I’m sometimes asked why I share so openly (sometimes
painfully so) my family’s life with autism. Ben is so high-functioning that
most people would not even know he is affected. Ben can and does “pass for
typical” most of the time. So why talk about it? Why tell our story?
Families affected by autism experience hardship in a variety
of ways. Affordable access to diagnosis and treatment is not readily available
because most insurance companies won’t cover it. We sometimes have to fight tooth
and nail for the free and appropriate public education to which our children
are entitled. We cannot easily find answers to our questions about the myriad of
treatments available. Our marriages far too often crumble under the stress. But perhaps most devastating, we hide in
our homes, isolated, sometimes for years, because our children behave in ways
that are unexpected and an uninformed public is often unkind. We are made to
feel ashamed.
I share my family’s story, not to label Ben, but to strip
away the need for a label at all. To dispel any negativity an uninformed public
might associate with the diagnosis of autism. I share our story hoping that other
families affected by autism, especially those with newly-diagnosed kids, might see that there is no need to hide. There is no shame. To let those families know there is community and help and hope for them.
There is no cure for autism, but we are often able to affect
behavioral change with our high-functioning kids, especially when diagnosis is
early. We were lucky to have an early diagnosis for Ben and because of that, we
were able to give him the tools to “appear typical.” But just because we’ve given
him those tools doesn’t mean the requisite behavior comes naturally. I think
Ben works harder than anyone I know at fitting in and behaving in ways that society expects, but only those
closest to him truly understand just how hard. Only those closest to him see what a struggle it can be.
I share my family’s story to honor Ben and his incredible
determination. To acknowledge how very hard he works at things the rest of us
don’t even have to think about. To celebrate his courage.
In the community of people affected by autism, there is some
debate about the need for a cure—a debate I honestly think is unnecessary. Parents
of children on the low-functioning end of the spectrum desperately want a cure
and I stand with those parents and support the funding of research into finding a cure. But those of us with high-functioning kids might believe
that a “cure” would change our kids—that it would somehow take away my Ben’s “Benness.”
Those of us with high-functioning kids desperately want acceptance and inclusion for our kids. We advocate for
these things, very often with parents desperate for a cure advocating right along beside us. Because no matter where we stand on the issue of “cure,”
we all want answers. We all want tolerance and dignity and respect for our
children. And we all want to be heard.
A speaker at a conference I attended recently observed that
parents of children affected by autism are drafted into this cause. We work
hard to raise awareness and fight for our kids, but our work will never be
enough. This speaker was of the opinion that what the cause really needs is
more enlisted.
I share my family’s story to increase awareness among those not personally affected, hoping to make even one person hear us. Hoping to make even one person care about the struggles of
the thousands of kids affected by autism. Because these beautiful, unique, wonderful
children, who touch people every day with their strength and courage, deserve a
better future. They deserve our compassion and support. I was drafted into this
cause, but the cause needs more enlisted. I share our story hoping you’ll enlist.
But perhaps the most compelling reason I share our story is because
I so often feel powerless to affect change on behalf of these kids. I feel I almost have to share my family’s story with autism so openly, brutally honestly and, let’s
face it, sometimes painfully, because it’s what I can do—it's quite possibly the
very least I can do—for this cause and these kids.
One in 88 is one hell of a lot of kids. I think it’s time the
world got to know them. And that's why I will continue to share my family's story...until all the pieces fit.
