When I look at this photograph of Pete it startles me into a sense of just how far he has progressed and by progression I don’t mean his significant strides academically or socially. Progressed may be the wrong word actually; journeyed might be a more appropriate description of his transfiguration. I look at his eyes and I realize and remember that there was never a time in his life when Pete was further away from us then he was right here. Eons away, dimensions away, residing in a world known only to him and others like him. It wasn’t constant, it wasn’t even prevalent but when that look was there it suggested to us the helpless fear that he may never return. Much has been written about the eyes of the autistic child and the mysteries they contain, about their expressiveness and their depth. When they show fear it is a tremulous fear like that of an animal in pain. When they show joy it is a palpable, tangible, infectious expression of absolute bliss. When they are at rest, the gaze is deeper, almost celestial. Maybe Hawking or Einstein could better explain what is happening in these eyes, what these windows reveal. Maybe this is what all eyes looked like before original sin.
I don’t have to see Jenny’s eyes to know that they are sad. The rest of her countenance betrays this truth. This was a time in our lives when we wanted our beautiful boy back. When we selfishly wanted all of him, not just glimpses and flashes. I am certain it was the hardest time in Pete’s life also and was the only time that we ever believed that autism was a plague to be vanquished. We felt this, because at times autism was denying us of someone we adored. We wanted the full Pete experience not the economy package. We wanted what we had in Ella, her constancy and her dependence on us. We wanted to be parents to Pete enjoying all the same interactions that we experienced with Ella. Too often we felt like shepherds. Thankfully it’s been a very long time since we felt this way.
I’ve never liked reading claims of parents and doctors who have cured their children of autism. Autism is not cancer. The word cure suggests that some unspeakable affliction has denied us something. In Pete we have been denied nothing. Rather we have been given the opportunity to occasionally step outside ourselves and witness what true humanity looks like. What decency personified can achieve. What hard work and perseverance can accomplish.
While I welcome a more concrete explanation of the origins, I’ve never invested much energy in the need to blame someone or something for autism. The notion offends me on some level, as if I were personally done some injustice for which I should demand retribution and compensation. Whether the cause is genetic, environmental or evolutionary doesn’t make much difference to me and doesn’t alter in the least the task at hand. The task of course being, to raise as you would any; a healthy and happy child. In this case the task has required some specialized approaches but rather than cheat us, it has only enriched us.
I’m bemused by the portrayal and perceptions of autism in our media fueled society. I too applaud a story of a popular kid asking an autistic classmate to the prom but my reaction is going to be a little less “aw shucks” saccharine then that of the general audience. My son is a handsome and congenial gentleman. A girl could do much worse when looking for a date. There was a video making the rounds some years back of a young man with autism put into a high school basketball game of no consequence and sinking basket after basket to the thunderous applause of the spectators. It warmed my heart also; but ultimately, isn’t that what you’re supposed to do in a basketball game? I look forward to the day when that kind of participation and expectation is commonplace. Too much of what I see, from scripted television, to features in the news, would have you believe that every child with autism is a quirky genius just waiting for the opportunity to solve the riddles that befuddle the rest of us. Wouldn’t that be easy, fun even? Fact is, they are as uniquely individual as the rest of us and their attributes and their shortcomings are many and varied.
I’ve posted many photos of Pete that would offer no suggestion whatsoever of autism. We have tried as we can to raise him no differently than Ella. I pray that any perception of Pete has everything to do with joy and goodness and love and nothing at all of autism. In our daily lives, I prefer to regard autism as being of no consequence but since it is World Autism Awareness Day maybe this photo can be of benefit. If you would like to be aware of autism today, be aware of the many families who are right now on the hardest leg of their journey.
Be aware that a child you might see in an explosive public melt down may not be just another spoiled offspring of enabling parents but may instead be an autistic child in the midst of a sensory experience that you couldn’t fathom in your wildest imagination. If the parents look incapable, it is because they are. Cut them some slack.
Be aware of the countless dedicated teachers, therapists, siblings and other family members who have strived tirelessly to understand and accommodate autism. Those who have selflessly helped the children of autism to experience, learn and achieve and who have shed many tears in the process, tears of inept frustration and tears of immeasurable joy.
Be aware of your own children and take pride knowing how many of them try so hard and so successfully to be good and kind friends to kids like Pete.
Finally, take every challenge you have ever faced and multiply its complexity by ten and realize that this might only be the beginning of your comprehension of how hard a child with autism has worked to adapt and overcome.
Do what you may to recognize Autism Awareness Day. Put a blue bulb in your porch light and by doing so maybe persuade someone else to consider autism for a moment. Donate money for research and better understanding or simply to offset some of the financial burden families face. Encourage your children to become special education teachers, therapists, scientists or neurologists. Do a lot, do a little or do nothing at all but when you eventually meet someone or have a family member with autism, please remember to extend kindness and understanding. It’s been my experience that you will receive nothing less in return.