Autism and the Power of Pictures

Photographs have the power to inform and sometimes change how we think about something. An example of the transformative potential of photographs is the Farm Security Administration Photography Project which was carried out during the Great Depression. In that project, the FSA commissioned photographers to visually document the daily lives of tenant farmers and sharecroppers to give Americans a front row seat on the devastating affects of a longstanding drought. Many believe the project sufficiently influenced the views of enough Americans to allow passage of the New Deal economic reforms.

A nonprofit in Massachusetts called the Broad Spectrum Project is harnessing the power of photographs to promote a broader and truer understanding of the day-to-day facets of living with Autism. The photographer behind the Project is Kristin Chalmers, who produces posed and un-posed photographs of children with Autism and their families. The organization’s mission statement is:

To provide authentic images of autistic people, so the world can see the many diverse faces of autism, begin to understand its effects, and support the cause.

To ensure the authenticity of their images, Kristin often takes photographs of children and families while in the middle of their daily activities, doing what they normally do or in celebratory events, such as a regional benefit walk for Autism Speaks. Chalmers was recently named the official photographer for Autism Speaks New England.

Kristin has a son with PDD/NOS and is sensitive to the sensory and situational challenges of children on the Spectrum when she organizes and schedules photo shoots. Photo subjects aren’t generally asked to pose in formal portrait-taking sessions because those sessions involve many elements which are upsetting to children on the Spectrum – dressing in uncomfortable, possibly sense-violating clothes, going to a strange place in an unfamiliar situation and sitting and smiling on cue in a studio with bright, hot lights.

For times when formal photo sessions are scheduled, Kristin is willing to change the schedule if the appointed day turns out to be one when the child has a hard time getting regulated. She works, not just to create insightful, poignant pictures, but also to make sure the photography process is a good and beneficial experience for the children she’s working with.
When you scroll through the Spectrum Project collection of pictures, you may first simply see that the photos are beautiful and well composed. Then, as you continue to look, you find yourself walking alongside the children and the adults who love and support them. You’re caught up in the spirit and rhythm of their lives.
This is a very good thing indeed. It’s a good thing for Spectrum families. Better yet, it’s a good thing for neurotypical individuals who struggle to understand Autism as more than a “light it blue” campaign during Autism Awareness month and news stories about children in crisis.
The website for the Broad Spectrum Project is: http://broadspectrumproject.org

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Sibling Back Story ……. By Devon Radtke

I remember going to daycare every morning with my brothers. I remember that daycare well. I remember the pride I felt because I was in kindergarten and would leave my little brothers behind to go across the street to school when the bus came.

I also remember Tristan asking every. single. morning where we were going, even though we were always going to daycare. I asked my parents why he did that and they said Tristan just liked to know.

I remember Tristan liked to smell everything.

I remember Tristan liked to bounce. He has always walked on spring-loaded toes. My grandmothers each admonished him for it and bemoaned the poor future of his feet if he didn’t start walking flat.

I remember Tristan hanging on the fringe of Damien’s and my games. As the oldest, I was ringleader and Damien was my second. Tristan was just there. He went along with everything, but his interaction was minimal. He was a skinny blonde shadow.

Tristan was my weird little brother, but I don’t ever remember thinking anything was wrong with him.

When Tristan got to school, his world changed. Instead of a twin brother and older sister that he knew well, he had strangers for peers. He had teachers who saw something unidentifiable in him and labeled it as a problem. He had to go to the nurse’s office every day to take his Ritalin.

When we began taking the bus home after school instead of going to latchkey, I remember Tristan had to watch Arthur at 4:00pm every afternoon. When I was in sixth grade, a friend introduced to me Pokémon, which was also on at 4:00. I very clearly remember Tristan’s behavior when Damien and I tried switching the channel on him to watch this new show. That was the first time I realized how important routine was to my brother.

My parents took Tristan off Ritalin while he was still in elementary school. I had moved on to the larger pastures of junior high. Even in separate schools, though, I heard stories about the weird little kid who danced around the playground and “ate woodchips.” He wasn’t eating them, he was tossing them and catching them, and it was no surprise that juggling was second nature to him. That was the first time I became defensive of my little brother.

Tristan was thirteen years old when he was diagnosed with Asperger’s Syndrome. His unidentifiable “problem” that had been misdiagnosed as ADD/ADHD, and that we, his siblings, had seen as quirkiness, was featured on the cover of Time Magazine. My parents read the article. It was as if someone had invisibly been following Tristan without anyone’s knowledge and had then written exclusively about him. A psychologist confirmed my parents’ hunch. Suddenly Tristan was on the autism spectrum.

With a diagnosis comes help, right?

