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)
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. “
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.”
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:
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.”
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.
noun \ˈad-və-kət, -ˌkāt\