Today I’m sharing a Q &A I recently did via email with the filmmaker and autism father Todd Drezner.
Todd Drezner is the director of the autism documentary, “Loving Lampposts: Living Autistic,” released by Cinema Libre Studio in March 2011. “Loving Lampposts” screened at the United Nations for World Autism Awareness Day, won best documentary at the Peace On Earth Film Festival in Chicago and the social consciousness award at VisionFest in New York, and screened at other film festivals around the country. It has been called “groundbreaking, even revolutionary” by a contributing editor at Wired Magazine and “a revealing documentary with a personal touch” by the Chicago Sun Times. Todd also blogs regularly about autism issues for the Huffington Post. His previous work has been seen on PBS Philadelphia and Ovation TV.
“Loving Lampposts” explores how society views autism at a time when the condition is more well known than ever before. Following a wide variety of autistic adults, autistic children, parents, and advocates, the film examines the controversies surrounding autism and how they affect the lives of autistic people. For more information, visit www.lovinglamppostsmovie.com.
I stumbled across Todd’s Twitter feed last May, and after reading some of his brave and searching pieces for the Huffington Post, I went to amazon and bought a copy of his film, Loving Lampposts. I also sent him a copy of my memoir, The Anti-Romantic Child. Todd and I soon formed a professional mutual admiration society and he asked me to give the Keynote Address at the 2011 Aspergers’ Association of New England’s Annual Conference with him. Over the next few months, we worked on our talk and wrote it “together” via phone conversations and email but never met in person! In fact, Todd and I met for the first time in the grand ballroom of the Best Western Royal Plaza Hotel in Marlborough MA at 8:30 am on a Saturday morning last October, as we took the stage together to deliver our talk! In the months since, Todd and I have become not only colleagues but also good friends, and we are now giving our presentation at conferences and schools all over the country.
It was my great pleasure recently to pose some questions to Todd and to read his interesting, witty, compassionate answers. Todd is a fount of wisdom and humor, empathy and courage, and I highly recommend that anyone interested in autism watch Loving Lampposts and follow him on Huff Post.
Tell me about your son, Sam, who will be eight in June.
Rather than attempting a description of Sam’s qualities, I thought I’d share a few details and recent stories about him that should give you a sense of his personality, interests, strengths, and challenges:
— One of Sam’s favorite activities is “thinking about books,” which simply means reciting them from memory to himself. He currently has 24 books that he thinks about. We are not allowed to choose any of those books to read to him at bedtime because they are reserved for thinking about.
— Sam has had a lot of anxiety about the heating/cooling unit for our apartment, which is in his room (chosen before his autism diagnosis). He worries about not knowing exactly when the unit will make the noise that begins the heating or cooling cycle, and the noise it makes at the end of the cycle. Sam calls the unit the air conditioner. One thing that has recently helped him manage his anxiety is to call the unit the “air conditioning” instead of the “air conditioner.” Sam finds this hilarious.
— We recently started swimming lessons for Sam. When we told him he would be taking lessons on Mondays, he was very upset because this meant he wouldn’t be able to visit the bookstore on Mondays. As it turns out, he knows and can recite what his after school activities were for each day of the week stretching back for about three to four years.
— Sam’s challenges with receptive language can lead to interesting conversations like this one:
Sam: Can we play Monopoly?
Mommy: I would love to play Monopoly.
Sam: How do you play Monopoly?
Mommy: How did you hear about Monopoly?
Sam: I don’t know.
It’s very likely that he heard about it from a friend at school, but he most likely didn’t understand everything that was said, and it’s hard for him to retrieve the details to recount later.
What is the most important advice you would give the parents of a child newly diagnosed with autism?
Find a way to connect with autistic adults, either by reading what they write or, ideally, meeting them in person. One problem that parents of autistic children have is that it’s harder to imagine their children’s future than it is for parents of typical children. As a result, they can be very fearful of the future and are sometimes willing to try untested treatments to “cure” autism. It can be enormously calming to meet autistic adults and to see that they can lead meaningful and fulfilling lives both because of and in spite of their autism.
What types of therapy or therapeutic approaches have most helped your child?
Most of the therapy that we have done with Sam has focused on relationship centered approaches like Floortime and RDI. Sam has always been interested in other people, but unsure about how to interact with them. The relationship based approaches help him learn about how to interact in a relationship and why it’s worth the effort. Early on, it was a matter of inserting ourselves into his rituals (to his great annoyance). As he’s developed, he’s slowly begun to develop his own imaginative games. These can also become ritualistic, and so the challenge is to vary the game in a way that Sam will find surprising and funny. Making him laugh by turning a ritual on its head is one of the best ways to interact with him and to make him experience the joy of a relationship. (For example, Sam plays school constantly and has a special “hello” song for his “music class.” We have lately taken to singing this “hello” song in the morning to wake him up, which he found really annoying at first but now finds kind of hilarious.)
Of course, Sam also gets traditional OT and speech therapy, and these have also been enormously helpful to him as well. And he has worked with a therapist he calls a “bravery teacher” to help with his fears.
