Light It Up Blue? No, Thank You!

Tomorrow, April 1st, Autism Speaks will kick off their 2nd annual Light It Up Blue campaign to celebrate World Autism Awareness Day. Thousands, and possibly millions, of individuals and businesses will take part in the campaign to shine the light on autism and awareness of its growing prevalence in children. Participants will get involved in a variety of ways that include wearing blue clothing, changing Facebook profile pics to the "Light It Up Blue" banner, downloading an iPhone app, and many other ways. The most obvious and likely the most popular route to shed a blue light on autism awareness will be by doing just that - displaying blue lights.

Sounds like a really noble cause, right?

Well, before you head out to the local Home Depot (or anywhere else) and plunk down a few bucks for those blue lightbulbs, let's take a look at the organization behind the Light It Up Blue campaign.

The motto for Autism Speaks is "Autism Speaks. It's time to listen." They are correct - at a rate of 1 in 110 (according to the Centers for Disease Control's average - although many research organizations will quote the rate being more frequent than that) children being diagnosed, with boys being four times as likely as girls to be diagnosed, yes, it is indeed time for someone to start listening. But for whom is Autism Speaks speaking? And to who is Autism Speaks listening? Is it those who are affected by autism? Or to those who line their seemingly very deep pockets?

Autism Speaks raises millions and millions of dollars per year - to the tune of around forty-five million dollars in 2009. But where exactly does all that money go?

Charity Navigator is a non-profit organization whose mission is to facilitate intelligent charitable contributions by providing factual, unbiased information on charities based on their financial efficiency. Charitable organizations found on Charity Navigator are evaluated based on the IRS Statistics of Income. In other words, the information found on the Charity Navigator website is based in large part on a charity's IRS reportings.

With that said, one can compare how Autism Speaks rates in comparison to other large, well-known charities. Let's start with location.

Autism Speaks has chosen some prime real estate for their New York City office, but in order to hide the fact that their main office is located on Park Avenue, they apparently rely on those of us outside of New York City to be unfamiliar with which streets intersect others. On their website, Autism Speaks lists their main office address as 1 East 33rd Street. The Charity Navigator website lists the Autism Speaks address as 2 Park Avenue. Someone obviously has their information incorrect here. Or do they? According to Google maps, guess which street intersects at 1 East 33rd Street? Park Avenue! Call it 33rd Street if you want, but that is Park Avenue, baby!

A charitable organization on Park Avenue? Really? Autism Speaks couldn't find a suitable office space in a less expensive location than one that rubs shoulders with the likes of HSBC Bank (one of the world's largest banks with assets close to 200 billion dollars) and credit card giant Chase Bank?

Let's talk revenue versus expenses. As I mentioned earlier, in 2009, Autism Speaks reported revenues of roughly forty-five million dollars. Their expenses were over forty-three million dollars. Those incredibly poor financial statistics earned them an overall rating of one out of a possible four stars by Charity Navigator for their Efficiency Rating.

Even not-for-profit organizations have to pay their employees and executives. We cannot expect people to be so giving to go out and perform a highly stressful job without compensating them, but how does Autism Speaks rate? How much does the average executive working at a non-profit organization make per year?

Since it wouldn't be fair to compare salaries alone due to factors such as an organization's location and cost of living for that location, it is better to compare the differences in relation to what percentage of an organization a particular executive's salary takes up, as does the Charity Navigator website.

To compare the salaries of the two executives listed by Autism Speaks on the Charity Navigator website to other non-profit executives, I picked three charities certainly everyone has heard of: American Red Cross, American Heart Association, and St. Jude Children's Research Hospital. Even the salary of American Heart Association's former executive director and CEO who weighed in with the highest salary (again, based on percentage of the organization's expenses) of the three organizations - a salary equal to 0.17% of the organization's yearly expenses - does not come close to the 0.93% of expenses Autism Speaks paid out to Dr. Geri Dawson, Chief Science Officer. American Red Cross paid their execs salaries equal to an average of 0.01% of their expenses and St. Jude Children's Research Hospital's highest paid listed executive made just 0.08% of their overall expenses.

If I could just go off on a tangent here (because it just wouldn't be right for me to bring up the name of someone involved in the science behind autism without mentioning vaccines), Dr. Dawson seems a bit confused, herself, on the vaccine stance that Autism Speaks has notably taken over the years. Autism Speaks has held strongly to the belief that vaccines and autism cannot possibly have any link to one another, yet, Dr. Dawson contradicts herself in an interview conducted with her in 2009.

A few snippets from the interview: She stated, "It remains scientifically plausible that the challenge to the immune system resulting from a vaccine (or other immunological challenges) could, in susceptible individuals, have adverse consequences for the developing brain."

She goes on further to say, "Evidence does not support the theory that vaccines are causing an autism epidemic. However, it is plausible that specific genetic or medical factors that are present in a small minority of individuals might lead to an adverse response to a vaccine and trigger the onset of autism symptoms."

I'm sorry, but isn't admitting that individuals who experience an adverse response to a vaccine that triggers the onset of autism symptoms very similar to saying that, had those individuals not received vaccines, they would not have had the adverse response that ultimately triggered the autism symptoms?

So where else does all that money go that Autism Speaks raises every year? It does not go to individuals or families affected by autism and they have no problem admitting to that fact. In their own words, Autism Speaks states "Autism Speaks does not award grants to individuals or fund an individual or family for participation in personal programs."

So again, I ask, to whom is Autism Speaks listening? It sure isn't my family. If they were listening to me, they would practice some common sense frugality by moving their offices to somewhere with less notoriety than an address that probably 90% of the world's population has heard of. If they were listening to me, they would pay their executives less money and get someone in there who can work out a better ratio of revenue to expenses. But most importantly, if they were listening to me, they would put families first. If one of their main objectives is to bring awareness to autism, why not expand that awareness to the devastating financial effects autism has on families and assist them in a more direct financial way?

As far as Autism Speaks speaking, they certainly do not speak for my family either as they have done nothing for my son. Sure, they bring awareness to autism but at a very obviously high pricetag. And who needs awareness at a price? My family is very aware of autism on a daily basis....for FREE!