not just numbers, people

I’m sure by now you’ve seen the numbers. If not, here they are:

Data & Statistics

Prevalence

  • About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
  • ASDs are reported to occur in all racial, ethinic, and socioeconomic groups. [Read article]
  • ASDs are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). [Read article]
  • Studies in Asia, Europe, and North America have identified individuals with an ASD with an average prevalence of about 1%. A recent study in South Korea reported a prevalence of 2.6%. [Data table Adobe PDF file]
  • About 1 in 6 children in the U.S. had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.  [Read article]

*Source: http://www.cdc.gov/ncbddd/autism/data.html

1 in 88

1 in 54

1 in 252

1%

2.6%

1 in 6

Yes, those are staggering numbers.

They are also old.

Yup, this “brand, spanking new data” is from 2008. If we had today’s numbers, they’d likely be even higher. I wouldn’t be surprised to find them somewhere around the 1 in 38 that the South Korean study found in May of 2011.

If you’d like to read about the numbers, there are plenty of places to do it.

CNN: CDC: U.S. kids with autism up 78% in past decade

Fox News: 1 in 88 US kids have autism, CDC reports

Newsday: CDC: 1 in 88 kids have some form of autism

Huffington Post: Autism Prevalence: Study Shows 1 In 88 Kids Has The Condition

Reuters: New high in U.S. autism rates inspires renewed debate

ABC News: Autism Diagnosis: 1 in 88 Children

USA Today: CDC: Autism is more common than previously thought

People will ask me today why I think the numbers are so high. They will ask if I think it’s because of better diagnoses. I will say yes. They will ask if I think it’s because of broader diagnoses. I will say yes. They will ask if I think it’s because of awareness efforts. I will say yes. They will ask if I think it’s because of something environmental. I will say yes. They will ask if there’s one thing to which I can attribute the change. I will say no.

“Autism is one word,” I will say as I have so many times before, “but there is no one autism.” 

Last night, I crawled into bed and grabbed my laptop. I couldn’t bring myself to read the stories. I sure as hell couldn’t bring myself to dive into the blogosphere.

I have no interest in the wagging fingers today. I just don’t have the stomach for righteous indignation nor accusation. I want no part of shock and awe.

What I want is a discussion of what the hell we’re going to do now.

But I’ve got some things to do. You see, I have a meeting this morning. I’m going into school to talk to Brooke’s team leader. We’re going to hash out some final details in her twenty-six page long IEP. We’re going to make sure it’s reflective of exactly where she is now and exactly what tools she needs to succeed throughout the year. We’re going to look over the portfolio that she’s put together for the MCAS-Alt. We’re going to do the every-day work that it takes to support my girl.

Last night when I crawled into bed, I posted a picture.

First on Facebook …

This is the face of one in eighty-eight.

Like ·  · Share · 9 hours ago ·

… and then on Twitter:

@autismspeaks not just numbers, PEOPLE. This is the face of #1in88.. http://pic.twitter.com/ece0jFcy

-
There’s going to be a lot of talk about the data today.
.
And it matters.
 .
But what matters more is that for every number – for every data point and every statistic – there is a face. And behind that face a life. And behind that life the lives of those who love them.
 .
Not just numbers, PEOPLE.
*
Ed note: I will happily retweet photos this morning and later tonight. Just tweet the following: “@diaryofamom @autismspeaks Not just numbers, PEOPLE. This is the face of #1in88” with your photo. 

26 thoughts on “not just numbers, people

  1. try 3 out of 3 with a serious LD in my house….My husbands first cousin married my sister and their child is autistic too. I think our situation is gene issues here. NONE of the other 9 have any LD’s we have discovered yet but wait …only 5 are school age so….

  2. But what matters more is that for every number – for every data point and every statistic – there is a face. And behind that face a life. And behind that life the lives of those who love them.
    .
    Not just numbers, PEOPLE.

    …and that says it all!

    Love you,
    Mom

  3. I posted this last night: National rate 1 in 54 boys, personal rate 2 in 2 boys.

    None of this is new. Those of us with kids with autism have known these numbers are coming. I’m avoiding the articles because people are trying to blame us parents for this increase, but I would give anything for my sons to not face a lifetime of struggles.

    My sons are in high school and at the head of the wave of kids who will need services as adults and I’m terrified because they don’t exist in any meaningful way. I pray these numbers sink in and we can get the rest of the country to see that these kids have a lot to offer.

