Dani Bowman, an 18-year-old on the autism spectrum, is an illustrator, animator, writer, motivational speaker and author. Dani has been able to manage a full workload while pursuing her education and will be graduating from high school this June. One of Dani’s greatest achievements has come in her work as founder of “Power Light Animation Studios.” Today, Dani is a self-advocate for a better day for our autism community.
AA16: My first question for you Dani is when did you first find out you have autism?
DB: At age 11, when I came to live with my aunt, she told me that I have autism. I wish my parents would have explained it to me more and gotten me some speech therapy earlier in life. I had really bad speech as well.
AA16: What have been some of the challenges you’ve had to deal with growing up?
DB: I have sensory problems, my ears hurt with high-pitched noises like girls shrieking, babies crying, and I can’t stand cussing. For my eyes, I’m also sensitive with bright lights, and certain tastes and textures in my mouth. Sometimes I get social overloads; when I was younger I used to wear earplugs and I used to have frequent meltdowns at school. But with a lot of help from my aunt, I’m getting much better.
AA16: What inspired you to start Powerlight Studios?
DB: I’m very competitive and when I was 11 years old, I loved Pokemon. My aunt told me that the co-creator of Pokemon, Satoshi Tariji—who also is on the spectrum—created his company Game Freak, Inc. when he was 17. So I set out to beat his record. And I launched my website by age 14.
AA16: Can you tell us more about how it started?
DB: When I first came to live with my aunt, I saw that my uncle had his own company and my aunt just retired from her own company, so I thought everyone must have their own company, so I asked my aunt how do I get my own company? And she told me first of all, I have to come up with a name and register it online, and make sure nobody else has the same name registered. Then after a long day of Internet surfing, I came back with a name “Power Light Animation Studios.“ It’s really from my Nintendo DS username “Power-light” which was previously “Volt Girl” due to an obsession that I used to have with 9-Volt, a videogame character. A week later, I asked what is the next step? And she told me that I needed a five-year plan. I didn’t know what a five-year plan was. So I went back to the Internet for more research on five-year plans for companies. And I found one that fit somewhat of what I wanted to do with Power Light; I just downloaded it and changed the stuff around and registered it all online. This is my company’s five-year anniversary, by the way. So now I’m working on the next five-year plan. I don’t think my aunt thought I was really going to do it. But I did.
AA16: What have you done with the company so far?
DB: First of all, I got a sponsor from an animation software company called Toon Boom that sponsors me with the software that I need. I have an ad on craigslist for animation, illustration and graphic arts that my uncle manages for me. My uncle first helped me with my first computer, but after that I bought all of my hardware … and some software … all of which I’ve acquired on my own with the money I made from the work I get from craigslist and from winning contests.
I started working with Joey Travolta from Inclusion Films when I was 14 years old by teaching animation to children on the spectrum, and animated a music video called “The Cave” as well as my first animated short “Eeya’s Story.” “Eeya’s Story” is about an autistic boy who saves his people from the Weewoos. I also published my first two books, “Danny and Goliath” and “Richie and Goliath.” I’ve mentored people on the spectrum, training them to intern with me because I really need the help. I just sent my first paycheck to my storyboard artist from Montclair, NJ who is on the spectrum, Justin Canha.
AA16: What is Power Light’s business structure?
DB: My company Power Light Animation Studios is a Sole Proprietorship.
AA16: Also, how many people work for Power Light?
DB: I have eight people working with me, but on a volunteer/mentoring/internship basis for now.
AA16: With many business start-ups it’s sometimes a struggle to make money early on. What have been some of your ways of making money so far?
DB: Through the ads on craigslist ... and word of mouth within the autism community, I’m frequently contacted for work like making logos, illustrating books, and so on. I have to turn away some work at this point since I’m still in high school. I don’t have that much time to finish all the work that I get.
AA16: You currently have hired people to help with your group who are on the spectrum. How has that been going?
DB: Group? You mean with my animation? It’s doing great, I just sent out my first paycheck since it’s all interning before that. I love working with people on the spectrum. We can be really focused!
AA16: Have you found it a struggle to balance working on Powerlight and going to school? You must have some great time management skills!
DB: Working and school is always a struggle. But school is most important. (My school is getting in the away of my career, haha!) It’s always a struggle, and I don’t have great management skills, by the way. I’m constantly working on that, but I get a lot of help from my aunt and uncle for the time management part.They are my team!
AA16: Your first Powerlight Series cartoon was when you were 11. What has been your favorite one you’ve done?
DB: My first cartoon series I created was “Gemstar & Friends,” and I wanted to develop my favorite one which is “The Adventures of Captain Yuron”. So far I have eight different original series plus two spin-offs. However, I soon realized that my own series won’t pay the bills. So that’s why I do commercial work, which is great, because they pay the bills. But it does not leave me any time for my own original series.
AA16: A great thing I’ve noticed about many of your cartoons is that they include autism awareness campaigns. Was this something you always were hoping to do with your cartoons?
DB: I always wanted to make an autism awareness series! I think it would really be cool to combine my two passions—animation and autism awareness. That’s why I think it’s really cool about the book I just recently illustrated and published, “Really Really Like Me.” It’s a book about five characters sharing different autism traits, what makes them special, and to show children on the autism spectrum that they’re not the only ones!
AA16: What do you think are some of the struggles young adults with autism have today?
DB: This year alone, 50,000 of us turned 18, and there are limited job opportunities for people on the autism spectrum. So I really want to show all my peers what they can do to help themselves in the job market. We can be very good at arts and technology. And with the right help we can do anything we want!
AA16: You are about to graduate high school. What are some of the accomplishments you are most proud of?
DB: I’m very proud of my 4.0 [GPA]. I’ve been featured as Student of the Month for Science, which was a surprise to me. I also received a certificate of recognition from the California Legislature Assembly for the La Canada Council reflections program for outstanding Film Production and Visual Art submissions for the 43rd Assembly District and that is for this year alone that I can think of.
AA16: Any tips for high schoolers with autism?
DB: Keep moving forward no matter what and always aim for success. It’s very difficult to do it on your own; it’s best to have a team with you. So don’t ever be too shy to ask for help.
AA16: What’s next for you in terms of education? I know we’ve discussed that you are looking at colleges.
DB: After high school, I’m planning to go to a four-year college that will help me improve my animation skills, as well as the business side of running a company.
AA16: What colleges are you considering and what are some of the things you’ve been doing so far to help you in that process?
DB: I’m considering Woodbury University as my best choice because I’ve been attending there for the past two years. It’s a small campus and it’s close to where I live. I recently applied for financial aid … as well as some scholarships. I’m struggling with my SAT test. I tried to take it with no accommodations—big mistake! I’m going to take the SAT again with the accommodations this time, as well as the ACT. Wish me luck!
AA16: You mention several times both on your website and your videos about wanting to change how the world perceives individuals with autism. Can you explain a bit more what that means to you?
DB: What this means to me is that we want the world to recognize and to bring positive awareness that there is an ability within the disability. We can do anything we want as long we never give up on our dreams. For example, starting an animation business at a young age.
AA16: Who have been some of your influences in your life growing up?
DB: My influences are my uncle, Patrick Eidemiller; Joey Travolta; Temple Grandin; Dori, my animation professor at Woodbury University; Satoshi Tariji; Walt Disney; Hayo Miyazaki; Rich Moore; Bill Gates; Steve Jobs; John Lassetor; Mashrio Sakurai; and last, but not least, Sandra Vielma, my aunt. Just to name a few.
AA16: Any upcoming projects you’d like to share with our readers?
DB: Recently, I’ve been working on a web series called “Oxy and Keke” to promote greeting cards for people with relationship problems, which is something I really know A LOT about!
And I also featured my two animated shorts “Mr. Raindrop” and “The Namazu” at the International Family Film Festival in early May. “Mr. Raindrop” originally premiered at WonderCon, while the “The Namazu” originally premiered at Comic-Con last year. I am the youngest female to ever premiere two shorts at Comic-Con. Cool, right?
Call to mind the greatest struggle of your life. Now, imagine using the material from that difficult time to create a play. “Falling” is just such an endeavor. It's an 80-minute play by Deanna Jent—the Artistic Director of Mustard Seed Theatre in St. Louis and a Professor of Theatre at Fontbonne University—about a young man with autism who struggles with aggressive behavior and the family that struggles along with him. The play is based upon Jent's life and her family's experience. Changes have been made, to be sure; for example, the family in “Falling” features a younger daughter, and Jent's family has two older daughters. But the spirit of the story remains. Jent has firsthand experience with the question, How does a parent care for an explosive child and the rest of the family at the same time? As Jent recalls, “We got to that point where it wasn't safe to live with my son, Andy …. We got self-defense training for the family. We said, 'We wish we could fix this, but right now, we can't.'”
Likewise, during the “talk back” after each of the performances, some audience members express anger at the character of Tami, the mother who insists that her son remain at home. They ask, “How can she keep this boy in the house?” to which Jent replies, “As if there's any place else for him to go? It's so complicated and messy; if there was an easy answer, people would have figured it out a long time ago.” Many in “Falling” audiences can empathize with the daunting challenge of finding appropriate housing for adults with autism.
Recently, Autism After 16 spoke with Jent about the creation of “Falling,” and what the play has to say to the autism community and the world. "Fallling," was developed at Mustard Seed Theatre and won the 2012 Kevin Kline Award for Best New Play.
AA16: First, could you give a quick overview of the plot of “Falling” for those who may not be familiar with it?
DJ: “Falling” is a day in the life of a "typical" family who are caring for a teenage son [Josh] with severe autism. It's typical for them, that is. The first scene is morning routines, things like getting on the bus, getting the day started. In that scene, we learn that the dad's mom, Grammy Sue, is coming to visit for a week, and she's not been there for about three years [since before Josh's aggression and self-injurious behaviors began]. She doesn't know this Josh. She comes in the second scene, and her being there, as well as other things that happen, all throw Josh off of his schedule, and so he becomes aggressive.
The family struggles to cope with Josh's behavior; in fact, the husband, Bill, says if [Josh] has to stay, he doesn't know if he could stay, too; the marriage might be over. And in the end, the mom, Tami, realizes that she has got to let go of the dream of what Josh's life might have been in order for life to go on. She's stuck in this mode of hanging on to that, and she's got to let it go. There's no happy ending, but I think there is hope that, in recognizing the reality and grieving what we need to grieve, then we can move on.
AA16: What prompted you to write “Falling”?
DJ: I have written all my life, lots of bad poetry, and some short stories too. I had some nonfiction essays published, some theater reviews … writing is how I process the world.
And after the very difficult summer, the one in which [my family and I] were looking for placement [for my son] and felt like we were in a war zone every day, when he got back to school I started writing about it. I wrote scenes; I wrote down what had happened. I didn't know if it was therapeutic, or what. So I took [what I had written] to a colleague who is a poet, and I asked him, “What am I doing here?” And he said, “I think this needs to be a play.” And I said, “Well, this can't be a play, it's my life!” But he challenged me to think, “What if?” And I took the challenge.
I decided that what I wanted to do was to somehow create in the audience the experience of having the floor drop out of your world. It's the experience I've had when, for example, I'm walking into a faculty meeting and I get a phone call and it's the police, saying, you have to come and pick [your son] up, because he attacked somebody on the bus today.
Every day, I ask, “Is this gonna be a good day?” [Living with my son's behavior] means walking on eggshells, being on alert. Even when there's a “cease fire,” it's still a war zone. And we're taking the audience on the ride with us through this day.
AA16: Do you have a favorite line or scene from the play?
DJ: Yes. It's the dialogue when the mom is talking to the daughter, after Josh has gotten aggressive, and the daughter says to her, “You gotta get rid of him. He could have killed Grandma.” And Mom says, “No.” And the daughter says, “It only takes one time to be dead.” And she's right. But then the Mom says [to her] what I said to my daughter: “I know that you hate him, and that's okay. You can hate him. But I can't. Moms don't get that choice. Moms just love their kids no matter what.”
That's the core of the play: A parent having to say that to one child that she loves, about this other child that she loves, “You can hate him, but I can't.”
One of the responses I received to the show was that, as one person said, "The problem with this show is that everybody's right. It's easier if everybody's wrong." The grandma's not “wrong” in praying for a miracle. And the daughter isn't “wrong” either; in fact, she's the voice of reason in that house. Even Josh, given the constraints of his world, isn't “wrong.” To express himself physically is all he can do in that moment in time. He's so sad about it after it's over, but it's like he can't help himself.
AA16: How involved were you in the two productions of the play? Did you participate in the casting process?
DJ: I was involved in both the St. Louis production and the New York production, Lori [Adams, the director] was primary in terms of casting, but I was there through the auditions for both shows. Likewise, in New York, producer Terry Schnuck did the casting; it was his choice, but he was interested in our input. And as it happened, we were all in agreement about casting.
AA16: Did conflicts ever arise during the production, due to the physical and emotional difficulty associated with the storyline?
DJ: All of the actors really embraced the challenge head on. The actor playing Josh immediately immersed himself in [questions like], What does this look like in the world? I showed him videos of my son, and he did a lot of research on the physical manifestation of aggression. But the key for him was asking, “What's going on this character's head? If I was a person fascinated by visual stimulation, and I didn't have a lot of words, and I lived moment by moment just reacting to things, what would I do?” He put himself into the character.
