Translator: David DeRuwe Anthony Hopkins, Daryl Hannah, Greta Thunberg, Wentworth Miller, and me. What do we have in common? First clue - it’s not our bank account.
We are autistic, that is we have a brain that functions differently than most of you. Many people still don’t know exactly what autism is, and many myths exist about autism which make this lack of knowledge worse. Probably during your lifetime, you’ve heard various perjorative things about autism, and unfortunately, the number of people who spread prejudice and misinformation is much bigger that the number of people who are prepared to teach about us: neurodivergent people.
Imagine that your non-autistic brain uses the Windows operational system - good, efficient, does what it needs to do, and everyone knows how to use it. Then we have the autistic brain - it operates on an open Linux system, ready to receive millions of pieces of information, but most people don’t know it, and are afraid of it. Autism is a difference in neurodevelopment.
We receive, process, and respond to certain sensory-motor stimuli differently than non-autistic people. We can be hypersensitive to noises, and at the same time, have an astonishing pain resistance. Each autistic person is unique and has different characteristics.
This is not only on account of their condition, but also on account of the influence of environment, personality, culture. What we, autistic people, have in common and that differentiates us too, is what leads us to an expert to get a diagnosis: a form of communication that’s different from non-autistic people, ranging from the absence of spoken language to verbalization discordant from the group that the autistic person is in; repetitive movements, which we affectionately call “stims,” because, in addition to regulating us, they demonstrate our excitement; and restricted interests, the famous autistic hyperfocus. You must have realized that the first thing I used to explain autistic people was to show how much we differ from one another.
But we shouldn’t think difference is so strange, right? Diversity is a gift of nature, and the human species is a champion in this regard. People are Black, white, yellow, red, tall, short, skinny, fat, biologically-born male, female, and intersex.
Speaking of sex . . .
we have taken centuries to figure out that the bodies of men and women are totally different, and not just in the organs that designate our sex. Actually, we are different at molecular levels. Women’s hearts, lungs, and kidneys have particularities that don’t exist in the organs of people who were biologically designated as boys at birth.
You must be asking yourself: “What does this have to do with autism? ” This is the second thing you must know about autism: It’s not a condition that’s inherently masculine. There’s this myth that autistic people are generally male.
Hence the ridiculous idea of using blue to mark the 2nd of April, known as “World Autism Awareness Day. ” More and more, studies are showing that there is a big under-diagnosis of autistic girls and women, along with many, many incorrect diagnoses: ADHD, bipolar, borderline . .
. To explain the reason why so many women find themselves today without an adequate diagnosis of autism, first, we need to analyze the historical relationship between women and science. I don’t know if you know that until the 90s, the majority of research clinics didn’t use women in their control groups.
This means that the heart medication your grandma took everyday was never tested on a female body - never. Dr Paula Johnson has presented astonishing data on how women’s health was ignored by science for many decades. From cardiac disease to depression - common diseases in women that kill us everyday - the majority of the clinical studies made to find treatments haven’t used women, and when they have included women, they ignored the existing differences.
If you apply the same tests and protocols with both men and women, you’ll have misleading results because our organs react in different ways. This seems obvious to us today, but that way of thinking pervaded science for decades. US government studies show that 80% of the medications withdrawn from the market were withdrawn because they presented collateral side effects in women.
This is because these medications were only tested in male cells. There are many reasons for this - from protecting women and their fetuses from being targeted by unethical studies to lowering the costs of research due to the smaller hormonal fluctuations of male bodies. Remember when I said before that up until a few decades ago, the profound differences between female and male organisms were not known?
Well, women’s health was a subject of science only in regard to reproductive organs: uterus, ovaries . . .
Yes we really were - we were? - seen only as reproducers. Now, if female bodies have been isolated systematically from fields of research, there is only scarce knowledge about how certain diseases or conditions affect the lives of us, women around the world.
Different symptoms from different bodies, which results in less diagnoses, but if these diagnoses don’t happen, it’s clear that the studies of prevalence will be distorted, and this is the problem. There are perceptible differences in the way that autism manifests itself in female and male brains. Generally in the case of autistic girls, we have better communication skills than autistic boys, our fixed interests are more in common with those of non-autistic girls, and the main thing: we know how to imitate other girls, masking, even if unconsciously, our autistic characteristics.
On the other hand, autistic boys tend to have unusual interests quite different from their non-autistic peers, along with more difficulty in developing forms of communication, be it spoken or by other means. This seems to be more typical in all men; here it’s more exaggerated, believe me. Judith Gould of the National Autistic Society says that the ratio of autistic boys to girls would be around two to one.
The main cause for this disparity - previously believed to be 10 to one - is disregard for women’s health, as I reported earlier, and autism’s own history. Thanks to initial errors in the research of this issue, autism was seen for many decades as something extremely rare and masculine. Only with the discovery of Asperger’s studies in the 70s, did we begin to understand that we are actually a spectrum of many different ways that our condition manifests itself.
World politics have also harmed us. A few years ago, a 1926 study by Russian doctor, Grunya Efimovna, came to light, carried out almost two decades prior to the more contemporary Western articles. Her description of children’s characteristics are amazingly similar to what we see today in the American manual of mental diagnoses, the DSM-5.
By now, you must be asking yourself: “How does autism daily affect the lives of thousands of girls around the world? ” Imagine a little three-year-old girl with language skills so perfect that she embarrasses adults by pointing out their errors. She was a girl who always asked everything and always repeated the same questions.
