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. 

I learned early on in my life that I am never right. I am always wrong. Always acting wrong, always dressing wrong, always saying the wrong things, just always wrong.

I have Asperger’s Syndrome as known as high-functioning autism. While I always knew that something was different about me, it wasn’t until last year, at the age of 39, that I finally received a formal diagnosis.

In observing other girls – when I was growing up – and women, I learn how to copy the social niceties. In my mind exists an instruction manual I’ve built over time. In social situations, I flip through the manual and follow the instructions. It is an exceedingly difficult and conscious process.

Obsessively, I rehearse social situations before I encounter them.

I pretend to be something I am not. I mask.

Masking is when a person purposely hides their autistic symptoms to conform to societal norms. If you know an autistic individual, work with them, or are one, you are probably familiar with this term.

Though my effort to mask myself is often successful, it is not infallible. Cracks inevitably appear; the truth finds its way to the surface. I slip up.

Because of the effort to mask, depression, exhaustion, and anxiety are constant companions.

This cycle is a vicious and exhausting one.  No matter how successful I become at masking myself, I only find myself in mental and emotional anguish. The more an Aspie masks, the larger the toll on their mental health.

And this leads me to this website. As I searched for inspiration in naming this site, my thoughts always led me back to masking. Or, more specifically, the conflict between who I am as a person with Asperger’s and what the world around me feels I should be.

While the Asperger’s diagnosis helps me understand why I am the way I am, accepting it isn’t as easy as an actor yanking off a mask at the end of a play and calling it a day. Society expects the mask, not the autistic traits.

And so, this is the reason I have named my website To Aspie or Not to Aspie. Just as masks hide the identity of actors on stage, my mask hides my Asperger’s to some degree.

We pretend to be “normal” to our own detriment. There is no cure for autism. The conflict comes in how to balance the world and ourselves. This is what I want to explore for myself and other late-diagnosed women. Sharing our stories and lessons can help each other as we learn to navigate our worlds.

Welcome to my journey! It always helps to know that we are not alone in our struggles, which is why I would love to hear from other adult autistic women. 

It was the fifth night in a row that I found myself sitting on the floor of the shower, legs folded under my chin and arms hugging my knees. 

Rocking myself, I sang “My Favorite Things” between whimpers as tears mingled with the warm water puddling around my feet.

I was having an autistic meltdown though I didn’t know it at the time.

An autistic meltdown is unnerving. It is usually brought on by overstimulation, whether by stress, changes in routine, lights, sounds, socializing, etc. The only way to deal with it is to let it run its course.

I’ve had meltdowns all my life but never twice a day for five days in a row. They were persistent.

When COVID-19 came to Texas, our overworked and understaffed communications department was flung out of our ordinary world. And I was unable to cope.  

When the offices and schools closed, my husband had to close his small business. While it was a big hit to our finances, it did mean he had the time to handle virtual learning for our son and ensure I didn’t die of starvation.

For the first two months of the lockdown, I worked remotely all day, every day – no weekends off. I marked my time by the plates of food my husband shoved between my keyboard and me at mealtime.

Although everyone else on the team was exhausted and stressed, they handled things in stride. Or they just handled it. But I didn’t.

I’ve struggled all my life to make and keep friends, socialize, manage the stress of a full-time job, and motherhood. Always, failure nipped at my heels, and depression reigned supreme.

I am different and unable to adequately function in a world that seems so foreign to me.

While I suspected for quite sometime before the pandemic that I was on the autistic spectrum, I was conflicted about pursuing a formal diagnosis.

But COVID-19’s force majeure on an unsuspecting me was too much. Already holding myself by threads, I decided it was time. It was time to confirm what I already suspected.

I scheduled the necessary appointments, took the tests, and received the diagnosis: Asperger’s Syndrome (aka high-functioning autism).

As the diagnosis was read to me, nothing magical happened. No light bulbs went off. No fairies sang. No rainbows danced over my house. And nothing inside me changed. I still have meltdowns and struggle with a stressful work environment. A “How to Survive the World as an Aspie” manual didn’t come with the diagnosis.

But one thing the diagnosis did come with – understanding. This is me. And I felt for the first time in my life I had the license just to be me. Finally, at the age of 39, I was able to look in the mirror and introduce myself…to myself. Finally, I understand why I am the way I am. And now I have something to work with.

It turns out understanding yourself is a powerful tool when living life. I only hope I can put it to good use.

Why did you seek a diagnosis? Did it change your perspective? I’d love to hear from other women diagnosed with autism. If you are willing, please share in the comments below!

Women with Asperger’s Syndrome (AS) (aka high-functioning autism) become mothers, too. While limited research on the topic is available, I believe that knowledge of my condition would have helped me better prepare for the stressors and challenges faced by Aspie mothers.

Sensory Overload

During pregnancy, my changing body sent my sensory issues into overload. My body was all wrong. My skin hurt when touched; clothes felt foreign on me. And the overload never turned off. Day after day, I could not find relief from the overstimulation placed on my own body.

Once my son arrived, a new set of challenges emerged. Between the crying, feeding, and constant touching, my need for routine and recovery from the sensory overload went into a tailspin.

Motherhood Multitasking

Juggling the needs of this very dependent baby with other life responsibilities was like juggling 20 baseballs and riding a unicycle – at the same time. Something was always falling. And, worse, sometimes I don’t even notice when it does. That is how difficult it is to keep up. In a recent study, only 51% of autistic mothers feel they are able to handle parental multitasking compared to 94% of non-autistic mothers.

How many times did this mommy cry along with her baby? Too many to count.

Guilt

Several friends became mothers around the same time, but they didn’t seem to have the same issues. They questioned why I felt the way I did. Their response always involved a version of “you are overreacting” or “you are exaggerating.”

At the time, I didn’t know I had Asperger’s Syndrome (AS) or the specific struggles I would encounter because of it. All I knew was that I wasn’t built to be a mother. I couldn’t handle it. I was a failure.

The pressure to handle motherhood like the neurotypical women in my life was constant.

Guilt weighed on me. I love this child, but I couldn’t be a mother. How could that happen? How could I not be what he needs? I believed that my son was better off without me. Autistic mothers are more likely to experience postpartum depression according to the same study.

Knowledge is Power

Had I known that I was an Aspie, perhaps my husband and I would have been more prepared for the challenges.

There is extraordinarily little research on autistic mothers. After Googling “autistic mothers,” most of what is coughed up by the Google-gods are articles on mothers raising autistic children.

But the few studies that do exist, suggest that the challenges for autistic mothers are exponentially greater with the increased risk of postpartum depression, the lack of support systems, and difficultly juggling parental multitasking.

But knowing your limitations and preparing for them is essential to enjoying motherhood.

Work with your partner to ensure you have time to walk away from the sensory overload.

Take the time to focus on yourself by indulging in your self-interests, meditate, or soak in a warm bath. Whatever you do, be sure you are uninterrupted, and you can clear your mind.

Remember that no one is a perfect parent. Let the chores go if you need a break. Share the workload with your partner. (It doesn’t matter if he doesn’t do the dishes “correctly.”)

Find a support system, even if it is online, and don’t be afraid to ask for help.

And, most importantly, if you are experiencing depression seek professional help.

Although my children are older now, receiving my diagnosis has helped me tremendously. I have a better understanding of myself and how I approach relationships with my children. Because of it, I’m a better mother.