And the aggression sequences were completely choreographed and safe, thanks to Rick Sordelet, our movement and fight director and choreographer. He had us do [the sequences] in slow motion, then speed it up. There are some amazing theater tricks; it looks so dangerous, but it's really very safe. I also had time to do a mini-lesson in behavior management techniques with the actors in both productions, because all of those techniques influence the way the characters speak. That behavioral focus on life influences everything you do. For example, they understand why, when they see Josh touching himself, his dad immediately says, "Hands up! Clap hands."
AA16: What has been the most challenging part of the production process for you personally?
DJ: Reliving the journey with the actors is … well, I know the show, I know what's coming, but still, when it gets to the “loss of the dream” moment for the mom, that's a really raw moment for everybody in the audience. But whatever the challenge of going through that emotional journey is, it is completely countered by the joy of sharing this story and of telling this truth. Because this isn't something they'd show on “Night of Too Many Stars.” This is not the wonderful girl who sings with Katy Perry. This is the flip side of that.
I don't think [“Falling”] is gonna be a Broadway blockbuster, but for those people who see it and see their story being told truthfully, that's the joy for me. Because we feel like we're alone [when we're dealing with situations of aggression and self-injury]. We can't have friends over.
Once, someone at work said, “Hey, how's your day?” and I said, “It's a good day, I haven't been punched in the face.” The other person thought I was kidding, but I was serious. But then there might be many days in which [my son] is this happy, loving, hilarious person to be around. But the aggressive stuff, at least in the moment [when it occurs], trumps that.
AA16: In the play, what's the younger sister's biggest challenge? What's the toughest thing for her about having a sibling with such severe autism and behavioral difficulties?
DJ: The sister's biggest challenge is the love triangle, wherein she loves her parents; she knows her parents love her; she hates her brother, but she knows her parents love her brother. She's feeling like she can't honestly express what she feels or what she wants, and on top of that, she's a teenager. She's 16. At 16, of course you want to fit in with your friends. Of course you want your parents to come to all of your school events. But then she comes home to life in this house, and what that does to the family life.
AA16: How is your son, Andy, doing today? What are some of your hopes for him and his future?
DJ: He's 18 now, and about a year ago his neurologist adjusted some medications, which really helped to get rid of a lot of the aggressive and self-injury. We went from a semester of school with two or three aggressive incidents a week, to two or three aggressive incidents in the entire semester. It was amazing. It also helps that he's 18, and moving out of the throes of the hormonal imbalances.
At home with us, he's the happiest guy in the world as long as the world revolves around him. (Aren't we all?) He loves his videos, he loves having life all arranged. I love that he knows calendar stuff; he understands and remembers things on the calendar. For example, one year, on Labor Day, I took him on a train ride. The next year, two months away from Labor Day, he looked on the calendar and said, “Train ride!”
AA16: Any final reflections on the play, or thoughts to share with AA16 readers?
DJ: The thing that I've realized is that, even though I wrote a play about a very specific family, the play is really about loving someone who's hard to love. And that's a universal thing; we all have that in our families somewhere. It might be us! Whether it's a personality thing or illness or addiction or aging, it's about how we handle the situations of caring for and loving someone who's hard to love. That's a crisis that I think everyone's heart can empathize with. And the theater can bring us all together and tell us stories that show us we're not alone.
Laura Shumaker is an author, consultant, writer, autism advocate, and proud mother of an adult on the autism spectrum. The video above features Laura’s book, “A Regular Guy: Growing Up With Autism,” in which she discusses her son Matthew’s journey with autism over the years. Some of her other writing has included her work as a blogger for The San Francisco Chronicle. In addition, she is a public speaker who has given presentations to schools, book clubs, parent groups and other organizations, sharing her experience to help others. Autism After 16 recently had the opportunity to talk with Laura about what she’s doing today.
AA16: Thank you so much, Laura, for taking a minute to talk with us today! How is everything going? What have you been up too recently?
LS: Things are going well! I continue to write essays about my experience as Matthew’s mom (here is one I just wrote that I am proud of), speaking to groups about issues that face families and individuals with autism, and also educating teachers about autism from a parent’s perspective.
AA16: As a big fan of yours, can you tell me more on what led you to write your book, “A Regular Guy: Growing Up With Autism”?
LS: When Matthew was about 15, my husband and I made the heartbreaking decision to send him to a residential school, something we thought we would never do. When I got home after dropping him off, my friends acted like they were happy for me! I decided I needed to write about my experience as Matthew’s mom to educate my family, friends and community. Eventually, I organized all of the stories that I wrote into a book. I am so happy that it has been so well received.
AA16: When did you start blogging for The San Francisco Gate (SF Gate)? Can you tell us what went into the decision to join their organization?
LS: I wanted to raise awareness and offer resource information in the San Francisco Bay Area—not only about autism but other disabilities. As Matthew transitioned into adulthood, I realized that there were a lot of parents like me who needed information and support. I was so lucky that SFGate gave me the opportunity to share my experiences and information. A lot of the stuff I was writing seemed to resonate to the broader community.
AA16: I read one of your recent posts on SF Gate, “15 Things You Should Never Say To An Autistic,” and I was very intrigued by Number 12 that says, “You mean you are a person with autism. You are a person first, not a disability or a disorder label.” In regards to the debate that sometimes comes when discussing “person with autism” versus “autistic Individual,” do you think it’s important for people to respect both party’s preferences?
LS: Absolutely! I also thing it is wonderful that articulate self-advocates like YOU are speaking up.
AA16: I know your son Matthew has been a huge influence behind your writing. Can you tell us a little bit more on what’s he up to today?
LS: Matthew is doing just great. He is 26 years old now and living in Camphill Communities California. He is working and training in landscaping and biodynamic farming. Matthew used to have aggressive and impulsive behaviors and doesn’t so much anymore. He is very verbal and loves traveling and singing. He has joined a church, and really wants to find a girlfriend! He does have a lot of great friends now, which is huge. I am so proud of him.
AA16: What do you think is important for parents to know about having a child with autism today? Looking back, what is one thing you wish you knew when first finding out about Matthew’s diagnosis?
LS: When Matthew was young, not as much was known about early intervention, and we tried all this weird stuff. Parents these days are lucky to have evidence-based interventions that improve outcomes. When Matthew was first diagnosed, I had no idea how much I would learn to love and accept and ENJOY him. I also wish I had known to get help/support earlier. It seems to me that there is so much more support available these days and that is wonderful.
AA16: As an adult with autism, I’ve been somewhat skeptical about our community’s progress in regards to adult services. How do you feel when it comes to this topic?
LS: Kerry, this is a topic I am very passionate about and I am working hard to build more resources. In out area, we have AASCEND (Autism Asperger’s Syndrome Coalition for Education, Networking and Development). In addition to monthly meetings, AASCEND has a Job Club that is very active. I also think it is important to create housing and community/social opportunities for adults with autism. What I love about Camphill for Matthew is that it has a built-in and natural circle of support and community. I would be so happy to do more in this area.
AA16: Tell us a little about Matthew and what he was like growing up. What were the greatest challenges during those early years?
LS: Matthew was a dreamy little boy who would all of a sudden bolt away from me when I least expected it! I really had to be on my toes. He was the same way in school, and it was very hard to get him to focus. The impulsive behavior was a problem, too. It took a scary turn when he was going through puberty and he became aggressive and very difficult to keep track of. Through it all I think the greatest challenge I had was balancing his care with that of my two younger sons. It was so important to me that they get the attention that they deserved.
AA16: What were the factors that contributed to the decision to send him to a residential school?
LS: Sending Matthew to a residential school was the last thing that I thought I would ever do. But the aggressive and impulsive behavior that I mentioned earlier was such a worry. In one instance, Matthew ran into a young boy on his bike, (while we thought he was resting in his room) and the boy broke both legs. We didn't even hear about it until we got a letter from the boy’s attorney a few months later. It became clear that Matthew was not safe in the community where he grew up, and that his behavior was putting others in danger.
AA16: Why did you choose Camphill Communities for Matthew? What made this a good fit?
LS: We actually looked for schools in California, where we live, but at the time the only schools that were available would require Matthew to live in a group home. This was a worry since Matthew was a wanderer. A consultant told us about Camphill. When we went to visit, we liked the fact that students lived in houses with families and co-workers were typically developing and dedicated to service. Matthew would be cared for, but he would work alongside members of the community, disabled or not. Camphill's philosophy is that individuals with disabilities tend to be taken care of all of their lives. Their ability to contribute to a community is enriching and restoring.
AA16: The Camphill website states that its communities are "inspired by the anthroposophical teachings of Rudolph Steiner." Could you tell us what this refers to and what it means?
LS: Anthroposophy is the spiritual scientific understanding of the human being given by philosopher, scientist, and educator Rudolf Steiner, Ph.D. (1861-1925). Anthroposophy embraces a spiritual understanding of the human being, based on knowing rather than faith. Anthroposophy is the wellspring for Waldorf education, biodynamic agriculture, and new frontiers in science, the arts, sociology, medicine, and curative work. In Camphill Communities and Schools believe that:
AA16: What helped Matthew learn to manage his challenging behaviors? Were there specific interventions that you think were especially helpful or do you think self-management came with maturity?
LS: So many things contributed to helping Matthew learn how to control his behaviors—behavior plans, positive reinforcement, ABA, floor time, psychotherapy, medication, the list goes on! Matthew and everyone in his circle of care continue to work on behavior. There has not been one specific thing, but ability and maturity come close!
AA16: What kind of adult services does Matthew receive through the State of California?
LS: Not that many people have financial resources to afford this residential care (including us!). I'm not sure about other states, but the Matthew is a client of the regional centers of California, under the Department of Developmental Services. As such, he qualifies for funding for his Supported Living Program at Camphill California. When he went to Camphill Special School, our school district paid for the educational portion of the tuition and the regional center paid for the residential portion. Camphill Schools and Communities are nonprofit, so they count on contributions from parents who are able and fundraising is important!
AA16: What thoughts would you have for parents who may not have access to quality residential programming?
LS: I would say that if parents do not have access to residential programs, or if it is not their choice, they should:
AA16: Any concluding thoughts you would like to share with our readers?
LS: Just that I admire my son Matthew so much. I feel so fortunate that I’ve been able to connect with so many great people like you through the work that I do! I’m also very proud of my other two sons, Matthew’s younger brothers John and Andy. They are so kind and encouraging with Matthew, and they make him laugh. God bless them!
“We need to understand that all children with autism grow up,” says the narrator in the documentary film “The Changing Face of Autism.” This is a fact with which the film's co-executive producer, Lynne Duquette, is all too familiar. Her son, Sam, is on the autism spectrum. Three years old when filming began, Sam is now a 16-year-old. “The Changing Face of Autism,” which premiered in 2008, was the result of six years of collaborative effort by the production team.
Along with Lynne Duquette as the visionary and co-executive producer, the team included Raoul Peter Mongilardi as co-executive producer and John Chisholm as director. The film features interviews with families of individuals on the spectrum, as well as medical professionals, educators, therapists, and other key players in the autism world. Though the film highlights the need for early intervention services, it also looks forward to the future, reminding viewers that individuals with autism need support and services for each stage of their lives.
“The Changing Face of Autism” was nominated for the 2009 Voice Award. Autism After 16 talked to Lynne Duquette about the film's message, and Duquette's life with her son Sam.
AA16: As a parent, what were you hoping to communicate to other parents and families of individuals on the spectrum through this film?
LD: I made the film so that other parents wouldn't feel so isolated. [Isolation] was my overall feeling during not only the diagnostic process, but in trying to find my way through all of the different avenues presented as things that would help Sam. [When your child is diagnosed with autism], your life turns upside-down, and you become very one-dimensional.
At the time, I didn't have the inclination to seek out a support group. In retrospect, I'd say to parents that the first thing you should do for emotional support (and a wealth of information) is seek out a support group.
I also made the film to honor the people [therapists, teachers, caregivers] who tirelessly continue to help individuals with autism. It takes an enormous amount of patience to do what they do, and often there's no immediate gratification. Yet these people devote their lives to helping these individuals, and I don't know what we would have done without that kind of dedication.
AA16: What led you to make “The Changing Face of Autism”? Did you have previous experience working in film?
LD: I am an actress (mostly commercial talent), and I have a strong journalism background. I like to write, and I like to tell stories. I was studying journalism at the time of my son Sam's diagnosis, and the idea to do the film came because I read an article in the Los Angeles Times that profiled the families that ended up in the film.
Because I was so isolated, I thought, “Wow, these people are having the same experiences that I am!” It [the LA Times article] was a well-written piece in terms of the facts, but I felt unless someone was intimately connected to the material, their eyes would glaze over. I felt it would be more impactful to show the family members talking, to let others hear their voices. I wanted to bring them to film ... to make them seem more real.
And, as luck would have it, one of my neighbors, Raoul Peter Mongilardi, has his background in TV, in production, and another neighbor of ours was John Chisholm, a TV writer and director. One day, after an earthquake, we were up on the roof of our building, and I was so frustrated after an IEP meeting with my son, and he [Rauol] said, “You should tell this story.” And that's how our collaboration began. The three of us just happened to have the three components necessary to make a film, and our proximity [to one another] was definitely a key.
