How Can We Do Better By Our Autistic Girls?
Autism is different for girls, and not only because fewer girls than boys get autism diagnoses. Autistic women and girls not only tend to have different traits than autistic boys do, but are also socialized differently -- leading to many of those girls being overlooked or misdiagnosed well into adulthood, and leading most of their life without the supports that could have made their lives much easier. It gets even more complicated when autistic girls are also racial minorities, and/or from low-income households.
Photo Credit: Adam Jones via Flickr.
How can we better recognize our girls who may be autistic? How can we make their lives easier? I spoke with five women of various ages, diagnosis ages, and nationalities about their experiences growing up -- diagnosed or not -- and what they’d like other people to know.
- Emily Paige Ballou is an autistic theater professional and writer based in New York. She was diagnosed with Asperger’s syndrome as a young adult.
- Olley Edwards is an autistic British writer and filmmaker, and parent to a neurodivergent family of three girls. She was (finally) formally diagnosed with autism herself only recently.
- Patricia George is an autistic Canadian writer, photographer, and artist. She was diagnosed with autism in her early 40s after a lifetime of being misdiagnosed with other conditions.
- Christine Langager is a writer, homeschooler, volunteer with an autism service dog organization, and a retired athlete. She is also an adult-diagnosed autistic parent to two autistic boys, and spouse to a U.S. Marine. She lives in Southern California.
- Siobhan Travers (Nez Perce) is an autistic writer, advocate, teacher, parent to an autistic daughter, and was diagnosed with autism herself as a child. She splits her time between Lapwai, Idaho and Northern California. Though considered “minimally verbal,” she speaks five languages.
What do you consider some of the most commonly misidentified or overlooked traits of autistic girls?
OLLEY: Many autistic girls (and males) may present with a more stereotypically "female" social pattern: they are very social, even overpoweringly so. This can actually be an extreme attempt to replicate what they perceive as "normal " relationships. Clinicians need to look deeper not at the level of social life, but at the quality of it. Is this the genuine self, or are they playing a role?
The vulnerability being underestimated is a vast problem in self care and safeguarding, if you are Autistic it does not matter how capable you may seem, you will be vulnerable.
PATRICIA: That we exist at all!
Our sense of justice and fairness gets seen as just being stubborn or "mouthy." Our need for things to be fair and even can make for intensely rigid thinking. It can get us into bad situations for which we don't have the skills to get out of. Also, our perceived "maturity" is likely due to working so hard to blend in -- but we are not as mature as it might appear.
SIOBHAN: I think the most overlooked trait might be that it is assumed girls are more socially competent than they are. Also any academic difficulties are not as obvious.
CHRISTINE: I think that one of the biggest things that has been missed for the entirety of my life has been what I call "the chameleon effect." I was raised, as many women are, to blend in. To be a lady. To not make waves. The result of that has been a fairly well-honed skill set of changing myself to the social situation to blend in, and to (attempt to) be like the others present.
"But you make eye contact!" Ugh. Yes. Yes I do. It's not without a tremendous amount of effort, it was hammered into me as a child, and it's incredibly uncomfortable. Most autistic women I've met seem to have more eye contact frequency than that of autistic males. I think that might go hand-in-hand with the societal pressure for women to fit in, and not rock any boats.
I've had to tell many people if they took a trip inside my brain, they'd see my autism full-force, and not question my diagnosis again. Rigidity to rules was dismissed as, "playing mommy," or "being a good girl."
EMILY: Exposure anxiety. Not being able to process or to act under scrutiny. We need mental and physical privacy. We may need time and space to figure things out for ourselves -- that others don't take it for granted we need, or are entitled to.
A lot of "shyness" or noncompliance or reticence to try things -- particularly while we're being graded or judged on them -- is that we know that we don’t know what we need to know. We know when our abilities don't match the demands being placed on us.
And a lot of forms of attention that a parent or teacher might presume are positive, can be torment. (I have avoided doing things conspicuously in order to avoid being praised for them.)
Emotional sensitivity: we can feel a lot more than we might be able to tell you about, identify, or explain. And more than it might look like we do.
We can also look very emotionally vulnerable or volatile. Little things can mean a lot to us. Sensory issues can have emotional effects. This can be very confusing and hard when paired with Alexithymia, which is the inability to identify or verbalize emotions, or to distinguish between emotions and physical sensations. A girl could be going through a lot and not know any way to tell or show it to you. Just because she behaves well and gets good grades doesn't mean she's not having trouble. Quiet girls may be sublimating a lot.
Fairness is often extremely important to us. We can tell the difference between when life just isn't fair, and when adults are making life unfair. That's a lot of what erodes our trust in adults and authority figures.
Compare and contrast: What sucks more, in your opinion: being misdiagnosed or being undiagnosed ?
CHRISTINE: I was only ever diagnosed with anxiety (which I do have), and depression (which I don’t have). It was more difficult having to do my own research, and advocate, and fight for professionals to acknowledge, and take me seriously. Constantly doubting yourself, your gut, and your capable research, while questioning your sanity takes a toll on one's confidence, and trust in yourself. Ah, the sweet relief when you're finally validated, though.
