In honor of Autism Awareness Day, I’m writing a piece on Autism. Before you close the tab thinking “I don’t know anyone with Autism”, let me suggest that you most likely do.
Autism, or Autism Spectrum Disorder, is a term for a collection of traits manifested by (per the American Psychiatric Association’s DSM-V) “persistent deficits in social communication and social interaction across multiple contexts… and restricted, repetitive patterns of behavior, interests, or activities”, which affect one throughout one’s life (description in plain English to follow). It’s a state of neurodivergence; meaning that the brain is “wired” differently than the greater (“neurotypical”) population. It can range from those needing a large level of support to those who may need less support, and includes those who fall under the category of Asperger Syndrome*. No matter what the presentation, all need understanding and acceptance.
Why is it called a spectrum? Even though those affected fit into these diagnostic criteria, they can present in a countless variety of ways. Dr. Stephen Shore, an autism researcher who is also on the spectrum says, “If you’ve met one individual with autism, you’ve met one individual with Autism”. Meaning that, simply because someone is autistic, it doesn’t mean that they will act like Ray from Rainman, Sheldon from Big Bang Theory, or even Sam from Atypical. In fact, these stereotyped expectations have led to failures in proper diagnosis for those who are not white and/or cis male. BIPOC individuals are less likely to be diagnosed despite the fact that autism most likely affects them equally, and researchers are also now finding that the autistic male/female gender ratio is lower than the 4:1 ratio that was previously “standard”. Other gendered stereotypes have also created more intense cultural pressure to “fit in” with society, and that pressure may lead many to learn to mask their symptoms, so much so that it becomes difficult to receive a proper diagnosis. In addition, those of any gender with higher intelligence learn to mask their symptoms to the degree that perhaps they appear normal, or perhaps just seem a bit “quirky”. All the while they appear like a swan which seems to effortlessly glide on the surface of the water: yet underneath they’re paddling and struggling with great effort, and it’s exhausting as hell.
So what are some examples (in English instead of medical-ese) of how people on the spectrum are affected? I’ll give some examples for each diagnostic criteria, but they are by no means exhaustive:
Persistent Deficits in Social Communication and Social Interaction This can range from being nonverbal, having limited communication, to hijacking conversations and talking non-stop; missing cues that one’s audience is no longer interested. It can be an awkwardness in initiating and continuing either verbal conversations or forms of written correspondence. It can also include difficulties in regulating the volume or cadence of one’s voice. In the context of non-verbal communication, it can mean missing out on body language cues (leading to an inability to understand others’ intentions), having difficulty making eye contact, to even making too much eye contact with others, and being accused of staring at them. It’s a feeling that everyone else has received instructions on how to interact – and you missed the class. These deficits can obviously create difficulties in developing and maintaining relationships with others.
Restricted, repetitive types of behavior, interests, or activities These include but are not limited to the following four categories, taken from the DSM-V:
Stereotyped or repetitive motor movements, use of objects, or speech – Many people may think of rocking or flapping one’s hands when they think of someone who is autistic, but there are many more examples, and not all of them are so obvious. It could be playing with one’s hair, biting one’s nails, chewing on things, or tapping on things. It can present as fiddling with objects in a repetitive way, or needing to have one’s things placed just so. Speech can include repeating phrases (Think Rainman’s “97X BAM! The FUTURE of rock and roll”), or reusing phrases one has heard in other conversations or movies, in a manner that may or may not quite fit the context of the present conversation.
Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior – This is often manifested as having great difficulty with changes to one’s schedule, or surprises, especially when it is directed from outside one’s choosing. It can also manifest as black and white thinking patterns, needing to always take the same route to a destination, following the same routines, or eating the same food every day. Eating disorders can also be coexistent with autism.
Highly restricted, fixated interests that are abnormal in intensity or focus – The stereotype is that of a child who is fascinated by dinosaurs or trains, and can rattle off every known fact about them, but the fixed interest could be types of animals, or celebrities, or quantum physics, and can change throughout one’s life.
Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment – This can manifest itself as extreme sensitivity to odors, fluorescent lights, scratchy clothes, or loud noises, among other things. It can manifest as food sensitivities, in which certain flavors or textures of food are avoided, or having foods touch each other is avoided. Many of these things will affect the general population, but for someone on the spectrum, they can be nearly if not completely intolerable. It can also manifest in the other direction, in which someone may seek sensory stimulation in various categories, such as constantly reaching out to touch or to smell things, surrounding oneself with soft blankets and clothing, or fascination with glittery things.