Once we had this idea for a film, I reached out to the participants in the article, and one by one they said yes [to our interview requests]. When Dr. Ivar Lovaas returned our call, it was really exciting, as though the President of the United States had agreed to an interview!
As we filmed, one parent could finish the next parents' sentence, and I could see a story unfold. It was a double-edged sword: I was so happy but to make the movie, but sad that I had to.
AA16: How does the film fit with the way in which many adults with autism see their experiences—that is, not as something to be cured, but as a difference to be embraced? For example, in the film Ivar Lovaas talks about "building a person" where there was none.
LD: With regard to Ivar Lovaas's statements: I found them to be helpful in breaking down what parents could not articulate to those who may not know the process of how to create the learning patterns necessary for adaptation and ultimately, success in the world.
Knowing that he has dedicated his life's work to unraveling the mysteries surrounding autism in a skeptical society, I am confident he meant no harm or disrespect and most certainly did not mean to say that a person with autism doesn't exist. Rather, that the pathways for learning did not exist. He appeared [in the film] as an expert in the field of research of autism.
That being said, I don't think there is a person affected by autism who doesn't cherish every milestone and victory and embrace their situation. Thinking has evolved since those statements … It was my experience, and the experiences of those whom I chose to help us. If someone could relate or not feel so isolated in their quest to help their child, [then I'd have achieved] my goal.
AA16: Can you tell us about the "change" referred to in the film's title?
LD: We chose "The Changing Face" because [of the realization that] it wasn't someone else's child’s face—it was my child's.
AA16: The film has a strong advocacy component in terms of raising autism awareness and improving quality of life for individuals with autism; how has the film aided in advocacy efforts?
LD: I started making the film during a time in which I was angry because it didn't feel like anybody knew anything [about autism]. Doctors, educators, psychologists … they were all pointing fingers at one another.
In terms of an advocacy message, I feel like if you watched my film you'd get the sense that you have to trust your gut. This isn't a how-to movie, it's a how I did it movie, meant to keep you going. It's not easy. I struggled, because I didn't want people to feel like I was telling them what to do. In the film, I focused on the experts that I used and trusted. I wanted to show people the advice that I listened to. I showcased the pieces of my puzzle.
The participating families were also a big factor, since each family has a different dynamic, and they have different roads to navigate. I wanted to show the diversity of how autism affects people.
AA16: What do you think has been your greatest challenge to face as your child with autism became an adult?
LD: Because of the fact that you wouldn't instantly recognize Sam's disability, I'm not sure he'll be treated appropriately in certain situations. I want him to be understood, to be protected, to sense danger. I want what anyone wants for their child, for them to be happy, healthy, and successful.
The challenge is helping him keep up with this world that goes so fast. The world doesn't move at his pace, and he doesn't move at the pace of the world. He has so much to offer, but in this world, it's really hard for people to just slow down and listen. Only someone who has autism can understand how much others have to slow down, how tough it can be to switch gears.
AA16: What's been the greatest joy of being a parent of a young man with autism?
LD: My son is now one of the fastest swimmers on his high school swim team; he's also run two triathalons. My joy is that he's been able to participate on a team the team, that they accept him and love him. When my son achieves camaraderie, that is my greatest joy. He was alone for so long.
AA16: In your experience, how can parents like you to prepare themselves and their children for times of transition?
LD: I do have a philosophy of transition, one that's been immensely helpful for me. Here it is: The transition [from teenager to adult] is the cornerstone of their adult success. And this [Transition] is a time when there are still so many supports in place, a network, a net. When you're faced with a decision about how much or how little independence you should give [your child], you have to imagine … imagine [your child becoming] someone who doesn't get to have the experience of trying it on his own.
So I think to myself, Now is the time to make the mistakes. Now is the time to err on the side of giving [individuals] more independence. I know Sam craves it. He's in a school that's fantastic, and he has a lot of support, and he's blossomed. I struggled with [giving him greater independence], saying to myself, “But everything's working! I don't want to change anything!” Yet if you don't do it now, it's so much harder later.
AA16: What resources have been most helpful to you as a parent of a teenager on the spectrum?
LD: I looked everywhere for something to make sense. In 2003, the Internet was not like it is now. I downloaded medical literature, but it was all jibberish [to me].
[When I found] the book “Let Me Hear Your Voice” by Catherine Maurice …. That was the first time I felt a kinship. I don't know how this woman did it, but she gave me the groundwork for our lives; she showed me how it was going to be. It was a roadmap. It outlined how much work it was going to be [to raise a child with autism and do therapy], and that actually made me determined to enjoy the experience.
I think the best that you can hope for is to enjoy the moment ... to learn to live with this new situation, to accept it. I just invited autism in and decided to make it a part of the family.
AA16: Was there one thing that stood out about the experience of making “The Changing Face of Autism”?
LD: I think what stands out was the day that Sam was old enough to understand that I was making a movie about him, that I was proud of him. And he gave me the OK to share his experience with the world. He gave me his blessing. He gave a speech at our premiere, and he said, “I want people to have a good life like me.” I was in tears for days.
AA16: What's the most significant lesson you've learned as you've journeyed with your son?
LD: He has definitely taught me. He has taught me everything I didn't know.
Keri Bowers and her son, Taylor Cross, are on a mission to destroy society's definition of “normal.” In the process of co-producing their groundbreaking documentary film “Normal People Scare Me,” Cross, a young man on the autism spectrum, interviewed 65 individuals with autism. Bowers, who created Normal Films and continues to produce, is also a public speaker, workshop leader, and nonprofit advisor. The interviews in “Normal People Scare Me” are a portal to greater understanding of how individuals on the spectrum view the world. (And yes, unanimously, individuals with autism agreed that normal people do, on occasion, scare them.) Autism After 16 talked with Bowers to learn more about the making of this unique film.
AA16: What led you and Taylor to make “Normal People Scare Me”? Whose idea was it?
KB: The film was Taylor's idea. I had always used the arts to encourage Taylor to emerge. When he was eight or nine, I put him into community service, thinking that that would help him. At first, he was too involved in himself and his own needs to see other people and their needs, but every year, as he did more, he became more able.
When Taylor was 14, he said, “This year, I want to pay for a gift for families who are less fortunate at holiday time.” And I said, “OK, great. What can you do to earn money? You can clean the swimming pool.” And he said, “ No. I want to make videos and sell them.” So that began the conversation. I tried to convince him of all the reasons why it wouldn't work [to make a film], I said no … and then I thought: This is my son, the one they said might never walk or talk. So I said, “I'm sorry, Taylor, everything I just said was a lie. Let's make a film.”
[“Normal People Scare Me”] began as a 10-minute student film [with mentorship from Joey Travolta, who Cross met through Travolta’s workshop on filmmaking for individuals with special needs] and later turned into full-length feature. The 10-minute short received attention from major publications and from the Internet; people wanted to buy it. From there we decided to make the full-length film [with Joey's technical assistance and mentorship]. I asked Taylor, “You interviewed five people [for the short film] … what if you could interview more people and get a more in-depth perspective?” And he wanted to do that. In the end, he interviewed 65 people.
AA16: How did you and Taylor select interview subjects for the film?
KB: We definitely had to do outreach for our subjects; I probably knew 10 of the subjects. We put [a request] out on the Internet, saying, “We want to hear your stories.” What was really hard—and this is the one negative comment we've received—is that there aren't enough people [represented in the film] who have no language. There was a reason for that: We didn't have the skill set to communicate effectively. The film features a half-dozen people who are nonverbal. It was something Taylor didn't feel he was able to do. And, since this was a joint venture, he had to agree and I had to agree.
AA16: In an interview about Taylor's early years, you say, “I thought I was just somehow a bad mother.” How did you move past the self-blame?
KB: Well, the early blame was fed to me, in writing: “Mother's failure to bond caused deep psychological distress.” Taylor wasn't diagnosed until he was six; the DSM-IV had been rewritten so he could be diagnosed. I had been widowed prior to Taylor being born, and I'd had a childhood without a lot of maternal support. I had issues as a young girl of self-esteem, and so when these doctors told me that I wasn't bonding with my son, it was my biggest fear come to life. My biggest fear was that I wouldn't bond with my son the way my mother hadn't bonded with me.
How did I overcome it? There was no Internet, no listing in the newspaper for “a group for moms with unusual children,” so I began to make things up in art. I began to use paint, photography, filming, and dance. I'd been an artist my whole life.
For the first year, it was hard for me to fall in love with [Taylor]. I loved him, but I didn't feel those “pink fuzzies” because something was “wrong with him.” I had fears of him dying, and getting too close was just too unbearable for me.
One day, a neurologist said to me, “I can't tell you if Taylor will walk or talk.” That night, I was ... crying in my pillow. I asked God, “Why me?” The answer came back, “Why not you?” And when I woke up in the morning, I felt madly, wildly, crazy in love with [Taylor]. And I said to myself, “If this is our life, then I accept that, and I'll do anything and everything I can to make this work.” I realized I had to work on my self-esteem issues, my fears, my guilt … all the things we take on when we're attempting to overcome the death of a dream.
AA16: Was it challenging to work with Taylor on this film? Were there times of frustration in the creative process?
KB: There definitely were times of creative frustration! When we did the 10-minute film with Joey, it was more Taylor's gig than it was mine. I was there every step of the way supporting him, but once we decided to make the feature film, I had to pay Joey! I had to explain to [Taylor], “Once you're in you're in. Mom's putting money into this.” It became a contract with us!
There are examples of [moments where Taylor struggles to continue] in the film, when he's sitting and sifting sand, not wanting to interview people. There were times when he didn't understand what people were telling him, and how to have patience with the process. It was all part of his story.
AA16: In the film, when Taylor talks about all you've done for him, the first thing he mentions is his freedom to go out and interact with his community. Can you tell us about this decision to allow Taylor the dignity of risk?
KB: It was very methodical, and it was very scary at times. When Taylor was about 10, he met his friend Vince; he was introduced by his coordinator. And this young boy had a single father, and [the father] started to go along with my ideas [about the dignity of risk].
[The father and I] would sit on the porch, and say, “OK, boys, to the corner and back.” And we would watch them. And once they had done that so many times, we'd say, “To the corner, around to the stop sign and back.” And once they'd mastered those small things, we began to give them independence on par with their neurotypical peers. For example, we would drop them off at the movies and wait outside. It took four years of little by little by little letting them go out of our sight.
Again, it wasn't always easy. Once [Taylor] lost track of time, and he had five police cars looking for him. It came with very scary moments, but it's so important to let [individuals] fall down and get up.
This does not apply to every child. There are children who don't understand dangers. However, even children who have fine motor skill issues or no language, it doesn't mean they can't help make the PB and J, hand over hand. Even if the laundry turns pink, they can take some personal responsibility for the chores of daily life. We're a fast society, we want results now, and it takes time.
AA16: In the film, you mention that it's more difficult for adults with autism to go out into a world that isn't as accepting of their idiosyncrasies as it is when they are children. How can parents help their children prepare for this change?
KB: When they're young, there's more of that “Aha Moment” [when strangers realize that a child has autism]. They see the meltdown, the lack of verbal skills. But when the kids go out in the community and appear as normal adults, there's no “Aha moment.” [People] form an opinion after seeing bizarre behavior, and it's a more negative opinion. Taylor is 6' 10” … people have a higher expectation of him!
Some people think we shouldn't tell our kids that they have autism. Here's how I see it: The world is going to tell them eventually anyway. Our children need to go through those stages of grief and recovery. Our children find acceptance when we teach them this lesson: All kids are different. And these things can make life harder, but you need to know that's you being uniquely and beautifully you.
Once, I asked Taylor, “Do you think people see the autism when they look at you?” And he said, “Mom, they can't get over how tall I am.”
AA16: As a sibling of a young man with autism, I loved that you included an interview with Jace, your younger son and Taylor's younger brother. What do you think has been the most challenging aspect of their relationship?
KB: They could not be in the room together for nine years, before they bonded. Jace is very talkative, and his brother couldn't talk to him, and for years felt like Taylor dismissed him, and decided that he hated him. But when Jace was nine and Taylor was 14, Taylor handed him some Yu-Gi-Oh! cards and taught him how to play. Taylor began to open up a little more, and Jace began to understand more.
I don't like to see it as a burden, but Jace understands that after I'm gone, he's it. He's Taylor's family. Siblings are often the [autistic person’s] most long-lasting relationship, and so we have to nurture [those siblings'] souls and foster their understanding. We have to understand that they go through a lot of pain, and they internalize it more often than not. We have to be purposeful with siblings. We have to accentuate that they matter as much. Their needs are different, but they matter as much.
AA16: When asked the question, “Do normal people scare you?” the young adults with autism say, “Yes.” If you could give one piece of advice to neurotypical individuals in interacting with adults with autism, what would it be?
KB: I think the main advice would be to listen louder. To remind themselves that nobody's great at everything, and equate your challenges in some small way to what others [with autism] face.
I have a one-minute staring exercise I do with audiences, during which I ask, “How many of you are uncomfortable?” Most find it uncomfortable. Next, I say, “Imagine if your minute was never up. Imagine if every day of your life, you had to be in a situation where the world is coming at you and you can't just look away.” I try to help people feel what special needs feel like, what autism feels like. Remember a situation where you felt vulnerable or unsure of yourself, a time when you couldn't communicate and got frustrated … and see [a person with autism] as a person who experiences that all the time.
