My older brother is autistic.
His name is Bill.
He’s aphasic, so he doesn’t speak in sentences or all that often…and he’s a charmer, loves to eat sometimes foods all the time and is a master of the barbeque grill (with supervision…lots and lots of supervision).
Growing up with autism in my world has taught me a lot about communication…about the power of sound, the meaning behind high pitched wails or low rumbling laughter.
Autism has taught me the precious value of a hug or a kiss…of eye contact or a quick glance…of a tickle and the giggles it inspires.
I have lived my entire life with autism.
For me and mine, autism is…it just is. Sometimes it’s a pain in the ass and sometimes it is the most amazing thing, but autism is a constant thing not limited to months or years or days when walks take place.
Autism Awareness Month often brings with it a lot of stories about autistic children. I understand why, because so much rides on early diagnosis and therapies and education. But my brother is 39 years old…he’ll be 40 this July (Lawd, have mercy!)…and not enough attention is given to autism after a child with autism becomes an adult with autism.
So, be aware…that my brother’s life isn’t wretched or sad. My sister and I work very hard to make sure that it isn’t.
Bill is not a cure that didn’t happen or a diagnosis…he’s a human being, who gets up every day and goes about his bitness.
Some days are good.
Some days are not so good.
I could say the same about my life.
Be aware…that autistic children will become autistic adults. A body doesn’t grow out of autism. That is not an argument against advocacy for autistic children…but rather a challenge to advocates to extend our work beyond programs for children.
Be aware…that there is a strain on loved ones and that not all of us are parents. I am my brother’s co-guardian and, as such, I often find myself wading through the world of programs and funding…of Medicaid and the Department of Mental Health…of wants versus needs. My sister and I balance our role as sisters with our role as guardians…and we are not the only ones doing it. Families need to plan for a life, not just a childhood…they need support and education on how the system works once a child becomes an adult.
Be aware…that our lives are a different kind of normal.
I grew up knowing that eventually my sister and I would have to take on a guardianship of some sort. I confess that I used to fret about it…I watched my mother become consumed by advocacy and the search for a cure and I worried that I’d never be able to be a sister for all the demands of being my brother’s advocate.
But be aware that my different kind of normal is a life full of happiness and bitchitude and laughter and tears. We have challenges and set backs and achievements and victories.
More often than not, we share a meal…catch up on what’s new…and communicate with each other in a way I never dreamed was possible until it simply was.
Not a life of regrets and guilt, but a life where sometimes my brother gets on my last nerve…and that’s okay, because all brothers can work a nerve.
Sometimes I worry about my brother’s future and happiness…and that’s okay, because people who love each other want the best for each other and sometimes fret over shit like that.
April is Autism Awareness Month…a month out of a year in the lives of millions.
This I write for my brother Bill, lover of sometimes foods all the time, who I love beyond measure even when he works my last nerve.