There is a need for better diagnostic tests for autism in women

“You don’t look lonely.”

That’s what people say when I first tell them I’m on the spectrum. But I look lonely. The problem is that people, especially clinicians, don’t know what to look for when it comes to recognizing and diagnosing autism in women and girls.

I am a teacher, screenwriter, producer, mother and autistic woman. The challenges I faced in obtaining my diagnosis led me to believe that we need to create a more accurate standardized test for autism and better diagnostic criteria for women and girls specifically. This test and these criteria should be jointly developed by women with autism and psychologists who understand how autism manifests in them.

The current review is an excellent example of how diagnoses can be linked to gender and ethnic bias. The most recent diagnostic criteria for autism have been established in Diagnostic and Statistical Manual of Mental Disorders (DSM-5) of 2013. This version contains very restrictive requirements for a diagnosis of autism, such as showing deficiencies in nonverbal communication, displaying social problems, using repetitive speech, and difficulty maintaining relationships.

These diagnostic requirements are older and more specific to the experience of white males with autism. The Diagnostic and Statistical Manual of Mental Disorders does not distinguish between subtypes of autism, including Asperger syndrome. This means that when women and girls visit their doctors and have symptoms that make them think they have autism, they say they do not meet the diagnostic criteria, resulting in an underdiagnosis or incorrect diagnosis.

Developing a more accurate diagnostic test is not just a matter of safety, but of quality of life, for the many women who, like me, are quietly struggling to understand why they are different.

Growing up in the ’90s, I was different from other girls, but I never thought I was autistic. I was on a different wavelength: I was drawn to philosophy and books that analyze the meaning of life, I was very literal and had an interest in math and numbers, as is typical with autism.

But, less commonly, I did not like being touched, laughing at inappropriate times, and eating the same food every day, often stimulated by smells, textures, and sounds. We are beginning to find that these traits are more common in women and girls with autism.

I was undoubtedly different, but because my traits were more subtle than we find typical of an autistic person, and because I’m used to hiding these idiosyncrasies (girls with autism and ADHD are so good at it), no one suspected that I was the spectrum.

It wasn’t until 2020, when I was in my thirties looking for autism for my son, that I began to doubt it. This is where my problems started. It took me a year to find a psychologist who offered testing for adults, understood women with autism, and didn’t cost me $5,000 or more for an evaluation because my insurance wouldn’t cover the test.

Most practices do not have an understanding of the diagnosis of girls and adult women. After a year of searching for a skilled, available and affordable psychologist, I finally found one and was diagnosed with autism in 2021. I was told I had Asperger’s syndrome, but since the release of DSM-5, the term has been incorporated into the general definition of “autism spectrum disorder” “.

Because of the narrow and gender-based diagnostic criteria, doctors often say we have menstruation-related mood or anxiety disorder, I’m told, or we’ve been given another classification that is not entirely correct. Throughout history, women have been mistakenly categorized as hysterical, when I think many of them may have been just nervous divergent and trying to fit into a neurotypical world.

Because of these false signs and a lack of testing, we have often been overlooked, misdiagnosed, or not diagnosed at all. Many of us end up self-diagnosing later in life, after years of wondering why we don’t feel at home in this world and in our own bodies.

Anxiety and depression are common in neurologically distant women, especially those who have not been diagnosed. Women with autism are three to four times more likely to attempt suicide than women with a neurotype. Comorbidities are also common in women with autism and can significantly increase risk. Research shows that women with autism and ADHD are more likely to attempt suicide.

We may look like “mother next door,” but our inner world tells a different story: a change of plans, a high-pitched voice, an exploding pungent perfume, a stray poster in a jacket, and suddenly we’re on the struggle to avoid a meltdown.

It’s stressful, and if you don’t have the privilege of understanding why you feel this way, it can be crazy. Knowing that you have autism (along with other neurological components) and that you are prone to anxiety, depression and fatigue can help struggling women get the treatment and support they may need.

But better diagnostic criteria are only the beginning. We also need more resources, such as group therapy and support groups for women with autism in adulthood. Educating educators, clinicians, and psychologists about what to look for in girls and women and how to adapt to us should also become the new norm.

Understanding autism in girls is also a safety issue, as these girls are three times more likely to be sexually abused. We tend to be more confident and naive because we are often very direct and direct and expect others to be as well. It can be difficult for us to realize the evil intentions and ulterior motives of others. This can make us more vulnerable and vulnerable to abuse.

Everyone deserves the opportunity to succeed and thrive, including women with autism. As more girls and women realize that they are neurologically far apart, careful testing and appropriate adjustments means we have a better chance of being our best.

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