She wasn’t different from girls her age as she was passionate about animals. What little girl isn’t? Only her mother said that this was a slightly exaggerated passion - her only interest was going horseback riding on Sundays.
Her notebooks didn’t contain the whim of her classmates or even her sister, but she could write and edit a text as if she were already an adult. This girl grew up and became obsessed with dating, like most teenagers. She walked, talked, and acted like the heroines in the books her mother had innocently lent her.
“Very distracted”, they said; she didn’t seem to live in the real world. She appeared to be almost always immersed in her own thoughts. But when she talked about what she liked, it seemed she couldn’t control herself.
And her hands - her hands never stopped! They were always messing with something: touching surfaces, touching her hair . .
. “Restless hands,” they said, “and clumsy. ” How clumsy those hands were!
In fact, they still are, but she’s learned to live with it. “So intelligent, but so boring,” said her mother. And so she grew up.
Her differences were almost unnoticeable, but they resulted in her not having many friends, and she couldn’t get a boyfriend. She was so emotionally fragile, and she cried for no reason. At times, she needed to take a cold shower to calm the nervous crises that she had.
Her notion of risk? Zero! This girl grew up naive and continued to be naive.
She didn’t understand other people’s intentions, and because of this, she experienced extremely dangerous situations, mainly in relation to men. She was harrassed. When she was 25, she was raped; it was on her first time venturing out on a tour excursion without her family.
She had never thought about having children, when at almost 40, she found a man who loved her different way. Her son was born one month after her 40th birthday, and three years later, he was diagnosed as autistic; four years after that, she too was diagnosed. You see, his diagnosis was very easy.
He, different from her, had very classical symptoms: he didn’t talk until he was almost four; his stims, the regulatory movements that he made, like the swaying of his body and hands, are also very common in autistic children; and clearly, he was male. He had very restricted and atypical interests, like anything related to lights and destruction. He loved natural and unnatural disasters, like the sinking of the Titanic.
Her diagnosis only happened after a difficult journey with experts who really didn’t know much about her condition. “You communicate too well to be autistic,” said the first psychiatrist she found, 20 minutes after entering the office. “You’re a woman.
Autism is four times more common in men. In spite of your characteristics being similar to autistic people, probably your problem is affective. You demonstrate aggressive episodes, so it’s bipolar,” said a neuropsychologist.
Well, at this point you must have already realized that this girl was me, and maybe you’re asking yourself what the psychiatrist said to me: “But if you’re married, have a son, and work, of what importance is a diagnosis at this point of your life? What have you missed by having these characteristics? ” And when I heard this question, I remembered immediately all the times that I felt incompetent by having great difficulty tying my shoes or whatever activity required fine motor control; of all the times I had strong emotional crises for not knowing how to deal with a break in routine, even hitting my head against the wall or tearing my skin from scratching; of all the bumps and falls I’ve had for not being able to perceive my body in the space it occupies - I have a proprioception deficit.
There were years where I felt inferior, insufficient, and incapable of doing things that were so very simple for other people. Thanks mostly to not understanding myself, today I have depression, anxiety disorder, and panic syndrome. Did you know that the main cause of death for grade-1 autistic people, the ones who used to be called Asperger’s, is suicide?
I’ve spent almost all my life thinking about killing myself, and I only didn’t do it because of my religion. But perhaps the biggest loss I’ve faced due to the lack of diagnosis was being unable to see my unique positive qualities, which only exist because of autism. Different from what most people think, autism does define me, yes, because autism permeates everything that I am, think, and feel.
I wouldn’t be who I am if I weren’t autistic, and this isn’t a problem. An exclusionary society that demands equality to access rights, yes, this is a problem, but there is a solution: more information and less prejudice. Thanks to autism, I’m able to go 12 hours without eating, drinking, or going to the bathroom to complete an activity related to my area of hyperfocus.
In addition, it was thanks to my diagnosis that I quit doing something I detested - entering administrative public service - and I changed my career. Today, I’m a trainer, and every day, I feel like a kid in an amusement park when I meet with my “students. ” It’s also thanks to autism that I’m here today talking with you, and that should be reason enough to be thankful, right?
If I had known that I was autistic from when I was a child, many things would be different today: I would have created better strategies to deal with my crises of sensory and social overload, to prevent more of the harassment, or maybe, just maybe that trip wouldn’t have ended in such a painful way for me. I wouldn’t have felt so bad for being who I am and for being unable to communicate directly with the “Windows” that I came upon in life. In place of today having panic and direction syndrome, maybe I’d have more patience with my driving difficulty or with tying my shoes or with shopping alone - with shopping in general.
Long live e-commerce, of which I was a fan even before it became popular. Diagnosis is my north star, and it has directed me. Without a diagnosis, I and the women I’ve met along this path who I’ve had the privilege to help would still be feeling ourselves incompetent, unmotivated, and alone.
Today, knowing that we’re “Linux,” we can communicate better with “Windows. ” It’s absurd to try to treat different ones as if we were the same. Ignoring the difference is as cruel as believing that being different is a bad thing.
Much of my life story would have happened in an easier way if I had known from childhood that I was an autistic woman, and what worries me most about the historic exclusion of women in relation to what is known about this condition is realizing that in 2021 things aren’t much different. We, women, still need to fight and insist to receive the correct diagnosis. For certain, you know an autistic woman who doesn’t even know she’s autistic, or you may even be this woman.
Listen, diagnosis is freedom, and the hour has come for us to demand that medicine take full account of women, including us, the autistic ones. Thank you.