What is the worst, most misguided, offensive, or otherwise disturbing statement you’ve ever read or heard about autism?
Probably it was Dr. Jerry Kartzinel’s statement in the introduction to Jenny McCarthy’s “Louder Than Words” that “Autism…steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” That statement, along with the relentlessly one-sided and negative documentary “Autism Every Day,” was part of what inspired me to make a film that took a more balanced look at autism.
If you were invited to speak to a group of typically developing children of your son’s age in order to educate them about autism, what would you want to tell them?
I will never come up with a better answer to this question than Mom-NOS, a wonderful mother to a wonderful autistic son who blogs at http://momnos.blogspot.com. She wrote a great piece a couple of years ago about talking about autism to the typical kids in her son’s class. You really should read the whole piece (at http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid-in-toaster.html), but briefly, she asked the kids to imagine that their brains were not made of neurons and tissue, but rather were made of metal and plastic and electrical wires. And what if, she asked, those elements came together to become a toaster brain. Then she suggested that her son also had a brain made up of metal, plastic, and wires, but his brain was a hair dryer.
In a world of toaster brains, Mom-NOS went on, the making of a toast would be the most important activity someone could do, and toaster brains would have no problem doing it. By contrast, someone with a hair dryer brain would be able to make toast, but it would take a lot more effort. On the other hand, it would be great to have that person around if you had wet hair.
The kids really got the analogy and on their own were able to come up with examples of how Mom-NOS’s son’s brain differences manifested themselves in both positive and negative ways. I think this is brilliant and hope that this analogy spreads to as many typical kids as possible.
What is your child’s biggest fear or source of anxiety? What helps him cope with it?
The air conditioner fear is a good example of the types of anxiety Sam has–it has an element of uncertainty (not knowing when the cycle will begin) combined with a sensory challenge (the noise). A few other fears like this are dogs, rain, wind, and the possibility that his cousin will cry. Like many autistic people, Sam also doesn’t like change, and his other anxieties can be heightened at times of change (like moving to a new school).
Somewhat counter-intuitively, one of his coping mechanisms is to choose something more manageable to be afraid of. So for example when he was apprehensive about starting kindergarten, he decided he was afraid of the 3 train. At least the 3 train, unlike many of his other anxieties, runs on a predictable track on a somewhat predictable schedule, and it has a big label on it so you know it’s coming.
We have helped him with many other coping methods such as the CBT “bravery teacher” mentioned above, games in which Sam’s toys are afraid of things, and photo books that we make for Sam about his fears (“Sam’s Book About Change and Worry” “Sam’s Book About Noises”). We try within reason to expose him to his fears and to help him understand that he can control them.
What is your biggest fear about your child’s future?
A lot of parents answer this question by saying that they worry about whether their child will be able to live independently and who will take care of him if not. Of course I also have this worry, but my first worry is about whether Sam will be able to be a good self advocate. Will he be able to express his needs or wants to caregivers or friends or family, even if it’s not in a traditional way, and will they respect those needs? If so, I think he has a lot better chance of having a good life, whether or not he’s living independently.
What is your greatest hope about your child’s future?
I hope that Sam will continue to develop in ways I can’t imagine or predict so that any specific wish I might have about his future is less amazing than what actually happens to him.
What one thing can anyone do to help support people with autism and make our society a more congenial place for them?
I was actually just part of a great group of autistic self advocates and allies who offered some terrific suggestions at Steve Silberman’s blog Neurotribes. The post is long but well worth reading: (http://blogs.plos.org/neurotribes/2012/04/02/autism-awareness-is-not-enough-heres-how-to-change-the-world/#more-3989).
But in general, I would say that society should focus less on “solving the problem of autism” and more on helping autistic people navigate a world that can be challenging for them.
In honor of National Poetry Month, I also asked Todd a few questions about poetry. His wife, Erika, is an English teacher and I knew that both Todd and Sam were poetic souls.
What is your favorite poem?
I don’t know if I can come up with one favorite poem, but I can tell you that the poet I always read if he shows up in The New Yorker is C.K. Williams. I think this is partly because I’m more a reader of narrative than of poetry, and Williams’ poems often feel like narrative. It’s probably partially a result of those overlong lines that leave him plenty of time to advance a story. At the same time, his imagery is beautiful and poetic and sticks in the mind well after you read a particular poem. And then finally, I got to hear him read at Carleton.
Does Sam like poetry and if so, what is his favorite poem and why?
Yes, he likes poetry, although he may not understand the term. But anyone who loves Dr. Seuss as much as he does is definitely a poetry fan. His favorites are “The Cat In the Hat,” “The Cat In the Hat Comes Back,” and “Green Eggs and Ham.” (Erika adds: Sam really likes “Us Two” by A. A. Milne. He likes the story about being together, he likes the musicality of the meter and rhyme, and he likes the idea of “not being afraid.” I speak this one to him as a story and he loves it.