Not for Tristan. At the time of his diagnosis, Asperger’s Syndrome was relatively unknown. Autism was not yet in the center of the public eye. The resources available for autism spectrum individuals were limited and focused on young children. When Tristan was a young child, he was considered quirky, then hyperactive. No one was trained then to recognize Asperger’s presentation. When his behavior was eventually recognized for what it was, it was essentially too late. He was too old.

Tristan has seen counselors, psychologists, and psychiatrists, but as a young adult. He has never been in a formal program for ASD. He was thrown into and has remained in the “mainstream.” He had an IEP for his misdiagnosed ADD, and he went to speech therapy for a lisp. No one taught him how to cope with the instability and volatility of the world. No one taught him how to read facial expressions or interpret the inflections of voice and body language. No one taught him how to navigate a conversation, or even how to control his own voice. Tristan cannot see the things we take for granted to help us navigate an unruly reality.

Tristan is not alone.

Young adults like Tristan float in a kind of limbo. They are “typical” enough to not be eligible for the help they need. There is no physical identifier for ASD like there are for other more widely recognized developmental disorders. Because they look “typical,” they’re expected to be “typical.”

And that’s where 9th Planet comes in. Using movie-expert Tristan’s video editing skills, 9th Planet™ videos demonstrate how social skills work in typical situations – in the classroom, at work, or in social settings. They explain the social “rules” that Typicals follow, in a way that teenagers and young adults enjoy and appreciate. And Tristan can help others like him deal with the oft-confusing Typical world.

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Tad and Bob Go “Guerilla”

“Guerilla filmmaking” is a term describing a style of filming quickly in real locations, without warning, usually without permission of the location owners.

A famous example of guerilla filming appears in the Alfred Hitchcock thriller, North by Northwest. The story called for the star, played by Cary Grant, to be involved in a murder inside the United Nations building in New York City. While the interior scenes were shot on a studio sound stage, Hitchcock felt he needed an establishing shot of Grant entering the real – and recognizable – UN building. However, the UN would not allow filming on their premises.

Hitchcock resorted to guerilla tactics to get the shot he wanted. With the camera hidden in a vehicle on the street, Cary Grant exited a cab and strode across the plaza into the iconic building.

(Director Sydney Pollack finally overcame the UN ban on filming in 2004, with The Interpreter.)
At 9th Planet, we’ve had permission to film at almost all of our locations, but we did resort to guerilla filming for two short cutaway shots.
The Personal Space video takes place in a public library. Library staff gave us permission to shoot, and we arranged to come in early, before the library opened, for the bulk of the filming. But one short scene, demonstrating public restroom etiquette, required shooting in the restroom – which was open to others in the building besides the library.

Since we were there early, we decided to shoot the restroom scene first, while there weren’t very many people around. Tristan and David, our two actors, went into the restroom first to make sure it was empty. We didn’t want to barge in with a camera if it was occupied. We waited for one gentleman to leave, then after making sure we had the room to ourselves, we brought in the camera for a couple quick takes.

We were nearly finished shooting when someone else came in. He stopped short, obviously taken aback to find people with a video camera filming in a restroom. We told him we’d be done in just a minute, and he went back out. After a few more short takes, we packed up the camera and left. On the way out we apologized to the guy for making him wait, then went back into the library for the rest of the shoot. We were polite, and he was understanding.

The second cutaway shot took place on a light rail commuter train. We bought tickets and boarded the train at the beginning of its run, before it filled up with too many people. We found three adjacent seats and Tristan and Melva took two of them, with the camera situated across the aisle.

At the first stop, Tristan got off the train, then turned around and immediately got back on. He walked down the aisle and took his seat, leaving a vacant seat between himself and the “other passenger.” At each of the next few stops he repeated his actions for a few more takes.

Since we weren’t recording any live audio for this scene (in the video, the scene plays under Bob’s voiceover) we were able to talk to each other about what we were doing, even while we were actually shooting. Other people in the car were watching us and talking among themselves. People like movies, and I think most of them enjoyed seeing what we were doing. I imagine they told their friends later about seeing a movie being made on the train.

After checking to make sure we had usable footage, we all got off and waited on the platform for a train going the opposite direction to take us back to our car.

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There’s Something About Bob – Part 1

Bob’s name was actually a joke.

When Melva’s initial concept for 9th Planet was taking shape – Tad Shy from another planet, stranded on Earth, learning social skills and some mac repairs from his personal robot – she asked Tristan to suggest a name for an omniscient ship’s computer. A personal robot who is eager to learn the latest technologies in this world. In the middle of something more important – either YouTube or a video game, he doesn’t remember now – Tristan tossed out the blandest, most boring name he could think of.

