To Be or Not to Be...Included and Belong

To Be or Not to Be...Included and Belong

My family moved to southern Vermont in 2007. We drove across the country from our home under the Hollywood sign in Los Angeles--the only home I'd ever known.

In Los Angeles, I was involved in Joey (John's brother) Travolta's Actors for Autism for three years. Joey's program was for young people like me with high-function autism (HFA), formerly known as Asperger's syndrome.  Every Saturday, we went to his studio to practice skits and be videotaped. The idea was build social skills and show us how we are in real life when others see us.

Because all of us kids were on the spectrum, each of us had restricted interests and didn't really like group activities because it takes us away from our interests. It takes a special kind of grown-up to get and hold our attention. Just because we have the same diagnosis, doesn't mean we have anything in common. And acting is all about being a part of a group, or troupe.

Me with Brad Kopenick, my first great acting teacher!

But then, the lady who took over from Joey brought in Brad Kopenick, an actor and drama teacher, to show us how to make our own individual stop action films about our restricted interests. A filmmaker named Alex Rotaro filmed our progress and eventually released a documentary called "Kids with Cameras." You can see the trailer at this link: Kids with Cameras . It won a lot of awards and I had the best time being an actor...I was hooked.

The DVD with me on the cover

One of the first things that happened when we arrived here was that my mom called New England Youth Theatre (NEYT) to enroll me in drama classes. When they found out I had autism, the people who ran the theatre assigned me to a special acting troupe called Theatre Adventure Program (TAP), which is a group of kids with mixed developmental disabilities. I was in TAP for four years.  I loved the program, but longed to belong to the "regular" NEYT acting troupe--the kids who did mainstream plays like Romeo and Juliet, The Crucible, Willy Wonka, Fiddler on the Roof, the Taming of the Shrew. These kids seemed so full of fun and life; they seemed to be brimming with confidence, singing in the hallways, leaping onto each other's backs, turning cartwheels and laughing together.

I quit TAP because I felt bad that I wasn't in regular theatre at NEYT. I have known since I was five or six that I have autism, but at 16, I was grieving for who I wasn't--someone who could throw my arm around another person and sing in the hallways of NEYT. I was sick of being "that kid with autism." That kid who could count his friends on one finger.

Without TAP in my life, I felt lost. But I felt I wasn't good enough for regular theatre. I was in an in-between place. I concentrated on my Chinese studies.

In spring of 2012, I saw Stephen Stearns, one of the founders of NEYT, at a neighborhood party where his wife was singing in a chorus. I had a friend of my mom's introduce me to Stephen's wife Bonnie, who told me she admired my work in TAP. I realized it was now or never--this was the opening I needed. I asked Bonnie to introduce me to Stephen. And in my usual Aspie way, I was blunt.

"When are you going to let me be in one of your plays?" I asked him.

With Stephen Stearns, one of two founders of  NEYT

"Have you auditioned for anything?" he asked me.

I told him that I hadn't...but I didn't tell him why. "Well, that's all you have to do," he told me.

A few weeks later, I got my courage together and spoke to Michelle, who runs NEYT's operations. She was encouraging and told me that auditions were coming up for Fantastic Mr. Fox--a play based on the book by my favorite author, Roald Dahl. The director was a special woman named Jane Baker who my family already knew and liked. Jane has a great sense of humor and is the kind of person who likes to do the right thing.  My mom and me met with her at the Brattleboro Food Co-op for coffee. My mom let me do that talking. I asked Jane if she would take a chance and let me be in my first regular play.

With Peter Gould, the other founder of NEYT

Not only did she let me be in the play, she gave me the role of Farmer Bean--the meanest farmer of all! I loved everything about being in regular theatre...I loved Jane most of all because she reached out to me and gave me the confidence and support I needed to make it.

Me as "Farmer Bean" in Fantastic Mr. Fox

I didn't make friends in the regular acting troupe, but I was there and felt this was the first step. Plus, I interviewed the other founder of NEYT, Peter Gould, for a class project and he immediately took me under his wing and made me feel accepted. I wanted to show Peter and Stephen that I appreciated their support and prove to them I could be in regular plays at NEYT.

I also enrolled in a Broadway singing class at NEYT. A lot of people with autism have perfect pitch and I'm one of them, but the details of singing are confusing for me. I have a hard time singing my tenor part if my ears hear someone else singing soprano. The teacher, Alissa, is super-patient with me. I am still working on this.

To prove to myself that I had real acting ability and that the Mr. Fox play wasn't a freak accident, I decided to challenge myself by joining Young Shakespeare Players-East (YSP-E), which advertised itself as inclusive with no one being turned away. If you have a cognitive disability and want to do Shakespeare, however, you still have to go the extra mile. After talking privately with Suzanne who runs the troupe, I was accepted  and ended up being cast in three scenes from very serious plays by William Shakespeare. I gave "the breach speech" from Henry V, played Lord Mountjoy from Henry V and Bardolph from Henry IV. I am so glad I did this and I've never worked so hard in my life!

That's me 3rd from the left!