Being undiagnosed (and unaware) is its own mess of suck. It was a constant barrage of wondering why I didn’t fit in, why relationships were so difficult for me, why I felt so profoundly different, and wondering how to fix myself to be more normal without knowing where I’d even start. Self-diagnosing, and later formal diagnosis has kicked off a process of self-acceptance, understanding, and allowing myself grace, which I had generally previously denied myself.
PATRICIA: I've been both so let me think about this.
Misdiagnosis left me vulnerable to the protocols and biases and stigma of, in my case, manic depression/bipolar. So there was no real chance to see that I wasn't bipolar because that's the world I got sucked into.
Undiagnosed I would have been able to explore for myself. But I felt tied to the diagnosis I had and even though my heart knew it wasn't right, my rigid thinking made me cling to it for far too long. So for me, I would have preferred the undiagnosed path. But I got to my autism diagnosis eventually.
SIOBHAN: Both suck equally. If you are misdiagnosed you may have to deal with the added stigma of a mental illness that you don't even have. You are also possibly medicated for problems that you don't need. There is a chance of being treated for a co-occuring issue without getting supports.
If you are undiagnosed you have to deal with the pain of not knowing why you are different from everyone else and why you don't seem to know the unwritten rules of being a teen girl (or a young woman).
There is the additional complication that while Native American culture has always understood and accepted its autistic members, girls included, it is difficult for people of color, girls especially, to get formal diagnoses. Our (Nez Perce) view on autism as a tribe is that it is simply how some people are. And why try to force a fantastic bead worker to go hunt bears?
EMILY: It's hard to say that one sucks more. They suck differently.
One means not being believed about anything, and the other means being told that the source of all of your problems is something that it isn't, which can lead you down a lot of dead ends in trying to make things better. Having no help vs. having "help" that's actively counterproductive or wrong foisted on you.
Accepting treatment for something that isn’t wrong can be really alienating and even worsen your mental state of being. I can barely even talk about being in Cognitive Behavioral Therapy, it was so damaging.
OLLEY: I'd say both on equal parts the non diagnosis means you can't access the support you need , the misdiagnosis means you are accessing support /medications you don't need.
Also, as autistic females often adapt to the role they need to be to fit in, they may indirectly "chameleon" into the traits of the "disorder" they have been misdiagnosed with, making their autism that much harder to be seen in a clinical setting when/if the chance arises. Actually I retract what I said about them being both awful on equal parts -- a misdiagnosis is much harder than a missed diagnosis.
What, in your experience, are some of the most dangerous situations autistic girls can get into, that both they and non-autistic people don't always recognize?
SIOBHAN: Dangerous situations for young autistic women ... many. If she is a woman of color she has a high risk of being murdered or "accidentally" shot by law enforcement. High chance of not understanding a situation where she is being manipulated for sex, rape, marriage fraud, scams that put her life in danger.
CHRISTINE: Any sort of situation where there wouldn't be a responsible and educated person who would advocate for them.
OLLEY: If you struggle to keep up with other people's agendas, needs, wants, or expectations and rely on your own thought process you are easy prey to those who do not mean you well. Abuse then is often hard to report, as you struggle to understand how to report/seek help -- or in fact that asking for help has advantageous consequences. Theory of mind, or understanding that others do not see the world as you do, should be taught in every school where autistic children attend. It is as unjust as Braille or Sign Language not being taught to those who need it .
EMILY: I think one of the biggest dangers to autistic girls is being trained out of trusting our own sense of danger.
PATRICIA: Oh, this is a painful one to answer because it comes with so much unfortunate experience. We are naïve and have a huge sense of fairness and justice -- this is a terrible combination. I've also noticed, and from my own experience, that because I have trouble relating to peers I spend time with people much older or younger than I am. This can lead to very abusive situations where the power dynamic is just too uneven -- we can't usually see that though. Too trusting. We take people at face value.
I've found that our sense of social justice can get us into a lot of trouble. When I am focused on "this is right and that is wrong," I can't always see the possible dangers that lie ahead.
When we are young and building scripts we just don't have the experiences to draw on to protect ourselves as we need to. So while my family recognized I wanted to make the world right and supported my advocacy, not knowing I was autistic left me open to being arrested in situations I just should not have been in.
We may seem far more mature than we are.
The often bullying and sexual, emotional, physical abuse and trauma that comes with being an autistic child leads to places like sex work and drug addiction. With barely any services in places for neurotypical people, the ones in places just do not serve us. I approach issues like sex for example, very differently that my neurotypical counterparts.
My literalness once known, is easily exploited. Especially when you're younger. In grade five another kid asked me to pull my shirt up in the middle of class. I did. I got in a lot of trouble. The other kid, did not. I was supposed to "know better" but here's the thing -- if you don't, then you don't. So we are punished which leads to more confusion and internalized hate.