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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….
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)
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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http://www.autismofimperial.com Imperial Valley, CA.
Autism Support of Imperial County (ASIC or AIC) is a local, non-profit organization providing information and training to parents and professionals on autism. ASIC provides a support group for parents and family members of individuals with autism.
Hi.. I am an autism mommy… i have about 22 years of Autism experience on you… my daughter is 32, and we have had some wonderful up's and some not so wonderful down's… I am only commenting to let you know that when your son turns 18 his autism will not magically go away… Sorry to have to report that to you. The thing that does go away however is all of the supports and therapies, that is unless you are rich and can afford to pay for these out of your own pocket.. I enjoy reading your blog and have considered doing one of my own because there are a ton of people out there that find comfort and humor in the day to day shenanigans of Autism… Well sorry to depart that bit of news, but look at it this way you can be prepared or you and your wife can try to find several other jobs between the two of you to pay for the things your son will need when all the other supports vanish. Hope your son is feeling better. Brenda.
YMCA in our area and CMS special needs organization also Florida
Norwood Park Special Recreation!
Pioneer Autism Center at the Special Services School in Burlington NJ can always use funding, and I love TACA as well, they have great conferences and lots of local groups with local mentors to help with finding services and figuring things out. That's where we send anyone looking to donate to an autism charity. I think this is a great post – we do have a tracking bracelet that we got for free because of a grant from Autism Speaks, so I feel the same, I don't hate them but I'd rather support smaller groups that are doing different things.
Autism Speaks – to me, is just for awareness. It does not help my son specifically and I also wish they would focus research money directly on environmental issues. There has never been a genetic "epidemic", it simply doesn't make sense. When it happens to your child, right before your eyes, you know that SOMETHING happened to make him suddenly lose the speech and social skills he just had….. I think Flutie Foundation and HollyRod Foundation are two choices that have the personal connection and look more at direct assistance to families. I live in the metro Denver area. Organizations that directly help kids in our area: Adamscamp.org (awesome camp with SLP, OT, Music, Art, Behavior therapists…. 2 weeks dedicated to Autism) TheRightStepInc.org (horse therapy on a family owned property) , SwimLabs.com (1:1 swim therapy) , GardenColorado.org (summer day camp, respite care, after school activities/therapy, social skills classes, adult vocational support, adult social activities).
Autism Ontario is raiding red flags and doing red t-shirts on April 2… Blue is not the only colour.
Hi Autism Daddy. It's Autism Story Book, I've been reading you for a long time. Congratulations on being honest and providing so many with comraderie, support and information. As a Queens, NY resident, you must be aware of the lack of services in our community. I ran an event called Illuminate the Unisphere in Pink and Blue for Autism Awareness on April 2, 2012. (We lit the big globe in Flushing Meadows Corona Park). This year I formed a Foundation called Illuminate Autism Foundation, Inc. with goals including raising awareness of autism and raising funds to create programs specifically for those affected by autism in Flushing Meadows Corona Park. I'm a Flutie Fan too! (Your page got so polular during the last year and a half that its hard to reach you now. Just wanted you to know what is going on in Queens. I'm going to illuminate the Unisphere in Pink and Blue again later this year. No point in competeing with Autism Speaks. And, it gives the media a chance to talk about autism in other than April. 😉 Thanks for all you do! – Annette Schroter
I'm a big fan of the Flutie Foundation too. This was a great and very important post.
Perfect Fit Canines and The Sean and Sophia Foundation in Pennselvania. They are helping my son get a service dog to help keep him safer and calmer and to help him have a friend. 🙂 And they're making sure the dog will be able to work around my own physical disabilities too in order to do so. 🙂
http://www.perfectfitcanines.org
http://www.seanandsophiafoundation.com
I totally agree with you. AS is fine, but I don't feel like they are really helping my family, at least not directly. Instead, I like to support more local, grassroots efforts. Like my friend who teaches Autism Movement Therapy classes. Also, I started a LEGO social skills group for kids on the spectrum and with other special needs. This group is helping my son waaay more than even the state-run group here.
For us, it's the Arkansas Autism Reasearch & Outreach Center (www.aaroc.org) They are one of the few programs in Arkansas that focus on autism specifically & try to organize events for the kids.
I had the same thoughts about Autism Speaks. I've let family and friends know that we are participating the Autism Speaks walk and they can come out this summer and walk with us or donate, but the money does not go directly to helping our son. But I also let them know that they can donate to National Service Dogs (I'm in Canada) and this will go directly to funding our son's dog, and to helping him.
I think there is importance in both Autism Speaks and the research they are doing for future generations and for some of the smaller organizations like the Doug Flutie Jr. Foundation for proving assistance to families who are living with Autism NOW. There is a need for both and we need to support any organization that is giving Autism the focus that it do desperately needs and that our kids deserve. I think the Light It Up Blue Campaign is important in the fact that it spreads awareness and helps people who are not in any way affected by Autism understand what our children and families face on a daily basis. Knowledge is power!
Any Baby Can of San Antonio, TX
Also, if you go to give.org, the Better Business Bureau will provide free, detailed info about your favorite charities.
The Friendship Circle is an amazing organization, not just for autism, but for all disabilities. The organization directly helps families with classes and activities, sibling support groups and parent support groups. The focus is on teaching life skills and relationship skills. There are 80 chapters around the world.
http://www.friendshipcircle.org
blog.friendshipcircle.org
Northwestern Counseling and Support Services out of Franklin County, VT provides great services through their autism program for my son. I love our BI, case manager, & program coordinator. Their ABA therapy has done wonders for my son.
Touchpoint is awesome and so is the GAPS program thru SADI
Autism Support Daily out of Chittenden county, VT is a great online support group that also does a lot of smaller events – no professionals, only parents. Great group of people!