I’m Not Scared of Autism. I’m Scared that YOU Are.

by Jo on March 27, 2014

The CDC just announced the latest autism statistics this morning.

1:68 children are diagnosed with autism.

To understand the numbers, you have to understand the many variables at play. First, the data was collected in 2010 using a survey of children residing in 11 states. The previous number, 1:88, was based on a 2008 survey. The new statistics show a 30% increase in autism over a span of two years, though, depending on who you ask, the reasons for that increase may vary, such as more efficient diagnoses thanks to awareness campaigns and increasingly better trained physicians.

You’re going to see these numbers used in a variety of ways.

They will be bolded, highlighted, underscored and italicized as they SCREAM for you to be MORE AWARE! MORE AFRAID! MORE MAD!

Don’t get me wrong. I’m not saying these numbers don’t matter. They do. They represent lives affected by autism, though I know that even these latest statistics don’t truly reflect what I see around me, each and every day.¬† Autism is everywhere, especially for those of us who know the signs.

But it’s not autism that scares me. What scares me is that autism scares other people. The idea that someone may look at my child and feel fear makes the hair on my neck stand straight up.

Educators who look at my child and see someone who is broken, someone who should be fixed at all costs because he’s not good enough the way he is and his autism must be stopped before it infiltrates society; THAT’s what scares me.

Doctors who resign themselves to giving half-assed recommendations and solutions because they see the word “autism” on my son’s medical chart and use it as a free pass to stop trying to help him in other areas of his life; THAT’s what scares me.

Parents who use the R-word in front of their children to describe anything or anyone that’s worthless, so when they see my child who cannot talk or walk or run or play or interact¬† or learn the same way they can, he is viewed as an unworthy playmate by kids and a drain on society by adults; THAT’s what scares me.

Police officers who interact with autistic individuals and assume they are criminals who are running away or ignoring them and use violence as a means to subdue them; THAT’s what scares me.

Caregivers who feel alone, isolated, unsupported, ridiculed, marginalized; THAT’s what scares me.

School districts who fight parents tooth and nail, determined not to provide proven therapies for students with autism while paying obscene attorneys fees in an attempt to intimidate moms and dads who believe in their child’s right to a free and appropriate education, moms and dads who look at their child and see potential and promise, and just wish the professionals would too; THAT’s what scares me.

A country who clearly continues to see a rise in numbers of individuals diagnosed with autism regardless of why that is, but lacks even the most basic supports for these individuals, especially as they make their way into adulthood; THAT’s what scares me.

Did you know, that with the right supports in place, the right interventions and accommodations, these 1:68 individuals can live a wonderful, productive, happy, life? The kind of life they deserve?

Autism is here. It’s been here for a long time and, in the case of my son, it’s here to stay. It doesn’t scare me and it’s not a bad word in my house. It’s a part of our lives because it’s a part of my son, a son I love without limits, and a son I want to see continue to exceed the expectations of the bozos who told us not to hold out too much hope a decade ago. It’s a part of our lives because it’s a part of our society and society needs to put on its big girl panties and start accepting, accommodating, and planning for the future of these 1:68.

Because the only thing that truly scares me

is if society sees my kid

and looks the other way.

 

 

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{ 7 comments… read them below or add one }

Carlee March 27, 2014 at 6:56 pm

The increased number of kids with autism is in no small part a result of BROADENING the criteria for what constitutes an autism diagnosis. Many, many kids who 10 or 20 or 40+ years ago who would have been classified as anything along the spectrum from “sort of quirky” to having a “significant intellectual disability plus lots of sensory issues” are now classified as having autism. It isn’t good, it isn’t bad, it just kind of is.

I’d also suspect that having an official autism diagnosis would make it somewhat easier to get a school to provide accommodations or an insurance company to cover desperately needed therapies they otherwise wouldn’t. The insurance changes that came in with Obamacare have been, quite literally, a godsend for nephew who is on the spectrum — my sister’s insurance now covers 35 hours of ABA and theraplay per week, with a co-pay of $0, plus feeding therapy, plus a 1:1 “helper” so K can attend robotics camp (that my sis used to pay $35/hr out of pocket for), etc.

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Pam March 27, 2014 at 9:13 pm

In reference to “now covers 35 hours of ABA and theraplay per week with a co-pay of $0″ makes me want to ask what state that is in, because it certainly is not Tennessee!!!

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Ryousuke September 27, 2014 at 2:37 am

Alright, I’m crying. That post was so good. And I’m glad I read it today. I think half the pelrobm with people not achieving their dreams, it that they cannot even define them. They cannot see beyond the box, the walls, the limitations they have created for themselves. Anything, anything is possible. Takes believing in ourselves and putting trust in God, or something greater than us. When we release the control; it will happen. Sometimes we need not worry how, because God knows a better, quicker way than we do. Totally inspired, my friend!Cari not crying, not crying, I am NOT crying recently posted..

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shorn March 27, 2014 at 8:36 pm

Carlee for every story like your nephew’s I hear ten where the district goes to the mat to offer the least possible accommodation and then utterly fail to actually provide what they promise.

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Eileen Riley Hall March 28, 2014 at 2:57 pm

Amazing! Awesome! True! True! True! Thank you so much for this!

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Jessica March 29, 2014 at 12:19 am

Oh this hits me so hard Jo because it’s so true. It’s not about the numbers or even about our kids, it’s about how society decides to treat them and what we collectively do to make life work for our kids.

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Terry April 7, 2014 at 1:28 am

Thank you so much for this post!! We recently came to the realization that this actually applies to some of our family members who we thought were so understanding and sympathetic. I’ve been sharing and re-sharing. It really hit home!

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