By Patty Pacelli
How to Dance in Ohio follows a group of young people on the autism spectrum who experience nervousness and excitement in planning a spring formal dance. In the new HBO documentary, director Alexandra Shiva said she wanted to show similarities rather than differences of the teens and young adults highlighted in her film, and hoped the audience would feel a connection to the characters, whether on the autism spectrum or not. I believe they accomplished this goal in a unique and heartfelt way that portrays the characters with dignity and honesty.
As the parent of a 22-year-old with high-functioning autism, I found it fascinating to see an honest, revealing look into the group therapy sessions and family life of a group of teens and young adults on the spectrum. The story centered around 12 weeks planning for a dance initiated by their therapist, Dr. Emilio Amigo, of Emilio Family Counseling in Columbus, Ohio.
The film captured me right from the beginning, and I was immediately impressed with the counseling skills of Dr. Amigo and his staff, and the way he interacted with the autistic students. The students were so different, but got along well with each other and their therapy workers. I would have been thrilled to have that caliber of therapy for my son when he was a younger teenager. I enjoyed all the characters, but the film helped us to get to know three of the girls particularly well.
Marideth, 16 who had difficulty interacting, even with her own family, preferred to be on her computer and was fascinated with research and facts from the Guinness Book of World Records and other similar books. She had a patient, supportive and dedicated mom, dad and sister. It was so touching to see the whole family encourage her to sit and eat with them, make conversation with her, and most heartwarming of all--her sister Margaret brushing and styling Marideth's hair for her.
Jessica, 22, had an adorable personality and I loved how conscientious and hard she worked to live as an adult. She had a job at a bakery that specifically employed workers with autism (thank-you to this bakery!) and longed to be independent and eventually live on her own. She also had incredibly supportive and knowledgeable parents who treated her with dignity and respect while teaching her the necessary skills for her independence. One of my favorite lines from the movie was when Jess was at work in the bakery and her manager needed to have a talk with her about how she sometimes came across as being arrogant. She was very upset and hurt that she would be seen that way, because she didn't mean it at all. Her manager told her that she had a great work ethic, but that she needed to learn better work etiquette. This is so true for adults in the workplace with autism. They almost always have better-than-average work ethics, and do their jobs well, with reliability and integrity. However, they are challenged with the etiquette and social interaction that is also a part of the workplace. I loved this message and how it was portrayed.
Caroline, 19, the third main character, inspired me with her determination and goals. She was attending community college with a goal of going to Japan to work, and was studying the Japanese language. Watching her sitting in a corner of a campus building with her Japanese book perched on a pile of her belongings, diligently reciting Japanese words, made me well up with pride for her, seeing how challenged she was by this. She had a stammering issue, even when speaking in English, so it was amazing to see her practicing Japanese! Again, her parents were crucial to her success, and also shed light on concerns, such as when her mom patiently discussed with Caroline what to do if she didn't feel safe riding the bus, and described how Caroline had waited at a college class for the entire hour not knowing what to do because the classroom location had been moved.
My favorite scene of all was when Caroline and Jessica went to David's Bridal with their moms to shop for gowns for the formal. These two girls were friends, and they and their moms worked together to find the perfect dresses, just like any other friends with their moms. Jess was so cute when she said that the dress didn't look good at all, "on the hanger, but it looks beautiful on me!" Caroline was concerned about her strapless dress coming down, but was eventually convinced by the shop assistant that it was secure. It was so obvious that both girls felt beautiful throughout the process, a universal feeling that all young women can and should experience.
There were other aspects of planning the formal, including asking others to be their "date," practicing how to dance, whether to dance, and making conversation. The idea of asking for dates was confusing or undesirable to some, but a few students did pair up for the dance, including Caroline and Jay.
The girls finally had their hair and makeup done, put on their dresses, and were dropped off at the formal. They enjoyed dancing and singing to the music as much as any other teenagers and young adults would, and Caroline and Jay even held hands and kissed. The movie ended at the formal with the song by Katy Perry, "Firework," which perfectly fit the message of the movie. It's true that people with autism should never feel like a "waste of space." The words are so true for my son Trevor, and for all people on the autism spectrum. We have learned never to underestimate them, because you never know "what the future holds." These young people will definitely "ignite the light."
By Tracey Cohen
Although she wavered between “I got this,” and “No way, what the heck was I thinking?”, and hurt like she had never hurt before, on September 11, 2015, Tracey Cohen, a woman diagnosed with Asperger Syndrome at age 39, and author of Six-Word Lessons on Female Asperger Syndrome, ran and finished the Woodstock Hallucination 100 mile ultra marathon at Hell Creek Ranch in Pinckney, Michigan. The race started at 4 p.m. on September 11, 2015 and had a 30 hour time limit. Tracey finished the race in 29 hours, 23 minutes and 57.6 seconds. She finished 85th out of the 91 runners who started. I asked Tracey about how she accomplished this incredible feat.
