositional, defiant, manipulative, having “attitude problems” or being attention seeking. If she withdrew, she’d be called shy, avoidant, or possibly arrogant and rejecting. She might be considered quirky, disruptive or a loner, but not autistic.
So what does an autistic girl or woman who has learned to cover up autistic behaviors look like? She still doesn’t fit in although it’s not clear to her why, and she spends a lot of energy keeping up her “normal” social behavior, called “camouflaging” or “masking.” She may have spent so many years camouflaging that she doesn’t remember what it’s like to be authentic. Camouflaging takes effort and is stressful even if it’s not fully successful, so girls can be exhausted as well as depressed and anxious.
.Other autistic traits are actually the same as boys/men. Girls/women can have more autistic traits than males and still be undiagnosed. It’s important to realize that no two autistic people look alike, so any one person would have some constellation of the traits I’ll describe but not all or to different degrees. Also, most autistic people have sensory hyper or hypo sensitivities to sound, light, texture, smell – some aspect of the environment. Some researchers suggest women without intellectual disability have more sensory issues than other autistics.
Autistics have cognitive challenges of being inflexible, rigid and literal thinkers. They over-focus on details at the expense of main ideas, although they’re capable of insightful abstract thinking and analysis, often seeing connections others miss. They can be slow processors to determine the deep meaning of what someone said, or take time to find the language that exactly describes what they mean to say. They can have trouble with non-literal use of language and nonverbal cues that help understanding sarcasm and inferential meaning. Being literal and missing social cues can lead to social blunders. A young woman starting college could have dorm mates say, “We’re going to dinner,” without understanding that this is an implied invitation. When she doesn’t go, her peers think she’s unfriendly.
Generally, autistics are dependent on routine and predictability to navigate the world, so they can experience distress with changes in routine or expectations. It’s what I call “railroad thinking.” If neurotypicals face a change, they maneuver around it pretty easily; for an autistic it can be like being on a railroad track, and changing tracks is a difficult enterprise. Many also have alexithymia, trouble identifying their feelings, although most have deep feelings. When sensory issues, social demands, need for fast processing and flexible thinking or transitions are overwhelming, autistic individuals can become very emotional and frustrated – they “melt down”- or they can shut down and withdraw.
There is an idea that a woman who “looks normal,” has no intellectual disability and uses language well is “high functioning, ” meaning that if she has autism at all, it’s autism lite so she doesn’t need support. This is based on outside observation. Intelligence has no correlation with need for support. There are women with college degrees who are unable to function in jobs. Internally, the autistic woman may be struggling with keeping up social appearances, slow processing of how to respond, sensory issues, anxiety, depression and low self esteem. She may have a sense of rejection, hopelessness and despair because she doesn’t understand herself. She may “melt down” and be perceived as over-emotional for no reason.
Women often are given diagnoses, years of therapy and medication without really understanding themselves. Instead being called autistic, autistic women are called “borderline” (for black and white thinking, emotional reactivity), depressed, anxious, OCD, ODD, and ADHD, for a partial list. Autistics can have co-existing separate conditions including depression and anxiety, but depression and anxiety are often due to trying to make it in a “neurotypical” world facing misunderstanding, rejection and criticism for being the way they are. Social expectations of women are very deeply held. There are also other problems that frequently come with being autistic: ADHD, GI disorders, eating disorders and gender identity confusion are common.
Here’s some typical autistic traits that one finds in females:
- She feels isolated and like she doesn’t fit in even if she seems to have friends, she’s married and/or she is working with others.
- She doesn’t know what she’s missing socially, so friendships can end or co-employees can get angry and she is confused as to why. She can find the demands of a complex social situation overwhelming and either shut down or react with an emotional outburst.
- She can get in trouble at work if her boss isn’t clear with expectations and directions. She can also have trouble dealing with criticism without time to process.
- She’s a deep thinker and has trouble with superficiality and small talk. Her multi-level analytic thinking can result in her being far ahead in a conversation so she becomes impatient.
- She’s a black and white thinker, so she’ll think there’s a “right” and “wrong” answer or way of doing something. (Usually her way seems right to her).
- She can have trouble letting go of an idea and get stuck on an idea or feeling.
- She’s very detail oriented and can go on and on trying to explain her thoughts, or focus on details others don’t find relevant. She might not understand the context others need to fully get what she’s saying.
- She takes what’s said literally and at face value. This is confusing since most “normal” (neurotypical) people often don’t mean what they say (“nice to see you” doesn’t mean they like you) and often don’t say what they mean (when I say “this is heavy” I mean you should offer to help.)
- She’s truthful and values integrity; she’s confused by people being manipulative and lying.
- Because she values routines, a novel situation can be upsetting, even one that seems positive. Her need for routine can be interpreted as OCD or she may have co-existing OCD.
- She is often anxious and depressed.
- Because she gets overwhelmed by sensory overload, she might need to escape or shut down
- She may not show expected empathy because she shows empathy in different ways, like in expressing her experience of a similar situation or trying to fix the problem. She actually has very deep empathy and can be deeply upset if someone else is upset.
- She cares deeply about fairness and social justice.
- She is at risk for abuse- she doesn’t get the danger cues that someone shouldn’t be trusted. Autistic women have a much higher rate of being sexually abused.
There’s what’s called “broader autistic phenotype” which means having many autistic traits while not clearly meeting the criteria for autism. Many of those with this “almost” version of being on the spectrum are more comfortable and feel more accepted by others on the spectrum.
It’s important that autistic girls and women are recognized because they need to understand themselves and others need to understand them to appreciate their needs. It’s also very important that women are diagnosed because they are at risk for abuse, and they need to have help determining the warning signs of a potential abuser. While some go through a period of depression, many adult women who are diagnosed “late” report a sense of relief and validation when their experience is put into a perspective that makes sense and is not a ‘moral failing.”
When a woman knows her diagnosis, she can make sense of relationship problems and solutions become evident. She can advocate for her needs at home and work. She can go online and find peers to talk with, or stop being upset if she’s not a good fit for “typical” gender stereotypes. She can put much of her history in perspective and better appreciate her strengths – her analytic mind, attention to detail, truthfulness, integrity, sensitive empathy, deep sense of social justice and she can know that when she is a friend, she is a loyal and true friend.