I’d like you to meet my nephew, Jessie*. He loves planes and waterskiing and the Yankees. He goes to sleep-away camp in the summer and skis fearlessly in winter. The rest of the year he works hard to keep up with the other kids in his fourth grade class. He’s fast with a hug, has the sweetest laugh, and just like any pre-teen, he gets a kick out of pulling a fast one over on his mom and dad.
Ever since the age of 18 months, he’s been the hardest working kid I’ve ever met — logging 40-50 hour work-weeks in speech, occupational and all other types of therapies, in an effort to better navigate the world with autism.
And what he wants more than anything in the world is something simple — an invitation to a birthday party or a phone call asking, “Can Jessie come over to hang out?”
But Jessie’s phone doesn’t ever ring.
Jessie is one of the growing numbers of children around the world with autism. When I say ‘growing numbers’ I mean drastically growing numbers, most markedly here in the United States.
Last week the Centers for Disease Control and Prevention released new statistics for the incidence of autism in this country: now, 1 in 88 children in the U.S. are being diagnosed with autism. It’s also being diagnosed in 1 in every 54 boys.
According to Autism Speaks, that is nearly a doubling of the prevalence since the CDC started tracking these numbers. It’s a 78 percent increase over the last five years. More children have autism than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome, combined. It’s something the advocacy group is correct in saying is an epidemic.
The impact of autism is staggering—and it will only continue to increasingly burden the country and affected families, unless more attention is paid. Consider this:
- New research from Autism Speaks says that autism costs the nation $126 billion per year.
- Families with a child on the autism spectrum are estimated to incur costs between $1.3 million and $2.4 million over a lifetime.
- Many insurance companies deny reimbursement for services. The increasing numbers will hit families already struggling to meet health care costs even harder.
- Employers will need to know how to commit to successfully employing the growing numbers of adults with autism entering the workforce, and how to respond to families with children on the spectrum.
- School systems mandated to educate students of varying abilities will need to increase their spending to deliver individualized, quality-driven plans to meet special education needs of more and more students with autism.
- Communities will need to better understand how individuals with autism may integrate and react within the fabric of social interaction, by improving the training of their public service employees.
Just as important, you and I need to better understand what autism is, how individuals with autism navigate the world, how to make the world a more compassionate place—and we need to teach our children how to do so too.
Which brings me back to Jessie.
Jessie has what’s commonly referred to as “high functioning autism.” If you didn’t know Jessie, at first glance across a room you might not realize he has the diagnosis. He’s verbal, and mostly doesn’t exhibit some of those typical behaviors people imagine someone with autism to have.
But sometimes it’s harder for him to read social cues and process information the way most of us take for granted. Sometimes he gets hooked on a thought and has trouble letting go. Sometimes, his enthusiasm gets the better of him and he gets carried away.
When he was younger, kids his age noticed these subtle differences less often. But as he’s gotten to an age where peer influence matters more, his classmates have taken more notice. There are fewer times he’s included in recess play, without asking to be included himself. He gets called out more often by teachers for behavior that isn’t ‘typical.’
Two months ago, Jessie actually got a rare invitation to a birthday party. A group of boys were headed to a sporting event at the arena in Bridgeport, and they were going on a party bus with the birthday boy’s parents. He couldn’t have been more excited — what 10 year old boy wouldn’t love a night out like that with friends?
The night before the party, the dad of the birthday boy called Jessie’s mom.
“Look, my wife and I talked about it, and we think it’s not a good idea for Jessie to come to the party. I just don’t want to have to worry about how he’s going to behave. I heard he takes thing personally and I just don’t know how he’ll take things other kids say to him, I just want to enjoy my son’s birthday and can’t be responsible for that. I’m just trying to protect your son.”
It didn’t matter that Jessie’s parents had offered to buy an extra ticket for the night, so they could be there to help just in case the party got too overwhelming for him. It didn’t matter that Jessie had been living-breathing-craving the birthday party. It didn’t matter the example of bullying this dad was teaching the rest of the invited boys.
It’s not a solitary event. Just a couple of weeks later another classmate told all the boys about his upcoming birthday party. They were all invited, he said, even Jessie. “Sure, Jessie. My mom e-mailed your mom. And we sent invites in the mail. Check your mailbox.” Day after day, Jessie checked — no invite. One Friday night right before the party, the birthday boy and a friend sleeping over called Jessie on iPhone Facetime, giggling and laughing, to say, “Oh yeah, Jessie. You are invited.”
Perhaps Jessie didn’t hear the mocking tone that crept into their voices. But that invite never came.
What the 1-in-88 statistic means is that there are more Jessies out there than ever. More kids hoping for the invites that never come. More parents wishing for an extended hand of understanding and compassion.
Unless you and I and everyone sits up and learns what this really means. Unless we learn that bullying and ignorance have no place in the 1-in-88. That what we desperately need is more research funding, public accommodations, compassion, understanding, knowledge and two simple requests:
For Jessie’s parents: “What do I need to know to help my child be a friend to Jessie?”
And for Jessie: “Would you like to come over and play?”
On March 30, an important movie was released on limited screens and will hopefully be coming to a theater near you. “Bully” explores the problem of bullying in this country and efforts to stop it. It relates to Jessie’s story, so I wanted to mention it, but I’ll write more about the movie and a local effort to address bullying in next week’s Patch In column. In the meantime, visit thebullyproject.com to learn more and find out where the movie is playing near you.
*Jessie is a pseudonym, but he’s a very real, amazing boy, who lives in Fairfield County with his immediate family and an extended family that celebrates him and loves him beyond words.