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Autism Awareness Month, Autism Speaks & Sesame Street

Posted by David on April 2, 2014 in Autism |

So today was the seventh annual World Autism Awareness Day. Said who? Oh, that would be according to Autism Speaks, the most famous of the many Autism-related non-profit organizations. And while one might say that Autism Speaks has certainly done a fine job of raising the overall awareness of Autism during this time, I have to think that the fact that the rate of kids being diagnosed on the spectrum has shot up to 1 in 66 has had as much to do with the public becoming more aware than a single marketing campaign. And yes, Light It Up Blue is indeed a marketing campaign for Autism Speaks (they even have a trademark on it).

In many ways Autism Speaks has become a bit like the Susan G. Komen Foundation of the Autism world. It’s a very controversial organization within the Autism community. For while it has succeeded in generating massive amounts of PR and awareness for itself (and the cause), there are many who object to its focus on directing the bulk of the money raised towards genetic-based research – and lining the pockets of its execs. Autism Speaks has successfully highjacked the color blue and tied it to its cause – just as Susan G. Komen has done with pink and breast cancer.

Is this all bad? No, it’s not all bad. As I said, both organizations have done a tremendous job of raising awareness for their causes – and as a PR and marketing professional, I can vouch for the value of visibility and awareness. It takes a lot of work to cut through the noise that makes up our mass media – increasingly so now with so many media outlets and social media platforms.

But what I personally object to is when I see the many many fundraisers out there that are driven by – or for – Autism Speaks and knowing that this money could be better served going to other causes that will directly help those impacted by Autism TODAY. Yes, it is important that we invest time and resources to try to determine why there has been a surge in Autism over the past 10-20 years, but the fact is there are millions – MILLIONS – of kids and families who are struggling today with finding appropriate therapies, instruction and support to get through this tremendous challenge.

And while the official CDC statistics state that the number is now 1 in 66, many of us parents in the community are quietly speculating that the figure is even higher. Don’t be surprised if in another 2-3 years we see yet another 30 percent increase in kids diagnosed on the spectrum. This is an issue that is hitting us as a society fast and its hitting now.

Now is the time to put the massive resources of our Federal Government behind a coordinated effort to hit the Autism issue head on. There isn’t time to wait for the millions of families who need access to speech, occupational and ABA therapies for their children as they race to address developmental delays.

I’m calling on President Obama to create a Presidential Commission on Autism – this would be a legacy he can provide that would rival Obamacare. The charter of the commission needs to be twofold 1) determine what is behind the rise in Autism in this country the past 20 years. This means examining ALL potential environmental factors including yes, vaccines. The US has by far the most aggressive childhood vaccination schedule of all developed countries and also have the highest rate of Autism in the world. Does correlation mean causation? No – not necessarily. But we need to be clear-eyed when we try to figure out why and how there can be millions (yes millions) of stories from parents who talk about otherwise normally developing babies and toddlers who somehow, for some reason, regressed dramatically – often after a series of vaccinations.

2) create a plan that provides financial support for families who need additional therapy and assistance for their children – and also provides even more training and incentives for professionals to move into this area to fill the void that now exists between supply and demand for services. And this gap will only get wider as the numbers of kids diagnosed on the spectrum increases. What is rapidly happening is that those families/parents who have financial means (either through strong insurance policies with their employers like Microsoft of Amazon or their own finances) are those who are securing the most services for their kids. Low-income and those with poor (or no) insurance are stuck – and that is just heart breaking.

So I’m not sure exactly what it takes to create momentum and action required to create this kind of Presidential Commission but it is one of my new dreams and goals for the future.

But back to Autism Speaks, Autism Awareness Month and Light It Up Blue Day. There was one very positive development that I wanted to note today. Autism Speaks and Sesame Street announced hat they were joining forces to develop a new Autism initiative. According to Autism Speaks, “The initiative, “See Amazing in All Children,” will aim to increase understanding, reduce stigma, and demonstrate the commonalities that children with autism spectrum disorder (ASD) share with all children. The Workshop will also develop tools and resources for families of children with ASD to help them reduce the stress of everyday routines, such as brushing teeth, getting dressed, trying a new food, or playing with other children.”

I applaud both Autism Speaks and Sesame Street for this initiative as it is an example of something that will help today and the near future – and I look forward to watching it develop.

In the meantime, if you do want to help provide support to worthy organizations that provide support to those impacted by Autism, I urge you to check out Washington Autism Alliance & Advocacy or TACA (Talk About Curing Autism), to name but two groups working hard to help families.

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