I came across a blog post not that long ago by a mother who was arguing that autism is nothing to be afraid of. Her point, if I remember, was that she had been incorrectly conditioned to believe that autism was a scary diagnosis, and that the people who put forth that idea were not only irresponsible, but also dangerous and misleading thousands of parents. In her view, autism had turned out to be an unexpected gift, and there was nothing she would do to change it. Or something like that.
The comments were all very supportive. These parents were angry with folks like me who had spent years sounding the warning bell, sharing our heartbreak, and calling for action. What were we so upset about? They wondered. And how in the world could we possibly contemplate changing anything about our kids?
By the time I read it, I was fully aware of this perspective. It’s the group of people who want to convince the world of a number of things: autism has always been around; it’s a natural state of the human condition; it’s a gift; there’s nothing that can be done; and there’s nothing that should be done. (Wrong, wrong, wrong, wrong and wrong.)
Rejoice in the diagnosis, turn on some Big Bang Theory, and raise awareness, they proclaim…their awareness, they really mean, which actually just translates as acceptance. Just accept it. Adapt to it. Accommodate it. That’s it.
I try to respect other people’s experiences with autism to the greatest extent possible. Just as no one can tell me what I did or did not live, or how I should feel about it, I do my best to honor the same for others.
It’s just that I don’t know how we’re living such different experiences. And I don’t know how they don’t see the profound difficulty, disability, and danger that so many families experience. Worse, I don’t understand why they don’t want to help those children and families.
I wonder, what do they think when a child wanders and drowns? Do they still seriously believe autism is nothing to fear? That it’s a diagnosis full of joy and wonderment and possibility?
Just recently, another little boy with autism was found dead in a pond not far from his home. I have stopped keeping track, but this is over the tenth child with autism to die from wandering just this year.
He died from his autism. Yes, technically he died from drowning. I get it. But you and I both know his autism killed him. It drew him to water, impaired his judgment and communication skills, and killed him.
Autism killed him. And Avonte Oquendo. And Owen Black. And Mikaela Lynch. And Jeremiah Conn. And so many, many more.
On my newsfeed several more disturbing stories pop up.
The one where a 16-year-old boy was beat up for fun at a party.
The one where teenagers took a young boy with autism, beat him and stole his clothes, leaving him alone in a park.
And the one where a new study finds adults with autism are more likely to be sexually abused.
Only a few months ago there was also the story of young boy being kept in a dog cage by his parents because they couldn’t control him.
Another story about a child being starved and locked in a closet.
And of course, the now infamous story of the ice bucket challenge, where a group of teens decided it would be funny to dump feces and urine on an unsuspecting boy with autism.
These are the stories just in the last several months.
As the president signs the repackaged “Autism CARES Act”, a more politically correct and palatable version of the “Combating Autism Act”, I wonder how much he and the architects and champions of this legislation actually “care” about autism.
Do they care that children are wandering off and drowning? Do they care that 2% of American boys have an autism diagnosis? Do they care this population of people are extremely vulnerable to heinous attacks, sexually and physically?
Do they care that the autism population is vastly under or unemployed and likely will never contribute to the economy, but may rather actually drain tax funds by relying on the government for housing and living expenses?
Do they care that autism is a painful, seriously physically debilitating disorder for many? That it is bankrupting families? Bringing marriages and parents to the brink? Stealing life potential, siblings, self-esteem, and friendships by the second?
Do they care that there is a tsunami of children aging out of the school system right now, this very moment, who will need somewhere to live, services, jobs, and more as their parents age…and that those things currently don’t exist?
Do they care close to one million people with autism can’t speak or have very limited speech? Can they imagine that for a second?
I just don’t get it. I don’t see how these very real parts of the autism experience can be so blatantly ignored…no, more like denied. Dismissed. Ridiculed. Even reviled.
And I don’t see how those of us who call for action, who want to put a stop to the epidemic, who want to save these lives, provide these services, and stop this suffering are being shut down by those who are offended at the mere suggestion another person or parent’s experience is vastly, vastly different and more dangerous than their own.
And there’s more.
Death. Drowning. Violence. Abuse. These are the worst of the worst when it comes to the pain autism can bring. They are also the most visual. But there is even more to it than that, an underbelly of pain that is far more prevalent and far more chronically shared that rarely gets discussed. And it certainly wasn’t addressed in the “Autism Cares Act” either.
The scream of a child who can’t tell you where it hurts or what is wrong.
Signing court papers to take legal guardianship of an 18 year old.
Watching the light go out of your healthy baby’s eyes and being told you imagined they were ever fine.
Attending an adversarial IEP where you and the people who are supposed to be educating your child are at odds over services and money.
Sleeping in front of your child’s bedroom door because they might wander in the middle of the night.
Seeing the neighborhood kids laugh and play and hang out while they pass your house, not even remotely interested in having anything to do with your child who is immersed in her I-pad.
The sound of the “thud” on the floor when your child has dropped from a seizure.
The baseball games they didn’t play. The dance recitals they didn’t do. The sleepovers they didn’t get invited to. The honor student they’ll never be. The giggles and friends they’ll never make. The posters of heartthrobs they’ll never post on their walls. The driver’s license they won’t get.
The list is endless. Absolutely endless.
It is a kick in the gut every second of every day. It is wearing a shield of armor everywhere you go, because just when you least expect it, just as you go to put it down for a moment, a child your child’s age walks in front of you and does something or says something that your child can’t…and you are reminded all over again of this fact.
It is the non-stop heartbreak, the never-ending pain of the loss of the dreams for them you once had, coupled with never knowing what their dreams actually were and if they know what they have lost. No matter how much they recover, how much they go on to achieve, it’s the constant wondering at what could have been and what will be.
And it never stops. Ever. At best you can learn to live with it, accept it, and find the joy in the alternative. And eventually, you do. But it will never, ever, ever replace what could have been. And deep down inside you know that and carry that wherever you go for the rest of your life. And to make matters worse, you are now afraid to admit it because insensitive people judge you and accuse you of not loving your child as they are.
It’s all bull, this “Autism CARES” nonsense. Because the truth of the matter is, from what I can tell, it seems nobody actually cares. Outside of those who live this and fight every day to make it matter and make a difference, nobody in any position of power to really do something about it actually cares based on their actions. Not the President. Not Autism Speaks. Not the IACC. Not the self-advocates.
They don’t seem to care about someone like my daughter who probably won’t ever be able to get a license or live on her own, even though she has a wicked sense of humor, a caring loving heart, and a sensitive soul. She is the antithesis of Sheldon Cooper, but the powers that be don’t consider her. Just accept her. Just accommodate her, they say.
Nor do they seem to care about the kids who wander off into the night to be found in the pond the next day. They just don’t want to be offended by the suggestion there’s a problem. That at its core autism is anything but a gift for far too many.
But the pain that hurts the most is this: That we are living in a twilight zone of vastly different experiences with the same diagnosis, and the one with all the money and influence to make a difference for us is the one who is offended by or uninterested in ours.
So where does that leave us? And where does that leave many of our children?
Based on the evidence thus far, we know where.
Dead in a pond. Friendless. Vulnerable to sexual predators. Abused and stripped naked in parks. Crashing on the floor in seizures. Doused in feces. Stuck in dog cages. Living at home until their parents die. At school until they’re 21, and then unemployed and potentially eventually homeless.
Now tell me again how much we actually care about autism?
Julie Obradovic is a Contributing Editor to Age of Autism.