April is Autism Acceptance Month, a time used to educate people about autism in hopes of fostering greater understanding and advocacy. If you have heard of this observed "holiday" but know it by the title Autism "Awareness" Month, you are not alone. It has only been recently that this has changed. This has a lot to do with the myths that pervade autism and the lives of autistic people. But times they definitely are a-changing.
A Quick & Utterly Incomplete History
In the past, Autism education was, sadly, tantamount to spreading fear...fear of what autism is, where it comes from, how it was ruining our society, and how to eliminate it from the population. This shouldn't really come as a surprise. The majority of the population did not know that autism exists until well into the 1990s. I certainly didn't.
Even once it entered mainstream consciousness, the information was driven largely by mental health professionals, who were often hamstringed by outdated criteria from obtaining a total and an in-depth understanding of this neurodiversity, as well as parents, whose understandable fear for the health of their children fueled the fire of misinformation for this "epidemic." People did their best to understand, but it still amounted to a collective reaction of fear. As a result, much of what was discussed was geared towards addressing the terror and desperation that parents felt at the mere possibility their child might have autism, training autistic people to appear and act like the allistic (non-autistic) majority, and disturbingly eugenics-tinged demands for a "cure."
Fortunately, you can't stop progress. Concurrent to the debunking of erroneous theories about causes and cures, autistic people are coming out from under the blanket of societal ignorance in droves to stand up for ourselves, our rights, and an accurate understanding of what autism actually is. (And if you're drawing parallels to the X-Men here, by gods, I'm not going to stop you.) Autistics are writing books and blogs about our own experiences, creating videos and making speeches to foster a better education, and changing the way that diagnoses of autism are conducted and viewed. We're showing the world that the conversation should not just be about our limitations, but our gifts.
Even the title Autism "Awareness" Month has been pirated and rewritten. "Awareness" sounds like you're warning people about the inherent scariness of autism, feeding that fear. "Look out! It might get on you! Boogedy boo!" So, a large number of autistic people, tired of being told there's something wrong with us, are taking it back. Intro Autism "Acceptance" Month, because we're here to stay.
Challenging Myths
In that vein, I'm dedicating my first post, both for Autism Acceptance and the official start of my own blog, to autism myths that have more recently come under scrutiny, and need to be retired. These myths represent some of the pervasive attitudes about autism that keep people ignorant of the complexities autistics face each day, and the amazing part we play in society.
There is a wealth of topics here, enough for each to have posts of their own, replete with links to sources and more. And don't think that's not coming. But right now, I don't have the time. I speak from my own personal research and experiences. You don't have to take my word for it, though. Do your own research. Look beyond the fear-mongering propaganda of organizations like Autism Speaks. Read books and blogs by actual autistic people. You will find a whole universe you never knew existed.
MYTH: Autism is a disease caused by gluten, vaccines, helicopter parenting, and other factors that can be controlled.
MYTH: Autism can and should be cured.
As with causes, there are a number of "remedies" that have been touted as possible cures for autism. Besides the fact that none of these possibilities have born fruit, the ethical righteousness of such a thing should be questioned. Autistic people are not diseased or broken; we are people who are different from the majority, just as someone may have a different skin color, sexual orientation, or any other trait that were once (and may still be) considered taboo. The argument could be made that removing that which makes a person inherently autistic is tantamount to genocide.
MYTH: Autistic people are mostly men that look and act like Rain Man or Sheldon from The Big Bang Theory.
“If you’ve met one individual with autism, you’ve met one individual with autism.”
~Stephen Shore
Autistic people are as diverse as every other part of the human population. As diagnostic criteria become more effective, it has allowed people who have traditionally been excluded from a narrow definition of what it means to be autistic to be recognized for who we are.
Perhaps more importantly, these improvements have allowed more autistic women to receive diagnoses and benefits. Women and men carry significant differences in the presentation of autistic traits. Stereotypes of previous diagnostic criteria created a stereotypical version of an autistic person as expressing mostly male traits, excluding women and creating a disparity in statistical data. Where it was once thought that a small ratio of autistic women existed as compared to men, the number of diagnoses among women is rapidly rising, giving autistic women voice where we previously had none.
