As this year’s Autism Society of America’s National Conference draws near, I am reminded of last year’s conference in Denver and how much information I gleaned as well as the overwhelmingly positive atmosphere with its strength in community. While reflecting on last year’s conference, I thought now would be a good time to share some of the valuable information I was able to take away last year.
Meet and Greet
A Meet and Greet was held the evening before the conference began with the President and CEO of Autism Society of America (ASA), Scott Badesch. Upon arrival to the room, I overheard him in the hallway discussing the numerous ways that ASA is making a difference with families with a loved one on the spectrum. I did not know about their call center, which answers questions about autism Monday through Friday from 9:00 a.m. until 9:00 p.m. Mr. Badesch said that one of his sons plans his life around ASA’s conference.
I then expected to walk into a room full of mothers to kids on the spectrum, special needs educators, and therapists. Instead, I walked into a room full of adult versions of my daughter—I was seeing all of her behaviors reflected in person after person. With my laptop in hand, I figured that if I was going to gain knowledge at the conference, the adults right next to me—complaining about the room’s acoustics and lighting—would be my best resource. As I asked questions and recorded their answers, it took them a while to understand my position, but once I showed them Hannah’s picture and told them I was a teacher and wanted to know what is best for my students and for Hannah, they were happy to help.
The first thing they shared was that they were grateful to have a place to gather. They said they don’t often feel the same hospitality.
A man named Jean shared with me that a minimized schedule on his computer is of the utmost of importance for him because of lack of executive functioning skills. Verbal directions/lists continue to be a challenge for him. He said his sensory challenges make it necessary to rate clothes on how long he is able to bare them being a “second skin.”
Another man, Carl, shared with me that he chose computer programming for his career because he can count on one hand the number of people he has to talk to in one day—he chooses his interactions. He called it self-preservation. Carl continued to say that home is a safe place for him after he has had to hold it together all day.
Before long, more autists started to share with me. When I asked a man named Jeff about Hannah’s eye contact, he said, “You can tell me to look at you or listen to you; however, we are going to tangle if you tell me to do both.” He said that his honesty still gets in the way. Jeff stopped me when I told him that Hannah had high-functioning autism. General euphemisms are quite offensive, he explained, urging me to be careful about repeating Hannah’s label, as the label is only to be used for understanding her behaviors. He also shared with me that meltdowns can only be controlled by understanding their antecedents (triggers) and that they are a child with autism’s last resort.
Some of the adults on the spectrum were accompanied by their champion moms and/or service dogs. It was fantastic to see this support and advocacy.
I’m glad I asked questions, and they were willing to take time to answer. This input was already worth the price of admission.
Keynotes, General Sessions, & Awards
Richard Wolf, USA TODAY reporter and autism advocate with an adult son on the spectrum, started each morning as the conference’s moderator. What I enjoyed the most about his moderation is that he would start each day with a recap of the prior day’s poignant teachings. If I had missed a valuable session, he summarized its lesson. He quoted Cathy Cherry, Certified Autism Specialist, by saying, “Sometimes you just have to turn the spotlight off your special one and take a bath.” His flair with words set the tone for a positive atmosphere for the rest of the day.
I asked Richard for his notes, and he didn’t hesitate to email them right away. To save time and money, he was also kind enough to share his cab back to the airport at the end of the conference.
Dr. Margaret Bauman shared her 30 years of experience with the study and treatment of autism, while Dr. Lucy Jane Miller shared her thoughts on the connection between autism and Sensory Processing Disorder. Dr. Bauman said that autism can be masked in the early years because it takes a while for the nervous system’s pattern to develop. Dr. Lucy Jane Miller continued to say that bright kids can be stuck in bodies that do not work.
A panel of five, including Temple Grandin and Jennifer Cook O’Toole, closed the conference with a Keynote session on twice-exceptional (giftedness accompanied by disability) children. They examined the importance of bringing awareness to this population in order to ensure the best future for our brightest minds.
My favorite award of all—Outstanding Advocate of the Year—went to Conner Cummings, wearing mouse ears for the ceremony! Conner and his mother, Sharon, are responsible for the newly passed Conner’s Law in the state of Virginia, which requires noncustodial parents with criteria-approved special needs children to pay child support to the custodial parent if support was not requested or initiated before the age of eighteen. It was a joy and inspiration meeting them both.
Breakout Sessions
I attended several breakout sessions over the next three days. A young woman in her early twenties named Chloe Rothschild spoke about her challenges with receptive and expressive language along with sensory struggles. She said it is important to become a detective to try to understand what your body needs.
I was happy to see Indiana’s own Cathy Pratt speak about the role of collective impact in facilitating services. In the decade since Hannah’s diagnosis, I have seen such advancement in the awareness, intervention, and advocacy for autism in Indiana.
Jennifer Cook O’Toole spoke about using pop culture to build emotional vocabulary and boldly go where no communication tool has gone before. Jennifer’s insight into Asperger’s Syndrome was invaluable. She has been a remarkable resource to me and role model for Hannah.
David Finch used his experiences with Asperger’s in the classroom to give humorous, but helpful, teaching tips. He said the most important words for teachers are love, understanding, guidance, and adaptability. And, he blamed his five-minutes-late entrance on his lack of executive functioning skills.
A sibling panel provided information on how it actually feels to have a brother or sister on the spectrum. They reminded me that a sibling relationship is the longest relationship anyone will ever have with another person. The most understood comment was that outbursts are hard—so, sometimes you laugh because you don’t want to spend the rest of your life crying. Their honesty was truly appreciated.
My last breakout session included Temple Grandin, Jennifer Cook O’Toole, Brigid Rankowski, Lindsey Nebeker, and Chloe Rothschild, who discussed women’s empowerment to be themselves and like themselves as The Sisterhood of the Spectrum. They believe that no woman should have to navigate the journey alone.
Once again, amazing women paving the path for our girls that are battling heavy inner struggles. Jennifer’s podcast, Speaking Geek, and her website, Asperkids, and her numerous New York Times best-selling books are this population’s best resources.
Jennifer Cook O’Toole
I look forward to this year’s conference in New Orleans and hope others will join! You’ll find strength in community at the conference and a feeling of empowerment that we, as parents, don’t often feel.
Remember, even though your experiences with your loved one on the spectrum are your own, you don’t have to handle them alone.
I welcome any questions and/or comments—just drop them in the comments below.
Take care,
Lori