Then, the NEYT audition for Hairspray was announced and I knew this was the Big Test because Stephen Stearns HIMSELF was directing! I was cast in several small roles, including a cross-dressing shop clerk in a pink dress and a wig! I even had to wear a bra!

Again, I didn't become close friends with anyone, which is painful to admit. I know I am socially awkward. But the assistant director, Stephen and Alec, Peter and Henry, who were the stars of the show, made big efforts to make me feel special. Alec even drove me to the cast party on the last night.

Stephen again cast me in several small parts for Oliver! which was the big sold-out 2013 holiday production for NEYT. Although the friends part of being in regular theatre isn't happening as I dreamed it would, I am now comfortable backstage with the others--and there are some fellow actors who talk with me a bit. The hard part for me, as an Aspie, is figuring out how to keep the conversation going and take it to the next level where friendships happen. That piece is missing but I'm hopeful it will come together before I am too old for NEYT.

Here I am (far left) as one of Fagin's gang in Oliver!

I'm looking forward to taking more acting and performing classes this winter and spring at NEYT. And here is what I've learned from being in regular theatre--in life, you are always auditioning. You audition for friends, for jobs, for parts in plays and eventually, for marriage. And hopefully, if it's what you want, you get the part. But then you have to do it--to perform, over and over again, even if you have a sore throat or don't feel like it.

Acting is a very good tool for those on the autistic spectrum. Being able to put yourself in others' shoes is not one of our strengths. Acting can teach us to seem like we are empathic, to modulate our voices and to wait for our turn to speak. These things and others come naturally to many neurotypicals, but not to those of us with ASD.

If you are interested in learning more about the connection between life skills, autism and acting, here are some links:

Voice and Movement

Autism About.com: Drama Therapy

Healthy Living: Drama is Therapeutic

And here is the place I love:

New England Youth Theatre

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School Lunch: the most awkward time of day for ASD kids

When you are in special education at school, every other student knows it. You may as well wear a uniform. Usually, nobody wants to sit with the Sped (special education) kid at lunch.

I learned this the hard way in elementary school in Los Angeles. My one-on-one companion took her lunch when I had mine. She dropped me off at the multi-purpose room where there were long rows of tables crowded with students who all seemed to know each other. It was loud and noisy. Whenever I tried to sit down, the kids would move their bodies so there was no room for me to sit with them.

Many lunch times I would stand up and try to eat my lunch out of my lunchbox. Because of my autism, I don't have very good fine motor control so I would drop my food on the floor. The lunch monitor used to yell at me to pick up and throw away my food because it was dirty. Many times I didn't eat lunch at all. I was very skinny.

Nate, my lunchtime buddy and me (on a ladder), 2nd grade

My mom found out about what went on at lunch and made a fuss, but nothing changed. Then she hired a really cool young man named Nate to have lunch with me once a week on Wednesdays. Nate was 19, an athlete and an actor. On Wednesdays, I became very popular. Everyone wanted to sit with me because Nate was fun. He teased kids and played ball. He included me in everything.

Liam, Max and me on a field trip, 5th grade

When Nate left after two years to join the army, Max and Liam came to my elementary school in the middle of third grade. They had been friends with another boy with autism at their old school. They made me their friend and sat with me at lunch. Then, other kids joined us! This special group knew how to keep me feeling safe and for the first time, I knew what eating lunch with friends was supposed to be like. I sometimes was over the top, but these kids brought me back to earth and accepted me for who I was.

When I moved to Vermont for middle school, my special education caseworker made sure I had a para-educator with me at lunch. Most para-educators are older ladies. When I looked around the lunchroom, I saw that no one else was with an older lady. This made me angry and I sometimes said mean things to her to make her go away. But when my para wasn't with me, I would say stupid things to impress my peers because my social skills were so poor. Some kids took advantage of my inability to make good judgments and had me throw food or say weird things to girls. Then they would laugh when I got in trouble.

Lunchtime has always been the most dangerous time for us Sped (special education) kids. We are put in  a situation that is probably the worst kind for us--large, noisy rooms where lots of different types of students are rushing around, trying to eat (sometimes) but mostly socializing. It is hard for us to figure out the hidden social agenda--what people are trying accomplish with their conversations, how they hold their bodies, who they sit with and even how they dress and what they eat.

Because we can be clueless about how to act in a group, it's easy for others to make fun of those of us with autism. Last year in high school, a group of popular kids asked me to sit with them at lunch and gave me tips on how to "get girls." Because I want what everyone else wants--friends and even a girlfriend--I listened and believed them. These students told me I would impress girls if I wore a certain kind of hat, which is very expensive, so I bought three of them (or my parents did, actually). Then, the kids told me to wear bling, so I took some jewelry from my mom's jewelry box, which was wrong.

After the jewelry incident, my caseworker and my social skills teacher got involved. I went back to eating alone with my para-educator. But I still wanted to eat lunch with my peers--even more than ever.

Once you have a peer sitting with you, one of the main challenges with autism is that you cannot figure out what to say to keep them interested in you. I know that I should ask questions that don't have "yes" or "no" answers. And I have been taught that everyone's favorite subject is themselves. But knowing these rules doesn't make it easy to talk to people who may already think you're different because they've seen you with your para-educator around school.  Or have seen you doing weird things, like having meltdowns.