Perhaps more importantly, these improvements have allowed more autistic women to receive diagnoses and benefits. Women and men carry significant differences in the presentation of autistic traits. Stereotypes of previous diagnostic criteria created a stereotypical version of an autistic person as expressing mostly male traits, excluding women and creating a disparity in statistical data. Where it was once thought that a small ratio of autistic women existed as compared to men, the number of diagnoses among women is rapidly rising, giving autistic women voice where we previously had none.
MYTH: Autistic people can't feel emotion or empathy
Before the work of Leo Kanner and Hans Asperger, many autistic people were thought to display symptoms of psychosis & sociopathy, bipolar disorder, and schizophrenia. At play was a seeming reticence toward emotional displays. Even after autism became an accepted diagnosis, it was generally believed that autistic people couldn't feel emotions as intensely as allistic people could. This is simply untrue.
In fact, due to aspects such as a literal mindset and sensory overload, it is now becoming a more common understanding that autistic people may feel more intensely than allistic people. Questions of empathy are complex and involve the way that Theory of Mind - in short, the ability to understand another's perspective from your own - works in an autistic brain. Autistic people experience empathy as much as others do. It just works differently.
In fact, due to aspects such as a literal mindset and sensory overload, it is now becoming a more common understanding that autistic people may feel more intensely than allistic people. Questions of empathy are complex and involve the way that Theory of Mind - in short, the ability to understand another's perspective from your own - works in an autistic brain. Autistic people experience empathy as much as others do. It just works differently.
MYTH: There are high and low functioning autistics.
As the DSM-V did away with Asperger's and other Autism Spectrum Disorders, new terminology had to be created in order to help those differentiate. The terms High-Functioning Autism (HFA) and Low-Functioning Autism (LFA) came into use, but these terms are already under fire for being ethically-problematic. The terms were created to differentiate cognitive traits: HFAs had IQs above 70, while LFAs have significant cognitive challenges, as well as impaired communication.
Yet how does one define high and low "functioning"? People who are considered high-functioning are often "masking," attempting to fit into a neurotypical society by imitating characteristics deemed "appropriate." It is the proverbial square peg in the round hole, and it causes a great deal of stress and mental & emotional trauma to autistic people. Worse, high-functioning autistics carry the "invisible disease curse," are often considered "almost normal" or "not that autistic," and have severe difficulty receiving assistance and empathy. The question of what it means to function must, therefore, be raised.
Yet how does one define high and low "functioning"? People who are considered high-functioning are often "masking," attempting to fit into a neurotypical society by imitating characteristics deemed "appropriate." It is the proverbial square peg in the round hole, and it causes a great deal of stress and mental & emotional trauma to autistic people. Worse, high-functioning autistics carry the "invisible disease curse," are often considered "almost normal" or "not that autistic," and have severe difficulty receiving assistance and empathy. The question of what it means to function must, therefore, be raised.
MYTH: With early interventions such as behavior therapy, autism gets better over time.
Autism is not something that "gets better"; it is a lifelong state of being. Children and adults who "test out" of autism after changes to therapy, diets, etc., may never have had autism at all. Worse, they still have it, but have learned to mask their traits at great cost to their own mental health. The gifts that such people lose in the attempt to conform to society's strictures is a loss to society as well.
MYTH: Autistics are mentally retarded
Intellectual disabilities that were previously referred to as mental retardation require an IQ score under 70 and significant limitation to adaptive functioning (daily living) skills. This is often an argument for people still wishing a cure for autism. "Yes, but what about those who can't speak or take care of themselves? Surely their lives are miserable and they would be better off without this affliction." A person may be diagnosed as having such intellectual disabilities, and they may be autistic, but the two are not necessarily linked, and they certainly aren't the same thing. Furthermore, a lot of what is viewed as evidence of retardation in an autistic individual, such as mutism and difficulties in adaptive skills, seems to have more to do with society's inflexibility than something that is "wrong" with the individual. Just because an autistic person doesn't speak doesn't mean they aren't communicating; you just might not be tuned in. It bears mentioning that there's nothing "wrong" with people who have intellectual disabilities like Down Syndrome, either. Stigmas over such things need to end.
