August 10, 2013


Posted in My Take on Autism tagged , , , , , at 3:19 pm by autismmommytherapist

My eldest son, who has severe autism, pivots and dashes past me with a swiftness I didn’t know he was capable of, and darts near the dark maw of our overcrowded garage. I run after him to prevent his entry, and my hand grasps air as I miss his arm by an inch.

Justin is deep in the throes of what I call an “OCD episode”, and I am trying desperately to stop the cycle, to arrest his obsessive interest with his ritualistic back and forth from closet to garage. My desire to cease his maneuvers is not because the action is annoying (although it is, and is hell on our closet’s sliding door), but because Justin is “absent” when he does this, and miserably unhappy.

I spur my forty-something frame on a little faster and am able to thwart him (this time) from grabbing the red bag that is the source of his frustration, and with a few deft twists and turns quickly propel my complaining child out of the humid room into the delicious coldness of our home. He turns around and pinches me to demonstrate his ire, and I block him when he goes back for seconds, grab his wrists and tell him “gentle”, which elicits his standard response of a kiss, then release.

It is all over within a minute, but my heart is pounding, and the tender flesh of my upper arms is raw and throbbing. Justin heads toward the refrigerator for juice and I gladly grant his request, then sit on our sofa to regain my composure.

I look over and see Zach quietly reading a book of ghost stories, apparently oblivious to the drama taking place before him, for which I am grateful. Out of the corner of my eye I see Justin drawn into the mysteries of “Up” on his DVD player, and I take a deep breath and regroup.

I admit, the older I get, the harder it is for me to rewind and begin again.

There are those who would judge me for writing about this aspect of my eldest son’s autism, people who would say that by putting into words my son’s sometime anger and frequent dances with OCD that I dehumanize him, paint him in a negative light which might affect how people perceive him.

The truth is that everyone who interacts with Justin is already well familiar with these episodes, just as they are witness to his affectionate nature, his eagerness to connect, his deep desire to please. These episodes are part of the truth of Justin’s autism, just as the early ability to read and an insatiable desire for knowledge are a truth of my youngest son’s autism as well.

I’m writing about Justin today because although I’m thrilled to see stories of high-functioning autistic adults in the media, stories that highlight individuals capable of leading fulfilling and independent lives, there is the other side of autism too. Sometimes that side is very dark, can seem overwhelming, even hopeless.

We’ve dwelled there with Justin at times, my husband and me- it has never come to that with Zach, who is on the opposite end of the spectrum, and whose daily frustrations manifest in a quieter, less explosive way.

As much as I worry about Zach sometimes, my desire for him to have friends because he wants them, my hopes that our decision to mainstream him next year will lead to a positive experience, my concerns are no greater for him than if I had a “typical” child who simply had a difficult time navigating the world.

In five years my youngest has progressed from a child who lost all but four of his words and had the light in his eyes extinguished by some biological process unknown to us to a child with every expectation of leading what we think of as a “normal” existence, whatever that may be.

In ten years my eldest son, who has also made remarkable progress in his own way, still has incidents of aggression, remains prisoner to episodes of compulsive behavior despite our varied attempts to interrupt it, and will never live independently, will be at the mercy of those who care for him for the last decades of his life.

There is this autism too.

Despite how exhausting it is to deal with Justin’s needs on a daily basis I know we are fortunate, because these episodes rarely form the foundation of his nature, will ebb and flow like the tides. I am aware there are families out there who would give their right arm to have some relief from either a severely medically challenged child or adult or one who suffers as Justin sometimes does, and yet I don’t often see their stories told.

My guess is they are too enmeshed in getting through that day or even the next hour to write about their experiences, that many of their trials are silently born, unfolding in isolation. I imagine their concerns are less about having their stories shared than finding safe housing and appropriate jobs for their adult children, for finding respite for themselves

I just want to make certain as we celebrate the many positive aspects of autism, and I do believe there are many, that we don’t ignore the challenging and often heart-breaking aspects as well. Families and children are suffering. Sometimes, despite the many resources we have at our disposal, this family suffers too.

Sometimes, dealing with autism is just damn near impossible.



  1. Louise van der Meulen said,

    Wow Kim, how I love reading your heart-honest stories.

  2. I believe that when you tell the truth, including the good and the not so good, you tell the whole truth and in order to understand what someone is going through, glossing over the not so easy parts is not helpful to anyone. I applaud you for being the greatest Mom I know and for telling it like it is. Your sincere honesty and courage in speaking/writing helps others who are going through difficulties in their lives as well! Thanks for being you! ♥

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