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Identifying as an Autistic Woman, and Why Write as One

Hello all. My name is Emily, I'm 26 years old, and I'm an autistic woman. I'm also a PhD student studying Cognitive and Behavioral Neuroscience. It seems like I spend an excessive amount of my time commenting on autism forums, so I decided to put all my thoughts in one place for those who may want to find them. Sometimes I'll share my personal experiences, sometimes I'll share anecdotes I've encountered in autism forums/communities, sometimes I'll share what I know of the current research, and sometimes I'll do some combination of the above. You'll have to forgive me for a bit of a sloppy start; there's so much to say and I've never been good at being concise, so instead I'm going to try to share it all and hope that I can be organized enough to still make sense.

So, I mentioned that I'm an autistic woman. Let's focus on that. Autism is so misunderstood in so many ways, but I'm lucky enough (sorry, that's sarcasm) to combine two categories of misunderstanding: I am both an adult, and a female. Complicating things further, I found out I'm autistic at the age of 20. I want to discuss what that looks like and what it means.

Autism in females (young or old) is a bit of a mystery. That's not to say that there's nothing we know; but, the things we know are currently in question, or their interpretation is unclear, or they're not getting disseminated to the people who really need to hear them.

So, what DO we know about autism in females? Here I'm going to info-dump, and I'll try to add my citations later -- not out of disrespect for the researchers or because I think readers should have to take my word for anything, but just because there is so much out there that citing properly is a project of its own.

We know...

Autism is genetic.
No single gene has been linked to autism; in fact, over a hundred genes seem to be involved, but having one genetic expression from the list doesn't usually result in autism. If you have 5 or more, you're probably autistic, but you can be autistic with just one and you can be neurotypical with five (at least, as I understand it). One theory is that there are clusters of genes in that long list that have similar functions, so it's less about the individual gene and more about what that gene does. Maybe 20 genes affect GABA production, and another 15 affect dopamine reuptake; if you have one gene from each category, those are two functions that may be affected, and maybe together with a couple other functions, the combined outcome is what we call autism. OR, maybe having 4 of those GABA genes changes one function, while having 4 of those dopamine re-uptake genes changes a different function, and both functions end up affecting similar systems and affect socializing and detail orientation, and we've been classifying two different things as one. Current understanding does suggest that we should call it "autism spectrum disorders," not the singular alternative, but it's unclear whether the various outcomes are the result of different base functions being affected, or similar clusters of functions being affected in slightly different ways. All of that is to say, the specifics are foggy but we're working on it, and I suspect that within my lifetime we'll know the answer.

Autism is more common in males than females. 
This probably isn't just that women aren't getting diagnosed. A massive study found that in twins (read: in people with similar familial risk for autism), there's a higher incidence of autism in the males than in the females. To put it another way, in twin pairs where one twin is autistic and the other is not, it is much more common for the autistic twin to be male and the neurotypical twin to be female. This study focused on autistic traits, not just on whether a diagnosis had been received. Now, we could go a step further to debate what should be considered autistic traits (hence the "probably" above), but for now let's assume that there is some genetic protection for females. Remember, this isn't unique to autism: females have two X chromosomes while males have only one, so there are many conditions where something on the second X is able to override what's on the first X, decreasing risk for females. I'll admit, I'm skeptical, but so far the data suggests that there is some amount of female protective effect in autism (or, females are less likely to be autistic than males).

Autism is often different in males than in females. 
Why? That's a question that a lot of researchers want to answer. Is the difference in the brain, or in the way the world responds to autistic females? At risk of sounding very pop-psych-y, it's the nature-nurture question, and we're not sure of the answer.

That said, females with autism are generally (not always) better at camouflaging than males. They "mask," or they disguise their autistic traits to seem neurotypical. Masking often happens without even knowing why. Late-diagnosed autistic women often struggle after receiving diagnosis, because suddenly they begin to recognize the ways they've been masking, and they've lost track of who they are without that mask.

Autistic females are better at producing nonverbal communication and gestures, even when they show similar degrees of social impairment. This falls into the camouflaging category, but seemed worth specifying.

Autistics often have "special interests," or topics with which they engage on an intense level. This may be the only thing they like to talk about, how they want to spend most of their time, and/or something that is constantly on their mind. It may be less intense than that, but still an area of extreme dedication. Often, this comes with knowing more about that topic than most people would. The stereotype you've probably heard of is trains: an autistic boy loves trains, collects model trains, can tell you everything about various train mechanisms, and spends all his free time reading about them. Not all people with autism have special interests, and not all such interests are so specific; both males and females with autism can have broader interests. I've known people whose special interests were Pokémon, video games, guns, and chess, just to list a few examples. That said, females with autism are more likely to have less restricted special interests, which may seem more mainstream; for example, a girl's special interest could be reading, or school, or Harry Potter (all three applied for me). This makes it harder to recognize autism in girls; plenty of children get obsessive about the things they like, and if those things are fairly mainstream, or even productive, there's no obvious reason to question it.