Do you think your Asperger’s affected your ability to accomplish this? If yes, in what ways?
I’m not sure because all aspies are different and certainly not all or even most are long distance runners. But for me, I love the independence, the very movement, the solitude and peace of running. I went for so long being undiagnosed I really don't know what is in part due to my Asperger's and what is just “me”--maybe both?
What made you want to do a 100-mile race?
Though I truly love to run and had been running marathons since I was 18 (1989 I ran my first - Detroit Free Press) but never had the desire to race further until I learned about the Old Mutual Two Oceans Marathon in Cape Town South Africa when I was serving in the Peace Corps in Namibia from 2003 to 2005 My supervisor had a friend who lived in Cape Town who was running the race and was willing to give me a place to stay and transportation to the race. At the time they had a 56KM race and a 21KM race. I had never run further than 42KM (marathon) but taking a 23 hour bus ride to get there I definitely knew I wanted to run the full 56KM The race was as beautiful as advertised which I ran in 2004 and completed in 5:49:55, 10:03 ppm. From there I gradually continued to build my training, miles, experience and passion for the longer miles, bigger, different challenges, only deciding to go for it when I knew I really wanted to commit, physically and mentally.
What kinds of things did you do to prepare for the race?
Anything and everything you can think of, such as running miles, including speed work, long runs on and off the trail; lots of strength work; walking, hiking, running in the dark; swimming and otherwise on off days to try to continue endurance and fitness while giving rest to running muscles and building others, which I had to tailor and modify to my own life demands and time restraints. I tried to make sure that I went for quality over quantity with my training. My training might be nontraditional for some but it works for me and I continue to try to learn and improve and adjust to life circumstances.
What kind of encouragement or advice, if any, did you get along the way?
I am a “doer” more than a “talker,” so I didn’t tell very many people about my goal, in part because some I knew would be discouraging and in part because some people are more talk than results and I try to pride myself on being the opposite, and am just not much of a “chatter.” That being said, I am fortunate to have some very good and generous people in my life who welcome me to train with them and sponsor me to help keep injuries at bay. One friend gave me the push I needed in asking me, “What are you waiting for?” regarding my sign- up commitment and others telling me, “You got this,” and “Just put one foot in front of the other!”
How did you feel as it was getting close? Did you feel ready?
I wavered between feeling like, “I got this” and “No way, what the heck am I thinking?” but knew that I trained as much and as best as I could despite family health issues and other stressful time-consuming issues, and was just going to give it my all. Also, whether inspired by my autism or otherwise, I am the type of person who needs a great deal of time by myself which I certainly do not get; I tried to keep in mind what a privilege it would be to have 30 hours of “selfish” time (outside of checking my phone after each loop to be certain of no family emergencies), my only responsibility being to put one foot in front of the other fast enough to finish within the 30 hour cut-off time. I also felt privileged to be outdoors on the trail/in the woods, my very favorite place to be.
Did you ever doubt that you could finish?
Yes, but I am a pretty stubborn person and was determined to keep going unless I was risking serious injury, was not going to make the cut-off, or had a family emergency. Though extremely difficult (I hurt like I've never hurt before) and frustrating at times (I brought three sets of battery changes but my headlamp--one I use all the time--kept failing), it was great fun, and I can't say enough good things about the race organizers, volunteers, competitors and spectators.
Was your time and overall success pleasantly surprising, disappointing, or about what you expected?
I did not have expectations; so much can happen, especially in a race of that distance. My goal for this race was to put it all out there and finish within 30 hours. I’m so happy that I did and believe that I can build on this race and improve.
What advice do you have for other people with Asperger’s or other autism spectrum disorders who have dreams and goals that they would like to accomplish? Or anyone who wants to accomplish a huge goal?
If it is something that you really want to achieve, do not let anyone discourage you and know that if it is something that you want enough, you can absolutely achieve it so long as you are willing to be consistent, put forth the effort and work no matter the frustrations and obstacles that will undeniably happen along the way.
Is there anyone you want to thank for helping you achieve this?
Yes, I would like to thank RF Events with special props to my friend and race director, Gary Veen; Tri-Covery Massage & Fitness, who kindly sponsors me and helps me to continue pursuing the sport I love so much; my friend Bill Fuchs for his advice and willingness to accept me for exactly who I am; my friend, Jeff Watters, owner of Watters Performance Enhancement who allows me to train with him and gave me the push I needed to “bite the bullet” and take on the challenge. And I could go on and on with many thanks to the volunteers, spectators, and Running Fit.
Some final tips from Tracey:
Learn more about Tracey’s book, Six-Word Lessons on Female Asperger Syndrome, available on GrowingUpAutistic/Tracey.
Inspiration for Life with Autism
This blog has a variety of articles about people living life with autism, and topics and ideas that can help in the journey. Guest bloggers are welcome. Inspired by Trevor, a young adult film critic, photographer and college graduate on the autism spectrum.