I’ve been pretty quiet on the autism front lately. I’ve resisted the urge to write about Alphonse for the longest time, thinking that I should stop over-analyzing everything he does and just simply let him be. That I should stop seeing him through his disability and see him just as a changing young man with different needs. That I should stop trying to “save” him.
In the past, I’ve often felt like a vigilantly crusading autism mom. I wrote, I spoke, I breathed autism. But the last year has seen a definite change in how I view our world; despite all our attempts to reach out and open the world’s eyes to the most common kind of autism- the kind that has no savant skills, that wets the bed even beyond childhood, that rages, laughs, or cries for reasons beyond our understanding, that lives with difficult behaviors that hurt himself and others, that needs help in all aspects of daily living- ours will be a journey we will have to make on our own.
We walk this path with our son, a solitary journey that no one else seems to understand … or to care for much in this country. We have often faced blank walls in the pursuit for help. We have run into dead ends and blind alleys with no one to help lead us out. Often, we are pushed behind curtains and ignored. No one wants to hear real horror stories, it seems. No one wants to know.
Because of this, the irony of the celebration of Autism Consciousness Week in this country is not lost on us. We are quick to glorify and publicize special achievements but are unable to do anything for those who do not fit this idealized version of autism we persist in believing in. We don’t want to address it, much less, talk about it.
I am jaded. Or maybe I have just become, after years of idealism, a pragmatist, or worse, a realist who no longer dreams. What I do know is that I am tired. Tired of fighting this world that sees things in rose-colored lenses. Tired of speaking about things no else listens to. Tired of pretending that our son is just a sad aberration in the wonderful, quirky world of autistic differences. I am tired of all the “I am so sorry for you” BS and the patronizing sympathy that comes with the introduction of my name.
In these times when my helplessness turns into a quiet rage, I cling to the one thing I do know of- that despite our difficult life, we love our son with all our hearts. And we celebrate him every single day of our lifelong solitary journey.
If you really, really want to celebrate Autism Consciousness Week, then it’s time to get real. It’s time to walk The Walk. Come back to me when you’re ready to deal.