MASKING • adverb
Any and all efforts taken to camouflage and hide someone’s signs of Autism Spectrum Disorder in order to appear neurotypical. This is mostly apparent with autistic women.
Traditionally speaking, it is safe to assume that men are allowed the most leeway in terms of how they are allowed to act. Females, on the other hand, are typically expected to act “ladylike” and “feminine.” Fortunately, we have several million progressive minds out there who are encouraging women of all ages to push past the forced “feminine behavior” and become exactly who they are.
There’s a unique pressure that gets put on women to act a certain way, especially when that pressure by women to other women. It can be expected that anyone out of this norm is considered abnormal. They’re weird, they’re an outcast, and they’re going to be outcasted. Or, maybe they’re neurodivergent and nothing is wrong with them whatsoever.
Deciding on whether they’re weird or autistic can be difficult, even impossible. Women who are, in fact, autistic have done a fantastic job of developing a skill called “masking.”
Masking is any and all efforts taken to camouflage and hide someone’s signs of Autism Spectrum Disorder in order to appear neurotypical. This is mostly apparent with autistic women.
Because masking is the art of camouflage one’s actions to come off as neurotypical, it’s not uncommon that a woman will either have a delayed diagnosis of being autistic, no autism diagnosis, or an incorrect diagnosis. (An ADD or ADHD diagnosis, for example, is common.) Misdiagnosis has been a problem for as long as autism spectrum disorder has been a psychological disorder. In fact, for everyone that receives an autism diagnosis, approximately 1 in 42 are men, while 1 in 189 are women. This makes boys 4.5 times more likely to get a diagnosis.
I understand that it can be difficult to find something that’s hidden from you, but this isn’t a matter of losing one sock from a pair, or misplacing your favorite pen. The result of not coming up with diagnostic criteria is extremely detrimental to young women.
An autism diagnosis can be lifesaving, allowing the parents of an autistic child to learn more about how to help their child and allow their child to grow into a successful adult. The parent can tune their child’s world to better work for them, instead of changing the child to match the world’s neurotypical, nonautistic standards.
Because of misdiagnosis, it is essential that we change the diagnostic criteria to include women. If Autism Spectrum Disorder is just that ─ a spectrum disorder, then professionals ought to do everything in their power to make sure at least 50% of the autistic population (women and transgender individuals) get included with their diagnostic criteria.
GET RID OF LABELS
I was initially (and unofficially) diagnosed as having Asperger’s, a type of Autism Spectrum Disorder, at age four by a speech therapist. For a woman on the spectrum, this was a miracle. While speech therapists are technically not qualified to give their patients an official diagnosis, it helped my mom tremendously in getting me specially catered help and assistance.
Whenever Asperger’s is used, it typically is followed by the words high-functioning autism, implying an individual is able to do some or most of the things a nonautistic person can do, such as talk, socialize with others, and participate in society. There’s definitely a risk we take when using terms like high-functioning to describe disorders of any kind, especially autism. Most autistic folk will tell you it’s a gross simplification of our the way we think, and our personal strengths and weaknesses. Personally, I cannot fathom why it’s possible, let alone moral, to simplify a complex organism that is the brain as something so binary as “high-functioning” and “low functioning.”
The times, however, have changed for the best. Instead of the “experts” being medical professionals, more and more autistic people have come forward to give first-hand testimonials on what their lives are actually like. We #actuallyautistic people have to remind our neurotypical friends that the best source is the source.
As a result, while Asperger’s is still used by autistic people as a way to describe themselves, we consider any description or mention of functioning language to be ableist, even if you personally don’t mean ill will by it.
For me, personally, it’s barely okay if you simply state, “Morgan has high-functioning autism, or Asperger’s.” The intent behind this statement is that you are explaining what Asperger’s is in an extremely brief statement.
Overgeneralizing as a rule is damning. Someone’s complex brain functions cannot be described in as little as two hyphenated words; this can have some seriously negative implications. Think of it this way: If someone asked you if you were high-functioning and you were to take offense to it, then why is it OK for you to ask an autistic person?
While I usually wouldn’t qualify Urban Dictionary as a legitimate source, one user laid out a very detailed definition of ableism that I’m going to borrow:
Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.Urban Dictionary
When a neurotypical uses the term high-functioning, I personally find it to be quite offensive. I hope and trust that it may not come across that way to you, but you have to realize what high-functioning means to me. As I’ve stated before, autistic women will often be misdiagnosed because they are too “neurotypical” ─ they don’t show enough signs from the diagnostic criteria ─ to be autistic.
More than this, it just puzzles me when someone thinks “you seem so high-functioning!” is a compliment. What are your standards and ideas of what autism looks like? Am I supposed to be mute? Have you never formally met a real autistic person before to realize that we’re average people?
TOO AUTISTIC TO BE NEUROTYPICAL;
TOO NEUROTYPICAL TO BE AUTISTIC.
When a woman doesn’t get her autism diagnosis, she is assumed to be too neurotypical to ride the ASD roller coaster. When a woman does show the signs of autism, it’s disregarded as something else by some professionals.
When I actually decide to show signs of my autism spectrum disorder, and act in a way that feels natural and true to my character, I open myself up to side eye, side comments, and gasps of shock and horror. “Just be yourself” is a myth. For me, it’s join or die; eat or be eaten. You don’t have a choice to be yourself most days, so you choice to wear the mask.
Having said that, you learn that life is a balancing act, and autism spectrum disorder is no different. I have a series of battles that neurotypicals won’t ever experience; that’s okay. I’ve gotten acclimated to that fact over the past two decades of my life.
My biggest hope is that people will understand what these battles are and respect them. I’m not expecting a pity party, just someone to listen to me.
My favorite example of someone coming by my side to truly sit down and listen to me is my newest ride-or-die, Stefhannie. A week ago, we talked about my blog and my openness about my autistic identity.
“You have Asperger’s, right?” she asked.
“Yes,” I nodded with a smile. “The terms change all the time, and it gets confusing for even me to keep up with it, but I truly don’t mind being called that.”
“I’m just so surprised that you are autistic. I have two [loved ones] that are autistic and you just don’t act like them.”
The difference here is that Stefhannie wanted to learn more. She was fascinated by my life, my blog, and was interested in learning more about the subject. It wasn’t just enough for her to work with people on the spectrum and have family or friends on the spectrum ─ she wanted to really know what their life was like.
So I told her ─ well, as much as one possibly can at a gay nightclub at midnight. I explained to her that normality is a myth, and while “high-functioning” is okay for a 2-second explanation, it doesn’t even scratch the surface of what my personal problems and reactions to my life are.
“I hear so many people go off about the dangerous, nonverbal person with autism that they happen to know, and it breaks my heart. If you had all these emotions, feelings, and stressors happening in your body, I’m certain you would react with rage yourself. Autistic people deserve better.”
So, I leave you, the hypothetical neurotypical reader, with this:
Support your friends who are neurodiverse. Tell them you love them, and that you’re a safe person to confide in. Life is absolutely miserable as is, coupled with the fact that we have a mental disorder (or two). I cannot stress enough how much it means for you to sit down and take a few minutes to see how we’re doing. It means more to us than you’ll ever imagine.