I think that if everybody put their children into community service—into some giving toward others that have unfortunate circumstances—I think that we would become more compassionate human beings. And we find a greater level of acceptance when we are compassionate human beings.
Imagine a space filled with sunlight, a modern cathedral of glass. The unexpectedly lovely interior is part of the Johns Hopkins University Montgomery County campus in Rockville, Mayrland, and from April 2 through June 1, 2012, it is also the home of an art installation sponsored by The Madison House Autism Foundation entitled, “Autistic. Artistic. A Life Ahead.” In the words of JaLynn Prince, co-founder and president of The Madison House Autism Foundation, “The thing that was so remarkable about [the opening of the show] was that people didn't want to leave. They had to usher us out, because the building was going to lock electronically, and we would have been shut in for the night!”
I can understand the sentiment. Though Prince and I have just a few minutes to walk through the installation, I, too, am reluctant to depart. Prince's fine arts background comes to the fore as she describes each of the artists' works on display; her stories make the soaring space seem more personal. The extra space was necessary, as the opening night of the exhibit had approximately 150 people filling this area. Guests included artists on the autism spectrum, parents, autism advocates, and local community leaders. The exhibit featured original paintings, mixed media pieces, and jewelry by autistic artists.
The “Autistic. Artistic. A Life Ahead.” exhibit can be viewed as a small-scale model of what the Madison House Autism Foundation hopes to achieve through their work. The Foundation’s task is twofold: to raise awareness, and design and build new, supportive societal structures for individuals with autism and their families.
The Seeds of Change
The Madison House Autism Foundation's mission for change is far-reaching, yet like so many nonprofits, the seeds were sown at home. In Prince's words, “The Madison House Foundation began because we had a son [Madison] on the spectrum. We wanted to step forward with our lives' experience to help [others]. We'd originally thought we'd do a school, but then, when we did a survey, we found that adults on the spectrum is an area that's been highly neglected. It also happens to coincide with the age of our son; he's graduating from high school at the age of 22.”
Prince's initial idea for a school for individuals with autism has transformed into a kind of school for society. The Madison House Autism Foundation seeks to provide hope, guidance, and effective solutions for adults with autism and their families. The emphasis is on providing choices, creating a world in which adults with autism are welcomed and included in every area of adult life. Begun in 2008, the Foundation focuses on projects that, in Prince's words, “...could bring great peace to parents and grandparents [of adults on the spectrum]. We love to have [family members] channel energies in our direction.”
As families like Prince's know, simply trying to understand the existing system of services for individuals with autism can be a daunting challenge. As Prince says, “We're fairly informed people, and we've found the difficulties of navigating the [government] system, and have encountered many across the country who have had similar difficulties. People are concerned with what's going to happen to their adult children when they're no longer around. We're working to formulate a plan where individuals on the spectrum can have long, productive lives.”
As such, the current art installation connects to the Madison House Autism Foundation's mission in that it is both a celebration of individuals and a showcase of talent. It is an open door for the possibility of career options. This balance of the emotional and the practical is one that the Foundation strives to strike. Though Prince and her colleagues were motivated to begin the Madison House Autism Foundation because of their personal relationships with individuals on the spectrum, they make it clear that the work that they do looks beyond individual relationships and into the realm of the abstract. As Prince says, “We're not a care provider—we're kind of an architect. We're trying to draw up plans to see what the building [the structure that supports adults on the autism spectrum] can look like in the next 60 years. We use the idea of 60 years, because from the age of 21, it's 60-plus years in a typical lifespan.” Given the number of young adults with autism who are transitioning into this “next phase” of their life and aging out of support programs, the need for new societal structures is clear.
Person-Centered on a Larger Scale
Why choose to be an architect of the abstract given that there are such tremendous, concrete day-to-day needs at hand for adults on the spectrum? Prince and her colleague Adrienne McBride know firsthand that parents and caregivers expend a great deal of energy simply getting through each day. Prince recounts the period when her son Madison went to camp for the first time two summers ago. In the hushed, awed whisper that caregivers know so well, she says, “We had six weeks! [My husband and I had] six weeks of going out whenever we felt like it, of choosing a restaurant by ourselves ...” Even as her organization focuses on larger questions, Prince recognizes the importance of smaller-scale ones, such as practical support and respite for full-time caregivers.
Likewise, McBride tells me, “That's the main thing I see across the board, when I talk with parents; they are tired. And I don't mean tired as in simply physically tired, though that's true as well … I mean that they are ...” She trails off, searching for the right phrase.
“Deep-down tired? Soul-tired?” I suggest.
“Yes, exactly!” she exclaims. As a sibling of a young man with autism and a former full-time caregiver for adults with intellectual disabilities, I know just what she means. In that spirit, I can see how a group of people devoted to the larger questions of autism in our society offers parents and caregivers a ray of hope (and a modicum of relief) amidst the myriad of daily struggles they face.
Given the scale of their work, Prince is careful to note that the Madison House Autism Foundation continually seeks input from parents and caregivers. Recently, for example, the Foundation welcomed three roundtables of parents to offer feedback on their newly redesigned, interactive website. When I ask whether the Foundation's approach arises from a person-centered perspective, Prince says, “We want to be person-centered in the sense of looking at what is happening across our country. We need to provide information so parents don't feel as alone. We want to connect with a whole lot of other people across the country, putting people together, in a gigantic dot-to-dot.”
In that spirit, the Foundation is working on several significant projects. First, the organization is involved in adult autism research. Says Prince, “We still don't have enough research on what happens to the adult with autism as they age.” Next, the Foundation is collaborating with universities to formulate educational programs and curricula for individuals on the spectrum, in response to the growing need for continuing educational programs for adults with autism. Prince speaks with excitement about working with universities to “identify professions that have never been identified before.” The Madison House Autism Foundation also directs families to financial planning and recreational resources, helping to answer questions related to housing. They continue to evaluate models from communities across the country that include farms, houses, apartments, and other community-based care models.
Prince mentions several practical societal shifts that need to occur for the world to fully welcome, include, and support adults with autism. These changes include advocating for medical school curricula to educate their physicians on the needs of individuals with autism. As Prince says, “If somebody can't stand a blood pressure cuff, loud noises, florescent lights, changing into a [hospital] gown … it sounds trivial until you're with someone who is having a total meltdown, someone who needs medical care and can't get it because the people who are trying to give care to that individual don't know what to do!” Thus, the Madison House Foundation is also working to inform and educate first responders in their local community. Likewise, Prince suggests changes such as having “quiet areas” in Emergency Rooma to help individuals with autism dealing with sensory overload, and limiting the use of sirens and flashing lights unless they are absolutely necessary.
The overarching theme to the Madison House Autism Foundation's work is that of structure—they hope to help articulate what the next generation of supported living might look like. And, in collaboration with other thought leaders in the autism world, Prince says, “We're going to have to call in a lot of good people to help reinforce that structure.”
Support for Families
Additionally, the Madison House Autism Foundation has begun a Parents Network, which Prince calls “a fledgling project.” The Foundation is in the process of editing videos of parents detailing their experiences, which will serve as encouragement and support to parents across the country. In the past, Prince says, “We took a series of stories that parents had sent us to the White House, and they ended up on some important desks. We did it to put a real face on what autism is.” Likewise, the Foundation's new website features an area for parents, siblings, caregivers, and individuals on the spectrum to share their stories. Future projects include a video series from a writer who is a parent of a son on the spectrum. In Prince's words, the series will be, “… a real-time view of what it is like to have a son graduate from high school who is on the spectrum, and what he will be facing. [The writer is] going to be very open about the recommendations that are made to her, the ones that succeed and the ones that fall on their face. Every few weeks, she'll write in in real-time, so other parents can see what [they're] going through.”
When I ask Prince for her recommendations for parents of individuals on the spectrum, she suggests that parents, "… get a circle of friends together and talk to them very frankly—and maybe do this every couple of years, so they know each other, they know your child—and say, 'I don't want it to fall on any one person, but if something were to happen, would you be part of our son's community? Something as simple as sending a card, or as big as looking out for his welfare.' Nothing makes a parent happier than to know that somebody thought of their child.”
Other practical recommendations from Prince include investing in wise financial planning early on; looking into trusts; and bringing people who can be trustworthy caregivers. On the whole, Prince counsels parents, “Be informed but trust your own instincts.”
Ongoing Challenges, Dreams for the Future
The challenges that The Madison House Autism Foundation encounters are tied to those faced by parents and caregivers. Both Prince and McBride mention the difficulty of engaging parents and caregivers in conversations about the future, given the time and energy it takes for caregivers to work with the immediate things at hand. As Prince says, “When a parent has had an autistic child, and they've had to worry about bedtime, foods, school … how do they look to what the next phase is going to be? When parents are facing that lack of [societal] structure in addition to everything else, it's really challenging.”
As such, a major part of the work of The Madison House Autism Foundation is to help families and individuals to move closer to a life of fulfillment for each individual. As Prince says, “I believe that the biggest tragedy in the world is when human potential is not realized. This is whether someone's on the spectrum or not. [I believe in] the idea of helping those that are on the spectrum reach their fullest potential, whatever that may be.”
Realizing potential is a challenge in a world where autism services are insufficient and limiting beliefs abound. Even so, Prince sees the "Autistic. Artistic. A Life Ahead.” show as a part of what will transform our world. “The art show brought people together; you could see misconceptions almost shedding off of people's shoulders. It was an experience understanding more about autism, and themselves in relationship to autism. If I could have a national art show, and salt and pepper it with conversations about autism, the world could relieve itself of a lot of fear and move forward in a positive way.”
“It Would Be Great for Us Not to Have to Exist!”
When I ask Prince if she considers the Madison House Autism Foundation a replicable model for other communities, she encourages a larger view, and arrives at a surprising conclusion. In her words, “If there's other Madison Houses that's fine, but why don't we all define what we're doing, do the best job we can, and then fill in all the gaps? Let's learn from each other, and then we can move things forward faster. If we can have this national conversation—if we can get institutions, legislation, universities all working in a good direction for adults with autism—ultimately, it would be great for us not to have to exist!”
A nonprofit that looks forward to a future in which it might not need to exist? An organization that's both person-centered and ideological? The Madison House Autism Foundation seems a study in contradictions, yet this seems fitting for an organization that deals with the paradoxes of autism on a daily basis. This being the case, when I ask Prince about the best part of her work, I'm not surprised by her answer: “Having quiet moments, looking at my son, and thinking that maybe the future will be better for him and the other Madisons out there.”
The Madison House Autism Foundation welcomes family involvement. Please visit the Parents page of its website to learn more.
The "Autistic. Artistic. A Life Ahead." exhibit is on display at 9605 Medical Center Drive, Rockville, MD 20850 from April 2 through June 1, 2012. Visit The Madison House Foundation website for more information.
What happens when a group of young people with autism set out to do the impossible; that is, to stage and star in a full-length musical? “Autism: The Musical” is director Tricia Regan's answer to that question. Released in 2007, the documentary film follows individuals with autism who star in the show. The film also shares the stories of their parents, as they support their children in this challenging endeavor.
“Autism: The Musical" centers around the Los Angeles-based The Miracle Project, founded by Elaine Hall, an educator, writer, and coach. The Miracle Project seeks to empower individuals with autism to express themselves through the performing arts, and “Autism: The Musical” is an inside look into The Miracle Project's first production.
“Autism: The Musical” has received two Primetime Emmys (for Outstanding Nonfiction Special and Outstanding Picture Editing for Nonfiction Programming) and numerous other accolades as well. It is now available for purchase and rental on DVD. Recently, Autism After 16 spoke with the film's director, Tricia Regan.
AA16: What prompted you to make “Autism: The Musical”?
TR: Actually, I was asked to make the film; I was approached by a group of people who wanted to make a documentary about autism. I was basically giving them free advice for about a year, thinking they might not actually make the film, or raise enough money. My advice was not to make a film about autism, but to make a film about a group of kids who trying to achieve something, a group of kids whose autism happens to be the obstacle standing in their way. People who are struggling against all odds, to achieve something they shouldn't be able to achieve … it's your basic structure for a three-act play or movie.
One of the executive producers knew Elaine [Hall], who had just started working with kids with autism [at The Miracle Project] … so I said, shoot some stuff, put together a trailer, raise some money, and we'll go from there. And they were able to find a funder, and fly me to L.A. to direct.
The process itself was “against all odds.” After three months the funder didn't come through with the money we expected him to … we had a month worth of footage shot by then, and no money. It was hand-to-mouth for every week of production after that. After finishing up the film, we found a company that funded the post-production; they own the film now. It took a lot of faith, a lot of praying to make it happen.
AA16: What was your first impression of Elaine and The Miracle Project?
TR: The first that I saw her was in the trailer that [they] shot, so that half-prepared me for meeting her. I've never seen anybody more patient with kids in my life. Her patience with kids with special needs is super-human. She jokes how she has way less patience for kids who are typically developing!
It's kind of amazing to behold the patience that she has … and she's very tiny, yet she has a big presence. That made filming easier. It's easier for me to hold the camera at waist level, and because she's closer in size to the kids, it's also easier to frame the shots—it made the shooting way more intimate.
AA16: Was there a particular scene or storyline that surprised or touched you during the filming process? (For example, I was deeply moved seeing the footage of Elaine and Neal at the orphanage.)
