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Wednesday, July 10, 2013

Why where you donate matters

I recently had the privilege of attending an Autism Society of North Carolina leadership retreat. A key theme of the event was the importance of knowing the mission of any organization that you choose to support. That goes for where you work, volunteer your time, or donate your money. Different missions are not necessarily better or worse, but if they do not align with your personal goals, that is a problem.

In North Carolina we have a number of organizations that are related to autism or developmental disabilities. But how many of you have ever gone to an organization's website and read their mission statement? I recently did just that, and I discovered that you can tell a lot about what your donation will go to support just by visiting the "About Us" or "Mission" tab on a website. Many groups have "Autism" in their name, but that does not mean that their aims or methods are at all similar.

Also ask where your money goes - does it stay in North Carolina or leave the state? For me personally, that is a huge factor in which organizations I support. I want to put my time and money into a group that will  help people right here in North Carolina. To be completely up front, I volunteer for the Autism Society of North Carolina and First In Families of North Carolina, two non-profits that spend all of their money right here in North Carolina. However, I do not support those organizations because I volunteer for them; I volunteer for them because I support what they do. Our missions align.

Speaking of missions, compare those of the Autism Society of North Carolina (a local organization) and Autism Speaks (a national organization). I have highlighted what I consider to be some key points:

Autism Society of North Carolina mission statement: 

Our organization works to directly improve the lives of individuals and families affected by autism through advocacy, training and education, and direct services.

ASNC is the only autism-specific organization in North Carolina, and it employs many parents of individuals on the spectrum, as well as some adult self-advocates. Their activities include educating families through workshops, hosting local support groups, and advocating for autism at the state legislature. ASNC also assists families with resources, navigating social services, and managing school issues. In addition they are a direct care service provider, operate the country's largest non-profit autism-specific bookstore, and run the incredible Camp Royall.

Camp Royall offers an incredible experience for kids and adults across the autism spectrum.

Autism Speaks mission statement:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Unlike ASNC, Autism Speaks provides minimal direct support to individuals with autism and their caregivers. Their primary role is to fund research grants to cure autism (a stance which greatly infuriates many self-advocates; if you care to learn why, Autistic Hoya has written many posts about how hurtful it is to have autism portrayed as a tragedy). Their political arm, Autism Votes, has been instrumental in backing autism insurance reform at the state level, here in North Carolina and nationwide.

First In Families of North Carolina is not an autism specific organization. They serve a broader population of North Carolinians with developmental disabilities (including autism), developmental delays, and traumatic brain injuries. Their mission is truly integrated into everything that they do on a daily basis. This is the FIF mission statement (emphasis is their own):

First In Families of North Carolina, FIFNC, helps people with disabilities and their families to believe in their dreams, achieve their goals and give back to others. 

FIF also operates under a set of guiding principles, of which the primary one is: People with disabilities and/or their families are the experts regarding their own goals and dreams and are respected as such by everyone.

Image via First In Families.
First In Families gives direct support to individuals and families in North Carolina by providing grants to help them acquire needed goods and services, assisting with long range planning, and empowering individuals to find opportunities to give back to their community. Unlike Autism Speaks, self-advocates are an integral part of FIF.

So which organization is most deserving of your time and money? That is up to you, of course. But for me, the groups that respect individuals with disabilities and offer direct support to North Carolinians day in and day out are the ones that I choose to support.


  1. An additional objective measure of a charity is to review its From 990 (filed with IRS); GuideStar is a good site for reviewing forms.

  2. Great point, thank you for the suggestion.