I call our mission to help Aiden “Coming home from Pluto.” Why, Pluto? Because it is the remotest object in our solar system; the little planet that suddenly wasn’t. Pluto is a perfect metaphor for what our life became when, just after he turned three years old, my son Aiden was diagnosed with Autism Spectrum Disorder. The moment those words were pronounced, our beautiful, affectionate, smart little boy; the one with the big green eyes, curly blond hair, sweet smile, and ostensibly promising future, suddenly…wasn’t. It felt that way, anyway. All our hopes, our dreams, our exciting plans…smashed to smithereens and replaced with “experts” who told us there was little they could do to change his prognosis. Prepare to eventually have him institutionalized, one said.
We found there were very few easily accessible resources; those we did find often withheld vital information (government agencies seem to use an unwritten, “Don’t ask, don’t tell” policy as their primary method of cost control). These agencies either couldn’t or wouldn’t answer our most urgent questions. Long-time friends retreated from us; family members, while loving, still didn’t get it…and we quickly found ourselves relegated to a cold outpost at the end of the societal universe. And there’s no restaurant, unless you open one yourself.
Which is what we did. Aiden is not yet fully recovered and I don’t know if we will ever get there. But after years of exhaustive research, medical treatment, patience and persistence he is a healthy, bright, talkative boy doing almost all the things the experts said he never could.
When Aiden was younger, I tended to mark time by using what I call the “Before and After”Timeline. I used “Before Diagnosis,” or “B.D.,” only because I can’t pinpoint the exact day or time when I lost my bright, responsive, smiling little boy. My son, who initially met all his first-year milestones right on time, slowly began to slip away from us. Aiden retreated into a strange, silent world where (no matter how desperately we tried) we couldn’t reach him. There were a few minor clues very early on that should have made me recognize that something was wrong.
However, the change was so subtle, so gradual that even when the niggling worries at the bottom layer of my consciousness attempted to claw their way to the surface, I still managed to rationalize and banish them back under to their dusty, unexamined little corner of my brain.
But the day everything finally came streaming out of Pandora’s Box and refused to go back in is a memory that stands out in sharp relief from all others. It happened in the park. Aiden was 17 months old. There were several children there, about his age, climbing, sliding, squealing, laughing and interaction with each other…except for Aiden. He sat with his little body turned away from the other children; his eyes and face were nearly expressionless. Aiden intently stared at the ribbons of sand that he sifted over and over again through his fingers as if nothing else existed.
That was the moment of such utter, crystal clarity; the internal confirmation and acceptance that something was simply not right. It was so stark, so true, and so final that I the hair on the back of my neck stood up. For months, I was nearly alone in my belief that there was something seriously wrong with my son. My family members (except for my husband) and friends told me I was being “overprotective” and “over-worried.” The doctors I went to for help, told me to go home. I should just stop worrying and bring Aiden back after he turned three. So I did. As long as there was no official reason for Aiden’s delays and differences, most of the time I could live in my bubble and believe everything was normal and turn out fine.
That was BEFORE.
When the diagnosis finally came at the age of three, the bubble permanently burst. I spent two weeks crying non-stop. When I decided there was no more time for tears, I rolled up my sleeves, and planted myself in front of my computer. I had work to do.
That was the beginning of the A.D., AFTER DIAGNOSIS time period.
After a few years of AFTER, we had incorporated floortime, speech therapy, IEP meetings, and medical interventions into our daily schedule. We were especially grateful for the help of a brilliant, passionate, cutting-edge pediatrician who understood that autism is medical and needs treatment.
Slowly, I came to understand that the BEFORE/AFTER differentiation is actually meaningless. Initially, I had wanted so desperately to go back to BEFORE: before Aiden slipped away from us; before being slapped with that stigmatizing, isolating, and artificial label. But gradually the realization came to me that there is no point in dreaming about Before, because there isn’t any going back and never will be. There is only going forward and figuring out the best way to play the hand we’ve been dealt.
The more I learn and understand, the more I realize I can’t define what Aiden has as autism. He has a medical condition that has improved tremendously with treatment. More correctly, it should not be called autism at all but defined as the immune dysfunction that causes inflammation in his brain. The disordered neurological symptoms that result are what doctors call autism. Now that Aiden is gradually coming back to us, the dark circles under his eyes are gone. The flat affect and dullness has been replaced with brightness and understanding. His speech, his sense of humor, his ability to empathize, his spark, all seem to be returning and developing even more as his immune system improves.
Now we only use the word “Autism” when we need it. It is simply a label that ultimately enables him to take advantage of helpful services and programs at school and in the community, but we never, ever use it anywhere to define him. Autism is not what Aiden IS; it is something that he HAS. He is the same child, the same human being he has always been.
Life is made up of choices, and when I consider the realm of possibilities: I chose W.I.A.W.C.B. What Is And What Can Be. That is a much healthier, happier place than the doldrums of “BeforeandAfter. “ Now I know we are almost home from Pluto.
Note from Marcia: Ryan became an aerospace engineer after he received proper medical treatment combined with behavioral and educational interventions. If my son can recover, maybe yours can too!
All profits from my book I KNOW YOU’RE IN THERE go to spread the word that autism is TREATABLE!
Preview and order the book here.