TR: There were two scenes that really kicked me in the stomach. The first one was early on, though it happens later on in the film, partly because it's so intense. It's when Hillary, Lexi's mother, is talking with a group of mothers. She says something like, “Who says, I hope my child dies before I do?” It kicked me in the stomach because I got it—here's this woman who loves her child so much, and she's so distraught that her child is living in a world that doesn't accept her, and there's nothing she can do about it.
The next moment was when Neal was at the speech therapist, when he started speaking through the typing machine. I'd known him for a year at the time, and he was very attached to me. When he started speaking, I thought, “Wow, that's what your voice sounds like.” Elaine was crying, I was crying, because Neal was finally able to speak! He's this smart kid, saying these really intelligent things—but he hadn't been able to have a voice until that moment. It broke my heart and elated me at the same time. And I love the smile that he has at the end of that scene, because to me, it's the same smile that he has when he's rolling around with Elaine on the rug in the orphanage, as a baby.
It was very important that every main character have a journey, and for every main character, there's a turning of the screw, a significant change—and that's Neal's moment.
AA16: What do you think is the greatest challenge that parents face as their children with autism become adults?
TR: The first really big challenge is having to let go of the dream of who this child would be, and accept that this child is on a very different path than you had hoped. And I think for most parents, it's their worst nightmare. And once parents move through that, then they can start to see the kid for who they are, and begin to enjoy them for who they are.
That journey is portrayed by Hillary in the movie, starting from a place of non-acceptance, and moving toward acceptance, as played out in the film. On some level, there's always a sense of mourning for who this child could have been, but I think any parent of a child with autism will say that there are special gifts that this child brings them that they never could have dreamt of.
The other big challenge for parents is simply moving through the world with their children with special needs. I think it's gotten better—and the film has helped to make it better. It's not the only reason; there's a lot more awareness of autism. However, the people I know who have seen the film have been much more understanding of adults with autism. Every parent's story starts out “normal” and then they get the diagnosis. People who watch the film can feel themselves in the stories of each of these people. It humanizes autism.
AA16: Do you think the experience of having their children featured in the film was difficult for their parents? In what way?
TR: It was hard for Elaine to have the scene where her son acts out and hits another kid in the movie. She was so fearful that it would stigmatize [Neal] further. It took a lot of convincing her to allow that scene in the film. But I said to her, “Why don't you ask Neal?”
As I was shooting that scene, Neal looked to make sure his stepfather was watching, and that the camera was filming. And so I said to Elaine, “I think maybe Neal wanted this to be filmed.” She privately asked [Neal], and he said it was OK, and that's why she allowed it to be in the film. I think people understood he was stressed at the party.
Also, I think that if we'd made the film without that scene, it might have been brushed off as a “nice, nice film.” We needed to show the darkness [of life as a parent of an individual with autism] for people to take it seriously.
For each parent, watching the film is like looking into a mirror—it's difficult. And it's the scariest moment for me, showing the people who are in my film, my film. They usually react badly, and they have to sit with it and see it again.
I don't think anyone [who participated] regrets it now; it's only brought good things to the kids involved, and to the [autism] community as well.
AA16: “Autism: The Musical” has received numerous accolades and positive reviews, particularly one in The New York Times. What's been your experience of the success of the film? Has it changed your life in a significant way?
TR: I knew I had something really special [with this film], especially as we were coming close to finishing it up. So it didn't surprise me how well it did; what surprised me was how little effect it had on my career! [Laughs] Documentary is really tough; I won an Emmy right before the market crashed, and I did get a lot of [directing] offers that following year, but a lot of those offers fell through. However, I'm producing an MTV series right now, and also working with A&E and ABC.
I would love to do another film in the future, but I don't know that I have it in me to go broke for the year, so itt would have to be a film that was funded from the start. [“Autism: The Musical”] was a rare documentary film in that it actually made money in the end. It took a lot out of me, though, on so many levels. I was shooting every week for six months—until you start editing, you don't know you have a film! I felt a lot of pressure that whole time.
AA16: How would you describe a healthy relationship between a parent and a child who is coming into adulthood on the spectrum? In your experience, what qualities are vital for parents to cultivate in themselves in such times of transition?
TR: I'm certainly no expert; I'm not even a parent of a child with autism. What I do have, however, is experience in seeing how half a dozen families were with their young adults. I think the biggest thing is just love. It's so simple. If you love that kid, and they're in the center of your heart, you will figure it out.
Every kid on the spectrum is going to have different needs as they transition into adulthood, and it's a much bigger question mark for adults with autism in their differing abilities and challenges. For example, even figuring out if they're having sexual feelings, that's a challenge. And it's crazy because, since the film was made, these young adults have grown up! Lexi is 19 now!
And, you know, you can ask for advice and talk to a lot of people, but I found that the expert on each one of these kids was their mother! And [the parents] may have made mistakes, but they were 150% behind their kid, every time.
AA16: What do you think is the film's core message?
TR: The goal of the original producers was to make a movie that could show the world how great individuals with autism are. That was the goal that I took on in making this movie, but I think the core message is just love. Love can move mountains. It can. It has. It does every day.
Love opens up the world for [individuals with autism], and allows them to blossom, to the full extent that they are able to. And that is a message for every one of us, everywhere—and that's why the film is successful.
And that's why it was so important that [we have] the Stevie Wonder song end the movie: “Whatever life has in store/Through all eternity you will have my love for always.”
Imagine that you had a tremendous gift, one that could inspire a nation, raise autism awareness, and bring you the kind of press and media attention most people can only dream of. Now imagine that you're terrified to share that gift, because you've spent years of your life bullied and living in fear. You're 22 years old, you have Asperger Syndrome, and you're about to have millions of people watching as you sing.
Now, imagine overcoming all of those things to bring an audience of thousands to their feet. What you've imagined here is the real story of Scott James, “X-Factor” contestant and adult with Asperger’s syndrome.
Recently, Autism After 16 spoke with Scott James about singing, the “X-Factor” experience, autism, and what life looks like now.
AA16: Scott, it's an honor to be speaking with you today; your "X-Factor" performances moved millions of people, myself included. But let's go back a bit further; can you tell us a bit about your history. How and when you were diagnosed with Asperger’s syndrome?
SJ: I was diagnosed with Asperger’s at the age of 13. I was diagnosed after an incident regarding an older gentleman who lived in my street. I became best friends with his grandson. I was diagnosed with Asperger’s after he died; I went a little insane. I set fire to his house! I was very upset. I don't remember much of that time in my life. My mother told me that I spent a lot of time as a child being in these psychiatric centers, I can't remember it at all.
[After the diagnosis], I was still at school, nothing much changed. At the time, my school didn't have the ability or knowledge or people to cope with an autistic person. They put me with a support worker, but I don't believe the worker was up to speed and knowledgeable.
AA16: When did you begin singing? Did you always have a sense that singing was a special gift of yours?
SJ: I first started singing at about the age of 11 or 12. It was a silly thing—I was on holiday with my parents, and my mother thought it would be fun to take me along to a karaoke night. She threw me up on stage and had me sing, “Mamma Mia” by Abba … I hate that song!
Really, I taught myself to sing with Celine Dion songs, starting with the Titanic classic “My Heart Will Go On.” Soon after that, I expressed that I wanted to be part of the school choir. I was playing the violin in the choir, and I expressed a want to sing to the music teacher, and he said, “What else can you do?” and had me continue playing the violin.
So I didn't really pick it up again until a couple years after, until the time when I was about 17 or 18—when I was recording a few tracks at home, just for fun. My mother heard them, subsequently burst into tears, and dragged me to a local recording studio, and that was that!
Singing changes my personality. Normally, I'm very withdrawn … I'm not very keen talking face-to-face with people, as are most people with Asperger's. Singing takes me from that, to being the life of the party. People have said that it brings out drastic changes in my personality.
AA16: At what point did you start to think, “I wonder if I could take this further … to sing in public, perhaps?”
SJ: When I was at the recording studio, it was there I met my vocal shooter, and I started doing shows with her and her other singing students, every three to four months, in a local establishment. In addition to that, she would take me to the clubs that she performed to, and that's where I got all my experience from.
AA16: Can you tell me a bit about the people who support your singing—your mom, your singing coach, and others? How did they help you develop your singing ability?
SJ: I once said that if it wasn't for my mother and my singing teacher, I wouldn't be doing it, that's all. It was my mother who originally pushed me into doing it, and my singing teacher nurtured it. Without that, I probably wouldn't have even thought of doing [“X-Factor”], so their support and pushing was invaluable. To walk down that path, which would usually be unheard of for someone like me …
AA16: What prompted you to take the big leap and audition for “X-Factor”?
SJ: As I said, I went to these clubs and I was doing these shows with my teacher, and people would come up to me and say, “You've got a really good voice, why don't you audition for shows like “Britain's Got Talent” or “X-Factor”? And I thought, “No thanks!” But this continued on for about a year, and we were getting pretty good work, we were getting pretty well-known for being a talented group. People kept telling me I was good; it just kept coming and coming, and I thought one day, why don't I just give it a shot?
I first auditioned for “Britain's Got Talent,” and didn't get through that. I wasn't so much nervous for “Britain's Got Talent,” though, because of the way it's set up. [By contrast], the first “X-Factor” audition, they pack you in … standing in queue with thousands of people for hours, you stand around like an idiot … that was probably the worst part about it.
AA16: How did you choose the music that you performed on the show?
SJ: The “X-Factor” audition song that I sang in the first few stages was Journey's “Don't Stop Believing.” After that, I switched; in fact, I was forced to switch. They turned round and said, “We like you singing this song, but we feel the British public won't know what it is. Do you have anything else?” And I said, “'You Raise Me Up." It's the one I sang at clubs for a year or so, so I had a little bit of practice.”
AA16: What was the best part of the “X-Factor” experience for you? The most challenging?
SJ: The initial audition was somewhat private; you sang behind a screen. But the later audition ... one of the best parts was going into the actual televised stages. Standing in front of the judges, Simon Cowell, etc. … the support from the crowd was fantastic. I could hear people saying, “Go on Scott!” Such messages of support—the clapping, the standing up half way through, when usually people wait until the end to stand—it was a fantastic experience.That was probably the best bit.
Going through to boot camp, though … boot camp was a really huge challenge. They put auditionees in groups, and I don't work well in groups. Having to work with two other people was a huge challenge; specifically, having to sing a Katy Perry song. It was, “Hot N Cold”. [Sings] “You're hot then you're cold, you're yes then you're no”—no thanks! After I sang that I thought, “That's it.” I couldn't do it very well, because it was a Katy Perry song.
Simon Cowell asked me, “Did you choose that song?” And I said, “No.” [He asked], “Were you comfortable with that song?” And I said, “No.” I had to be honest. At the end of the day I wasn't really comfortable, but it was either do that or go home so I did it, and he put me through on the strength of that.
At boot camp we were up at 7:00 a.m. and in bed at 2:00 a.m. You were filmed all the time, rehearsing all the time, under the lights—and those lights were really hot! I'm not used to this, I thought, I'll get a suntan at this rate! It's not as glamorous as it looks on TV; people don't understand the blood, sweat and tears they wring from the contestants.
It was the final [“X-Factor”] stage that I was in, going in to the final performance before the judges stage. I remember it very clearly. It was raining, so they were making alternate plans. They were forced to relocate us to this small area, this tunnel. I was in there, and it was filled with screaming, shouting, crying, rehearsing people, and it was too much for me. I had a panic attack basically. I asked to leave the tunnel, and my performance wasn't long after, and I was a bit jittery. They said, basically, you either sing or you don't, but if you don't you go home. So I ended up singing and completely floffing it and being booted off the day after.
But, at least in the UK, it raised a lot of [autism] awareness; I was very thankful for that at least. It was worth it; the people I met through it. Bloody, sweaty, full of tears, but a fantastic experience.
AA16: What's been your experience of the media attention that's come with your “X-Factor” appearances? Has it changed your life in a significant way?
SJ: At the time and for a period after, we got a lot of press attention—before the show even aired, my appearance had been leaked in a London newspaper, and we ended up with cars on either side of the house, people sending letters, and I thought, “What is this?!”
The press attention was fantastic, I loved every second, though [initially] I couldn't speak, because I was bound by the “X-Factor” not to talk. I met loads of new people and loads of new friends, people who worked with autism, met someone who asked me to sing a song that she'd written, an autism awareness song called, “Through My Eyes”. We released it in 2011. It did really well. It was a charity single, played on TV and radio, downloaded and bought worldwide. It raised quite a bit of money as well.
AA16: What are you up to nowadays? Are you still singing?
SJ: I do sing now and again, but I'm starting university courses here, so I'll have to cut that down a bit. I've done a good bit of charity work, Help for Heroes, cancer research, autism support and charities. I don't really enjoy doing professional work, I don't really get much out of it. I get a sense of accomplishment out of [charity work], knowing that what you're doing is helping people. The past three years have been a fantastic experience. The people I've met, and the people I've gotten to help.
In university, I'll be studying computing and IT. It's nice to have a fall back in computing. Because I was housebound as a teenager, computing and gaming was my first love.
AA16: What are some of your hopes and dreams for the future?
SJ: Well, I hate you for this one! To be honest, I haven't really thought too much about it. I'd like to continue doing charity work, helping autism support groups, raising awareness. [I'd like to] finish university, and I'd love to do more work in autism.
