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The Best of the Best in Autism Advocacy

Although Connor is only 7, I constantly think about what his life will be like when he is grown.  As he gets older and more mature, it will be important to introduce him to the world of autism advocacy.  All the learning and tools that his teachers and I work hard to give him will need to be complimented by an understanding and awareness of how to effectively advocate for himself and acquire necessary accommodations.

Beyond that, when it comes time for him to define himself and his place in the world, I want him to have solid examples to reference that promote a positive message about being autistic.

There are some excellent resources out there, including some great advocates (both self-advocates and neurotypical advocates).  I’ve put together a list of advocates that I appreciate for their positive approach and willingness to engage in meaningful dialogue about advocacy.  These are people whose writing I will share with my son, when he is ready.  I hope this is helpful to other parents that wonder about where to guide their children when it comes to this topic.

The Best of the Best in Autism Advocacy

John Elder Robison

As a person with Asperger’s, John Elder Robison has contributed so much in helping people understand what it’s like to be autistic.    He’s written several books, the most well known probably being Look Me in the Eye: My Life with Asperger’s.

One thing I particularly appreciate about Robison is his ability to respect and understand differing viewpoints.  In an article in Psychology Today, he said “In my earlier writing, I’ve said, ‘I don’t need a cure. I just need understanding.’ I still believe that’s true for me, but I now recognize the tremendous breadth of the autism spectrum. As a result, I am now sensitive to and accepting of the views of others who do want to be “cured,” however that may be defined. My views about the ‘cure’ may differ from yours but I recognize, accept and respect differing points of view, as long as they are not harmful or destructive to others.”

He also understands the incredibly wide range of needs for those on the spectrum, and said, “When we do advocate – speaking for the benefit of a larger group – we owe it to our less vocal community members to make the lay public aware of the breadth and depth of their needs as well as our own. When we ‘advocate’ for autistic needs, we should always be clear about the overall range of needs and services our population requires.”

Here’s a speech he gave for Google employees back in 2011.

(this is long, but worth it)

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Temple Grandin

Likely the best known autistic in the United States, Dr. Grandin writes books and speaks publicly about her experience and wisdom as an autistic adult.  She’s achieved acclaim for her contribution to humane livestock handling and animal welfare.  Her ability to explain autism and how she learned to navigate the world is so important that a movie was made about her life in 2010, titled Temple Grandin.

“You have got to keep autistic children engaged with the world. You cannot let them tune out. “
Temple Grandin

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Stuart Duncan

Perhaps the thing I admire most is Stuart’s innate ability to grab you with either logic or humor in a completely low-key and understated way.  It sneaks up on you, rather than hitting you square in the face.  He blogs at Autism From a Father’s Point of View.

Stuart writes about his sons, one autistic and one not, and also talks about how he has been diagnosed as having Asperger’s.  In addition, he has also written a couple of books, Autism From a Father’s Point of View and Autism Understanding and Acceptance.  

“Never underestimate someone with Autism because there could be brilliance struggling to get out.” Stuart Duncan

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Snagglebox

Snagglebox is a site hosted by “Bec”, who has a background in psychology and two autistic sons.  This site is a fabulous resource for parents and teachers, and topics are explained simply and clearly.  This is the place to go for Autism 101 training.  As a bonus, many posts include adorable original drawings, like this one:

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kid with autism

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There are also a number of books available for purchase, including:  The Super Useful Guide to Managing Meltdowns and Autism Preparation Kit for Teachers.

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Jean “Stimey” Winegardner

Stimey is mom to three boys, one of whom is on the spectrum.  She also officially joined her son on the spectrum in 2012 when she received her own diagnosis of Asperger’s.  Stimey has been blogging and writing about autism for several years, and has been featured many places, including the book Easy to Love but Hard to Raise.  She is the founder of Autmont, a site dedicated to autism information and events in her county.

Stimey writes with humor and insight about her journey raising her sons, and the joys and challenges that come with autism.  Her candor about her own journey through the process of diagnosis was honest and heartfelt, and helped open the door for others to share about their own neurology.

Of her diagnosis, she has said:  “I hope that it will let me continue to try to be the person I want to be while being able to adjust my expectations of what I can do. Understanding that my neurology is responsible for some of my difficulties might help me go easy on myself for having them. They are not character defects, they are a result of the way I am wired.”

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*******.

In closing, I’ve included the definition of “advocate”.  As you wade through the information online regarding autism and advocacy, remember that an advocate is someone that supports or promotes something.  If you’re finding sites that spend more time criticizing ideals, it may be best to move on to something with a more positive and helpful stance.

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ad·vo·cate

noun \ˈad-və-kət, -ˌkāt\

Definition of ADVOCATE

1. one that pleads the cause of another; specifically : one that pleads the cause of another before a tribunal or judicial court
2.  one that defends or maintains a cause or proposal
3. one that supports or promotes the interests of another
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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

34 responses »

  1. This is such an incredible list! I don’t know what to say about being included amongst such amazing company, except thank you :)

    Reply
  2. I’m very much honored to be on this list, Flannery. Thank you.

