Going beyond labels: How does it feel to be an autistic woman?

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This blog is in honor of World Autism Awareness Day.

 

By Nouchine Hadjikhani, Professor and Neuroscientist

“Given the right circumstances, being different is a superpower” wrote 16-year-old Greta Thunberg on 31 August 2019. And of course, every person is a unique individual. But what exactly does it mean to be different, and to be an autistic woman?

I am a doctor, a neuroscientist, and I do brain research about autism, amongst other things. Autism is a neurodevelopmental condition that affects about 1% of the population, and that is defined by difficulties in social interactions and communication, and by the presence of restricted interests and repetitive behaviors – at least that is what the textbooks say.

Autism is more than just a diagnosis. It is also a condition that affects myriad aspects of daily life, because it is accompanied by hypersensitivity to a lot of things (smells, sounds, lights), and difficulties to engage in eye-contact which can result in misinterpretation when interacting with others. For some reasons, its manifestations are quite different between male and females.

Autistic girls often seem to develop camouflage strategies, so they are frequently diagnosed much later than boys, sometimes as late as their teenage years or during adulthood. They regularly present symptoms secondary to their autism such as eating disorders, depression, or anxiety.

As I was thinking about writing a blog about women and autism, I had an idea:

I wanted to break from the usual blog format, so I reached out to Clara, an amazing woman with whom I have been in contact for several years now. We have never met in person, but we often talk or write to each other. Clara Martins de Barros has been diagnosed with autism a few years ago (when she already was an adult), by one of the best specialists in the UK. We frequently share our experiences, discuss doubts or anxieties, but we also laugh a lot together. Over time, Clara and I became friends.

Clara tried to overcome her difficulties by becoming an actress, because she wanted to understand how to fit in to a world that felt so alien to her. She also became a clinical researcher. She is amazing, reads tons of books, and knows a lot about her condition, and the brain in general. She has been a fierce advocate of the autistic cause on Twitter as well – you can find her under @Clara_MdB.

The Proust questionnaire* is an old personality test that became famous after Marcel Proust replied to it, during his military duty in Orleans, France, in 1886. It has over 30 questions in its original form, and I selected a few for Clara to answer.

Here is what she wrote:

What is your idea of perfect happiness?
Generic questions for me as an autistic person are difficult. If I were to describe perfect happiness, I’d need to start by saying I don’t believe in perfection. Overall, and seeing as we are debating a theme, I would say a world where all neurotypes are accepted, respected, and have equal rights in society.

What is your greatest fear?
The fear of being alone, of not having someone to be there in times of sadness and happiness. Of being ill and lonely. I feel very lonely.

What is the trait you most deplore in yourself?
Deplore is a strong word. I guess I would say the one I least like? That I am not always as assertive as I ought to be.

What is the trait you most deplore in others?
I don’t like people who are cruel. That is something I wish didn’t exist. We could all try to be kinder.

What do you consider the most overrated virtue?
Physical beauty. What lies beneath is sometimes a very different and beautiful story.

On what occasion do you lie?
I hate lying, it’s against my nature, so having to do it is sometimes a matter of survival.

What is the quality you most like in a man?
In all people regardless of gender, I like kind people.

What is the quality you most like in a woman?
Same as above.

Which talent would you most like to have?
I would like to have my executive function working effortlessly. I’d also like to fly!

If you could change one thing about yourself, what would it be?
To not be so sensitive. Autistic people are often accused of not being empathic, of having no feelings, and that is the utmost rubbish I have heard. We feel too much. The way we show emotions (or not) is where we differ.

What do you consider your greatest achievement?
How after my late diagnosis I worked so hard both to attain qualifications as well as my advocacy work, revolving around mental health, autism, and clinical research in general.

If you were to die and come back as a person or a thing, what would it be?
Probably you! With your looks and my brain I’d be invincible… Wait, we already ARE a duo (this is a joke, autistic women CAN joke)!

What do you regard as the lowest depth of misery?
Loneliness. How can a planet with 8 billion people have in it humans who are lonely? This is incomprehensible to me. Equally, to be so financially poor that you have no access to food, healthcare, or shelter. That some have so much, and others are dying physically and emotionally because of inequalities.

What is your favorite occupation?
Actress or Clinical Researcher.

What is your most marked characteristic?
Positive or negative? I guess it depends on who is judging… Perhaps my sense of humour, which can be both!

Who are your favorite writers?
Too many to mention. I read according to books not authors. I love R. Sapolsky, and read more non-fiction than fiction.

Who is your hero of fiction?
Autis – She’s a heroine I have constructed, and she creates a parallel world for autistic people, where WE are the norm, and we are respected, happy, and fulfilled.

What is your motto?
Be Kind.

At the Women’s Brain Project, we support Clara’s vision of all neurotypes being accepted, respected, and having equal rights in society. Our focus is on sex and gender differences in brain and mental health, and autism is one of many topics this touches on. You can follow us by signing up for our newsletter, or by looking us up across social media under @womensbrainpro (we’re on LinkedIn, Instagram, Twitter, and Facebook).

*The Proust Questionnaire was used by Vanity Fair in the 1990’s for a series of interviews of celebrities and high-profile individuals. The results got turned into a book. To view the full questionnaire, click here.

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