I recently mentored a university teen from Australia, making a video game based around the autistic spectrum, called “Aspergion.” It's a world based on me, what I wanted to see in a world. It looks really awesome, and the whole point is to help people understand about autism, and also for autistic people.
AA16: If you had to give young adults on the autism spectrum one piece of advice or encouragement, what would it be?
SJ: As a kid, I spent a lot of my time hiding away from people, from the children at school who attacked me. They drove me to a point where I wouldn't leave my house for seven years. It caused me a lot of physical and mental trauma. So I'd say, “If you're being bullied, tell someone.”
And my advice would be, “Don't waste what you've got. Don't hide away from life. You may be different to those around you, but that difference is what makes you special. Everyone out there has something to give, so give it!”
“If you've met one autistic person … you've met one autistic person.” So says the tagline for writer/director Todd Drezner's 2011 documentary, “Loving Lampposts: Living Autistic.” The film explores the myriad ways in which experts, parents and caregivers alike view autism today. Is it a tragic disease, for which a cure must be sought? Or is it a gift disguised as a dilemma, as interviewee Sharisa Joy Kochmeister posits? Drezner, a proponent of neurodiversity with a column in the Huffington Post, casts a diverse group of individuals to speak about autism, and its effect on their lives. The film's title refers to Drezner's son, Sam, and his love of the lamppost circuit in Prospect Park, NY. “Loving Lampposts” combines scientific theory with personal detail, and has received numerous awards and accolades for its nuanced portrayal of autism.
AA16: First, I have to ask: How is Sam doing? Does he like school?
TD: Sam is doing very well. We were extremely lucky to get him into a school for kids on the autism spectrum, where there are eight kids in the class, three teachers, and speech and OT on site. The school has a relationship-based philosophy that is very much in line with how my wife and I try to think about autism. Sam is thriving there, and all of the staff seem to take joy in him while at the same time helping him to work on his challenges. As I said, we're very lucky.
AA16: What prompted you to make "Loving Lampposts"? What do you think is the film's core message?
TD: I had been involved in editing some documentaries and was looking to make a film of my own. At around the same time, Sam got his diagnosis. His ritual of visiting lampposts seemed to me to be a good way of getting at some of the bigger questions about autism. Although there are lots of good documentaries about autism, most of them focus on on an individual autistic person or a group of autistic people. I thought there was room for a film that explored how society thinks about autism at a time when it's more well known than ever before.
Then, too, I was aware that Sam does not have some of the most stereotypically difficult behaviors associated with autism. While the ideas of neurodiversity appealed to me, I wondered whether I could find families whose children were more challenging in some ways who also believed in neurodiversity. I was happy to find that I could.
I think the film's core message is simply that autistic people can lead meaningful and productive lives both in spite of and because of their autism. The film suggests that we put aside our obsessions with "cures" and "recovery" and focus on how best to support autistic people to reach their full potential, whatever that may be.
AA16: Was there a particular scene or storyline that surprised or touched you during the filming process? (For example, I was deeply moved when Sharisa Joy Kochmeister typed, "Autism is a gift disguised as a dilemma.")
TD: I was also very much affected by Sharisa's story. She was one of the earliest subjects I filmed, and it was very eye-opening because the difference between outside appearances and what's happening inside her is so great. Seeing such a "low functioning" person who was actually so brilliant really brought home that some of the ways we think about autism are not fully accurate. I was glad that I filmed Sharisa so early because I kept those lessons in mind as I continued shooting.
I was also blown away by Lyndon, the 60-year-old with autism, and his almost 90-year-old mother, Lila Howard. It's awe-inspiring to see how much Lila did to give Lyndon an independent life at a time that there was no support for autism. It makes you realize how lucky we are today.
AA16: "Loving Lampposts" features an incredible range of individuals with differing abilities and beliefs. How did you choose your interview subjects?
TD: That diversity was deliberate. As I said, I wanted to explore the various ways that society is thinking about autism today, and so I wanted to get as many perspectives as possible. I filmed at two autism conferences early on—one that had much more of "recovery" focus and another that was more aligned with the neurodiversity perspective. That allowed me to get some very different views of autism early on in the process.
After that, I was focused more on individual stories. I wanted to be sure to include autistic adults because I think they are too often left out of the conversation about autism. And I wanted to find children at different points on the spectrum. Some people contacted me after the film website went up; others I knew from their own writing on the Internet or elsewhere. I was lucky in that nearly everyone I approached agreed to be in the film.
AA16: Did conflicts ever arise during the filming process due to the differing perspectives on autism?
TD: I never brought together people with very different views for a single filming session (I wasn't necessarily opposed to that; it just didn't work out.) Although I interviewed people I disagreed with, I tried to bring up my disagreements respectfully. There are a lot of shouting matches on the Internet about these sorts of issues, and I wasn't interested in making the movie version of that. I wanted each person to have a chance to tell his or her own story, and I've been gratified since the film came out to see a number of people commenting that the film is respectful of all viewpoints.
The only minor issue I had was with a doctor I interviewed who was very nervous about signing the release to be in the film. Apparently, he had done interviews in the past and then found that they had been edited to make him look like he was saying something he didn't say. He ultimately signed the release and appears in the film.
AA16: What was the most difficult part of the filming process for you personally?
TD: Even though I was making a film that was very personal to me, I was usually able to focus on the filmmaking challenges rather than the personal issues. So I worried about raising the money to complete the film, about how to combine the many different voices into a coherent film, and about who would see the film when it was finished. Because I filmed a wide array of people rather than focusing on a small group for a long period of time, I was able to avoid becoming too emotionally invested in any particular story. I think that was helpful, and certainly there is plenty of stress in making a documentary without also worrying too much about how your subjects are doing every day.
AA16: In your Director's statement, you mentioned seeing Sam progress in ways you couldn't have imagined two years ago. Can you give us an example?
TD: There are quite a few since it's now been more than two years since I wrote that. One example is how Sam uses pretend play. He never used to do any pretend play, but now he does it fairly elaborately. He acts out complicated games of "school," where he is the teacher and his toys are the students. He uses this kind of play to review and process his feelings about what's happening at his real school, and that's also a skill he didn't have previously. We've always assumed that his emotional life was as complicated as any other child's, but he wasn't always able to express it. He's made real progress in being able to show the rest of the world how he's feeling.
AA16: “Loving Lampposts” has received numerous prestigious awards, accolades and positive reviews. What's been your experience of the success of the film? Has it changed your life in a significant way?
TD: Of course, when you make a documentary like this, which is arguing for a particular point of view, you hope that it will resonate with audiences. So it's been very gratifying to hear from many people that the film strikes a chord with them. I've received many messages from parents telling me that the film has helped them to feel better about their own parenting decisions or has helped them decide to make a change. I've also heard from a few autistic adults thanking me for making the film. I feel like the film has made a difference to people, and I really can't ask for more than that.
AA16: What do you consider the most challenging issue facing individuals with autism today?
TD: That's a very hard question to answer because, as we both know, no two autistic people are alike. I think many autistic people, particularly adults, struggle to get the services they need. There's a huge focus on children, which is understandable, but services largely end when people turn 21. That's going to be more and more of an issue as children who were diagnosed in the late 80s/early 90s get older. Beyond that, I think our society is still struggling to come to terms with autism. I think it's important that we come to realize that while autism is a serious disability, it is possible to live a meaningful life with autism. So much of the dialogue about autism is about making it go away. That's not helpful to autistic people. The sooner we can move beyond that, the better things will be for all people with autism.
AA16: In a recent Huffington Post column, you made a great point about the fact that many so-called “autistic” behaviors are considered inappropriate, yet we perceive them as such because we don't understand them. If you had to hazard a guess, why do you think Sam visits his lampposts and loves them as he does?
TD: Sam values consistency, as many autistic people do, and I think that was at least part of the appeal of the lampposts (although he still likes lampposts, we've stopped doing the circuit of lampposts that is described in the film). They are always in the same place, looking the same, and doing exactly what Sam wants them to do. In fact, one of the cameramen who worked on the film suggested that lampposts were for Sam a less challenging version of adults. He likes adults, but like any person, they can sometimes be unpredictable. Lampposts are not. I don't know if that theory is true, but it seems plausible. Other than that, I've come to appreciate the aesthetics of lampposts—they really are nice to look at—and I assume Sam likes them as well.
AA16: What are you working on now?
TD: Good question. In part, I've had some opportunities to speak at film festivals and at more autism specific conferences. This has been good promotion for the film, and more importantly for the ideals of the film.
Beyond that, I'm trying to find a topic for a new documentary. It's a bit of a challenge. Making a documentary about autism was an obvious and personal choice, and there's not another topic as obvious as that for me. I'm mulling over some ideas and will hopefully get started on a new film soon.
AA16: As a dad, what are you most proud of about Sam?
TD: I don't think I'm hugely different in this area than the parent of any other child. I am proud to see Sam become more independent, to learn more about the world, and to better negotiate his place in it. It's harder for him than other kids and the progress may be slower, but I'm no less proud of him for doing it.
AA16: Again, thank you, Todd! As the sister of a young man with autism, “Loving Lamposts” was a deeply moving experience for me. It had me remembering details from my childhood that I'd forgotten, like seeing D.A.N newsletters on the coffee table. In remembering those things, I realize that I grew up with one view of autism, and that I—and my family—have moved to a different place now. Thanks to your film, I can see how much my parents and I have grown and changed because of my brother, Willie. We have come through so much together; Willie has had some difficult behavioral challenges and still engages in self-injurious behavior. Yet there have always been those shining moments wherein we can see Willie. And what we see is incredible. His small victories are my victories, too, and I'm so proud to be his sister.
TD: Thanks. I'm glad to hear the film meant so much to you.
Holiday breaks and chilly winter days are great for movie lovers. While the rest of the year may be hectic, many of us find ourselves with some down time this time of year, and a movie provides the perfect diversion.
I decided to review just a few autism movies that span several decades with an eye toward how autism is presented in film. I could have reviewed more than four movies. A major weakness of my study is that I did not select autism movies randomly. Instead I picked four that have had a palpable impact on our culture’s perception of autism. These movies are easy to rent or buy, so that you can catch them while you are still on vacation or on short notice when the weather turns nasty.
“Rain Man” stars Tom Cruise as Charlie Babbitt and Dustin Hoffman as Raymond, Charlie’s autistic brother. Charlie only discovers his brother after their father’s death, when Charlie learns that Raymond is to inherit all of their father’s vast wealth.
Charlie tracks Raymond down at the Walbrook Institute. What ensues amounts to a road trip of sorts. Charlie kidnaps Raymond from Walbrook in a complex plot to bring Raymond to Charlie’s hometown of Los Angeles, where Charlie thinks he can pull legal strings to take over Raymond’s inheritance.
The movie won four Oscars, including Best Actor for Dustin Hoffman, and was widely acclaimed as inspirational and ground-breaking. The character Raymond is loosely based on the real Kim Peek, a savant discovered at a disability conference by Barry Morrow, a screenwriter looking for a good story. Movies with autistic characters existed before the debut of “Rain Man” in 1988, but this was the first time America was introduced to an autistic adult in a widespread way.
Dustin Hoffman does a superb job portraying Raymond and the autistic world in which he lives. Raymond, a savant capable of memorizing thick books he will never truly understand, is otherwise completely incapacitated. He lives out his life isolated from his community—even from his own family—and is cared for around the clock like a child. The movie suggests that this is necessary both for Raymond and for society; an incident involving Charlie's safety as an infant prompted Raymond’s transfer to an institution.
This movie raises many thought-provoking questions that will give you plenty to talk about. Do we still view autistic adults as needing to be sheltered from society and vice-versa? “Rain Man” increased the public’s understanding of autistic adults, but perhaps gave a stereotyped view—only a few of us are savants. The hope is always that movies like these increase the public’s compassion and dedication to the most vulnerable amongst us. As you watch, ask yourself just how close are we to the goal of full community integration? How has our understanding of disability, and our understanding of autism, changed since the late 1980s?
Flash forward more than a decade and we are invited into the lives of a bunch of autistic adults living in Phoenix. Specifically, “Mozart and the Whale” explores the emerging relationship between Donald (Josh Hartnett) and Isabelle (Radha Mitchell), loosely based on the real-life couple Jerry and Mary Newport, and their friendships with other autistic adults who come to a local support group meeting.
In direct contrast to “Rain Man,” this movie shows autistic adults living life in society. Jerry Newport explains in interviews and at autism conferences that “Rain Man” allowed for the discovery of his own autism and motivated him to develop the Phoenix-area support group. Though not without a range of difficulties and mishaps, the adults portrayed in “Mozart and the Whale”—supposedly character composites based on actual people—are holding down jobs, renting apartments, taking buses, sharing dinner with each other, attending a Halloween party, and falling in and out of love.
Interestingly, reaction to “Mozart and the Whale” is often incredulity: Truly autistic adults could never function so well, the logic goes. Some viewers walk away feeling that the cast of characters do indeed represent the full spectrum of autism, and that the movie accurately portrays the vocational challenges, sensory issues, and relationship complications so prevalent on the autism spectrum. But others feel the movie does not provide a just representation of life as an autistic adult. Whether you find the plot thin or romantic, whether you find the characters valid or lacking in authenticity, the movie begs us to analyze how much has changed since 1988. Raymond simply would not have had access to such a wide range of experiences. What the adults on the autism spectrum do in this movie—essentially, form a community of their own—would have been unfathomable 17 years earlier. A provocative shift in thinking, perhaps more than great art, is this movie’s gift.
