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.

AWE-tism Awareness

Yesterday was World Autism Awareness Day, and the Autism community was all ready. We had blue lightbulbs, we had blue hair, we had videos, we were ready.

I never left my house. All day. I spent the morning finishing a project that I had started over the weekend and just didn't have the energy to take these 3 kids somewhere since they are all home for spring break. Big Brother went outside to play for a while and the twins stayed inside with me. We didn't do much (other than fight), but we did it in blue clothes. We did it with my blue hair. And we watched my video (the project I was working to finish).





You see, Autism Awareness Day (for now, at least) only seems to affect those who see autism every day. The families and the professionals who work with these children. No one else really seems to notice that the incidence rates are going up every time you turn around. Realize that in 1985 the rates were 1 in 2000 children......today, 1 in 88 (1 in 54 boys, 1 in 252 girls) will be diagnosed on the spectrum by the time our children are 8 years old. This is more than children to be diagnosed with diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and down syndrome -- COMBINED. But if it doesn't affect someone, they may pay some tribute (wear blue when reminded, for example), but then allow it to disappear unnoticed. And I know that's true.....because that was me a few years ago.



World Autism Awareness Day, 2012 may now be over, but it's still my job as a parent of children on the spectrum to keep pushing for awareness. April is still happening and I will keep pushing hard throughout the month, but when April is over, Autism doesn't simply disappear. I hope that those who don't see Autism every day will start taking the initiative and will continue to ask questions and will keep a watchful eye on their own children to catch signs early.

Because until we find the cause, the rates will continue on the steep incline we've been seeing these last few years.