Since my son has been diagnosed with PDD, I’ve learned a lot. In this article, I share my experience and my thoughts to let you know you’re not alone and, hopefully, give you reason to believe that your child can achieve a fulfilling life, too.
There is an old Zen parable about the finger pointing at the moon that tells about a Zen master who’s asked by his students to explain the moon. Without saying a word, he pointed his fingers at the moon. The students all amazed, looked at his hands and said: ”Ah! The moon is a finger!” The students clearly misunderstood the master who was trying to explain that there was nothing mysterious to learn about the moon, its essence was right there in plain sight.
My story has no conclusion and provides no answers. Please don’t confuse one story with your experience. I just want “to point at” the moon and show you that there isn’t any right or wrong way to deal with autism. The right way is yours. And you’ll know if your way works, when you see your child thriving, in spite of his challenges.
I’m sure most people are familiar with the word “autism,” but might not know that doctors have created it and included it in the DSM. This manual is an official authority on mental health diagnoses and has the power to create people’s reality with just one word. The release of a new medical text doesn’t normally generate the kind of widespread anticipation of say, Fifty Shades of Grey, but the Diagnostic and Statistical Manual of Mental Disorders, or DSM for short, is clearly an exception.
Most coinages carry with them some evidence of semantic trauma. In the DSM V, ASD is no exception. This acronym refers to the manifestations of behavioral and developmental problems that can vary in type and severity, and, its attempt to replace all the other instances of this diagnosis—Asperger’s Syndrome, PDD, PDD-NOS, or High Functioning Autism—has created a semantic minefield.
Consider “spectrum”: note of confusion come through. It describes a wide range of symptoms and severity of this disorder, from high to low. Maybe, to avoid confusion, doctors should just call it “autism,” without adding anything, and be as specific as possible when explaining how it affects a child. But, like it or not, “ASD” has become shorthand for a lot: the disorder itself, the public misperception, and the fundamental shift in how children are perceived and treated that follow.
PDD has shaped my son’ s world since he was three years old, when PDD was not yet part of the autism umbrella term for a wide spectrum of disorders. His challenge has always been communication: how he processes language and uses it. He has difficulty gaining meaning from spoken language and takes some time (it’s called processing time) to organize words into meaningful utterances. If you think that any social interaction is based on a timely verbal exchange, you’ll realize the challenges he experiences on a daily basis. He’s like a bird who’s singing in a different tempo: his own.
Teaching him self-advocacy has helped tremendously: he lets people know when they’re speaking too fast or if he doesn’t understand what they’re saying. But, unfortunately, self-advocacy has not been enough to change people’s perception of what autism is or is not. There are still therapists and teachers, for whom labels and definitions abound, who think he can’t learn. It’s apparent that words create reality and contribute to the culture of disability. In the essay “Culture as Disability,” Ray McDermott and Hervé Varenne, respectively professor of education at Stanford University and professor of education at Teachers College, Columbia University, explore disability as cultural phenomenon:
“Common sense allows that persons unable to handle a difficult problem can be labeled “disabled.” Social analysis shows that being labeled often invites a public response that multiplies the difficulties facing the seemingly unable. Cultural analysis shows that disability refers most precisely to inadequate performances only on tasks that are arbitrarily circumscribed from daily life. Disabilities are less the property of persons than they are moments in a cultural focus. Everyone in any culture is subject to being labeled and disabled.”
Our mind’s tendency to label everything is well known to Buddhists who call this phenomenon “duality,” which is the root of all our suffering. In reference to the word “autism” specifically and “disability” in general, this tendency does nothing but limit the world of the person who’s been labeled. As a Buddhist practitioner, I’ve always believed that “we are what we think,” and the way we experience the world creates it. Our ideas and our opinions are the world. Similarly, McDermott and Varenne maintain that disability is “more the result of a cultural system than it is an account of real persons.”
Therefore, to help my son’s self-awareness and authenticity come through, I put down all the beliefs that our lives had to conform to some kind of expectations, so that he could found his true self that has nothing to do with test and academic scores. Once I removed all these “ideas,” he started living his life in his full potential and naturally in tune with his true purpose: free to express himself and explore the world.Featured illustration © Sara Nicoletti Altimari Suttle.
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