Bob.

That did it. The robot’s name was Bob. During all the in-depth development meetings that followed, Tristan kept complaining,“ It was a joke! I didn’t think she’d take me seriously!” But it was too late. The robot’s name was Bob. Nothing we could do about it.

It’s important that Bob be accessible. Friendly. Who’s going to take advice from somebody named X-931-70? Nobody, that’s who.

But listening to a guy named Bob? Piece of cake.

Bob is the teaching voice in the 9th Planet videos. Does he exist? Who knows? Is he worth listening to? You bet.

Bob doesn’t lecture Tad about what to do. (Well, maybe a little, but he tries not to.) Bob gives Tad advice. He’s the little voice in Tad’s head – in all of our heads, maybe – that reminds us of what we sometimes know but don’t always think of in time. He’s Jiminy Cricket to our Pinocchio.

Bob can explain what Typicals are thinking to someone who doesn’t understand Typicals.

And, frankly, a lot of Typicals probably wish they had someone like Bob to tell them what’s going on every now and then.

Drama – A Social Skills Teaching Tool

“I am confused by life, and I feel safe within the confines of the theatre”

            Helen Hayes

A theatre stage may seem an unlikely place to teach social skills to highly anxious aspies.  Then again, maybe not.

Hans Asperger seemed to think there was merit in the idea of using drama to teach social interaction.  His program director, Sister Viktorine, used theatre techniques in the classes she taught to boys on the Spectrum.  Unfortunately, she left behind no records of her classes before she was killed in an Allied bombing attack on the hospital ward where she worked.

The connection between drama and social skills teaching for aspies makes a lot of intuitive sense.  Take plays.  Plays have routine and structure.  Plays offer a venue where Aspies can safely and impersonally practice interactions with other people.

Then there’s improvisation. Improvisation uses a predictable and supportive system in which Aspies can practice the art – and skill — of observing others and working with others as part of a team.  Improvisation uses a step-by-step, rule-following process designed to help reduce anxiety.  The founder of improvisation, Viola Spolin used a “what if” approach in her acting classes. What if you were talking to your grandmother? What if you were talking to a child?  The goal of her improvisation classes were to get the actor away from thinking about himself or herself and put them in touch with the situation.  BINGO!

Not to mention, performing scenes, working backstage and doing improvisation skits is fun. These activities might catch the attention of even reluctant participant/players.

Drama therapy is a 33-year-old clinical profession which successfully uses principles of theatre in a variety of therapy contexts.  It is more recently being used in social skills programming with people on the Spectrum.   For example, the Spotlight Program, developed by the Northeast Arc in Massachusetts uses drama to teach social pragmatics to youth ages 6 to 22. Shenanigans is an improvisation-based program for youth with Autism founded by the grandmother of a young man on the Spectrum in Georgia.

Many participants in these ASD-centered drama programs report positive results. Actors in The Spotlight Program say, “I’ve gained friendships and learned new games, how to be more mature and how to interact with others” (North Shore ARC, 2008, p. 1). Another says, “I’ve learned to recognize myself in others” (North Shore ARC, 2008, p. 2).

A news report about Shenanigans describes the experience of a mother whose son participated in their program: “Acceptance eluded 14-year-old Sammy, until Shenanigans. Sammy’s mom Christina Seidel said ‘He’s had a real rough many years of not fitting in. It’s given him self esteem, more confidence and he’s just happier.’” http://www.11alive.com/news/article/239881/40/Improv-helps-autistic-Atlantans-take-center-stage

The research on using Drama Therapy programs to teach social skills is fairly new but highly promising.  As with all teaching and therapy methods, it will take a lot of trial and error (and improvisation) to develop a solid body of scientific evidence about the positive effects of Drama Therapy.  But, plain and simple — drama-based teaching offers all the basic elements needed to effectively teach social and pragmatic skills to ASD learners.  Here’s to support for continued growth these promising programs!

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Autism, Inertia and Scriptwriting

In physics, the term “inertia” means that an object at rest tends to stay at rest until it is changed (moved) by a force. It’s a term that might also be used to describe the behavior of some people on the Autism Spectrum who don’t start a task, adjust to changes or do a job without prodding from an outside source (often a parent).
Many neurotypicals sometimes dismiss this behavior as a sign of laziness. But it’s far more complex than that. And it’s certainly not deliberate.
It’s possible that ASD individuals need prodding because their neurological wiring equips them with the ability to receive large quantities of information, but not the ability to process or use it all. This complicates the task of navigating an unruly reality. It’s far less  using to remain at rest than to jump into an unpredictable fray.
Our son (Tristan, a/k/a Tad Shy) talks about this in terms of sticking with a routine:
“Routine is comforting. I like sticking with a routine of stuff I need to do right now. Changing a routine is really hard, even if I know that changing the routine might move me toward an important life goal – like getting a job.”
In producing 9th Planet videos, we’ve all learned about the importance of routine and structured assignments to help us overcome inertia and get things done. Take script writing. Tristan says, “When we were first writing scripts, I had trouble contributing to the work, because we didn’t have a structure. We’d talk about a skill to teach, but didn’t lay out a specific process to get the script written. Then we started having script meetings where we’d talk about different possibilities for situations and what Tad and Bob might say in those situations to teach the lessons.”

