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I first heard of autism when my mother and I watched the movie House of Cards.It was 1993, long before the political drama with the same title topped my Netflix watch list.
As I remember it, House of Cards, the movie, centers on a child who becomes autistic following her father’s death. The movie’s central conflict is between a therapist, who wants to use traditional means to reach the child, and the child’s mother, who takes a more intuitive approach. The mother triumphs in the end. I can remember being simultaneously happy the mother’s insight allowed her to enter the child’s world and angry that the child’s world still felt like a pathological place. By my young reasoning, the child needed to be reached but not saved. I also thought it seemed odd that she could become autistic. Even then, it struck me more as something you inherently are or aren’t.
Fast forward a few decades, and now I’m the 30-something mother of an autistic son. The more I learn about him, the more I recognize myself beside him along the spectrum. I have also come to learn my fair share about sensory processing and integration differences. Essentially, the way people process sensory input—sight, sound, touch, taste, smell and a whole pile of intuitive ques—has a dramatic impact on the way they interact with their physical environments and perceive reality.
The majority of humans are wired to process sensory input in a fairly uniform manner. However, an increasing number of us are not. Our neurological circuitry is just different—both from the masses and from each other. This is why autism is a spectrum. The signs of the disorder are far from uniform and are categorized loosely by the varying degrees to which our neurological divergence impedes our ability to function—physically, intellectually, emotionally and socially—on par with our peers.
For some, like my daughter, the diagnosis of autism doesn’t even quite stick. These children are adept at blending in socially yet still perceive the world through a very different lens. They may be labeled as having sensory processing or integration disorders, which in turn can lead to ADD, ADHD, learning disabilities, or even borderline personality disorder. Distinct signs of autism are more prominent in boys than in girls. Signs young women tend to cover stand out more starkly in young men, who operate without the social filters even divergent girls learn to see. In this sense, autistic boys are a powerful reminder of how divergence looks and of what it can mean for all of us.
My personal goal has been to empower each member of my neurologically divergent family to better understand their own minds and to successfully navigate life in a personally fulfilling, balanced and independent way. I have done a lot using my own intuition as a guide. I have also relied on a variety of traditional therapies. Read just a few articles about autism online, and you will see that traditional therapies do not sit well with many autistic people. This is because the goal of many mainstream organizations is to find a cure. This implies that significant differences in perception are debilitating and need to be eradicated. People who come from this school of thought often reveal themselves by using the descriptor “with autism” rather than “autistic.”
Personally, I don’t split hairs over terminology. Even though I prefer “autistic” to “with autism,” and intuitive sensory integration to the recommended applied behavior analysis as therapy, I believe everything has value. This is perhaps because, when it comes to evaluating any approach to autism, I place less emphasis on the “what” and more on the “how.”
Specifically, I ask myself: How will this approach work in context of everything else my son is experiencing right now? How can it be most effectively integrated into his life in a balanced way? How can I transition from this later when it no longer applies? I think focusing on “how” acknowledges the need for balance and the reality of an individual’s capacity to evolve. More importantly, it reminds me that it is ultimately up to me (to a degree) and my son (fully) to decide how his therapy affects him.
While the value of “how” may seem relatively commonplace, I feel it’s overlooked—not just in the world of autism but in the world of neurological divergence on a broader scale. In my personal experience, the tendency to immediately pathologize what we don’t understand is strong. So is the tendency to immediately fight this by self-advocating in angry and often unbalanced ways.
Of course, this pattern extends even further beyond what I’ve already implied. As humans, embracing our individuality generally means that something about us will be stigmatized. Likewise, I’ve witnessed that the process of living with stigma looks similar–whether the stigma in question relates to mental wellness, sexual preference, responsible drug use, race relations, religion, or any lifestyle choice which challenges the norms of a person’s dominant culture. Men, in particular, have a vital role in stepping outside the patriarchy and supporting a new system which can examine human differences without actively curing, condemning or defending them.
In my opinion, none of us need saving. We do need better ways to reach each other. Cultivating a compassionate and balanced approach to neurological divergence is a powerful step forward. When autism shows up boldly in boys, I hope it empowers them to become men who have a more nuanced view of stigma. Meanwhile, their childhood experiences offer valuable lessons to everyone.
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