Last year after the problems with the bullies, I got the idea that I should do something to make my lunchtimes better. Nate is not coming back, so I have to do this myself. All summer, I worked on a plan and got permission this fall to do it.

I started a student activity group this school year called Special Connections. It's a campus club like the French Club or the Chess Club, but is modeled on the Gay/Straight Alliance because it welcomes both developmentally disabled students AND those who are "typically developing." (These last kind are also called neurotypicals or NTs.)

When people ask me how I got the idea for this club, I tell them the truth. I am tired of eating lunch with a para-educator. I want to be like everyone else and sit with my peers. So far this year, one of the Special Connections club members who is NT has sat with me a few times. The funny thing is that it's hard to figure out what to say to him even though I've got scripts about how to start a conversation and know the rules. Maybe this is what being a teenager is like whether you have autism or not. Maybe it's just hard to come up with stuff to talk about that is safe and won't cause trouble.

So far, we've done two activities with Special Connections and I'll blog about these next time. And photos will follows.

Until then, peace out!

Special Connections: Me, Mitch, Damon and Logan, high school

Here are some helpful links about lunch and ASD:

http://www.positivelyautism.com/volume5issue1/section2.html

http://everydaylife.globalpost.com/prevent-bullying-children-autism-10919.html

http://www.blackmorevale.co.uk/Schools-urged-autistic-children-break-times-free/story-18654104-detail/story.html

J’aime le français!

The last time you heard from me, I was on my way to China. I stayed with two families--the Hu's and my wonderful Chinese tutor from Brattleboro, Tian and her American husband. Tian works with an NGO that helps Chinese families who have children with autism. Some uneducated Chinese people think that autism is the result of bad karma from a past life. Tian is working to help them understand that ASD is a medical diagnosis.

China is a very different culture from ours. It is less relaxed and it is very easy to accidentally insult people or make a faux pas. Because of my autism, I basically faux pas-ed my way across Shanghai. 

Let's just say that on the way home from China I made a list of 13 things I would rather do with my life than keep studying Chinese. After all, I was already fluent and my school doesn't offer much beyond Chinese 5, which I had mastered...so time to move on. Which brings me to....

J’aime le français! (Number four on my list of 13.)

Bonjour, je m'appelle Casey. Et vous?

I know that autism has been a big obstacle in my life. It is why I eat lunch alone every day (okay, I have a para-educator with me, but that's not the same as eating with my peers). But autism can also be a gift in certain ways.

Like with languages, I am able to be super-focused on learning languages because I am able to block out all other stuff and dedicate 100 percent of my brain to soaking in French. In the ASD world, French would now be what is called my new "restricted interest."  It kind of like is an obsession but obsession seems like a negative term.

So now I am learning le français both at school (French 1 with Madam Cassidy) and on weekends with my new French tutor, Madam Ashley, who lives in Brattleboro but is from Paris. There are lots of French-speaking people here in Vermont because we are near Quebec, a French part of Canada. There are a lot of families who have relatives across the border. I hear a lot of people speaking French here on the street, in stores and in restaurants. 

Well, au revoir for now!

Chinese is my new art

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Hi everyone! You may have noticed that I'm not doing my art anymore. Let me tell you why.

About three or so years ago, I became interested in Mandarin Chinese because I liked the way the language looked and sounded. It was way different from English!

Plus, there was a teacher at my school from China. Because I like politics, I kept bugging him about Tibet. He never gave me a good answer. His reason for the 1959 invasion was that, "China is Tibet's forefathers."

Whatever.

But I still liked the language a lot and he taught me my first words in Chinese, which are, "Ni hao." This means "hello."  I was hooked. "You had me at ni hao."

This teacher left to go back to China, so I had to find another. One day, I saw a pretty Asian lady at a restaurant in Brattleboro. I followed her down the street and made my mother ask her if she was Chinese. She was! And, she was getting her master's degree at School for International Training.

My mother asked if she would consider tutoring me and she said, "yes." Tian and I became buddies and I am going to see her in China next week!

Yes, in three years, I became fluent in Chinese. It is my latest obsession. It has taken the place of art.

Then, last summer, I was in the local supermarket and there was a middle-aged Asian couple who couldn't make themselves understood. So, I asked if I could help translate for them.  I asked in Mandarin.

Man, were they surprised! The dad, whose American name is Francis, told me he had a son going to school in Putney--a son who is my age and who is named Jefferson after Thomas Jefferson.

Wow! There's a politician's name for you!

So, there have it. Jefferson and I are best buddies and I am going to stay with the Hu family (who? the Hus!) for 10 days in Suzhou near Shanghai.

I'm sorry I haven't been doing art, but when life's changes hit you, they hit you fast!

Here is a photo of me with Jefferson this spring, 2012.

Senator Teddy Kennedy

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Senator and Atty General Robert F. Kennedy

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President John F. Kennedy

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Joe Biden, Veep

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amy pohler

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