These are just a few areas where autism appears different in females than in males, and hopefully I'll address more of them in future posts, but for now I'm going to move on.

There are negative consequences to late diagnosis.
This doesn't mean there's never a negative to early diagnosis (something that many of us who were diagnosed late may forget). A friendly reminder to all of us that early diagnosis is only helpful if it's used to help you, not to punish you. An abusive or unsupportive parent/teacher/peer can easily turn diagnosis into a weapon, instead of an explanation. That said, women who are late-diagnosed report difficulty feeling they "belong" in autistic communities, despite also not feeling they belong in neurotypical ones; they report impaired sense of self, increased anxiety and depression, and incredibly high incidence of sexual abuse (here's one study).

Autistic women are often misdiagnosed before finding out they're autistic, and may never receive the correct diagnosis.
Especially common misdiagnoses are borderline personality disorder and bipolar disorder. Some are even diagnosed as schizophrenic. This can mean being prescribed significant drugs that only make things worse, being told that going off medications will result in homelessness and lifelong isolation, and doctors/psychologists refusing to trust anything we say. There aren't many people for whom I'd consider therapy a risk; for autistic women, it is. That's not to say it can't be worth it if you find the right therapist! But a lot of damage can be done by clinicians who don't know what female autism, or adult female autism, looks like. If you know a woman who was diagnosed as autistic in adulthood, she probably has a dozen stories about being told she can't be autistic for reasons as silly as "but you don't love math," or "but you have a friend." I talk a little about my own experiences later, though I could do a whole post about them (and might in future).

Now, here's a personal theory: What if the female phenotype of autism (or, the way autism looks in females) isn't exclusive to females? 
Elevated autism traits have been documented in groups of neurotypicals, especially mathematicians and scientists. Read a book like Neurotribes and you'll find plenty of references to autism traits in certain fields, like software engineering. Obviously I'm not saying that every software engineer or mathematician is autistic, or even that a particularly large percentage of them are; but, what if there's a subtype in autism that includes higher camouflaging, more "productive" special interests, and generally fewer of those noticeable symptoms that neurotypicals find so disruptive? I think we don't talk enough about who else might benefit from diagnosis, who else's needs might be going unmet, and who may be spending their lives masking.

Now that I've used so many bold headers, I think I'd better use one to specify the end of the bold headers segment of this post. So, that's all this bold header is.

I found out I was autistic at the age of 20, when a past friend who is autistic asked if I'd ever been diagnosed. Turns out, most clinicians don't know what autism looks like in females, or in adults. I was going through a few things at the time, and over that year I saw a few different psychologists -- the details don't add anything here, but I was not just shopping for a psychologist who would agree with the friend. One psychologist told me I couldn't be autistic because I had a boyfriend, and seemed to care about people. Another said I seemed too "charming" to be autistic. Luckily, I happened into the office of a psychologist who had actually worked with autistic adults AND autistic females. She told me that I was autistic, but that official diagnosis was an expensive and exhausting process that would probably only hurt me; my grades were good (in spite of missing classes due to overstimulation) and I was able to feed, bathe, and clothe myself. At the time, I wanted to go to medical school, and she warned that I'd be unlikely to receive a license to practice medicine if I had any mental health diagnoses. So, I chose not to pursue diagnosis. Instead, I started learning about autism, and all of a sudden everything fell into place.

I never really minded the puzzle piece as the symbol of autism. I know now that it's hated by many, interpreted as meaning we have puzzle pieces missing, are incomplete, etc. But, for me, when I first found out I was autistic and didn't know any of the downsides of organizations like Autism Speaks (tl;dr: they're very flawed and you should learn about why if you don't already know), that puzzle piece seemed perfect, because as soon as I found out I was autistic it was like all these disjointed pieces in my life fell into place and I could start to cope with them. I left an abusive friendship. I built some healthy friendships. I started making it to classes, coping with overstimulation in healthy ways, communicated with my professors, and asking for clarification when I didn't know how to read a situation.

6 years ago, I skipped meals if my roommates were in the common area because the conversation was overstimulating and the social rules around food were too confusing to me. I couldn't cope with the loud and crowded hallways necessary to get to my classes. I'd had a series of unhealthy friendships, culminating in a sexual abuse and PTSD. The list goes on. Today, I'm engaged to an absolutely wonderful man. I'm in my first year as a PhD student studying exactly what I want to study, with a boss I could not possibly admire more. I participate effectively in my classes, I have violin students, and I have friends.

Finding out that I am autistic changed my life. Now, having landed in a field where it won't limit me, I'm pursuing formal diagnosis. And, today, I'm starting a blog, because I remember how hard it was to learn anything about what my autism meant. Honestly, I think the intersection between the autism community and the research community is where I found the most of myself, and I want to make those resources accessible for others who are on similar journeys, and to their friends and families.

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