April was Autism Awareness Month, and now that it is behind us, a surprising sigh of relief echoes within the autism community. Why? Those with other conditions feel celebrated and supported during months dedicated to the funding of research on their disease and its elimination. However, autists, like those with other inherent neurodevelopmental differences, often realize that campaigns to eradicate their condition are, in fact, campaigns to eradicate them.
Allow me to acknowledge that I was recently diagnosed with autism, which is now considered a spectrum disorder. Whereas I would previously have been diagnosed with Asperger’s Syndrome, I am now considered high on the spectrum. The autism spectrum, however, is not based on the severity of symptoms but on the degree of intellectual impairment or advancement of the individual. I mention advancement because autism, unlike many other neurodevelopmental differences, encompasses IQ’s ranging from the very challenged to the extremely gifted.
On the far-high end of the spectrum, think of Elon Musk and Bill Gates, Jerry Seinfeld and Dan Aykroyd, Bob Dylan and James Taylor, or Albert Einstein and Thomas Edison. It may be unique differences in the autistic brain that allow for certain minds to acquire and exercise their brilliance. If ever there was a condition that it was not in the best interest of humanity to eradicate, it might be this one.
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This utilitarian view fails to take into account, however, the infinite value of the lives of the most intellectually challenged, non-verbal autists. It may be that they are an even greater gift to humanity than the autists above, and by naming high-achieving individuals with autism (or those historically speculated to have had autism), I don’t mean to perpetuate stereotypes. It seems two extreme stereotypes exist: that of the autist as genius-savant or that of the autist as profoundly deficient; and stereotypes never tell the whole truth.
Instead, I want to explore autism through a different lens. One that, I believe, may raise real autism awareness and, thus, a needed defense of the value of a group of individuals targeted for elimination through genetic research inevitably geared toward a prenatal test for the condition. It may help us understand the disruptive child at Mass, wailing and rocking in a back pew, or the quiet gentleman in the choir who knows obscure details of Gregorian notation, as possessing something that is a genuine gift to the world as well as a cross to carry. It might even help us to be Simons and make the burden of the cross lighter on those with autism and their heroic families and caregivers.
One view of autism, which resonates most accurately with my experience of the condition and perhaps best explains its puzzling behaviors, is that it is a profound neurological difference in sensory processing. That is, what might be a mild bit of sensory input to a non-autistic, or “neurotypical,” nervous system can be an overwhelming amount of input to the autistic brain. A neurotypical person may not regularly and constantly notice the touch of their clothes on their skin, unless perhaps those clothes are itchy. An autistic individual may feel the touch of their clothing so intensely that it is akin to pain.
The touch of one’s clothing, however, is just one input in a world that is bombarding the autistic brain. It is as if the world screams at the autist at all times. The images that flash by the car window or across the TV are too bright, too fast, and too many. The conflicting sounds that reach their ears are a cruel cacophony, competing for the attention that they simultaneously exhaust. The breeze on their face is a sharp slap, and the tick of the clock is water torture. The world outside their mind produces fear and suffering.
They seek refuge from this experience in a deep and critical need for solitude, quiet, and focus. While for the Catholic this may take the form of a beautifully intense prayer life, it also takes the form of extremely devoted interest in anything that can completely absorb one’s attention—from stamp collecting to theoretical physics. In a state of focus, the torment of the external world is lessened, and autists are drawn to the experience of time alone with a beloved and absorbing subject.
Intense interest and time spent with a subject often make for great insight and expertise. Sometimes that expertise is simply in every model year of a favorite car, and sometimes it is in something helpful to a field of study or branch of the arts. Adding to this development of expertise is the autist’s capacity for detail. Since the world screams, there is no such thing as a “minor” detail. Every bit of information is loud and clear, even if it is overwhelming. (For this reason, the Israeli Army actively recruits autistic individuals as imagery analysts.)
Sometimes we never know what interests a person deeply because their experience of the world was so harsh that they retreated to the safer world of their mind as a small child, before they fully learned to communicate. Other times, we never even know a person struggles with autism because, with typical focused intensity, they determined and learned to interact with the world in a way as close to the neurotypical ideal as possible. This is called “autistic masking,” and it is a strategy especially typical of women who are, perhaps as a result, rarely diagnosed.
It is not the case, as previous researchers have asserted, that autists do not care for others. They simply cannot process the extremes of constant contact. People with autism, like anyone else, have souls built to ache for relationships and community. However, autism can make social interaction awkward. To understand, simply imagine that the world was screeching and gnawing at you while you tried to make small talk and that you already felt an inarticulable “difference” from others. Add to this the need for aloneness, and a few other coping mechanisms that autists generally fall into, and you have a person who is typically misunderstood.
One of these mechanisms is seizing control of the sensory information one receives. Frequently, people with autism will rock, hug, squeeze, or even hurt themselves because somehow being in control of some aspect of one’s sensory input makes it less bombarding and more manageable. This is called “stimming,” and different methods help different people. Some chew a fingernail, some tap a toe, some repeat a word or sound, some scream out loud. It just has to do with what stops the unmanageable onslaught for an individual at a given time. We wouldn’t look askance at someone who screams at a stubbed toe, and what a comfort it would be if we had the same understanding with someone who stims.
Another mechanism that makes the bombardment manageable is routine, and people with autism can be very upset at any change in plans, which they have typically carefully crafted to avoid difficulty. What is the difficulty they are trying to avoid? The dreaded autistic meltdown. This is where children with autism can be accused of “throwing a tantrum” (when they are not) and adults with autism can be seen as completely alien and incomprehensible, furthering their social isolation.
When sensory bombardment overwhelms one’s coping mechanisms—when there is perhaps one more sound than an individual can process, or one more change in plans than they can bear—a person may collapse into a state of panic and tears from which they are unable to easily recover. This is unimaginable to bystanders who could never guess that it was “The Girl from Ipanema” playing on the Muzak in the third drug store a poor woman had to visit to get her grandmother’s medication that pushed her over the edge in the toothpaste aisle.
When we know what she is experiencing, however, her reaction is completely understandable. Real autism awareness means the simple knowledge that there exist individuals whose nervous systems function in this way. It is an inherent difference that can be accommodated. Advocates speak of “embracing neurodiversity” in our communities by easy gestures such as providing occasional shopping hours weekly when canned music is turned off and unnecessary lights and screens are dimmed.
Embracing neurodiversity seems worthwhile when we compare autism’s gifts to the effort required to understand the differences in others’ experience of the world. It is not just the gifts of famous high-IQ autists to which I refer but especially the spiritual gifts of those on the opposite end of the spectrum. They exist in a perpetually painful world without the ability to explain the experience I have described here. Surely, their hidden, interior lives, created by their heightened, innocent suffering, participate mysteriously and powerfully in the cross of Christ.
Accommodating their diversity is a stand for the value of human life and a statement against any effort to eliminate those with neurodevelopmental differences before they can share these gifts with the world.
[Photo Credit: Pixabay]