When sharing my autism diagnosis, it’s not unusual that I hear a variation of this phrase: “We’re all a little autistic.” (I distinctly remember my boss using this exact phrase.)

Um, no. Of course, not everyone is a little autistic. If everyone is, then there wouldn’t be a need for a diagnosis, would there? Autism would be the norm. But it’s not. It’s called the autistic spectrum disorder (ASD) for a reason – it’s a spectrum of autistic traits collectively representative of autistics, not neurotypicals.

Usually, comments like this are directed toward autistics whose traits present mildly and are highly skilled at masking them. 

But responses such as this only belittle us by dismissing our autistic experiences. Essentially, the person is saying that they don’t believe that our experience is any different than others. 

Some people may have good intentions behind using this response. By declaring that everyone has similar lived experiences, they hope to show an understanding of our struggles. Perhaps it’s an attempt to say, “I know what you are going through. I have social anxiety, too, so I can relate!” 

Whether they don’t believe us or are misguided in their efforts to relate, falsely claiming that everyone is on the spectrum is harmful to autistics. 

The dismissive nature of the response can cause us not to seek out the support we need. Because everyone is “a little autistic,” we experience similar struggles. Since everyone can overcome them without support, we are expected to do the same.

It can also lead us to question our diagnosis – specifically for late-diagnosis autistics. We’ve spent so much of our lives living with imposter syndrome because of the need to mask our traits. Too often, our ability to mask is fused with our true selves. We’ve pretended to be someone else for so long that it becomes difficult to distinguish ourselves from the mask. 

If everyone else is a little like me, then am I really autistic?

We need to remember this: neurotypicals see the mask and not the struggles behind the mask. To the outside world, the authentic autistic is the imposter because that is the side of us they have not seen. While for us, the mask is the imposter and our autistic traits are a part of our authentic selves.  

Yes, a neurotypical can indeed have one or two overlapping symptoms – but that doesn’t mean they are on the autistic spectrum. Anyone can be diagnosed with OCD or social anxiety, or a sensory issue. But these diagnoses are separate from autism. 

As stated by the Center for Disease Control, “To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction…plus at least two of four types of restricted, repetitive behaviors…” 

To be diagnosed with autism, you must exhibit a collection of autistic traits. Although each autistic has a different autistic trait profile (because, you know, it’s a spectrum), we still need to exhibit a collection of traits within the categories identified in the DSM to be diagnosed with ASD. 

So, let’s take a look at social anxiety. You can be autistic and have social anxiety…or just have social anxiety. 

The autistic trait is the limited ability to pick up on non-verbal social cues like tone, body language, and facial expressions. This can cause an autistic person to have social anxiety. A neurotypical person can have social anxiety but not be autistic. The trigger for neurotypical social anxiety is usually the fear of being judged. 

Healthline states that “while some symptoms between [ASD] and social anxiety, like social behaviors, may overlap, [Rochelle] Whittaker [Ph.D.] emphasizes that the causes of the symptoms are not the same.”

So, why do neurotypicals believe everyone is on the spectrum somewhere? 

They may not see the level of nuance in the distinction between autism and other overlapping symptoms. Quite simply, it comes down to a limited understanding of autism. 

To be honest, I’m not sure they intend to be insulting. As I stated before, they are expressing, albeit poorly, the discrepancy between what they see (the masking) and the autistic traits. Or it’s their attempt to make us feel connected: others can relate to our struggles. 

Either way, don’t allow someone else’s disbelief to make you feel like an imposter. You are the only person that knows where you end, and the mask begins. Only you know your lived experiences. 

If you can, take this opportunity to educate them on autism. Explain why they didn’t “notice” your traits and why everyone isn’t somewhere on the spectrum. Hopefully, they are open to learning more. 

Ultimately, every person’s lived experience is different from our own. We need to be open to giving space for each person to represent themselves authentically and not dismiss their experiences in disbelief or in a misguided attempt to relate. It isn’t limited to interacting with autistics; it’s for anyone with an unseen disability or condition. Many conditions and disabilities can not be seen. But we need to listen to and believe the person living with it.

