Why Don’t They Believe I’m Autistic?

My gynecologist said it first. But she was not the last. Everyone I discuss my diagnosis with has a similar response:

“You don’t look autistic.”

What do people expect to see when they look at an autistic person?

Autism is so integral to who I am that their disbelief is hurtful. I was diagnosed with autism at 39. I’ve spent my life never quite fitting in with the world around me. Late diagnosed autistic women like me float around the fringes of social circles. Too “weird” to be included in the friendships forming around us.

For me, a diagnosis ushered in a new level of self-understanding. I had hoped it would help those around me understand, too. Instead, they met me with disbelief. It seems I can’t do anything right. I am too weird to be normal but not autistic enough to be autistic?

Scenes like the one with my gynecologist are not unusual for late-diagnosed women. It’s a common theme. We are not believed. So, why is that? Why are people in disbelief when we have a professional diagnosis in hand?

It all boils down to their perception. 

The Public’s Exposure to Autism

The reality is that most people’s exposure to autism is limited to the entertainment industry. Production companies have this incessant desire to limit the portrayal of autistic characters to a single set of characteristics.

Early segregation of autistic people in schools and the workforce also hindered the public’s exposure. With so few opportunities to be exposed to individuals on the autistic spectrum, it’s no wonder most people lack understanding.

And I find it hard to blame them. Even I knew almost nothing about autism until I considered it as an explanation for my son’s social difficulties. 

The portrayal of autistics in the entertainment industry, coupled with early autistic segregation and research, fueled false stereotypes. These stereotypes seem to be the only exposure or awareness the public has to autism. 

Stereotypes

Our brains look for patterns. We categorize people, concepts, and things into little boxes. And this is how stereotypes are formed.  

Stereotypes are often based on inaccurate information or negative experiences with members of a particular group. Stereotypes are assumptions; and when we assume something about an individual, we don’t give them a chance to show their colors. Basing our interactions with them on assumptions can cause us to place unwarranted and, sometimes, discriminatory obstacles in front of them. 

Here are a few pervasive stereotypes that plague autistic individuals, more so late-diagnosed autistic women. (Please note that these stereotypes can hurt any autistic individual. I’m only focusing on those that have a profound impact on late-diagnosed autistic women because it is my experience.)

It’s a Boys’-Syndrome

We base much of our medical knowledge on research conducted on males. For example, did you know that heart attack symptoms are different in women than men? You’d think that is an important distinction we need to be aware of, right? But heart attack research is based on men’s experiences. I didn’t realize this until I ran across an article about many hospitals turning away female heart attack sufferers.

The article found me at a time when I was researching autism as an explanation for my son’s social struggles. My son and I have similar behaviors and personalities. But he checked all the boxes for autism, and I didn’t. 

After reading the heart attack article, it occurred to me: maybe autism is different for girls. Researching ‘autism in girls’ instead of ‘autistic traits’ was enlightening. I managed to track down a few articles discussing the ways autism expressed differently in girls. Finally, a checklist of traits I could relate to. 

Early researchers focused on autistic characteristics as they are expressed in boys. This caused diagnostic tools to be created with male autistic criteria–not girls.

“Research that investigates and differentiates the male and female profile, presentation, and experience of autism is fairly scarce, perpetuating the myth that autism is a significant male-dominated condition, or that gender is simply not a consideration,”

–Sarah Hendrickx, Women & Girls with Autism Spectrum Disorder

Despite the advancements in autism research, many of the old assumptions still plague the public’s perception of autism as a boys’-syndrome.

Autistics Lack Empathy

This one is particularly damaging to female autistics. Empathy is one of those ‘motherly’ and ‘nurturing’ characteristics society expects women to have. We feel the pressure of expressing empathy in the ‘right’ way at the ‘right’ time or risk being viewed as cold-hearted. 

Late-diagnosed autistic women have learned the behaviors and responses we ‘should’ have to express empathy. Our social interactions instruction manual in our heads usually includes an entry to guide us through situations when an expression of empathy is warranted.

What people need to understand is that we do feel empathy, we just don’t know how to express it or connect with it. Often, our lack of experience with another’s situation prevents us from feeling empathy or expressing it in the expected way. Making the conscious effort to play out a similar scenario in our heads using ourselves and family members to play the parts can help us jump-start our emotional responses. We can empathize when can ‘live’ the experience.

We must imagine ourselves in the scenario or respond with the words or phrases society expects from an empathetic person. 

Also, society is more lenient with male’s lack of emotional response. Men are allowed to be aloof and less emotional. Autistic men may appear to be without empathy – because they struggle to express it – but they don’t put in the extra effort to mask that struggle.  

The point is: we do feel empathy. But the extra work we go through to either relate or respond correctly skews the view of those around us.

Because I show empathy, people don’t believe I’m autistic.  

Adults Don’t have Autism

If you are a recently diagnosed adult autistic woman–like me–you have many stereotypes working against you. Since autism is often diagnosed in childhood, there is little research, and therefore understanding, of autism in adults. 

The misconception is if we weren’t diagnosed as a child, then we aren’t autistic ‘enough.’ 

Unfortunately, it’s not general knowledge that autism was never considered as a diagnosis for girls. Many girls grew up coping with it as we went along and wrongly diagnosed with other conditions. Unlike most autistic boys, we devoted a substantial amount of energy to masking (aka camouflaging) our autistic traits to fit in. 

People in our lives are used to the masked interactions they have with autistic women before hearing a word about autism. I can imagine it’s difficult to wrap their minds around that fact that we aren’t being our true autistic selves and only saw the person we pretended to be. 

Sarah Hendrickx said in Women and Girls with Autism Spectrum Disorder, “… women with autism are a lot more ‘autistic’ than they look,” and “The majority of these [autistic] women are getting through each day with an often sophisticated set of compensatory behaviours, personas and clever strategies for avoiding certain situations without anyone knowing [they are autistic].”

Because of the lack of research on autistic expression in girls, we flew under the radar. We hid our experiences and autistic traits. Now as doctors diagnose our children, we see the similarities and wonder… could I be autistic, too? Today, doctors look at both parents to determine the hereditary source.

An entire generation of autistic women are just now discovering who they are and sharing their stories.

The rise in women receiving diagnoses has also increased awareness for autistic adults. Autistic children don’t outgrow autism. Autism is in the very fabric of our being. We are and will always be autistic. Perhaps our ability to hide it in a neurotypical world improves as we grow into adulthood, but we will always be autistic.

What can we do about the stereotypes?

Foremost, let’s share our stories. Let’s talk about why we don’t fit the stereotypes. Let’s talk about autistic people as individuals: each just as different as the next. The more we share our experiences, the more opportunities we give others to learn.

It can frustrate and exhaust us to push through the barriers others set in front of us because of their assumptions. Finding the patience and courage to push past them and speak up is essential. Autism isn’t a dirty word. Being on the autistic spectrum isn’t a curse. Speaking about the individualism of autism can help reshape people’s understanding and perceptions. It’s called a spectrum for a reason. Each individual’s autistic characteristics are expressed at different levels. 

“If you’ve met one individual with autism, you’ve met one individual with autism.” 

— Dr. Stephen Shore

It’s time to throw autistic stereotypes out the door. By sharing our stories, we give people a chance to see just how different we are from each other.