Friday, April 13, 2012

Charities are not "one size fits all"

It is a rare occasion that I take to my blog to rant, but I want to share an interaction I had with another Autism mom today.

One of my Twitter followers (well, now ex-follower though she apparently is still checking my tweets) took issue with the fact that Team Will is raising money for the 2012 DFW Walk Now for Autism Speaks. After I posted a link to our fundraising page, it started simply with her asking, "You're raising money for Autism Speaks?" I eagerly responded, "Yes, for the 2012 walk in DFW." Her tone immediately turned argumentative - "But [Autism Speaks] doesn't support biomed, [gluten-free, casein-free] and gives less than 1% back to families. They spend all funds on genetics, salaries, ads WTF?" (For anyone who doesn't know, "WTF" stands for "what the f*ck")

I told her I wasn't going to argue with her, and that "to each their own." There are a lot of different autism charities out there with different missions, different fundraising goals, etc. Some organizations focus on providing direct support for families, while organizations like Autism Speaks focus primarily on research and awareness. In a nutshell, there is a little something for everyone.

The ex-follower kept going. She listed a bunch of other autism organizations apparently more deserving of my fundraising efforts. Interestingly enough, I've supported several of the organizations she listed. In the same tweet though, she went on to degrade Autism Speaks' Light It Up Blue campaign and said it was nothing to celebrate. If you recall, we light up our house blue every year to help promote autism awareness. I think it's safe to assume ex-follower doesn't support the campaign.

After her additional efforts to "educate" me, or to maybe inform some of my followers who may not know the difference between the various organizations, I told her she was being divisive and she should respect my decision to give to the charity of MY choice. She said she didn't mean to be divisive, but threw jabs at me such as, "You can't see the ocean from the boat." (the rude tweets appear to have been deleted). It's clear that she is passionate about her cause and her beliefs, and I can't fault her for that. But her approach is flawed - you can't badger, insult and/or bully someone into supporting your position. If she thought her approach would work, she was wrong. If anything, it strengthened my position to help support Autism Speaks.

Here is a little FYI about Autism Speaks - it was created in 2005 with a mission of funding, "global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bring hope to all who deal with the hardships of this disorder." According to the Better Business Bureau, Autism Speaks meets all 20 of its standards for charitable accountability. Based on 2010 information, out of the almost $54 million the charity raised that year, 73% of the funds went directly to its programs, 23% went towards fundraising expenses (anyone who has ever tried to raise funds knows you have to spend money to make money), and 4% went to administrative costs.

AS primarily engages in four program service activities. The organization funds biomedical research into the causes, prevention, and treatments of autism. AS is also involved in awareness initiatives such as Learn the Signs campaign through the Ad Council and Light It Up Blue, a campaign to celebrate World Autism Awareness Day. The organization also reports operating a database of about 30,000 autism related service providers, informational tool kits that educate affected families, and grants to community-based projects focused on education, recreation and young adult/adult services. Furthermore, AS engages in legislative advocacy efforts specifically for autism insurance reform and to secure federal funding for research and family support services. Some ($5,775,924, or 15%) of AS’ programs are conducted in conjunction with fund raising appeals. I often promote Autism Speaks' 100 day kit as an excellent resource for families dealing with a new autism diagnosis. This organization has done amazing things in a little over a decade to promote autism awareness, support, advocacy and research.

Now, Autism Speaks has taken a stance against the vaccine-autism connection. As a mom who watched her son regress shortly after he received the MMR vaccine shortly after his first birthday, I feel very strongly about the fact that there is a connection and I don't agree with Autism Speaks on this issue. That doesn't mean I shouldn't support Autism Speaks. What it means is that I can look to other organizations for support and resources that do appreciate the connection, and there are plenty out there. But just because I support one autism organization over another doesn't make me any less of an authentic "Autism Warrior" than someone else. We're all fighting the same battle, and we're all entitled to seek out and support any autism organization we choose. I hate the divisiveness that can permeate charitable causes - no one, NO ONE, benefits from people dealing with similar issues putting each other down because of the charities, treatments, programs, etc. they support.