One of the things the DSM-V does not mention, but is common in ASD, is limitations in executive function; such as planning, organizing, or short-term memory. In the case of those with autism who have higher intelligence, one often hears family members saying “How can someone so smart be so stupid?”. Yet it’s not a matter of stupidity by any means; it’s simply a lack of executive function. It often means that too many varying streams of information get tangled up in the divergent wiring of the autistic brain, and get dropped along the way.
These examples are by no means exhaustive. Autistic traits may cause a person on the spectrum to come across as difficult, aloof, uncaring, or weird. Yet these traits are wired into the brain, just like being left-handed, and are simply expressions of trying to fit into a world which is not geared toward their nature. Many autistics have made great contributions to society, and despite their difficulties, autistics have incredible things to offer; see an article here on famous people who may be/have been on the spectrum. Yet coming forward with one’s autistic status does not always meet with acceptance, and can often meet with ridicule, disbelief (“You don’t look autistic”), or abandonment. As a result, many continue in silence, being constantly misunderstood.
If you’re still reading and interested, thank you. Much of the information I’ve gained has been through video presentations by Dr. Tony Atwood, Sarah Hendrickx, and Paul Micallef, and through The Asperger/Autism Network (AANE).
I’ve also gained knowledge from real life. I’ve always had an unexplained interest in autism, and with more research, discovered I knew people who were on the spectrum. While watching YouTube videos, I found a great deal of similarity with female autistic presenters, and familiarity with many of the defining characteristics of autism. I took a few tests online, results of which suggested that I too, am most likely on the spectrum. Initially I doubted how I could have had a successful career, traveled, and lacked some of the stereotypical characteristics, and still be on the spectrum. I soon learned through my research and the understanding of how differently autism presents, that it was entirely possible, and even probable. Yet instead of being a negative burden, it was actually a great relief to know that there may be a reason why I have struggled with certain things throughout my life.
Seeking an official diagnosis here in the US is quite expensive, ranging from several hundred to nearly two thousand dollars. Because autism was previously assumed to be mostly a male diagnosis, very few clinicians have experience recognizing it when it doesn’t present in the stereotypical way. For me in my mid 50’s, I have wandered through life, often falling, but getting back up again. I am fortunate (and privileged) enough that I don’t need monetary support. As I’m not seeking support, I don’t feel as if I need a label, but for those seeking official support, a diagnosis will be essential for assistance or accommodation. Personally, getting to know others on the spectrum has helped me find a group of people who can empathize with each other, and accept and support each other in their autistic challenges. I’m content with that without seeking an official diagnosis.
While not a path that everyone would choose to follow, for me Buddhist practice has offered the most support of all, even before I knew of this wiring in the brain. Buddhist teachings explain that all of the things which we normally think of as “me” or “mine”… are not. This body (just a rental car, of sorts), this brain, our senses, our thoughts, our mental habits, etc., are all just passing clouds that are not really under our control. This teaching of not-self became even more apparent when I realized I was most likely on the spectrum. I had struggled with many of the examples listed above, and would often blame myself for them; to take them personally. Learning about autism helped me realize that these difficulties were simply a matter of brain wiring, and not to be taken as “me or mine”. Would I chastise myself for having brown hair or two legs? So instead of clinging to the diagnosis, for me it’s become a way to let go. I’m not claiming perfection or even near perfection in that regard, but there’s certainly progress. There’s peace and happiness in that.
If you know someone on the spectrum (and now you know at least one), please realize that when we struggle in a world not geared for neurodivergence, that we are not trying to be aloof, loud, awkward, demanding, or difficult. Long ago, those that were left-handed were made to learn to write with their right hands. Today we know that doing this causes great suffering, and accommodations are made for those who are left-handed. No one is ostracized or disdained for it. My hope is that someday those on the spectrum will find the same acceptance and inclusion.
If you found something of interest, or even familiarity with some of the aspects of autism, the sites listed below are online tests and other sites which might be helpful.
*One final note: Conventionally, the term Asperger’s syndrome is often used to describe autistic individuals without language delay or intellectual impairment (often having above average intelligence). This term was dropped in the current edition of the DSM, although many people continue to identify with the name. Personally, I don’t care to use the term. Hans Asperger, the Austrian psychologist famed for discovering boys with this syndrome in the 1940’s, worked closely with the nazi party and knowingly sent children to their deaths in hospitals which routinely and intentionally killed children with mental illness. I prefer not to glorify someone who could carry out such horrible acts. For more information, read Asperger’s Children, by Edith Shefter.