A full 22 years after we met Raymond, a television biopic of Temple Grandin’s life pulls our thinking about autism a full 360 degrees. Claire Danes portrays the real Grandin as adeptly as Dustin Hoffman portrayed the fictional Raymond, for which she also received an award (an Emmy). The viewer is again invited into the world of autism. What is unique about this movie is that, for the first time, viewers are also invited to understand this world. Whether Grandin is figuring out social dynamics by testing sliding doors at the supermarket, or seeing a stockyard from a cow’s perspective, at last how autistic people think and feel is given expression.
Some viewers wish the movie covered in greater detail her transformation from a disordered child who could not speak into a world-renowned animal scientist. Whatever the movie lacks chronologically is more than made up for by how well the movie captures Grandin’s unique understanding of the world and her struggle to live in it. Again, like the adults in “Mozart and the Whale,” she lives with her family or in the community, attends school, goes to college, and builds a decent life for herself with the support of her family, peers, and professors. An added bonus is that viewers can glimpse her valor as a woman in a male-dominated field, and her strength as an autistic woman in an autism community that is also still quite focused on the experiences of autistic men.
Critics say that this movie puts the burden and the blame for autism back onto parents: It is somehow the parents’ fault if an autistic child does not turn out to be as functional and gifted as Grandin. Others feel that the movie serves to demonstrate what can happen when someone is given a chance. In either case, the movie made me wonder about Raymond. How much of his total and almost infantile dependence was a reflection of low expectations and lack of opportunity? Would the adults in “Mozart and the Whale” live isolated lives like Raymond if our attitudes had not begun to shift dramatically sometime in the 1990s? And what is society’s comfort level with imperfection? Perhaps the critics of “Temple Grandin” have a grain of the truth—not all autistic adults can get a Ph.D. and single-handedly change the meat processing industry. But maybe that is not a problem. Maybe the brillance of “Temple Grandin" as a movie is the suggestion that, when given the chance, autistic adults can be as imperfect as everyone else.
Landing squarely in cinemas this year was the oddly titled “Wretches and Jabberers,” a documentary about Tracy Thresher and Larry Bissonnette, two autistic adults from the United States who embark on a global tour to raise awareness about autism, communication, and dignity. Yet again the portrayal of autism shifts completely.
Unlike Grandin, Thresher and Bissonnette do not speak. They did not go to college. They lived in and out of institutions in their youths. Thresher is homeless and has meltdowns in hotel lobbies. Bissonnette has obvious cognitive issues but finds relief in his art. Everyone presumed that these men had no, or very little, inner life. That is, until they were given the controversial intervention termed Facilitated Communication. Now, both men communicate by typing—sometimes independently, sometimes with a little assistance from Harvey Lavoy and Pascal Cheng, their teachers, coaches, and fellow travelers.
One can watch “Rain Man” and wonder if perhaps Raymond’s life at Walbrook isn’t that bad, considering Raymond’s challenges, and one can watch “Mozart and the Whale” and “Temple Grandin” and think that at least this cohort of autistic adults deserves a chance at life in the community because they do speak, take public transportation, live in apartments, study at college, produce works of art or music or science, and befriend and even marry one another. Maybe life in the community and independence are possible for some autistic adults but not others. Maybe some autistic adults need to be sheltered and protected. “Rain Man” on the one hand, and “Mozart” and “Temple” on the other, polarize the autism community. “Wretches and Jabberers” blows this polarization to the moon.
Bissonnette and Thresher’s unique diction and insights are captured in a musical score that features their words as lyrics. This alone made me teary. Imagine being unable to express your intelligence for decades, and then to hear the poetics of your mind splashed into notes of moving music.
Critics of Facilitated Communication claim that the autistic person isn’t really communicating because a facilitator is guiding the person’s motor movements in order to operate an electronic or digital communication device. But as Judy C. Bailey, a consultant and behavior support specialist in Centreville, Virginia, succinctly notes in an email correspondence, “… Having no effective communication is a risky way to spend a life, too …”
Thresher and Bissonnette teach us that maybe we’ve had autism all wrong. Instead of looking at an autistic person and deciding if he or she either lacks skills, or has them, they teach us to see whole people instead. Not only may we be imperfect but successful on our own terms like Grandin, or different but happy like the adults in “Mozart and the Whale,” now we can also be human. When Larry is asked at a conference what he does to calm down, he says he has a beer. The audience laughs, and the comment is funny. But what Larry means is what he underscores when he says, “More like you than not.” This insight alone will move our understanding of autism another full circle closer to authentic community integration, a chance Raymond never had and something that still, unfortunately, eludes many of us. Twenty-three years after Raymond, Bissonnette and Thresher and their new allies on the World Intelligence Magnified Tour prove that autistic adults are not just imperfect like the rest of you, but completely like the rest of you.
A woman struggles to understand as her teenage daughter with autism screeches unintelligibly and points at a take-out menu. An adult man with Asperger syndrome shares his hope that his book will become a bestseller. An autism expert recounts stories involving misunderstandings between people with autism and law enforcement.
These are just a few of the highlights of “I Am Autistic,” a TV pilot now available for acquisition from FPR Studios, an independent production company based in West Palm Beach, Florida, run by broadcast industry veterans Jerry Trowbridge and Ray Smithers. (Although previews of the show are not yet available to the public, FPR Studios provided Autism After 16 with a private screening.)
The hour-long pilot covers a wide range of topics, including autism research, legal concerns, celebrity interviews, and a movie clip. Interwoven are portions of at-home footage of families who live with autism.
The host who weaves these segments together is Daniel Heinlein, 24, of Lake Geneva, Wisconsin, who was diagnosed with Asperger’s syndrome in high school. The opener to the pilot shows chronological pictures of Heinlein as he details his long road to an AS diagnosis.
Heinlein, the grandson of a friend of Trowbridge and Smithers, had been writing and producing ads at a Wisconsin radio station when the broadcasters asked him to do a screen test for the pilot. They immediately knew they’d found their host.
“I jumped at it,” Heinlein said. “For all my social anxiety and other stuff, I’ve done theater and have always been able to dissociate myself and talk in front of people.”
The broadcasters flew Heinlein to South Florida to film his portions of the pilot at the studio. Despite interviewing most guests with only a green screen as his backdrop, Heinlein was a natural, Smithers said. He started calling the set “my apartment.”
Still, the broadcasters knew how to keep Heinlein on his toes, he said. Smithers purposely gave the twentysomething minimal direction before he interviewed drummer Dan Spitz from the heavy metal band Anthrax and his wife, Candi, about their twin boys with autism.
“[Smithers] just briefed me, but didn’t tell me too much,” Heinlein said. “Otherwise, I would have had every question memorized and been thinking about posing my next question instead of listening. Getting to sit on a couch and talk with a musician about autism was so totally out of left field. I would have tried to make sure everything was perfect and, if we went off that, I would not have known how to cope.”
Instead, Heinlein appears at ease on camera when he interviews guests and when he introduces families’ at-home segments.
Trowbridge and Smithers sent video cameras to more than 30 families around the country. The families, found with the help of Florida Atlantic University Center for Autism and Related Disabilities, received a few recommendations for keeping their cameras steady and introducing content so viewers would understand what followed, but otherwise, they filmed independently. The resultant footage in the pilot is mesmerizing, with segments that show different aspects of the families’ daily routines—including full-blown meltdowns.
“We see people who are high-functioning and they have unique issues,” Trowbridge said. “And then we see the people who will never speak and [have profound intellectual disabilities]. There’s a great gulf between them. We realized we couldn’t sugar-coat this.”
The Show's Future
The broadcasters have big plans for the show once a television network or video distribution outlet picks it up.
Trowbridge said they see the series as having three audiences: individuals and families who know what it’s like to live with autism and who would like to learn about the latest research and resources; people who have been newly diagnosed with autism and their families, who would benefit from seeing others in their situation; and TV viewers who would stop by to learn about autism. All three audiences are likely to grow, considering the rise in autism diagnoses.
“This is a freight train coming at us,” Trowbridge said. “The increase in autism diagnoses went from 1 in 110 to 1 in 100 just in the course we have been developing this show.”
The families are keeping the video cameras they received so they can record their progress. Trowbridge and Smithers plan to air updates on the families when they have something meaningful to share.
And the broadcasters see the networking potential of the show. At the end of each at-home segment, a dedicated email address will appear on the screen that viewers can use to contact the families.
“So many of the families feel alone,” Smithers said. “You have all your friends, then all of a sudden you have an autistic child, and your friends don’t want to watch the meltdowns. They don’t want to listen to your problems.”
Future shows may deal with respite care, postsecondary transition, employment, and vaccination. Trowbridge and Smithers said they plan to be brutally honest regardless of what subject they tackle, even toileting issues.
“We have to go there. We cannot not go there,” Trowbridge said. “There is no stone we won’t turn over.”
The show’s expert advisory committee watched the pilot before the studio released it for review. Every family that participated also vetted the pilot’s content. The show will continue to seek feedback from the community to ensure it doesn’t become exploitative.
“It’s a thin line, trying to show people in a positive light and not be accused of exploiting them, but we’ll have to do our best,” Heinlein said.
Heinlein said his family plans to move to South Florida if the show gets the green light. Trowbridge and Smithers said they see him doing more on-location interviews in the future, perhaps even outside Florida. They believe Heinlein could become the public face of autism if the show takes off. Heinlein, who has overcome depression and anxiety, is ready for the responsibility.
“It feels good to do something this meaningful that will be of use to people,” he said. “I’m very excited about that.”
Heinlein, who studied sociology and music in college before following his family into the radio business, may just have to confront his quirks on occasion if he interviews any young men with Asperger syndrome.
“As hard as I have to work to get through life, I’m fortunate I don’t have the functional impairment others do,” Heinlein said. “When we introduce someone who is higher-functioning who reminds me of me, I will have to face that. It’s like when I hear my voice recorded. It doesn’t sound like me at all, but I sound like that to others. I’m ready to confront that down the line because I think it’s important to get at the entire spectrum, not just the lower end of the spectrum.”
Hans Asperger, the physician from whom Asperger’s Syndrome derives its name, wrote, “For success in science or art, a dash of autism is essential.” Today, doctors, support coordinators, parents and adults with autism alike are finding that the inverse may also be true: Leading a life of self-determined success in autism may require a dash—or more—of art.
The pursuit of fine arts is, in many ways, particularly suited for adults with autism. In fact, there are speculations that artists such as Michelangelo, Vincent van Gogh, and Andy Warhol may well have been on the autism spectrum. The production of fine art requires visual thinking, a high degree of focused attention, a detail-oriented mindset, and an ability to work in silence and solitude. All of these attributes are characteristic of many adults with autism. In art, therefore, many find a productive outlet for fixations, and a welcome challenge for their energies.
As Asperger himself noted, “The essential element [of artistic success] may be an ability to turn away from the everyday world ...” Parents, teachers and caregivers are tasked with helping adults with autism turn their attention toward the everyday world, and their assistance in daily-life tasks is often invaluable. Yet adults with autism also need time to turn inward, to rest from their efforts of engagement. Daily socialization can be exhausting for introverted personalities and persons with autism alike. Both groups need solitary time to create, and art affords them the opportunity.
The Benefits of Art for Adults with Autism
Art can do more for adults with autism than simply offer sanctuary; it can be, in and of itself, a catalyst for transformation. If an adult with autism is particularly interested in one branch of the arts—if he has a love of drawing, or she a love of painting—these natural affinities can help them to grow in ways that other therapies cannot. Therapists, teachers and parents know that when adults with autism are working in a medium they enjoy, they are more receptive to instruction, more open to interaction with others who share their interest.
Social life on the autism spectrum often begins with a shared passion, and for many, art certainly qualifies. (That said, artistic endeavors will benefit each artist with autism differently, depending on their specific areas of growth.) For example, artists working as part of a community-based day support program have increased opportunities for community integration and interaction. During work hours, exhibitions and shows, artists with autism have the chance to practice socialization skills in an environment in which their contributions are honored. Thus, the creation of art and the community of artists help them to forge a stronger sense of identity as individuals.
In addition, artists with autism may appreciate the creative experience as a path to earning income. Being able to sell one's own work is extremely empowering for adults with autism, and they relish the sense of personal achievement it brings. But is this experience happening consistently? Are artists with autism finding markets for their work?
Art-Based Day Support Programs
One way in which artists with autism are earning income from their creations is through art-based day programs, many of which are funded by Medicaid Waivers. As such, artists with autism have more outlets to express their creativity than ever before, thanks to the dedicated efforts of parents, friends, advocates and educators. One such person is Joyce Muis-Lowry, founder of Art Enables, a day support program and art studio for adults with intellectual disabilities in Washington, DC. The tagline? “Outsider Art Inside The Beltway." The program boasts a high staff to artist ratio, exhibit space, and frequent shows. Some Art Enables artists receive hundreds of dollars in commissions for their works. Additionally, Art Enables publishes a yearly calendar, greeting cards and other products, all in an effort to share the art of adults with disabilities with the world.
