If You Meet My Son With Autism
My son has autism. There is no cure.
At least, I don’t think there’s a cure. I mean, if there is, I haven’t heard about it.
Oh sure, there are therapies and diets and ways to modify his behavior and medicine to help with his crushing anxiety. These are all very, very good things—great things, even—and they’ve been incredibly helpful.
But when the sun rises each morning and sets again each night, my boy Jack still has autism.
Maybe, one day, science will figure out a way to rewire his brain so that he can understand social cues and he won’t need Melatonin to sleep and he’ll finally let me hug him tightly with both arms.
I’m not holding my breath though. Not that I have anything against science or anything—not at all. In fact, I love science.
Science tells us that one out of sixty-eight children are diagnosed with Autism Spectrum Disorder. The Center for Disease Control says this is about 1% of the population. And 1% of the population is approximately 72 million people.
That is a lot of people. One time Jack screamed at me that there was no one else like him in this world and I said, well, buddy, that’s not true. There’s actually 72 million other people like you in this world.
He just turned and walked away, but hey. I tried.
The problem is, if 72 million people have autism, then that means 7.2 billion people do not have autism.
That is also a lot of people.
If you see my son, his autism may not be obvious right away. In fact, it might be a little confusing.
I mean, he looks like a regular boy. He is tall, with glasses, and he wears bright blue sneakers.
But after a few minutes, you might start to notice some of his, shall we say, idiosyncrasies.
Like how he looks at the floor and the ceiling and his feet—anywhere but in your eyes.
Or how he doesn’t answer right away when you ask him a question.
Or how his body bursts into a spontaneous dance where his legs jump and his fingers twitch.
You may even think he’s a little rude.
Here’s a riddle to solve: is it easier to change 72 billion people to understand the specific needs of 72 million people, or to change 72 million people understand the ways and habits and traditions of 72 billion people even if those ways and habits and traditions make zero sense and are very confusing and eventually lead to agitation and frustration?
My head hurts.
I’m not sure there is a solution.
I think we have to start small.
If you see my son Jack, take a moment, and say hello.
Ask him about music.
Ask him about cars. He loves talking about cars now, especially Honda Pilots.
Ask him about his dog or his mood ring or the latest Disney movie.
He bought the mood ring when we were on vacation. He reports on its color, oh, I don’t know, every five minutes or so.
Whatever you do, do not ask him about Oreos.
I mean, you can if you want, but be prepared to spend some time debating the best flavor. (Hint: his is berry.)
Do not, under any circumstances, give him your cell phone number, even if he asks for it a bunch of times. Let’s just say he gets, uh, a little enthusiastic with the emojis.
Be yourself.
This may sound obvious, but the thing is he knows. He knows when people are nervous or insincere, and deep down inside where his heart beats and his soul sings, this boy of mine longs for genuine connection. He longs for real conversation.
Take a moment, and tell him a little bit about your own life.
Tell him what kind of car you drive, and if you have any pets, and whether or not you like avocados.
He loves avocados.
You don’t need to talk loudly, or slowly. He can hear you, even if it appears that he can’t. He is listening, even when it seems that he isn’t.
He is not deaf, or stupid, or arrogant. It’s just that words are hard for him. They are like so many bright, luminescent butterflies flying above his head. Oftentimes, he can’t catch them fast enough.
This is why he pauses a lot during a conversation.
It’s easy to get impatient, but try to sit still and not jump ahead and repeat your question or ask him something else. Take a deep breath, and give him a moment.
I find that counting to ten in my head helps. And while I’m counting, I picture the butterflies. I imagine their dazzling wings against a neon sky.
Try not to use idioms, or metaphors. They confuse him. It helps if you speak directly. Instead of this:
Hey buddy! How are you? Man, is it hot today! That sun is so strong, you could fry an egg out there.
It might be better to say this:
Hello, Jack. How are you? Today the sun is very hot.
Once you can see him for who he is, rather than what he has, you’ll discover that he’s actually pretty funny. He’s smart. He’s curious, and kind.
You’ll discover that talking to him is purest kind of communication you have ever known.
It’s true that when it comes to autism, I do not believe there is a cure. Instead, I believe in something else.
I believe in change.
I believe in possibility.
I believe some things are bigger than a moment.
The sun. It makes me smile.
Jeannie Prinsen
March 20, 2017 @ 10:16 am
Hi Carrie – thanks again for a beautiful post. I know what you mean about the purest communication. My boy distills all of life down to the fundamental, concrete things: “Go to food bank.” “Walk to church.” “Sleep…breakfast…school.” “Garbage truck coming.” No hidden meanings, no abstract concepts, just the basics of living.
kathy graves
March 20, 2017 @ 10:21 am
You do such a good job explaining autism, parenting, and putting the humanity into autism. My son with autism is 31, nonverbal, and an amazing individual with a consuming interest in glasses, keys, cards, and the whereabouts of his brothers. Thank you for the blog!
J.M.
March 20, 2017 @ 11:16 am
2017 budget supporting the population with autism is dismal… make a call to help your NY friends improve support for those with Autism!
Since Andrew Cuomo took office in 2011 the total state budget has increased by more than 20%, yet every program that directly serves people with autism and developmental disabilities has either remained frozen, suffered enormous cuts, or insignificant growth nowhere near keeping pace with exploding demand. This year’s budget is no different. At the same time the number of people diagnosed with autism in New York has grown at an annual rate of 10% to 15% ever since record keeping began.
Right now the New York State legislature is slogging through the complicated process of piecing together the more than $150 billion dollar state budget. Please click on the Take Action link to send messages to your legislators in Albany today and let them know that you want them to create a New York State budget that stops the criminal neglect of people with autism and development disabilities.
Please call your Assemblymember and State Senator and ask them politely to pass a budget as if people with autism and other developmental disabilities mattered: Below are some key talking points you can use. The names and contact information for your legislators based on your home address in our database should appear below:
Sen. William J. Larkin, Jr.
(518) 455-2770
Asm. Frank Skartados
(518) 455-5762
Early Intervention, Experts agree that intensive therapy and education for toddlers provides the greatest benefit at the lowest long-term cost for any intervention, but funding for Early Intervention programs has been frozen for 7 years. EI budgets have been frozen for years and professionals who work in Early Intervention haven’t had a raise since 1994! Resulting in staff shortages and waiting lists throughout the state.
· Most services and programs for the people with autism and the disabled are administered by the Office of People with Developmental Disabilities (OPWDD). Since Andrew Cuomo became Governor the OPWDD budget has been slashed by more than 30% and he wants to cut a further 2% this year.
· School districts outside New York City have had to operate with budget caps of 2% since 2012 while the number of students with autism relentlessly increases 10% or more every year. Promised additional aid from the state hasn’t appeared and every year special education budgets get squeezed.
· The State has stopped creating new housing for adults. The only adults with autism or developmental disabilities placed in housing now are those whose parents either die or cannot provide care for their adult children any longer. Stop the housing moratorium for adults with autism and developmental disabilities
· Direct care workers now make less than fast food workers. Most of the crucial workers in these frequently tough and demanding jobs are making minimum wage with no benefits. Turn over is high and quality of care suffers. The direct care workers who serve people with autism and other disabilities deserve a living wage.
Please plan on coming to the Autism Advocacy Day on April 3 in Albany and meet with your legislators on these issues and the many other concerns impacting families affected by autism and developmental disabilities.
Please share this message with friends and family and please post it to social networks
scarlett1023
March 22, 2017 @ 12:40 am
I am just amazed by your posts. You make me understand more about my Lil 11 yr old I help caretaker or prover