MYTH: Autism is a terrible brain disorder
More and more evidence shows that autism is merely a different brain development, that there is nothing inherently diseased, disordered, or any other negative connotation that can be applied to this state of being. The term neurodiversity - the acknowledgment that different brain types are neither bad nor abnormal, and have great gifts to offer society - is rapidly gaining traction. Such diversity includes Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and more.
It is here where terms such as neurotypical and neurodivergent / neuroatypical make the most sense. Neurotypical means one who has a typical, or most usual brain development. Opposite to this is neurodivergent & neuroatypical (one with a different than usual brain development), and may include things such as psychosis and schizophrenia. This means that neurotypical does not work as an opposite term to autistic, nor is it particularly synonymous to allistic, as that means specifically "not autistic." That is simply the tip of the iceberg when it comes to the complexity of the terms describing the spectrum.
It is here where terms such as neurotypical and neurodivergent / neuroatypical make the most sense. Neurotypical means one who has a typical, or most usual brain development. Opposite to this is neurodivergent & neuroatypical (one with a different than usual brain development), and may include things such as psychosis and schizophrenia. This means that neurotypical does not work as an opposite term to autistic, nor is it particularly synonymous to allistic, as that means specifically "not autistic." That is simply the tip of the iceberg when it comes to the complexity of the terms describing the spectrum.
MYTH: Autism is selective laziness.
It cannot be said enough: autistic people are not lazy. This does not mean that we are not as capable of laziness as allistic people are. However, what is often thought of as lazy are real difficulties that autistic people have with things allistic people do every day. Executive function impairment is a pervasive cross that autistic people bear, and it manifests as an inability to get & stay motivated, difficulty in changing patterns and routines, and a whole host of other things that people with neurotypical brain developments take for granted.
MYTH: Autistic people aren't normal.
It's time to stop throwing around the word "normal" like it's a real thing. While the definition of normal as "the usual, average, or typical state or condition" makes sense categorically, there is a much more dangerous definition which has evolved: normal as a "preferred state of being or acting". What this means is that rather than "normal" noting something is what often happens, it alludes to the idea that a particular thing is what should happen. "Normal" is considered better; "normal" is righteous. "Normal" is safe and a state to be achieved and conformed to in all situations. Anything that goes against this state must either conform or be removed.
So ask yourself: what constitutes normalcy? What is "normal" or typical in one instance is completely at odds in another. I often feel that we'd all be a lot happier if we did away with this concept altogether, and stopped trying to box ourselves into preconceived notions. As with most things, asking a person how they prefer to be called, labeled, referred to, etc., is your best bet.
So ask yourself: what constitutes normalcy? What is "normal" or typical in one instance is completely at odds in another. I often feel that we'd all be a lot happier if we did away with this concept altogether, and stopped trying to box ourselves into preconceived notions. As with most things, asking a person how they prefer to be called, labeled, referred to, etc., is your best bet.
Many of the above myths continue to be perpetuated, not merely through mainstream media and society but even among mental health and medical professionals. These myths are harmful to autistic people, but they also do harm to society. Fear evasion has given people the excuse to remain ignorant of the evolving information regarding autism, keeping us from experiencing the full range of what autistic people have to offer.
I am often amazed at how much we have to learn as a species. Before my own diagnosis, I had a lot of preconceived notions about autism, deaf people, and a whole host of other traps I believed myself too open and - dare I say - enlightened to fall into.
This is why you can never stop learning and, like Tantalus, never allow your thirst for knowledge and understanding to be quenched.
I am often amazed at how much we have to learn as a species. Before my own diagnosis, I had a lot of preconceived notions about autism, deaf people, and a whole host of other traps I believed myself too open and - dare I say - enlightened to fall into.
This is why you can never stop learning and, like Tantalus, never allow your thirst for knowledge and understanding to be quenched.
Wow, thank you so much for sharing part of your story and journey. Your willingness to be vulnerable and honest on this platform is both impressive and encouraging. I'm looking forward to reading and learning more from you! "Just as I was finding a fundamental aspect of myself, I was being told to suppress it, as if that was possible, since being unable to suppress it is exactly what led me to diagnosis in the first place." - Jordan W =)
ReplyDeleteThank you for your comment, Jordan! I'm glad if my words resonate with anyone. I want to see more autistic people sharing our stories and helping others understand.
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