Lost Girls: The Shocking Reason Why Autistic Women Are Undiagnosed

Nearly 24 years ago, I was diagnosed with autism spectrum disorder (ASD). My parents were concerned that I wasn’t speaking simple sentences. Plus, the sounds of my dad’s snoring and my little sister’s crying would drive me insane––one instance involving a broken kerosene oil lamp (which was an accident)––and my time at a Pre-K program was cut short due to terrible separation anxiety.

My diagnosis granted me much-needed access to autism services, particularly occupational and speech therapy. I was also given preferential seating, extended time on tests, and laptop use for notetaking in school––accommodations which guaranteed academic success in a world designed for neurotypicals.

I’m thankful to the doctor who diagnosed me early, my occupational and speech therapists for helping me reach critical milestones, and my family for never giving up on me. I would’ve struggled socially, mentally, and emotionally if it weren’t for them.

Sadly, a lot of autistic girls aren't so lucky. Many of them go undiagnosed throughout their childhood, and don't get diagnosed until adolescence or adulthood.

The worst part? There are plenty of autistic women who remain undiagnosed to this day.

Girls Are Less Likely to Be Diagnosed With Autism Than Boys

More and more people, including adults, are being diagnosed with autism each year. It’s all thanks to increased awareness efforts as well as continuous studies on what once was considered a mysterious disability. Our understanding of autism has evolved over the past decades.

But females are still less likely to be diagnosed with autism than their male counterparts. They are also more likely to be misdiagnosed with anxiety disorders, mood disorders, personality disorders, and other mental health issues.

According to a Morbidity and Mortality Weekly Report (MMWR) published by the CDC in 2020, about 4 in 100 boys are diagnosed with ASD in the U.S., compared to 1 in 100 girls.

In another report published in 2022, boys are also three times more likely to be diagnosed with ASD than girls.

And when it comes to being diagnosed with autism, boys are 10 times more likely to be referred to a doctor for an autism diagnosis than girls. 

So where does this leave autistic women? You guessed it: lost, ignored, and unaccounted for.

Virtually 80% of autistic women remain undiagnosed, and when they seek therapy, it can take up to 10 years to be properly diagnosed. 

These numbers are unacceptable, which leaves these questions: why is the diagnostic rate for women still so low? Why are there more undiagnosed autistic females than diagnosed?

The Criteria for Autism Is Male-Centric

What do Leo Kanner's and Dr. Hans Asperger's studies on autism have in common? They center squarely on autistic boys.

A hard pill to swallow? The signs and symptoms of ASD are mainly based on observing boys with autism. In fact, that's been the case for many decades!

This isn't me writing off the autism criteria. I think the signs and symptoms used to identify and describe autistic children and adults are pretty accurate. What I'm saying is there is a severe lack of research and studies based on observing signs and symptoms of autism in females. 

In short, the medical community needs to consider how autism can manifest in males and females, and usually, the differences are explicit.

Autistic boys are more likely to exhibit communication and behavioral differences more outwardly than their female counterparts, who are more likely to do better at socializing with their peers while also internalizing their problems. The trouble for autistic girls is that many tend to struggle as soon as they reach adolescence and/or adulthood. 

The special interests of autistic boys and girls can also look different. Boys with autism may be interested in trains, stamps, dinosaurs, and Legos, whereas girls with autism may be interested in cats, drawing, boy bands, and the hottest book series. While again, their mileage may vary, their special interests usually align with traditional gender norms (i.e., boys’ activities and girls’ activities). And because an autistic girl’s interests are usually considered “age- and gender-appropriate,” they’re often not scrutinized.

While some people might think otherwise, I strongly believe that men and women experience autism differently. That isn’t to say that there are autistic men who keep their struggles tightly shut up in a bottle, or autistic women who stim more freely in public.

It’s also important to note that many high-functioning autistic men and women have masked, or camouflaged, their traits and symptoms while out in public, or while hanging out with a group of people they didn’t know too well. This is one of the big reasons why so many adults are being diagnosed with ASD later in life, which also explains the sharp increase in autism rates around the world!

But while I was reading up on autistic masking, I learned something else: autistic women are more likely to engage in masking behaviors than autistic men.

Autistic Women and Girls Master the Art of Masking

Everyone masks.

We do it around certain people. We do it at work or school. We do it when we’re going out to dinner. We don’t even rest until we get home, which is a safe place for many people to be themselves.

Masking for long periods of time can leave us feeling like a dried-up husk by the time we can rest and unwind, and masking can make us feel like we’re hiding our true selves. It can even cause us to feel like we’re phonies and start to question who we really are. 

But masking can feel different for neurodivergent folks, especially for high-functioning autistic people. The difference is that we’re hiding our autistic traits and symptoms from others in fear of judgment or exclusion. 

For example, we might experience sensory overload at a party and want to leave, but we don’t want to be seen as a party pooper by our peers, so we keep our discomfort to ourselves to keep the peace, in hopes that we’ll endure it.

We mask in hopes of appearing “normal” enough to fit in with our peers––at a very heavy cost. When we mask, we often pay with our mental, physical, and emotional health. When we mask for prolonged periods of time, it catches up with us in the form of autistic burnout.