  4. I know the numbers but they shock me every time I read them. This morning I am stumped . . . what do we do about them? . . . what is my next move? . . . how do I make a meaningful difference? . . . how do we join together and force a change? . . . what is the change we need? . . . (note that these are not questions addressed to you . . . and I am only including them because they are screaming out of me today).

  5. And let us not forget that many of those faces, the families, are of older children and adults, too. I don’t care about they whys so much as the what-do-we-dos. What do we do to help each and every one of those individuals grow and learn and meet their potential? How do we support the older youth and adults to be independent in whatever ways they can, to express themselves fully? To be fulfilled?

  6. I read the 1 in 88 the day before it was announced and told my family, “must be old numbers”. Sigh. It’s hard. We have to look forward to tomorrow, while dealing with today, and looking to the past to figure out why. We have to help the 1 in 88 each day. We have to love them and help them. But we have to figure out why this is happening so it doesn’t turn into 1 in 87, 1 in 56, 1 in 12. I think we have to fight for our kids AND those yet to come. It’s an exhausting job. I am exhausted most days with just my two. That’s right, in our home it’s 2 in 2.

  7. I also want people to see my son as a PERSON. Trust me, he is so much more than a number…a statistic. He is hard-working, energetic, fun-loving, a brother, a son, and so.much.more.

    There is no one Autism…I so agree.

  8. Please, Please, Please, write a book for all the parents, and grand parents, and relatives, and friends who need to read your words. You are real and you provide a focus for all of us. Most of all however, you give heart to all touched by this “condition”. So again, I ask you to PLEASE write a book.
    Love,
    Dad

  9. I could not read the articles yesterday let alone the comments. Even our local papers comment section was full of “working the system to get my tax dollars”. I stopped after reading just 7 comments and went outside to play with my 1 in 88. Who, by the way, that had a major milestone yesterday when she said “Go away Mom” as I tried to change her diaper! 3 words people, this is a big deal!

    • I love it Brandi! Only autism parents rejoice when our kiddos learn to tell us to get lost! I remember when my son figured out he could “fake cry”; I rejoiced because he was being socially manipulative! :)

  10. Pingback: 1 in 88…not just numbers, PEOPLE « Footprints in Time

  11. Pingback: Faces, not data « This Side of Typical

  12. Got 2 blue hair extensions for Autism Awareness month. My kid IS way more than a number. Bit the numbers are getting kinda scary.

  13. The reason I read your blog is for level intelligent tell it like it is community that you have created. I used to read others,but bitter hopelessness that was spread around was way to scary. I chose a hopeful outlook for my girl. She carries this wonderful,beautiful energy that nothing can stop. We had a memorial service for my Father-in-law on Tuesday,and I worried she would have a melt down. She did’nt quite understand what was happening and this was her first one. She’s eight. When service had been going for a while,she begun to tear up,so I pointed out a round window where the sky was visible. I told her that was the window to heaven where Papa was with the angels. My brave girl would look up at that window whenever she would start to lose it. I was so damn proud of her! Hope,Love,and pure Guardian angel miracle!

  14. Pingback: This is my 1 in 88 | that cynking feeling

  15. I posted a photo of my 1 in 5 daughter (the younger sib of older sib with autism statistic); and my lovely friend posted this comment which I think holds true for Brooke too:

    “And hello to you Ms Beautiful! You are equally amazing with all the hard work you are doing to fit in to the world the rest of us have created to fit our needs without considering you and many like you one teeny weeny bit. xox. I promise to continue to work hard to make room for you and and your brother and my nephews and everyone else like you.

    Thank god for wonderful friends. xo

  16. Excellent post! I have mixed feelings about these numbers. I am sure it’s higher too – I am sure there are a lot children, still undiagnosed floating around in our broken public school system. And I am certain there are many adults who have lived their lives – undiagnosed. We just don’t know.

    I love that you are doing this. These are real children, real individuals and they are so much more than a statistic. We need to a put face and name to it.

    This post inspired me to start a photo meme/contest on my blog “Hi. My name is _____. I am #1in88″ Would love for you and anyone else to join in and share their photos. This is the link –

    http://www.autismwonderland.com/2012/03/my-name-is-and-i-am-1in88.html

    Lisa

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