My Family's Experience with Autism: Steadily Climbing........

Thursday, March 21, 2013

Steadily Climbing........

My mind has been reeling for the last 24 hours or so.....since the latest numbers have come out regarding the prevalence of Autism in this country. Now they are saying that one in FIFTY school-age children are on the spectrum. Let's look at this another way.

In 1995, the rate was 1 in 500.
In 2001, it had increased to 1 in 250.
In 2004, it had risen again to 1 in 166.
In 2007, there was yet ANOTHER increase to 1 in 150.
In 2009 (when our journey began), it was 1 in 110.
In 2012, the shocking news was announced that it was now 1 in 88.
Yesterday (2013), the newest announcement is that 1 in 50 school-age children are on the spectrum.

There are a few things about this latest study that has me doubting these numbers (at least the ones that were just announced). The survey that this statistic is based had a very poor response rate. It was also answered by parents as opposed to medical professionals. I'm not saying that parent reports cannot be trusted. However, it is more likely that parents of children on the spectrum would respond to this type of survey because (1) they want answers and (2) they want to share information, especially if they think that it may (in time) help their own children. In other words, if you were to call 100 parents to ask them questions about Autism and 90 said they couldn't talk to you, the remaining 10 are more likely to have children on the spectrum (or suspected as being on the spectrum) compared to the remaining 90 who wouldn't take the time.

There are flaws in the other direction about the survey that estimated 1 in 88 children were being diagnosed with an Autism Spectrum Disorder. In that study, they only surveyed a small portion of the country (14 states). There were so many areas that were missed and not accounted for in those results.

I can honestly say that I don't believe that the true number is 1 in 50. But I also believe that the 1 in 88 is an underestimate. The true answer is probably somewhere between the two. Maybe 1 in 75 (my own blind guess -- please don't assume there is any validation behind this number), which is still appalling.

But there is one thing that cannot be denied, with several consequences. The numbers are going up, not down. The need for services is growing, not shrinking. These children will grow up and become adults with an Autism Spectrum Disorder diagnosis who may require additional services to allow them to live independently or, if that isn't possible, for them to be productive members of society and to be cared for. They can't be swept under the table. They need their voices to be heard, even if they are unable to use their voices directly. We cannot ignore this problem. And we can't allow others to ignore the problem. We need to speak up and out for our kids. We need to be sure that as these children grow, they will have the supports they need so that they can contribute in whatever way suits them.

These are individuals. They are people. And they have a stumbling block to overcome.

We need to be sure that they are given all of the tools they need so that they can succeed.

No comments:

Post a Comment

A Little Bit About Me and My Family

Every once in a while, something happens to a family that seems to change everything, whether that change is positive, negative, or in an uncertain direction. One such thing happened to us in March 2009, when we were informed our 26 month old twins (girl/boy) were BOTH on the autism spectrum. Their older brother (nearly 4 at the time) had always been ahead of the curve for most developmental milestones, so we had never really considered that some of the delays the twins were having had anything to do with autism. Well, we were wrong. Since then we have been learning about learning techniques and doing everything we can to make sure they get any and all help they need so that they can live normal lives. This blog chronicles that journey.

The Autism Pizza

I don't know where this came from originally, but I found it on a post on Circle of Moms. It's a good explanation of how things line up on the spectrum.

1. The Crust: Lack of Social Interaction (poor eye contact, not sharing interests with you, no pointing/gesturing)

2. The Sauce: Impaired Communication (possibly no speech, poor conversation skills, repetitive language, echolalia, no make-believe play)

3. The Cheese: Stereotypical Activities & Interests (extreme routine, strong interest in certain things, stimming [flapping, atypical play, etc.] -- like spinning wheels, lining toys up, stacking, etc.)

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Aspergers's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified)