Home > Government Relations > Autism Votes 100,000 Advocates Strong

Autism Votes 100,000 Advocates Strong

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

It was four summers ago that Autism Speaks recruited me to help build a network of autism advocates across the United States, an assignment that recalled my earlier days growing up in the South where summertime activities always included gardening. My parents planted their garden in the spring while my grandmother had a large garden year round at her home in Alabama.

Productive gardening takes diligence – Preparing the ground by tilling and fertilizing the soil. Plowing rows. Placing stakes and strings to support tomatoes and string beans. Planting the seeds or seedlings. And putting up scarecrows. The garden must be watered daily, soil nutrition levels maintained and yes, weeds must be pulled.

As kids, my brothers and I would grow so impatient after planting the seeds. Why did it take so long to notice any change? We would run out every morning to see if anything had popped through the soil or if a flower had formed. Did we see any sign of a fruit or vegetable on the plant? No,just dirt.

But magic was happening below the soil’s surface.

Our mother and grandmother would hand us a bag and instruct us to start pulling the weeds before they got out of hand. Sometimes it was difficult to tell the difference between a weed and a seedling. Sometimes we made mistakes. We rolled up our sleeves for this boring, hot chore, but learned that in order to have a vibrant garden, patience was a prerequisite.

Wait. Wait. Wait.    Weed. Weed. Weed.

Somewhere around mid-summer the plants would take off!  Delicious vegetables would start coming in – different plants at different times – but just as our mom and grandmother advised us year after year, our patience and care paid off. Our garden was practically bursting!

As the Director of Grassroots Development for Autism Speaks, I have worked with colleagues and volunteers to carefully prepare, till and fertilize the soil for autism advocacy, to plant seeds of change in communities nationwide, to nourish budding plants of reform and from time to time, roll up my sleeves and pull out weeds. All the while, teaching each new gardener, one at a time, how to get to work on tedious, boring tasks while keeping focused on the dream of a beautiful harvest.

This summer, our effort blossomed – we are now 100,000 gardeners strong.  100,000 advocates affiliated with the autism community planted in every state, in communities large and small. These gardeners are dedicated – determined to make a difference for all people with autism, children and adults alike, on a myriad of issues from health insurance coverage, to securing federal research funding, to educational reform and services.

Over the last three years, our community has harvested a total of 25 states that have enacted autism insurance reform and the gardeners there continue to work hard to maintain their patch through implementation. We have planted seeds and are nurturing seedlings in the remaining states to end autism insurance discrimination. We have secured an additional $125M in research funding through the American Recovery and Restoration Act. And we inserted four very important words – “including behavioral health treatment” – into the Patient Protection and Affordability Care Act to cover applied behavior analysis therapy in the essential benefits package for those eligible for health insurance coverage under this law. We are hard at work to maintain the plants that fund autism research and treatment networks by fighting for the Combating Autism Reauthorization Act.

Sometimes, the plants of our garden are on different rows. These different plants produce different fruit and each plant requires different soil conditions and care. But the fruit of each plant is essential to a balanced diet of change within the autism community. We cannot let any of them wither on the vine.

In the end, I learned life lessons from my mother and grandmother’s teachings.  I may have one big black thumb when it comes to raising a real garden of my own, but I love to plant, grow and nurture people and will help you become a strong, healthy advocate for change.

If you want to learn how to roll up your sleeves and make a difference in a community garden, please join our Autism Votes program at www.autismvotes.org. We provide you with easy steps to participate so you can obtain health insurance coverage, federal funding for autism research,  secure tax deferred savings plans for your child’s adult needs,  services for people with autism and education system improvements. If you are interested in becoming a gardener or district leader in your area, please email us at advocacy@autismspeaks.org .

  1. erica rodriguez
    July 25, 2011 at 1:59 pm

    I just love your blogs and I’m truly overwelmed by how much progress a child with autism can make. I’m a mother of a 5yr old with autism and I yearn for the day that she can call me mommy. Puerto Rico needs more people like you to help these kids.

  2. Noreen
    July 25, 2011 at 10:23 pm

    Can you put me in touch with an advocate here in Central NJ. I am truly sick of my child being “actively” segregated and not accomodated for 3 years in a row. My child has not even entered the first grade yet, so I would be TOTALLY for getting HOME SERVICES until 5. This way the other kids don’t see the schools “segregating” them and think “they are different”. The are all human beings and should be treated “EQUALLY” and it makes me Angered to no point that the PUBLIC schools (not private) feel they can step on these kids and take away their money/services and spend somewhere else. There is no compassion, accomodations and supports. It so much better in PRIVATE schools and the public schools don’t care to shape up their act. It really shows that there are no morals there when the higher ups are discriminating.

  3. July 28, 2011 at 7:54 am

    Hi5! EnjoyHi5Autism enjoys Autism Speaks AutismVotes blog and on Twitter. Thank you for raising awareness about the necessity of advocating for legislation that positively impacts people living on the Autism Spectrum. EnjoyHi5Autism will continue to voice our choice.

  4. August 18, 2011 at 9:52 pm


  5. Russo
    August 28, 2011 at 10:06 am

    I am interested in being an advocate. Is there an internship for Certified SPED Advocates? Was certified by USD and COMPASS. Please respond

  6. December 18, 2011 at 8:00 pm

    HI. I loved your posting. Thank you for all that you do for the cause. :) What does being a district leader involve?

  7. December 18, 2011 at 8:02 pm

    I would like details about the advocate also. I have voluntarily advocated for parents before. :)

  8. Jackie Pilgrim
    January 30, 2012 at 7:21 pm

    Proposed Changes to Autism Definition May Mean New Diagnoses for People with Asperger


    I just signed a petition addressed to: The American Psychiatric Association regarding DSM-5 proposal to change definition of Autism/Asperger’s/PDD NOS diagnosis.

    Please take a moment to visit the link below and read the artcle posted on CBS News website – cbsnews.com.

    Proposed Changes to Autism Definition May Mean New Diagnoses for People with Asperger’s


    I look forward to reading your comments regarding this issue. If you have concerns or feel strongly about the proposed changes to Autism definition, DSM-5, do not hesitate to state your peace and be heard. Contact as many Autism advocacy groups/individuals as you can and pass this information on to anyone you know. So far I have forwarded this information to all my friends, family, those on the spectrum, family members of someone on the spectrum, as well as case managers, service providers and the board members of this advocacy group.

    For those of you who wish to sign the petition, click on the link below.


    Onward and Upward,

    Autism’s Love

  9. David Winters
    February 6, 2012 at 11:21 am

    Hi I was wondering if you had any homepage advertising available on your site.

    Kind Regards,
    David Winters
    Business Development
    Innovative SEO

    • alidyer19
      February 6, 2012 at 11:48 am

      Hi David – I am sorry, but we do not!

      Thanks for inquiring!

  10. Sarah Ann Higgins
    February 15, 2012 at 11:13 am

    Hi Shelley!
    Looking forward to meeting you in Tuscaloosa in March! I will do whatever I can for my son and the thousands of others like him in Alabama who are constantly fighting an uphill battle against the two industries who should support them the most – Education and Health Care. I have my second Due Process hearing on Feb 23 & 24th just to get an FBA for my son in his school setting. And, already this short 2012 year, I have paid almost $3000 for therapy visits, independent evaluations, tutoring, psychiatric appointments and medication…and that is ALOT for a single, working mom! Thanks for all you do, and please know, you can ALWAYS count on me to help in any way I can!

  1. July 22, 2011 at 3:31 am

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