Autism Awareness Day

Author’s note: Every year (okay, the last three that I’ve been writing), I try to take a new approach to my posts during Autism Awareness Month.  This year I’ve chosen to write about my own awareness of how my perspective on autism has changed, as well as to take the opportunity to celebrate a number of individuals who have made incredible contributions to the autism community over the past two decades.  There’s an upcoming post dedicated to teachers (love those educators!), and several posts about three men and women who have contributed immensely to autism awareness.  I hope you enjoy them!

Last note…  I want to take a moment to thank all of my readers throughout New Jersey.  I write in part because it helps me process the effects autism has had on my family, but frankly I can process things with wine and chocolate just as well.  I mostly write to share my experiences with the hope that someone reading my posts will find comfort in knowing they’re not alone, and perhaps come away with some ideas that will help make their lives, and those of their children, easier.  I appreciate all of the respectful comments as well.  I certainly don’t have all the answers, and I love hearing different perspectives from my readers, even when their opinions differ from my own.  Autism (and Oprah) have taught me to how to have a thick skin, so dissent away.  A special thank-you is also in order for several Patch editors who have been especially supportive:  Denise Di Stephan, Daniel Nee, Tom Davis, Christina Johnson, Rebecca K. Abma, and Joseph M. Gerace. Thank you all so much!

A few months ago a study from the University of Connecticut came out stating that some children who are accurately diagnosed with autism in their early years can grow out of it. The study, spearheaded by Deborah Fein and published in the Journal of Child Psychology and Psychiatry, looked at thirty-four adults between the ages of eight and twenty-one. All were diagnosed with autism spectrum disorder before the age of five, and all no longer showed any remaining signs of the disorder. In fact, the study showed no difference in their performance on standard tests when compared with a control group who had never been diagnosed with autism.

Just to keep this in perspective, current statistics show that only one in twenty children given the autistic label in early childhood will outgrow the symptoms.

When I read studies like this I am immediately brought back to my early days with Justin, who was diagnosed in 2004 at seventeen months, before Jenny McCarthy and autism were household words. Back then having a child diagnosed before the age of two was a rarity, and I recall that I held onto this fact tenaciously in those first few months. I enveloped myself in the comfort that at eighteen months of age Justin was in a thirty to thirty-five hour a week ABA program (mostly conducted by his mother), in some cases a year or more before most children were enrolled. His instruction was my solace in a time of chaos.

 Quite frankly, I’ll admit that in that first year of therapy I was desperate. At that point I’d had exactly one interaction with a severely autistic person, the sibling of one of my former students. She was a pre-teen by the time I met her, very challenging behaviorally, and often quite unhappy. I remembered how extremely tired her parents looked, and how her younger sister, my charge, seemed wise beyond her years.

That experience stuck with me over the years, permeated my thoughts about what the future held for my firstborn. What terrified me for Justin was not that he had a label, or was different than most of us. Some of my favorite students were quite “different” from the mainstream, some with Downs Syndrome, some with severe ADHD, some just marching to the beat of a different drummer. Most of the time they were happy; in fact, I often felt they were happier with themselves than most of us truly are.

What horrified me about Justin’s diagnosis and the apparent severity of the disorder’s presentation in him was that most of the time he was unhappy too. Not cranky. Not irritable. No, my boy was predominantly, seemingly irrevocably miserable (and with his constant lack of sleep, reflux, and diarrhea, who wouldn’t be). In those first tenuous months of instruction all I thought about was “curing” him, rendering him indistinguishable from his peers. Sure, I wanted to hear his elusive laughter more frequently too, but mostly I wanted to strip his autism from his soul, render him more “typical”.

I wanted him to be like me.

My feelings have changed dramatically since those dark days almost nine years ago, but I stand by how I felt then, feel a tenderness toward that first-time, terrified, mother. My baby was undeniably suffering. I would have done anything to make it stop.

And now, thank God, I can truly say he isn’t suffering any more.

Justin’s life trajectory will not follow a traditional path, or at least the road my family has generally traveled, one which includes higher education, a life partner, friends. I’ve accepted this, and also accepted that part of me will always mourn that he won’t have the trappings of an existence that have so enhanced mine. What’s come in the wake of this acceptance is the dawning realization that my son adores his life, his routines, the few sacred people whom he loves, and by whom he is loved in return. He is, most of the time, perfectly happy.

At this point, it’s just me who sometimes struggles.

He will not “recover”. There will be no magic pill for him, no concoction which makes him speak, no sloughing off of the characteristics that comprise his particular type of autism. I will forever chase off my fears of his future life without his parents, what will unfold for him when we are no longer here to protect him, respect him, love him for who he is. I’ve accepted this part of his path too, that I will worry until my last sentient thought dissolves into nothingness, and I am no longer of this world.

Yet he will still be here. And so I continue to work toward a world for him which includes a job that enables him to contribute to society, and a cadre of people who recognize his inherent worth. I continue to reach toward a world which extends past accepting his differences to celebrating them. I continue to hope that his world, whether I’m here or not, will remain filled with love.

Somewhere out there a child will be diagnosed today. A mother or father will be bombarded with information, avenues of therapy, promises of cures. It will all appear overwhelming, impossible, fraught with misery. There will seem to be only one solution to eradicate the sadness, one path to offer a child a fulfilling and meaningful life. There is more than one. There are many.

And to anyone embarking on this journey today, I hope my son’s story will help you to a place of peace.