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. 

Humans have fluid identities. The names or labels we use influence how we see ourselves and our place in the world. We build our experiences, emotions, and communities around those labels. As new labels are added to our lives, we reevaluate our identities to incorporate our new understanding.

This process happens after an autism spectrum disorder diagnosis. Names have value in our identities so it’s no wonder that a “battle over the name” has cropped up since the removal of Asperger’s Syndrome from the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Published in 2013, the DSM no longer supports an Asperger’s Syndrome diagnosis. Instead, the DSM reclassified it as autism spectrum disorder.

The general argument for the change is that the parameters for Asperger’s were not accurate and inconsistently applied. By reclassifying it, the methods for diagnosis are more standardized. It helps cut down on the confusion when diagnosing.   

Asperger’s fits comfortably on the autism spectrum. As a spectrum, individuals have different needs, but the types of symptoms remains consistent. To be diagnosed with Autism Spectrum Disorder, an individual must have social communication and reciprocity deficits and restrictive and repetitive behavior. These parameters for a diagnosis encompass those who would have received an Asperger’s Syndrome diagnosis before 2013. 

Despite the exclusion from the DSM, many continue to use the term Asperger’s, and it has caused a debate within the autistic community. It turns out there is more to the term Asperger’s than just a name. 

For those diagnosed before 2013, Asperger’s has become a part of their identity. It was the label given to them. It explained why they are the way they are. For a group of people who rely on routine and predictability, it is easy to see why a change in diagnosis can cause anxiety. They researched and learned about themselves in relation to an Asperger’s Syndrome diagnosis. 

Although my diagnosis is high-functioning autism, the psychologist who diagnosed me continued to refer to it as Asperger’s. (Had I been diagnosed before 2013, she said, I would qualify for the Asperger’s Syndrome diagnosis.)

It was with this term in hand that I set out on a path of understanding and self-acceptance. Following my diagnosis, the books I read to learn more about myself were written by adult Aspie women. Those early days of research aligned the Asperger’s label with my identity. The women I’ve learned from still use the term. I built my community on the term Asperger’s.

But I know it isn’t my “official” diagnosis. So, in the past few months, I’ve worked harder at moving between the two labels; increasing my comfort as an individual on the autistic spectrum.

There is a stigma associated with autism. People are less familiar with Asperger’s than autism; and this opens the door for me to educate them. It’s the groundwork to influence their perceptions before diving into the “it’s on the autism spectrum” part. 

Besides, we all know about Rain Man. He’s laid out some restrictive assumptions about what autism is and isn’t. I do not align with most people’s perception of autism. My life is littered with rejections, abuse, and bullies; people have always misunderstood me. Misconceptions about autism stare me down like a beady-eyed schoolyard bully ready to corner me on the playground. I fear those perceptions. 

While I feel “Aspie,” I catch myself using autistic more often. In expanding my connections to other autistic women, I feel less alone in my responsibility to educate the public. My confidence in confronting other’s assumptions about autism is also growing. The more I understand myself, the more comfortable I am in educating others. Maybe there is a correlation between the two.

Eventually, I will catch up with the DSM. I’m a high-functioning autistic (there is also a debate about the low, middle, and high functioning classifications).

The only way to change incorrect assumptions is to confront and counter them. Asperger’s was my introduction to what makes me tick. And it will be the pathway to accepting my formal diagnosis.

Whatever your take on the labeling debate, patience and consideration should be at the heart of it. Those who continue to call themselves Aspies have their reasons. And those who decided to make the switch have their own set of reasons.  

As humans, we spend our lives struggling with our identities. For many late-diagnosed women, the road to understanding our differences is a long one. Society makes autistic life difficult enough as it is. Let’s give each other a break and the space to explore our identities and our world in the ways that work best for ourselves. At our own pace, we will embrace this piece of our identity. More than a year has passed since my diagnosis, and I’m still trying to embrace it. Let’s allow each other to do it at our pace because each of us is different – and so are our experiences.