Early Intervention and our National Autism Agenda

The Centers for Disease Control and Prevention (CDC)recently updated its estimate of autism prevalence in children in the United States to 1 in 88 (1 in 54 boys and 1 in 252 girls).  This is a 78% increase from 2002.  These estimates are based upon a review of evaluations of children 8 years of age from multiple sources in 14 states in 2008.

Why such a dramatic increase? We certainly have better diagnoses, and we are diagnosing at even a younger age every year. The American Academy of Pediatric recommends that all children be screened at their 18- and 24-month check up.

We now have a broader scale to use to diagnose autism.  Since autism is a spectrum disorder, we have children diagnosed with milder forms, such as Asperger syndrome. These individuals are highly intelligent, but they may have social deficits. On the opposite end of the spectrum, we have children with severe autism who may have significant social and intellectual disabilities.

Autism is at the forefront of public awareness because of the numerous newspaper and magazine articles, television shows, and the advocacy efforts of Autism Speaks and the Autism Society of America. The good news is that we are identifying a greater portion of children before age 3.  This is significant because early identification leads to early intervention, and we know that with early intervention, children have better outcomes and long term success.  However, with more children being identified, more programs are needed, and this requires more funding.

I was fortunate in that my son Ryan was diagnosed on the spectrum when he was just turning 2 years of age. Keep in mind that this was sixteen years ago, a time when we thought children with autism did not have language, social skills, or attachment to parent.  I knew that he had delays in his expressive language but did not consider the autism diagnosis because he did have social skills. He was also very attached to me, and he did make eye contact.

My brother, Joseph Barber, MD, a pediatric neurologist, was the first to diagnosis him with being on the spectrum.  I remember saying, “but he talks, has excellent receptive skills, and is very loving.”  Joe suggested – and I agreed – that it would be best to get him early intervention services and see how he progressed.  I firmly believe that he is where he is today because he had intensive Applied Behavior Analysis services beginning at such a young age.  It was hard work for Ryan, myself and all involved in this program, but I attribute his success to this.

So what do these statistics mean to all of us?

First and foremost, many, many families are experiencing the challenges of autism.  The children need services, and the families need support.    This comes at a time when we hear that there must be cutbacks in funding of these social services programs that they need.  We can help these families by contacting our state and national legislators and telling them why funding must be maintained if not increased.  We need to be proactive and consider how we can personally support our friends and family with autism.  We need as a nation to establish an autism agenda if the autism epidemic is to be solved.

I am interested in hearing about your experiences.  What do you believe should be on our national autism agenda? 

For readers in northwestern Pennsylvania, I would like to let you know about a free program that will be held at the Barber National Institute next Thursday, April 26 from 5-6:30 p.m. about portable communication devices in the home and school.  Our faculty will be talking about the iPad, iTouch and other technology, the criteria for choosing apps, etc.  Just make your reservation by calling us at 814-480-6831.

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2 Responses to Early Intervention and our National Autism Agenda

  1. Cyn says:

    My son was officially diagnosed when he was 3 but we were on a wait list for one year for a full developmental assessment from the age of 2. Without the actual diagnosis we were left scrambling to access services to help him but soon realized that much more help would be available once were we had the diagnosis. I find it amazing how much he has changed in 2 years with the help of specialists.

    When you wrote about your experience with your son Ryan re: diagnosis I felt like was having deja-vue. Since a baby our son was very social, happy, loving and high receptive language skills ( but non-verbal) so we would flip back and forth and wonder if everything would change if he would talk. Unfortunately other signs began like repetitiveness, not playing with toys the way one should and preferring toys to children etc that we knew something was not right.

    I think early intervention and the support in the school system is very important but I also think that families need a lot of support or respite. Why is this important? I have attended a lot of parent training programs and so many times I have heard that its important to empower parents with the skills to teach their children at home because we know our children the best. This then benefits the child when the enter the community and are better prepared for the challenges of school so they do not need as much support and services. We love our children and do a lot for them but who will take care of us when we need to get a “re-charge”?

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