It’s easy to think of your parents as old, because they are. It’s harder to think of your parents as gone, but one day, they will be.
This reality is incredibly hard to bury away for the caregivers of individuals with disabilities, like Autism Spectrum Disorder. Every time they eye a gray hair or slam their brakes in traffic, their first thought isn’t themselves.
It’s the person who would be helpless if they didn’t make it through.
There are approximately 860,000 people in the United States over 60 who are responsible for taking care of someone with intellectual or developmental disabilities, according to the University of Colorado School of Medicine. Often, these are the only people in the world who know exactly how to take best care of their loved one.
They’re the only ones who know exactly which toy is the favorite, what meals are best for tummy ache days and how hard to squeeze so the world stops spinning.
While some adults with ASD or Asperger’s can live independently, some require extensive care.
Come the absence of their primary caregiver, there are a few options severely autistic adults will have to confront. According to the Children’s Hospital of Philadelphia Center for Autism Research, these include: transitioning to the care of other relatives, adult foster care, group homes, community based cooperatives or entering institutions.
Services and funding mechanisms for adults with autism exist on a state-by-state basis. However, across the board, waiting lists for services are long.
In 2015, 80,000 autistic adults across the country were currently waiting for residential placements, a process which can take up to 10 years.
“Many [caretakers] are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs. If they can’t afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution,” writes Jen Fifield of PBS Newshour.
I remember figuring out what it meant to be dead, and throwing a fit. I wrote an angry letter to my mom and dad, because how dare they. How dare they be allowed to leave me.
It turns out, I’m not the child most at odds with their mortality. That would be my youngest brother, who at two years old, was diagnosed with autism.
At 19, I feel like I can do anything, but my brother’s horizon isn’t the same as mine.
He can’t say if someone’s hurting him at school, much less stand up to abuses in a workplace. He can’t order at a restaurant, much less navigate applications for Supplemental Security Income or Social Security Disability Insurance/Disabled Adult Child Benefits, both necessary for autistic adults to receive public benefits.
My brother doesn’t have the privilege of self-determination. Whether it’s the state or my parents, I look down at his hands, and I know, the choices inadvertently dictating his well-being are choices he can’t even trace with his fingertips, much less grasp, much less seize.
While other options are available, I promised my mom he wouldn’t ever leave family. As the oldest of three, when the time comes, I step up as my brother’s primary guardian.
So I fight, really hard, for all I can – because my successes aren’t just my successes, they’re my brother’s security. It’s part of my post-parents promise, the one no one wants to make.
I assured my mom I would never let anything bad happen to my baby brother. I said I would fight for him, but not every autistic adult has a big sister.