That evening I turned off my laptop, exhausted, a little tearful, and a lot angry!
But not for the reason most people think. I was not angry that my son "has" autism. Rather, I was angry because over and over again autism was characterized like a disease. One that needed to be irradicated and destroyed. But that in turn meant destroying my son!
Sitting in his psychologist's office as she walked me through the DSM IV's criteria for Asperger's, I suddenly saw all the little pieces fall into place. And the picture they formed was of a brilliant, inquisitive, loving, tender-hearted, dark-haired, hazel-eyed, slightly freckled, boy... who I love so much my heart sometimes feels like it's going to explode!
While my eyes that day were opened to the neuological wiring that he was born with and manifests at times differently than "normal", I also clearly saw how integral this "condition" was to who my son is. There is no line to be drawn between him and autism. It's not in anyway clear cut.
So perhaps you can understand the sting I felt over and over in my research that this "disease must be cured". My son is NOT diseased!
And these feelings did not change a few months later when it was confirmed that my daughter was also autistic, in some ways more profoundly than my son.
So I did not take advantage of Autism Speaks' package for parents with a newly diagnosed child. Nor have I subscribed to any other programs or websites that promote that view. I usually cease even reading further if that position seems to be propagated throughout.
I do not, however, know what it feels like to experience the severity of having a child who cannot or will not engage with his family, reciprocate their love, or not progress on schedule or attain essential life skills such as toileting, dressing, and feeding. That is an intimacy with autism that I am grossly unqualified to represent. So I do not mean in any way to demean others or be dogmatic in my view.
I do not believe autism can only be defined by a set of criteria in a diagnostic manual. I believe that criteria is a beneficial tool, to be sure. But it is no more a conclusive definition of austism than a tool bag defines a carpenter. Sure, one can deduce by the contents of said bag the occupation of its wearer. But that by no means completely defines the individual. The same is true of autism, it means something different for each individual.
For some it ehances, for others it isolates, for many it allows amazing gifts, and yet for all it presents obstacles and challanges. It can be all or very few of these things and every little bit in between. But every single one of these people affected is unique and precious.
I have had two children officially diagnosed on this spectrum, and a third who may not get an official diagnosis but certainly manifests many traits though perhaps less disruptive than her siblings. And each one is a gift in my life. While I wish them to have the greatest opportunities to thrive, I more importantly want them to be loved, for who they are. So we will continue to seek therapy, and research, and the expertise of well informed professionals in order to help my children shine. And we will work hard to help them use their strengths to fortify their weaknesses.
But I will always choose to see thier light. Their brilliant rays. And I choose to be their prism. To serve to bend their light so that others can see the brilliant colors of their hearts. They are little rainbows dancing all around us!
Funny thing about rainbows. They often look like they begin and end, but this is an illusion, usually created because of our point of view. But in reality they have no beginning and no end, and it is nearly impossible to tell where one color ends and another takes over.
So too, with my children on their "spectrum". I can't tell where my children end and autism begins, they are an amalgam, working together, symbiotic. To remove one without fully understanding it, would damage and alter the other. And I'm not a buyer at that price.
We often have to weather the storm in order to see the rainbows. And so our family will, because when the skies clear for even a moment, I get to see three!
That is just a glimpse of what autism means to me.