This reminded me of my position on Susan G. Komen for the Cure. After Komen recently pulled funding from Planned Parenthood based on PP's reproductive services, I vowed to never ever give Komen another dime of my money in the future. That being said, I can't imagine I'd berate or chastise someone for choosing to support Komen. It's their choice, their decision - not mine. My decision not to support the charity doesn't mean I'd attack someone for choosing to do so.

So in a nutshell, here's the point of this long rant. Charities and charitable causes are not "one size fits all." Different organizations serve different purposes and families dealing with different adversities, be it cancer, autism, diabetes, lupus, you name it, have every right to choose organizations to be affiliated with. They shouldn't be attacked for their decision. They should be supported, uplifted, encouraged - not bullied, insulted and torn down. To each their own. To each their own.

To conclude this post, I'd like to provide some resources to other autism charities and organizations I've supported and been involved with over the years. They aren't one size fits all, but can certainly provide resources for families affected by the autism epidemic. And for that, I am grateful!

GENERATION RESCUE - www.generationrescue.org
Generation Rescue is dedicated to recovery for children with autism spectrum disorders by providing guidance and support for medical treatment to directly improve the child’s quality of life for all families in need.

AUTISM ONE - www.autismone.org
Autism One is a nonprofit, charity organization 501(c)(3) started by a small group of parents of children with autism. Parents are and must remain the driving force of our community, the stakes are too high and the issues too sacred to delegate to outside interests. AUTISM IS A PREVENTABLE/TREATABLE BIOMEDICAL CONDITION. Autism is the result of environmental triggers. Autism is not caused by "bad" genes and the epidemic is not the result of "better" diagnosis. Children with autism suffer from gut bugs, allergies, heavy metal toxicity, mitochondrial disorders, antioxidant deficiencies, nutritional deficiencies and autoimmune diseases - all of which are treatable. THE KEY IS EDUCATION The Autism One Conference, Autism One Radio, Autism One Outreach and Autism in Action initiatives educate more than 100,000 families every year about prevention, recovery, safety, and change.

NATIONAL AUTISM ASSOCIATION - www.nationalautismassociation.org
Since 2003, the National Autism Association has created and implemented direct-assistance programs for the growing number of families affected by autism. Along with these services, NAA provides autism research funding, ongoing advocacy, support and education.

Because we are a parent-led non-profit organization, our objectives and resources center on:
Strengthening autism families by providing support in areas of greatest need, such as safety, therapy and medical services;
Providing our members and community with the latest information pertaining to research, education, legislation, safety, and therapy and treatment trends;
Funding impactful research studies aimed at real progress for our children;
Raising awareness about the autism epidemic and the environmental components that have contributed to the rise in cases

TACA - www.talknow.org
TACA’s goal is to provide education, support, and information to parents to help their children diagnosed with autism be the very best they can be, with the hope of recovery.

Today, there are many, many treatment options that help alleviate many of the symptoms suffered by our children diagnosed with autism. Let us share our collective, hard-won knowledge and experience with your family so your child’s treatment can begin right away. Ask about the autism journey because we are families with autism who have already “been there and done that” with many of our children. Some of us are still working hard everyday with our children for whom we never give up hope. We are Families with Autism Helping Families with Autism.

These are some of the bigger nationally-known organizations. Most have local chapters. There are other local organizations that I love! www.hollyrod.org is one - they give children with Autism the gift of their voice by providing iPads.

So many organizations, so many missions, so many purposes, but with one goal - to provide support for families dealing with autism. There is no one size fits all, not right charity, no wrong one. To each their own...

1 comment:

Jennifer B said...

Thanks for writing this! I can hear the anger, confusion and passion in this post. Unfortunately, people hide behind their computer and would not say these words to your in real life - which is very upsetting & the downfall of technology. Press on & speak out for Autism!!!