I don't think its any kind of secret that I am one of those parents who sees my son's autism not as a problem to be fixed but as simply part and parcel of the person that he is. Yes, we have struggles. Yes, his autism has an impact on his daily life and as a result, often on ours. There are things I wish were going to be easier for him and since they're not I see my job as doing all I can to make sure he has the tools and support he needs. I don't let autism be an excuse for harmful behaviors, but at the same time I'm keenly aware that it is a reason for the ways he experiences his world. Sometimes his behavior is the only way he can communicate effectively that something is not OK.
This life of ours is not unlike most other peoples' lives in that even though it is peppered with moments of difficulty, challenge or disappointment, the vast majority of the time life is really pretty damn good. I'm grateful for all that I have and do, grateful for amazing friends and family. I'm even grateful for many of my challenges, grateful because they've almost always served to teach me something that helped me grow.
Many of the parents I have met through my son's autism are just like me. They are optimistic - cheerfully or doggedly - and they are, like me, blessed to be able to experience the positive more than the negative. They, like me, are grateful to see the autistic adults showing the world that autism is not the end of the world. Like me, many of them take issue with any attempt to paint autism with the broad brush of "horrible," because for us, it isn't.
It isn't for them. It isn't for me.
And I - we - are god damn lucky.
Nothing polarizes the autism community the way news of yet another senseless murder/suicide by the parent of their autistic child.
It shouldn't be only at these times when I am reminded that there is another community within this community of special needs parents whose lives are far different from mine. Unlike the parents in that other, hidden community, my life is not a daily reminder of, as my friend Flannery writes, "how big this spectrum is." But it is easy in the process of living life as we know it to forget about the people for whom such a life is a dream long discarded.
There is a vast pool of gray between the opposites of right and wrong. There are things that are always going to be right, things that are always going to be wrong. And then there are the things that happen when people's lives are so out of control that they've lost the ability to recognize the difference. "People make choices," we say, and so they do. Some things are not choices, some things are the results of other choices, some things are simply statistical anomalies in the vast pool of complexity that is life. We don't know why some children are born autistic, we don't know why some children have autism that affects them more or less than others. We just don't know.
What I find particularly unnerving is the pointedly vacant pool of services available to families in crisis, whether due to autism or to mental health or other issues. Anyone who has been in physical, emotional or financial crisis (or is close to another person who has) knows that in times of great stress and fear it is nearly impossible to see the forest, let alone the trees. When solutions are completely absent -- when available services are untenable or simply spread too thin amongst too great of a service population -- when there is no help -- what do families do? There are no neat, cookie-cutter, self-help book, talk-show solutions for these parents.
One person's well-meant share of an autism success story has a far different impact on me than it does on families whose children will never have the cognitive ability to lead an independent, functional life. When I read the quotes in Flannery's blog post, I realize that being able to live with my autistic child completely free of fear is a gift. A fucking gift.
My problems have solutions.
As I said to my autism parent support group, "I don't even know where fixing this kind of problem starts."
One of my autism parenting heroes replied, "It starts with compassion."
So it does.