“The script meetings make it easier for me to write because they’re now part of my routine. I’m pushed to write a section by a specific time. And when we talk about sections of dialogue, we break the conversations down into smaller parts for teaching, which is also helpful.”
The process of figuring out how to regularly write good teaching scripts has been instructive for us all. For Tristan, the process has offered an important example of how he works best (i.e. “go write a script” doesn’t work, but working through small structured steps with a regular schedule does work).
This learning may translate into longer-term lessons. Tristan says he’s working on learning how to do things without being pushed. According to an annotated bibliography maker that has been helping us out, the structured process we use in script writing might be helpful. He says, “I’m thinking about how to describe my life goals in a manageable list that I can break down into small steps which seem doable and not so overwhelming.”
Who knows? Maybe his list of life goals will look a little like a script.

Video Shoot – Information Interviews

Scenes from a shoot.

The 9th Planet crew is producing a video about finding a job for our third Skill Set. The video focuses on the idea of doing information interviews to build business networks and create job leads, and they are using production video companies online, that also produce video from santa for christmas.

The crew shot a cutaway scene at the Jamie Schultz Photography Studio in Hudson, Wisconsin. In the scene, Tad’s friend, Daphne, learns about what it’s like to work in an independently-owned photography business.

A huge thanks to studio owners Jamie and Karl Schultz for opening the doors to their spacious, arty studio in downtown Hudson. Also thanks to Bernadette Lantz, and Sarah Krentz for playing the roles of Daphne and the photography studio owner.

The Sandy Hook Shooting – Autism and Empathy

The Connecticut School Shooting – Autism and Empathy

The Houston Chronicle reports that a former classmate of Adam Lanza said, “If you looked at him (Lanza), you couldn’t see any emotions going through his head.” The presumption here being that Lanza’s apparent lack of empathy seems to confirm his Asperger’s diagnosis and may explain the motives for his violent behavior.

This is wrong. It is commonly assumed that people with Autism can’t feel empathy. The truth of the matter is, many on the spectrum feel enormous empathy. In fact, they are overly sensitive and often find it extremely difficult to regulate their empathetic feelings.

When asked, individuals with Asperger’s Syndrome confirm this. A few years ago, young people on the Spectrum talked about their ability to feel empathy in a website discussion on Wrongplanet.net:
“If anything, I struggle with having too much empathy” one person commented. “If someone else is upset, I am upset. There were times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.”
Another individual said, “I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”
So why do pundits and commentators leap to make the Aspergers-Non-Empathy-Violence connection when talking about the school shooting in Connecticut?

Because we all want an answer to this senseless killing and we’d like it to be one we can understand. But Autism, like the truth, is complicated. And leaping to a conclusion that Adam Lantz’s autistic tendencies can help explain his violent outburst simply invites a discussion that takes us backward rather than forward and does nothing to help us do the hard work of understanding what happened at Sandy Hook Elementary.

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Ability Online – a new 9th Planet partner

http://www.abilityonline.org

9th Planet videos will be available to young people who are registered users of the Ability Online network.  As a bonus, Tad Shy will be participating on website forums to make friends and share his experiences about being on the Spectrum.

Ability Online is a free, monitored and secure online social network that allows young people with disabilities, chronic illnesses or other challenges to connect with friends, share stories and updates, and most of all feel included. Having a disablity does not stop you from becoming a Computer Geek, everyone has the right to explore the world of internet. No other organization offers a program where the child can be in the safety of their home, using a computer or tablet, to interact with other children facing similar challenges,
The service just celebrated its 20th anniversary and has helped more than 40,000 registered members since its inception, including 2,000 current active members. Most come from Canada, with about 23 per cent from the United States and about 2 per cent from the United Kingdom and Australia.

In addition to fostering friendships among children, the service partners with 200 health-care organizations that provide support to parents, teachers and professionals. Each group of adults has their own special homepage where they can participate in forums, share resources and support each other. Homepages for children offer online mentoring, tutoring and job coaching.

A special friendship-builder portal for children with autism provides online role-playing, forums and problem-solving.

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