In a similar fashion, the supported employment program Woodmont Weavers, located in nearby Arlington, Virginia, supports artists with intellectual and developmental disabilities in their daily production of weavings, glass works, and more. The program features a group of 13 weavers who work in a highly visible location—the Ballston Mall in Arlington. Woodmont Weavers was begun by two master weavers, Sally Lloyd and Lill Mason, who decided to teach weaving to a small group of adults with disabilities in 1987. Since that time, the program has grown to include additional participants, looms and staff members.
Art-based programs like Woodmont Weavers and Art Enables serve dual functions. They are both Medicaid Waiver providers for day habilitation, day support, prevocational training and supported employment for adults with intellectual and developmental disabilities, and bona-fide retail businesses. The nature of such programs is to provide opportunity for adults with autism to engage in the arts, while simultaneously allowing service providers to receive much-needed funding streams.
How much money do the artists themselves take home? At Art Enables, artists keep 60% of revenues from the sale of their work. The other 40% goes toward framing and other presentational costs. (No monies from art sales go toward program operations.) At Woodmont Weavers, the model is different. Each artist’s bi-weekly pay is based on production, not commission, as inches woven are entered into a formula to calculate total wages. Though they differ in their approach to artist compensation, both Art Enables and Woodmont Weavers make a concerted effort to market the work of their artists, and this degree of extra effort can mean the difference between art as a hobby and art as a way to earn money for an adult with autism. Professional teaching, access to equipment and materials, presentation, matting, framing, networking and pricing are a few of the additional supports that both day programs offer.
These practical benefits aside, the Art Enables and Woodmont Weavers programs themselves have been transformative experiences for individuals with developmental disabilities. The programs empower adults with autism and other disabilities to explore their interests and expand their areas of expertise. As Art Enables participant Michael Schaff says, “I draw pictures of the Presidents and First Ladies. What I'm reading about, that's what I like to draw.”
Staff members assist Michael in his portraiture work, suggesting various tools and asking questions about each compositional element. In turn, Michael tells staff and studio visitors stories about his work, and he enjoys sharing biographical information about each subject. Michael's interest in history, combined with Art Enables staff assistance, has resulted in enigmatic, unique portraits. Visitors to the studio search to see famous faces in his colorful, abstract works of art.
And Michael isn't the only one. As Woodmont Weavers staff member Raquel Rosa observes, “I think of one woman who came to us without a lot of self-confidence. In her previous workshop, she lacked incentive to do a good job. Her work wasn't recognized. Here, she's learned a lot, and she has transformed because of it. Her family says that she is more sociable and self-confident. Shoppers affirm her work, and she smiles so much. Before, she had never experienced the feeling of, 'So many people like what I'm doing!'”
Muis-Lowry notes that Art Enables represents a powerful experience for staff members as well. “It helps staff use their creativity to make that happen each time in a different way with a different twist to a different end. Not a lot of jobs offer such free-ranging and energizing improvisation.” For both the program staff and the artists with autism, then, the process is rewarding. Nevertheless, the programs—and the artists themselves—face a myriad of challenges.
Challenges for Artists with Autism
As statewide budget cuts and Medicaid freezes threaten the existence of art-based programs, adults with autism may receive fewer opportunities to engage in artistic pursuits. Dramatic cuts often translate to program closures, while smaller cuts mean low wages for program staff. When the day support programs themselves are threatened, so is the artistic life of the individual. Many adults with autism need constant support in artistic technique, making connections, setting up events and sharing their art with the world, and this degree of support is not currently available for all individuals. Programs like Art Enables and Woodmont Weavers allow some artists with autism to earn money and receive needed supports at the same time. Yet other individuals may find their desired art-based day support programs are full. In such scenarios, earning income from their artwork can remain a dream rather than becoming a reality.
That said, with the advent of Internet-based business, adults with autism are finding new markets for their creations. One such artist is Stephen Wiltshire, a UK-based artist with autism famous for his intricate, detailed cityscapes. Thanks in part to the worldwide sharing afforded by the Internet, Wiltshire has built an impressive professional career. He has published several books, traveled the world and received high-profile commissions. In addition, he has his own popular art gallery, The Stephen Wiltshire Gallery Ltd, in London. He lives with his mother, but a trust fund established by an early agent has allowed him to support himself. Profits from gallery sales of Stephen's art are portioned between his personal trust and charitable giving. In this way, his exceptional talent and strong mentorship have allowed him to flourish professionally and contribute to children's therapy programs and art-based educational programs as well. Stephen's story is certainly unusual, but it is also a hopeful testament to what is possible for artists with autism.
Few artists with autism will receive the high degree of media attention and support that Wiltshire receives. The question then becomes: How can artists with autism and other developmental disabilities receive supports and profit from their work at the same time? Likewise, how can we as a society provide them with the degree of support they need to learn techniques, grow their artistic and interpersonal skills, and market their pieces?
The solution must lie in combined effort of individuals and organizations. Day support programs like Art Enables and Woodmont Weavers require Medicaid and state and local funding to continue operations. However, replicating their success would mean major changes for most other Medicaid-based day support programs. For example, day support programs for artists need to position themselves carefully in order to promote their works and offer a higher degree of visibility. Gone are the days of isolated, sheltered workshops; in order to flourish, support programs need to integrate into community life. As Muis-Lowry says, “The [Art Enables] studio benefits from being a storefront with lots of walk-in traffic, in addition to the buyers and fans who come to the studio openings of shows.” (Art Enables' website also allows for online purchasing.) When asked about how Woodmont Weavers' success could be replicated, Rosa adds, “There needs to be that advocacy, and it has to start within the [day support] organization itself. It's not just about day support and job training, it's [also about] in-house vocational, how to make things, how to interact with the community. Sales tasks, networking, making [the community] that much more tangible and accessible.”
Manifesting Inner Worlds and Interior Landscapes
Finally, the need for greater involvement in the arts is founded upon the premise that artistic creation is a powerful communication tool for adults with autism. For many young adults with autism, the creation of art is a vehicle for expressing the inexpressible. With appropriate teaching and support, art can become a way for these adults with autism to make manifest their inner worlds.
In this sense, supporting artists with autism is not only beneficial for the artists themselves, but for the rest of society as a whole. As Rosa of Woodmont Weavers states, “It works well for the weavers to have people come in and see their work, see them being productive, and it also helps the public to see this population in a different way. Seeing that [people with intellectual disabilities] are intelligent, creative, and outgoing...the public is learning something new. It's a huge benefit for everybody involved.”
Likewise, when we help adults with autism to develop themselves as artists, we receive rare, fascinating glimpses into their minds and hearts. The art of adults with autism and other intellectual disabilities becomes all the more compelling when seen as an invitation to view their unexplored, interior landscapes. Whether those worlds are peaceful or turbulent, richly detailed or mysteriously abstract, the art itself will say.
As Muis-Lowry says of Art Enables, “All of the artists are identified as persons with disabilities not as a way of earmarking them for special consideration ... but as a way of highlighting their work as that which grows out of an experience the rest of us do not have.” For parents, teachers, siblings and friends of individuals with autism, this insight into the life of a loved one is well worth the time, money, and effort it takes to facilitate.
Every family has a story. For Australian film writer/director Elissa Down, the story is about growing up as a sibling of brothers with autism. Her 2008 film. "The Black Balloon," is a semi-autobiographical look at moving into adulthood alongside a brother on the autism spectrum. The film earned 11 Australian Film Institute Awards, including Best Direction and Best Screenplay nods for Down. It stars Toni Collette ("United States of Tara"), Rhys Wakefield, Luke Ford, and Gemma Ward and is available on DVD. This summer, Down took some time to answer a few of our questions about her film.
AA16: "The Black Balloon" has been referred to as semi-autobiographical. Tell us a little about your two brothers with autism and the rest of your family structure.
ED: I am the oldest, and have three brothers. I have two that have autism. One, is very high functioning and for a time went to the same high school as me. The other, Sean, who is the youngest and the brother Charlie is based on, does not only have autism but is also ADHD and is an elective mute.
AA16: How old are your brothers now? What is their living/employment/support situations?
ED: My brothers still all live at home. My mum still looks after them and so did my dad until he passed away last year. Mum is able to get respite care for Sean and he is also involved in a social group. My other brother is super smart so he spends most of his time on the computer.
AA16: What prompted you to make this film? What did you want to communicate to audiences?
ED: I don’t think anything prompts you. It’s inspiration. Which of course sounds airy-fairy but this idea of telling a film based on my family came to me and I followed it. I wanted to show the audience the "insider view" into living with a family member with autism.
AA16: You set the film in the early 1990s. You’ve talked about how that choice forces Thomas to interact with his peers in a way that can’t rely on texting or Facebook. Does that choice also impact how the family interacts with neighbors and their community, or do you think things remain the same in that regard?
ED: I do think things are different now in the sense with the internet is much easier to find support and find others out there in the same situation as you. I would have loved it when I was growing up as I would not have felt so alone.
AA16: "The Black Balloon" has an amazing cast. What were you looking for in actors when you were casting and what contributed to your decisions in bringing each of these actors into the project?
ED: It’s hard to give a short answer about the casting process, as each character requires different qualities that I would be looking for in each of the characters. Toni Collette was my number one choice as she always gives such rounded portraits, especially of the working class. With Thomas, I was looking for an actor that could embody sensitivity and nobility. He needed to be a vehicle for the audience’s empathy. Charlie on the other hand, I needed a courageous actor who could not only convincingly inhabit the world of autism but could also give Charlie a nuanced sense of self.
AA16: You got strong, layered performances from your cast. What did you do to help them understand the complexities of being a family living with autism?
ED: The actors got care packages which included not only information about autism but also documents like the communication books between my mum and my brother’s teachers. I also did a lot of workshopping in rehearsal, where I would set up a scene where Charlie plays up and then the family would have to improvise how to deal with it.
AA16: In casting Jackie, you went with Gemma Ward, a model. To Thomas, Jackie represents everything normal and beautiful that has been outside of his reach. She becomes accessible to him, both in terms of her feelings for him and for his family. Why this choice in creating a first relationship for Thomas?
ED: If the character of Jackie was a bitch, again the alienation of Thomas could be blamed on her and not on his estranged feelings about his brother. Also, there are many people out there who have such big hearts and Jackie is a reflection of that.
AA16: In another interview, you commented on how you were advised to split the parents up as you were writing the screenplay. What was the thinking in giving this advice, and why did you decide to keep the family intact? How would you characterize the relationship between Maggie and Simon?
ED: I decided to keep the family together because that is reflective of my parent’s strong marriage. It is all I knew growing up. From a script point of view, if I split up the parents, it would give Thomas a reason for the alienation inside, you could blame it on his parents situation and not on him wishing his brother was normal
AA16: There is a moment in the film in which Thomas looks at his new baby sister lying in her crib. What do you think Thomas is thinking at that moment?
ED: It is one of those moments I leave audiences to decide. You can read a number of different interpretations on Thomas in that moment.
AA16: "The Black Balloon" won numerous awards and was generally viewed very favorably by critics. What audience responses to the film made an impression on you? Was any feedback unexpected?
ED: The biggest aspect for me was to realize I wasn’t alone. So many people came up to me or contacted me to tell me they told "their" story with "The Black Balloon." That was very cathartic for me. It was also an amazing thing to see different audiences from around the world, laugh and cry all in the same places in the film. That is the great thing about film as a medium, you can make a person understand a plight of another, in a more meaningful way than reports and statistics.
AA16: If you were to make a film showing Thomas and Charlie now, what would you include in that story?
ED: When my father passed away, there were so many funny things that were happening that I was thinking, “This is such great material.” I won’t divulge too much, but one thing was, Sean spent most of the funeral hitting me on the shoulder, then put his arm around me after I gave a speech.
AA16: What are the most challenging issues facing families with adult members on the autism spectrum? Do you think there are differences for people living in Australia versus those in the United States in this regard?
ED: For me the most pertinent thing, especially since my father passed away, is what happens to them when their parents pass away. Being a sibling the responsibility falls on my shoulders. It’s such a daunting thought, since I have two brothers and I don’t live in the same country. I wouldn’t know where to begin.
AA16: "The Black Balloon" shares not only the challenges of living with autism, but also how typical the family is in many ways, especially in how much they love one another. (A wonderful moment is when Maggie chastises Simon for hanging the underwear at the front of the laundry line for the neighbors to see, commenting that it’s “very embarrassing.”) What about your family life was totally typical? Would you share with us some of the ways in which you feel your life is enriched by your brothers with autism?
ED: One thing I have learned is that no one is typical and normal. Everyone and every family has its own idiosyncrasies. Having my brothers has taught me patience and given me an unique perspective on seeing things.
AA16: What are you working on now? Have you left aside autism as a storyline in your work, or do you think you will return to it?
ED: I am working on a number of projects: The romantic epic drama Savage Garden, a film on Nazi propagandist Leni Riefenstahl; "Mr & Mrs Montague," a romantic comedy centered around Romeo and Juliet; and "The Boy in the Sky" a magical family story about a boy who lives in the circus. They are all quite different from "The Black Balloon" but they all have a similar theme as they all deal with "outsiders" which is something I’m interested in, growing up in the environment I did. I have said all I wanted to say on autism so I feel no need to revisit the topic again. But my experience with my brothers informs a lot on what type of filmmaker I am.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
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