He is frustrated and angry. He tries to make a point, but the words are held hostage by his inability to articulate exactly why his point is important. His mind focuses on one thing, an important thing. It might be a moment in a television show, it might be the loss of his favorite book (which has just been misplaced, not really lost), or it might be his need to get in on a conversation with the adults around him who are discussing something of interest, something he wants to have a say in.
But his words fail him. He repeats the same thing over and over again, trying to explain that thing, but no one listens after his first five attempts. He knows, in his head, that something is wrong with him, but he does not understand what it is or why he can’t fix it. He knows his older brother is just as “wrong,” but his older brother doesn’t seem to notice.
“I boiled an egg!” older brother crows for the umpteenth time that year. And it has been a year since older brother first boiled an egg, but older brother remembers it as if it were just five minutes ago.
These are people I know with Aspergers, an autism-spectrum disorder that has (just this year) been abolished from the list of Autistic-like diseases because there is no difference between Aspergers and high-functioning autism. Then I started meeting other people with autistic children. I’ve heard a lot of interesting stories about how parents muddle through their lives with mildly or severely impaired children. Some of these children have mental disorders, others have physical disorders, and still others have both and are completely unable to respond to their caregivers.
But the issues I know both the most and the least about are the Aspergers / autism disorders because I personally know several children afflicted by these issues.
Issues. Disorders. The words seem so tame compared to the reality.
The reality is hyper-sensitive hearing or vision leading to a fit inside Chuck E. Cheese’s because the music and arcade games are overwhelming his ability to parse data input. The reality is a teacher (or other bystander) calling the Department of Family Services because of bruises on the autistic child’s arms and legs, bruises earned not by abuse but by the child’s constant ramming of himself into a wall, door, or struggling with the parent trying to hold the child still until the fit is over with so the child doesn’t actually harm himself (or anyone else). The reality is an entire generation of parents who, because of the advanced quality of medical technology, see their entire lives (even beyond retirement) taken up with the care of their autistic children who have no mechanisms for leaving the house and living a “normal” life without guidance.
The reality is knowing when your child is twenty and you are in your forties, your child may be so much stronger than you that the next time you try and hold him down during a fit, it may be you ending up with the bruises, concussion, or worse.
Every year, the number of reported autism cases rises, making me wonder if the number of children with the disorder actually is increasing or if it’s just that more people are getting diagnosed with the disorder. At some point, the adults with this disorder will be out in public. Their parents (or caregivers) will pass away, leaving these people in the unenviable situation of fending for themselves. Many of them will be taken advantage of, many of them will end up on the streets. I don’t know how many will end up in hospitals or group homes because it seems to me there aren’t a lot of resources out there for autistic adults. Most of the material I’ve seen is geared towards families with autistic children.
Even if there were resources out there for autistic adults, how many of them would be aware enough of the world outside their minds to take advantage of these resources?
And if this is the situation in the United States, then how much worse is the situation in third world countries without the resources to take care of their “normal” citizens?
Back in the 80s and early 90s, the media covered stories left and right about how insufficient our elder care facilities and resources were. Much of the reason we’ve seen an upsurge in retirement communities, nursing homes, assisted living facilities, Medicare plans, and other laws & policies are because an aging Boomer community took it upon themselves to ensure they would have good care and resources when it was their turn to retire. But the children and young adults suffering today from autism do not have a big enough voice in politics to ensure the same for themselves, if only because so many of them are disconnected from society because their brains have betrayed them.
Someone needs to stand up and speak for them. Someone needs to sound the call for help. If not us, then who?
It’s time to consider our options. “Locking them up,” a centuries-old, time-honored technique will not work. We’ve seen how the old asylum model works and it does no justice, and a lot of harm, to those who have half a chance at doing something productive with their lives. What else can we do? How else can we help? What support will we give these people when the people they depended on the most finally disappear from their lives.
He knows something is wrong with him. He knows he can’t fix it. He doesn’t have the words to explain it to others, either. And that frustrates him. He will spend the rest of his life knowing that people are giving him funny looks and saying things behind his back because he cannot escape the prison of his own mind.
Wouldn’t you be frustrated too?
LINKS: Autism Research Institute
Autism Society
Autism Speaks