    Reply
  3. Julie Matthews, author of Nourishing Hope for Autism has quietly become a leading global advocate of the fact that children’s lives can improve and that diet and nutrition choices are instrumental to their lifelong health, learning, and behavior. She’s earned the respect of parents, doctors, and researchers around the world and has positively influenced the lives of thousands.

    Reply
  4. I like the positive approach to advocacy. It doesn’t have to be a fight, although we are ready to fight if we have to. I really like your definition.

    Reply
  5. Awesome list!!! *running off to share*

    Reply
  6. Great resources! Thanks, I’ll be sharing.

    Reply
  7. Bec and Stimey, Bec and Stimey, YAYYYY!!!!!!

    Reply
  8. Great list, they are some of my fave’s too.

    Reply
  9. He’s not a parent, but Ari Ne’eman and the Autistic Self Advocacy Network (ASAN): http://autisticadvocacy.org/ work for adults and children with autism.

    Reply
  10. My apologies for the double post, but ASAN has written a guide to college for young adults with autism (written by adults with autism): http://autisticadvocacy.org/2011/10/navigating-college-handbook/

    Reply
    • Yes! Yes! Yes!

      Why? Because it is written by autistics, and not just one! So there are many different perspectives one could get from those with a common neurology.

      Reply
  11. Thanks for thinking of me when writing your list. Did you know I have a new book on parenting? It’s called RAISING CUBBY and it’s out March 12.

    Reply
  12. Of all the great autistic advocates out there, you choose the two most painfully overrated celebrities Temple Grandin and JER? They are fine advocates and all. But they are perfect examples of “shiny aspies”, whose idea of autism acceptance is asserting that “high-functioning” folks have extraordinary talents and should not be considered disabled, while “low-functioning” folks do have a serious disability that needs to be cured.

    You should show your son examples of nonverbal folks like Amy Sequenzia and Henry Frost, so that he does not develop the attitude that he is superior to “those kids” who are considered “low-functioning.” Even verbal autistics like Ari Ne’eman and most ASAN chapter leaders make it clear that the autistic community means everyone!

    Reply
    • You should maybe make your own list. On your own blog. You know, instead of pissing on someone else’s words.

      Reply
      • Maybe you should be more open to criticism and stop being so defensive.

        Reply
        • You do have Rachel Cohen-Rottenberg in your tags, why didn’t you mention her in your post? She is fantastic. But few people know who she is.

          Reply
        • Maybe you should stop assuming that someone’s blog is an open forum for criticism. It’s not.

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          • Fine. If you don’t care what autistic adults think of your posts, that is your loss. I’m jut saying, Temple Grandon and JER make way to many compromises to be good advocates. They have a bit of internalized ableism left on them, and that is not something you want to teach your kid. Granted, TG is one of the few autistics who has put the neurodiversity movement forward. But her idea of autism acceptance is conservative. Autism advocacy has evolved greatly ever since self-advocates and parents were willing to work together.

          • Stop trolling. I stand by my choices for this post.

          • Also? An autistic adult wrote this post, so maybe you should value that input.

          • Oh, my point of view is not valid then? That makes me laugh.

          • Nope, you are just looking for a cowardly way out of this argument. I saw your discussion wih another commenter on your post abou equality. I am absolutely dismayed by your immaturity and stubbornness. It does not matter if you are autistic. You have said it yourself, it is no excuse to be a jerk. But that is exactly what you are, a self-righteous jerk with a dogma.

          • Name calling now? Is that your “advocacy” speaking? So on my blog my opinions should be open to attack and criticism by anyone and everyone? I wasn’t aware you were in charge of the rules for Internet etiquette. Your “cause” will not get off the ground if your only tactic is attack. I am part of this community and will not be bullied by bigots. You should really think about how you treat others on the spectrum.

        • Chelsea–when you go onto someone else’s blog blog and attack then you have to quit pulling the defensive card. It doesn’t work that way. If you don’t like what you see here, or upset you were not named, then simply move on. You are not helping anyone here.

          Reply
    • Chelsea—yes, you can say what you want. I will, however, ignore people who are stubborn and nasty—that would be you. Again—move on.

      Reply
  13. Shut up, Chelsea, you’re annoying everybody. Why are you annoying everybody, Chelsea????

    Reply
    • I’m annoyed, specifically.

      But also, what the hell? You’re mad atTemple Grandin and JER that they are shiny autistics? You know what the difference between them and the advocates that bitch about them? The former are kind, thoughtful people who aren’t taking their hatred of their parents out on parents of autistic kids.

      Reply
    • Because everyone here deserves it.

      Reply
  14. Pingback: Images in Your Head | Anthony Richer

  15. Lovely to see emphasis on positive advocates, a great list :)

    Reply

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