Autism Advocacy: Strength in Numbers (Literally & Figuratively)
Hannah enjoyed the sensory modulation equipment at the exposition!
As long as I can remember, my daughter, Hannah, has been enamored by numbers. At four years old, she could count to two hundred before learning to string more than two words together.
I remember her long row of numbered flash cards forming a path across our family room floor straight into the office. The fluorescent number refrigerator magnets were always in perfect rows, and I found some joy in mixing them up to only watch her order them again.
Other times, while being pushed around our neighborhood in the double stroller with her younger brother, Connor, she would delight in reading numbers on the mailboxes and cars’ license plates.
Strength in Numbers – Those Who “Get It”
Numbers have always given Hannah strength and grounding in a challenging world. And numbers have given me unique, repeated opportunities to enter her world, connect, and interact on some personal level.
I guess I shouldn’t be surprised, then, that Hannah would find a different strength in numbers when she spent four full days in a community of individuals who “get it,” as she says. Almost two months ago she attended her first national autism conference, the Autism Society of America’s Conference and Exposition in Milwaukee, Wisconsin. I was speaking at the conference, as well as other high-profile speakers and authors she would know, so I was eager for her to meet people and listen to their messages.
But I had mixed feelings about her attending the conference, as I knew some topics she was ready to process but others would trigger relentless questions and anxiety.
Having been diagnosed on the spectrum at eighteen months of age, Hannah has always been privy to her diagnosis. Knowledge of her autism has empowered my strong-willed daughter to accept her differences, advocate for her needs, build on her strengths, and adopt unfamiliar, hidden rules of social pragmatics and the necessary tools to sharpen executive functioning skills which can be disabling. She also is aware that autism does not define her, and that only she alone can define herself.
I should have trusted how far she’s come; instead, I went into it certain I would need to monitor her participation and sensor appropriately.
The picture below shows just a few of the connections that Hannah made immediately, which is not the norm for her. This remarkable young group of men and women immediately embraced my daughter. Just look at that smile. She feels as if she belongs.
Chloe Rothschild, Hannah, Conner Cummings, and Maura O’Toole
The evening before the convention began, the exhibition hall was open for attendees who wanted to speak with the vendors and see what was offered. While this was occurring on the inside, an informal Meet and Greet for attendees was held in the lobby.
At the Meet and Greet, Hannah was able to meet her role model with Asperger’s syndrome—Jennifer Cook O’Toole.
Jennifer Cook O’Toole has written several books on autism including The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger’s Syndrome and Sisterhood of the Spectrum: An Asperger Chick’s Guide to Life. Hannah was overcome with emotion to meet the woman who two years before had signed Hannah’s book I’d bought when I came to the conference on my own. Jennifer wrote: “Thanks for sharing the sisterhood with me.”
In her ingenious writing, Jennifer has been able to give words where there had only been emotions and written rules for social exchanges which were so confusing to Hannah. Needless to say, it was a special moment for both Aspies.
Jennifer Cook O’Toole and Hannah
Self-Advocacy in Action
Hannah and I were so pleased to meet Kerry Magro and sit in on his session entitled I Used to Be Bullied for Having Autism: Here’s Where It Stopped. Kerry is a young adult with autism, an award-winning national speaker, and a best-selling author. If I want information about something new that I’ve heard buzzing around the autism community, I go to Kerry’s blog where he already has a post focused on the topic. During his presentation, Kerry said the majority of the time bullying stops completely when a peer intervenes and says, “What you are doing isn’t okay!”
I must say, what happened next probably wasn’t socially appropriate for Hannah to do, but I was very proud of her. A woman raised her hand to ask Kerry a question and prefaced it by saying, “My son has just been diagnosed with autism, but he doesn’t look like he has autism.”
Hannah turned her head around and said, “Autism doesn’t have a look!” Yes, I believe I’ve raised a daughter that knows a thing or two about autism awareness and self-advocacy.
Hannah and Kerry Magro
Insight from Dr. Shore
We were able to attend Dr. Stephen Shore’s session From Autism Awareness to Acceptance to Appreciation: Fulfilling and Productive Lives as the Rule. Stephen is a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome.
He stressed an abilities-based model for helping individuals with autism. Focus on strengths. He also said we should be working toward interdependence versus independence because we all need others to help us out. He believes that self-advocacy is very important and likened it to being lost.
He said, “If you’re lost. You stop and ask someone for directions, and that is what self-advocacy is all about.” He stressed that success is about living a productive and fulfilled life and not comparing yourself to anyone else.
Chloe Rothschild, Stephen Shore, and Hannah
Be Different with John Elder Robison
We spoke with a man whose book, Be Different, I had read only two years earlier and thought that’s a male version of Hannah—John Elder Robison. After speaking with Hannah for a while, he signed her book, “For the lovely Hannah, a fine fellow geek.”
John gives advice to individuals with Asperger’s syndrome such as: “You should respond to what others say, not just speak what’s on your mind,” and “I benefited from social compliance. Asperger’s syndrome causes me to be more logical and straightforward. Manners are neither.”
As a closing keynote speaker at the conference, John described how the differences of autism and ADHD can disable individuals as children even as they confer powerful competitive advantages upon individuals as adults. He showed how traits that crippled him as a child actually facilitated some of his greatest accomplishments as an adult. He shared a new way to look at disability, difference, and giftedness, and offered a different paradigm for educators, parents, and neurodiverse people. This man has given me tremendous insight into Hannah’s thoughts and actions. We are blessed by those who have come before us.
Hannah and John Elder Robison
I’m glad that Hannah found a strength in numbers within the national autism community at large. They are dear individuals that enlighten the both of us about the spectrum and help us understand Hannah’s emotions, needs, and authentic self more than I could ever dream.
Strength Even in Small Numbers
As I mentioned, I also spoke at the conference: Girls on the Spectrum: The Pink Side, which I will discuss in October’s post. I addressed common traits in girls by utilizing anecdotes, listed social/emotional pitfalls with suggested supports, and motivated attendees to embrace the pink side like never before.
Afterwards, Hannah and I were sitting at a round table in the exposition hall when a lady I recognized from both my session and Kerry Magro’s session introduced herself and asked if she could ask Hannah a few questions. We welcomed the visitor as tears began to gently run down her beautiful, yet concerned, face. I could tell she was bothered.
After attending my session and watching Hannah interact at the conference, she was confident that her daughter, too, was on the spectrum. Without divulging too much about this woman, she politely asked Hannah how she copes with certain triggers, deals with her anxiety, and accepts her differences. She then asked how to go about talking to her daughter about a diagnosis.
In truth, I believe this woman did more for Hannah and me then we could ever do for her, but I do believe she gleaned hope from our conversation. Since then, the two of us have gained a friendship miles and miles apart, while raising daughters with similar needs.
There is strength in numbers, whether you’re surrounded by hundreds at a conference, interacting with thirty at a local support group, or chatting one-on-one with another parent seeking advice on how to help their loved one on the spectrum.
Find Your Numbers
I hope you and your family have found a community to surround you. There is no better feeling than acceptance. I welcome any comments that you can share on ways in which you and yours have found strength within our amazing autism community—just find the blog tab across the top of this page and comment after this post.