I know there's always a lot of controversy around Autism Speaks and I'm not always a fan of everything that they do, but I will say this. I have no issues with AS with the way they portray autism. Others in the Asperger’s community feel that AS doesn't represent them, and maybe it doesn't But it does seem to represent those with severe debilitating autism. My son has SEVERE autism... (you can read the whole blog post HERE)
Friday, March 30, 2012
Happy Autism Awareness Month -- Just Remember Blue's Not The Only Color In Town
Ok, let me say straight away that this is not an Anti-Autism Speaks post. I wrote this about Autism Speaks in an old blog post....
And ol’ Autism Daddy has done a lot of fundraising in the past for good ol’ Autism Speaks. We participated in 3-4 Autism Walk events over the years and we had our own crew “Kyle’s Krew” and we all wore our team shirts, etc. And then I also ran 3 NYC marathons as part of the Autism Speaks team. Between the walk events & marathons the wife and I have probably helped raise over $40,000 for Autism Speaks. And the Walk events are great as a show of solidarity & support from your friends & family. We’ve got photo albums filled with pics of “Kyle’s Crew”, some years 40+ people strong.
And Autism Speaks does some great work in my opinion. They have helped put autism to the forefront and helped to create a “movement”. They took the idea from the “pink for breast cancer” playbook and started the “wear blue for autism awareness” and I think it is GREAT. It is a great way for people who are not in the autism world to feel like they are getting involved and showing some compassion.
So why did I call this post blue’s not the only color in town?
Because in 2010 I ran the Boston Marathon for the "Doug Flutie Jr. Foundation For Autism" which is a New England based organization started by formal NFL QB Doug Flutie who's son has asd. And I looked into how they spend their money. And for them it is mostly about giving out small grants to even smaller organizations. An asd swim program in MA, a Camp counselor-in-training program for young adults with Aspergers in NJ, a social skills program in NY are just a small example of the types of things that the Flutie Foundation gave grants to in 2011.
After learning about the Flutie Foundation I like how they help asd families now, on a small scale. Autism Speaks stands to make a windfall of donations from this blue campaign. But after years of raising money for AS the wife and I realized that they aren’t really helping us or Kyle. The vast majority of their money goes into autism research which will help future generations and hopefully find a cure, but it didn’t seem like they were doing much to help the kids/ adults that are out there right now… like my son Kyle.
My wife actually called them a few years ago, told them about Kyle, told them where we live and asked if there was anything in our area that they were funding that can help Kyle. And the answer was… not really… They have a lot of outreach initiatives and could give tool kits, etc, but there wasn’t much else. They seem to have gotten a bit better of late. If you check out their website there is more outreach & support for helping kids/ adults with autism, but the VAST MAJORITY of their resources go into research.
Now we need Autism Speaks for research. I personally wish they would put more research dollars behind environmental causes, but the research they are doing is important and vital. And the pressure that they put on our lawmakers to pass insurance reform is HUGE. We need them fighting the BIG fights. And we need them around just for general Autism Awareness for the masses.
But as this Autism Awareness month gets started I want to shine a light on the smaller local charities that are helping the asd kids/ adults that are out there now. All charities are hurting but the smaller ones more so that the big boys like Autism Speaks.
If you read this blog and my Autism Daddy Facebook Page often you’ll read about Kyle participating in special needs music therapy & swim therapy. He also goes to a special needs “kids in motion” class. These therapies and classes are run by small organizations who are in need of your donations. Without giving up exactly where I live (y’all know that my anonymity is precious to me) I’ll just say that the swim therapy & kids in motion classes are held at our local YWCA.
And if you’ve been reading my pages for a while, you’ll know that Kyle got an autism service dog for FREE from an amazing organization that I talk about HERE.
It’s these kinds of organizations that need our support and it’s these kinds of organizations that I will be fundraising for in the future. These organizations might not be looking for a cure, or they might not seem like they are filling a HUGE need in the asd world, but they are giving our kids some fun activities, and parents a nice safe place to hang with other special needs parents… and in our world that is HUGE!
So, when people wear BLUE on Autism Awareness Day don’t tell them why you do or don’t like Autism Speaks, just thank them for their support and if you sense that they are feeling charitable, maybe push them to your favorite local autism charity that’s helping your kid.
Autism Speaks will always be there getting the big bucks, but let’s try to spread some of those small bucks around.
If you’re interested in researching your favorite charity, all non-profit organizations have to fill out a 990 tax forms and they have to make these documents public. And they all should be buried somewhere on their website. Or you can register at the site Guidestar.org you can review all non-profits and see how they are doing financially and where all the money is going.
That’s all I got. In the comments below please post a local autism (or special needs) organization that is helping your child now and let’s spread the word.
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