Interestingly, autistic women and girls are more likely to engage in masking behaviors than autistic men and boys. Unlike our male counterparts, we are expected to behave in traditionally feminine ways from early childhood (and autistic women aren't immune to these expectations):

• Why are you so emotional?

• Take that shirt off–girls don’t like dinosaurs.

• Good girls don’t get angry.

• It’s all in your head.

• Just do as you’re told.

• She’s gonna be such a heartbreaker when she grows up.

Because we mask a lot, we often slip through the cracks when we’re getting a check-up or being subjected to parent-teacher conferences for grades and conduct. 

In other cases, autism symptoms can look like symptoms of bipolar disorder, schizophrenia, and personality disorders, leading to a series of misdiagnoses. In a study by Rydén et al., 15% of autistic women at a mental health clinic were seeking treatment for borderline personality disorder (BPD). It doesn’t help matters that the symptoms are similar to autism (e.g. social problems, emotional dysregulation, communication issues).

We're then subjected to psychotropic medications and therapies. Instead of receiving proper care, we end up being treated for a mental disorder we don’t even have. This can have detrimental effects on our physical and mental health in the long run.

The Consequences of Being Undiagnosed Are Staggering

Some people might think that if an undiagnosed autistic person went their whole lives with minimal to no issues, then there’s no reason to be diagnosed.

While there are exceptions to the rule, this is certainly not the case. Many high-functioning autistics who were diagnosed later on in life can pinpoint many aspects of their childhood where they may have been autistic. They may recall certain periods where they were experiencing traits and symptoms of autism and didn’t even know it.

Make no mistake: autism is not always visible to the public eye, and sometimes not even to ourselves. We may not need round-the-clock care from our caregivers, we may not have co-morbid health issues, we may not even have extreme meltdowns when our sensory systems are at max capacity…

…But we can experience it on the inside, and without the proper care and support, we overcompensate and constantly police our every movements, words, and thoughts without giving ourselves a chance to rest and just be. We do this for years until our nervous systems are so spent that we burn out.

The costs of autistic masking have serious consequences, including psychiatric disorders, chronic pain, substance abuse, job instability, loss of skills, and safety risks. Undiagnosed autistic women also face being more vulnerable to abuse, manipulation, sexual assault, and trauma.

Sadly, most of these women end up being diagnosed with autism when they’re in the throes of a mental health crisis.

Better Late Than Never But More Work to Be Done

The revelation of an autism diagnosis is often relieving. 

Autistic women begin to understand themselves more and realize that nothing was seriously wrong with them. They end up giving themselves more grace and compassion for their shortcomings and embrace the “weird” side of them they so desperately tried to keep under lock and key.

And for many of these young women, finding autistic content creators who share their stories about being autistic, especially those who were later diagnosed, is life-changing. Knowing that they’re not alone in what they've experienced can be comforting.

But with celebration also comes a grieving process––not because they were diagnosed with autism.

They grieve for not knowing or getting diagnosed sooner. They grieve for not receiving proper support to help them navigate a world that wasn’t built for them.

It also comes with naysayers. 

I noticed a ton of hateful comments on autistic people’s posts and videos, accusing them of faking their autism for Internet clout. A few of them even go so far as assuming that their doctor must’ve made a mistake diagnosing them with autism––even if they were diagnosed at a very young age based on observing their social, communication, and behavioral differences. 

Interestingly, a ton of these comments are targeted more towards autistic female content creators than autistic male content creators.

This makes me assume that once again, autistic women are judged based on a narrow understanding of what the spectrum actually is. When they think of autism, they either think of someone who is a real-life Sheldon Cooper from The Big Bang Theory or a nonverbal autistic kid or adult who is often a danger to themselves or others and can’t take care of themselves. 

And usually, they very often think of an autistic male.

What Can We Do About It?

Without abandoning the current diagnostic criteria, the medical community needs to reexamine how they think about autism spectrum disorder, particularly in how it manifests in women. 

This could mean challenging gender stereotypes, acknowledging autistic masking, and recognizing the signs and symptoms of autistic burnout in women. Doing so could prevent them from receiving unnecessary treatment for a misdiagnosed mental disorder or going their entire lives, having no clue of who they are.

It’s also important to ensure late-diagnosed autistic women receive proper support, like trauma-informed therapy, support groups, accommodations, and social skills groups.

Connection Across the Spectrum (CATS) is a great place to start. Whether you were diagnosed early or late, making real-time connections with other autistic women while trying new things in a safe, nurturing environment can be a real gamechanger. 

I wanted to improve my social skills and self-confidence with autistic and non-autistic people, and I searched high and low for support and/or social groups for people like me to hang out, make friends, and learn new skills. 

Frustrated at the lack of options in New Orleans, I reached out to Kimmy, my occupational therapist, and poured my heart out to her about my struggles. Within a month, we, along with my friend Mason, manifested CATS, and a year later, we became well-known in the greater New Orleans area!

My hope is to see more and more autistic adults get a chance to grow in their social relationships. I especially hope to see more autistic women join in the years to come. I think having some kind of sisterhood is critical to our wellbeing.

You can help autistic women like me continue to have these life-changing moments by donating to CATS. 

To learn more about CATS, visit www.connectionacrossthespectrum.org. 

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