Translator: Elizabeth Torres Reviewer: Natasha Greenhouse
I’m a neuropsychologist.
I study the relationship that exists
between the brain’s developement
and all its behavioral manifestations.
Currently, my main job is based in carrying out
diagnoses of different neurodevelopmental disorders
such as attention deficit, learning disorders,
intellectual disabilities, autism, among others.
Over the last few years, I have specialized
in caring for children, adolescents and adults
with autism spectrum disorder,
or ASD, as we commonly call it.
ASD is a neurobiological condition
that is characterized by the difficulty to communicate
and interact with other people,
and it’s accompanied by behaviors
we call atypical.
It’s a spectrum because these manifestations are very diverse
and the intensity they present themselves with also varies,
in such a way that there are people who display this condition
a little more severely and others more mildly;
they can even go completely unnoticed.
It’s these latter ones who have become my main focus,
since many of them do not receive
a diagnosis or are incorrectly diagnosed,
and as such they lack specific treatment.
In my experience, I have identified
some cases that did not fit
in any specific clinical frame.
This motivated my interest to continue studying,
talking about similar cases with colleagues
and little by little I have been creating a behavioral profile
which, although similar, is very diverse.
For example, I will tell you about Renata’s case.
A girl came to my office one day,
her hair was dyed green, she was wearing all black,
she was wearing a sweatshirt with the hood covering her head.
It was the month of August;
those of us who live in Sonora know
that’s the worst time of year to wear a sweatshirt.
Her voice was faint, speaking very little.
It was hard to maintain eye contact with her,
since she constantly avoided it.
Her intonation was flat,
her face had no expression,
so I had to make
an extra effort to understand her speech.
I did not know if she was angry, sad, scared;
she was simply inexpressive.
Her reason for being at my office was truly generic;
she focused on having sleep problems,
difficulty relating to other people,
problems eating,
and a clear difficulty to regulate her emotions.
When I asked about her background,
Renata told me that she had always
had trouble or difficulties socializing with other people,
but it was not evident,
since she had a fairly large group of friends,
although she was a bit selective.
She told me that relating to other girls her age
was somewhat complicated.
They rarely had the same interests;
hers seemed a little abnormal and very intense,
so it was not strange for them to call her weird.
She also told me that something as simple
as starting and maintaining a conversation
was truly a challenge for her.
It generated a lot of anxiety.
She was always careful not to say or do anything awkward.
She had to remind herself
to look the other person in the eye,
making an occasional comment
to ensure that the speaker knew
that she was paying attention.
She also told me, unfortunately,
that she had been a victim of abuse
from classmates, even from romantic partners,
because she did not notice
these people’s bad intentions;
so it was very easy
for them to get her involved in risky situations.
She appeared to be oblivious to social chatting,
she had trouble reading between the lines and often did not notice
when someone was being sarcastic.
She took jokes very personally
because she did not understand them.
Renata told me she enjoyed her alone time;
it was the only time in the day
when she did not feel the need
to wear a social mask.
She told me, and I quote,
“I think I am broken and nobody can fix me.”
To this day, those words keep echoing in my feelings.
I had no choice but to find an explanation
to understand what was happening to Renata.
One day I found a talk
by Maria Merino, a Spanish psychologist.
She described some behaviors
very similar to those I was observing in Renata.
It was a behavioral phenotype
of women with high-functioning autism.
Don’t misunderstand my words.
This does not mean that
high-functioning autism was just discovered.
However, if you are a woman,
it’s very likely that it’s not seen.
Women with autism are a group of people
who, like Renata, are on the autism spectrum.
They appear to have the ability to communicate
and interact with other people.
However, this is because many of them have developed
strategies we call social camouflage.
This means that they become great observers,
they imitate and copy other people’s behaviors,
they take on the personality of another person
and hide their difficulties.
Autism in women, this behavioral profile,
doesn’t fit within the criteria of more recent diagnoses,
so many of them are excluded from receiving a diagnosis,
and, as a result, from receiving treatment.
Researchers around the world affirm
that autism affects more men
than women with a 4 to 1 ratio.
Given this, I ask myself,
how many women are undiagnosed?
Among many reasons,
on of the causes is the existing bias.
Historically, we’ve been known as hysterical,
so for many of the symptoms that come to consultation,
it’s very easy to say these are psycho-affective disorders
and not look further into it.
Women with autism suffer double discrimination
for belonging to a group of people
with being neurodivergent and for being women.
This makes them more likely to present
emotional disorders, interpersonal problems,
and as a result, a more limited social support network
and other social problems such as difficulty to work
and to maintain a job, which results in economic dependency.
It’s imperative that we demand
current criteria to be updated,
and also that we professionals
stay updated.
It’s very unfortunate how after so much work
to diagnose, study the background,
talk to friends and family,
it’s sadly the very colleagues
who discredit the diagnostic by ignoring
the behavioral profile of autistic women.
Renata now has a diagnostic and treatment.
This has substantially bettered
her quality of life and her self-perception.
Now she’s well versed in the topic
and she’s sharing
her experiences on social media
with the hope that other women
can see themselves reflected in her experiences,
can recognize themselves and look for specialized care.
Autistic women face challenges
which, although real, are not evident
to other people.
As a society we should pay attention.
As mental health professionals we should continue studying
the topic of neurodiversity and all of its manifestations.
As a society, enable this group of people to be visible,
so we can be more empathetic and avoid stereotypes and prejudices.
Renata does not exist;
she’s a compilation of the many women with autism
that I have seen in my practice.
The objective of this talk is to reach more women
who can identify with this,
so they may know they are neither alone nor broken.
Thank you.
(Applause)