I Will Never Have Autistic Pride


autistic pride

June 18th marked Autistic Pride Day.  To be honest, I hadn’t ever heard of Autistic Pride Day until very recently.  According to Wikipedia, Autistic Pride Day began in 2005 in hopes of persuading those not on the spectrum to view Autism as an individualistic character trait, not a neurodevelopmental disorder.

Autism is a complex condition.  It can run the gamut in symptomology and nobody seems to know why a person has it or why its prevalence is increasing.  One person with Autism may be high functioning with mild symptoms that include difficulty with social interaction while another Autistic may be low functioning with severe symptoms that include severe communication and speech deficits, lack of environmental awareness and social understanding, repetitive behavior, self-stimming, self-injury, behavioral problems, and more.

Because the characteristics of each person touched by Autism is unique, I understand why an Autistic would want to be recognized as an individual instead of being branded with one particular label.  In fact, when I hear the words “Autistic” in reference to my sons I think, “that’s so not specific enough.”  The broad diagnosis is encompassing enough to get them the help they need, and for that reason, I’ll swallow their label.  But given its historical stigma, it’s a label that no one really wants to have. (Read a history of the condition here.) Even though there have been great strides to bring awareness and understanding of the disorder (especially due to increased diagnoses of epidemic proportions) it seems so lacking.

“What an invisible, divisible condition,” because no matter how much attention ASD receives, no one is really aware.

I have some people that tell me they would have never known that my sons were Autistic if I hadn’t told them.  When I hear this, multiple thoughts flash through my brain like the branches off of a single bolt of lightning.  It starts with, “oh, if only you knew,” and I wish they could see what I do.  I swell with pride and think, “Wow!  Look at how far they’ve come!” And become sad as I think, “what an invisible, divisible condition,”  because no matter how much attention ASD receives, no one is really aware.

My oldest son is severely Autistic, although high-functioning.  Until he was 18 months 0ld, he was marked by doctors as failure to thrive because of food aversions and digestive enzyme deficiencies. He was non-verbal until he was four.  He wasn’t speaking in complete sentences regularly until he was five. He had trouble communicating wants and needs.  He had little to no awareness of personal safety.  He was constantly trying to run away, often putting himself in dangerous situations and places.  He self-stimmed, self-injured, and he had hypersensitive hearing and visual acuity.  He went into severe meltdowns and rages. And he hurt.  I could see it in his eyes.  I could hear it in his screams.  I could feel it when he’d shake and shudder in my arms during a meltdown.  At 10, he has overcome many of his verbal communication problems, but still struggles with internal obstacles related to Autism.

By contrast, my youngest son is a mild to moderate, high functioning Autistic.  He has trouble with communication, sensory aversions, and schedule changes.  While we haven’t experienced as many difficulties with temperament and behavior as we did with his older brother, we still face challenges that are part of his individualistic Autistic traits.He will have fewer problems integrating into society than his brother, but Autism never goes away.  There are certain aspects of his life in which he will likely always struggle.autism-graphic

I know that my boys’ particular spot on the spectrum is unique.  No one else can sit there.  Because they are unique.  It’s what defines Autism.  There is only one spot on the spectrum for any one person.  It’s this tiny little universe contained within one special individual sitting on a plane of endless symptomology.  But it’s not a character trait. It’s not a character trait any more than is a peanut allergy.  With verifiable physical, psychological, emotional, and behavioral symptions associated with Autism Spectrum Disorder, it’s hard to recognize it as anything but what it is.  A Disorder.  However specific the definition of ASD may be, it will never be a character trait.

According to YourDictionary.com, a character trait is all the aspects of a person’s behavior and attitudes that make up that person’s personality. Saying that Autism is a character trait is like saying that Autism defines a person.  It’s like saying that cancer pain is a defining characteristic or the mental retardation in those with Down’s Syndrome is. The non-verbal aspect of my son’s Autism is part of a neurodevelopmental disorder that he overcame.  Likewise, some of the nuances that are diagnostically linked to Autism are part of a neurological condition that can be repressed with therapy, treatment, and medication.  Thinking of all the characteristic traits that my sons posess, not only do I think they are things that are hardwired into thier DNA, but they are things (in most cases) that I would not want them to “overcome” nor are they conditions that can be atributed to Autism.
I will not wave an “Autistic Pride” banner.  Ever.  Because I will not celebrate a condition that causes my son to injure himself, to suffer, to struggle, or to be lonely.  I wouldn’t wave an “Autistic Pride” ribbon anymore than I would wave a “Bipolar Pride” or “Cancer Pride” ribbon.  I will never celebrate that either of my boys is Autistic.  And I will keep pushing for better diagnostics, more research, focused therapies, and a cure.

I won’t celebrate Autistic Pride Day. But, I will celebrate who my sons are and who they are working to become. I will celebrate Seth’s giant heart, his eagerness to please, his loveable personality, his hard work, and his triumphs over adversity.  I will celebrate Moo’s tenacity, energy, and will. I will celebrate them.

 

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