Mardi Gras and Autism: the Right to Party!

(the following content was originally as the content of a TEDx talk delivered by the author on September 10 2016)


  When I was 13, the Beastie Boys had a radio hit that I loved, “Fight for your Right to Party.”  I want to know, seriously, is there a universal human right to party?  When society decides to celebrate, who’s getting an invite?  And who’s being excluded?

Mardi Gras is the definition of an open-access party.  It’s not one parade on one day.  Mardi Gras is a month-long public celebration.  We have 68 parades, called “krewes”, each with it’s own theme and history.  Thousands are present, all ages, all backgrounds, all partying more or less together. 

The beads are a real thing, the flashing not so much.

This is my friend, Jhett, celebrating Mardi Gras, and fully exercising his right to party.  Jhett is about the age I was when I was listening to the Beastie Boys.  Jhett is marching for the first time in Chewbacchus, a sci-fi themed parade with 800 costumed marchers.  Members of this krewe make their own floats and costumes.  It’s all DIY, irreverent and very, very funky.

As you can see, Jhett likes drumming.  He also likes animation, composes electronic music, sketching and reading.  He’s artistically gifted, academically advanced, eloquent, creative and very, very funny.

Jhett also jumps up and waves his hands when he gets excited.  He often speaks way too loudly.  A routine annoyance will often make him explode with frustration.  He dislikes most flavors and textures, and subsists on soynut-butter crackers, waffles and poptarts.  He is sensitive to smells and textures.  He sometimes has trouble connecting socially with peers.

As you may have guessed, Jhett has autism.

Autism is, essentially, a different way the brain can be “wired”.  People with autism perceive the world differently through their senses, and they to think and express themselves differently.

Above all, autism is characterized by diversity.  Autism is characterized by supreme hypersensitivity in some areas, a great lack of sensitivity in others.  A great strength here, a great deceit there.  And each of these qualities exists independently of the others.  Individuals with autism may have any one of he above symptoms in strengths in any degree and in any combination.

The way we tend to picture autism doesn't necessarily reflect the diversity and breadth of the spectrum.

Autism is not a binary.

It isn’t even a linear spectrum.

The diversity of the autistic spectrum is multi-directional, and might be best represented as an entire, three dimensional field of potential profiles.

There’s no one profile for autism.  So how do you accommodate autism?

For the answer, let’s go back to Jhett.  Here we find him drumming away, well into the third hour of the parade, having just marched 3 miles.  And all while carrying a heady drum and cymbals.  
People in the crowd are yelling, smoking, waving lightsabers…

We know about Jhett’s sensitivities.  How is Jhett keeping it together?  How are the autism and the party coexisting here?

The simple answer is practice, practice, practice… and accommodation.

My nonprofit, NOLArts Learning Center, prepared a group of teens with autism for nine weeks to get them ready for this event. 

So how did we get our krewe party-ready?  Most of those nine weeks were spent doing what every Chewbacchus parader does- making costumes and props.  Of course, our group had a variety of abilities and learning styles.  So every task was broken down into very bite-sized pieces and presented in different ways- visually, verbally, hands-on.  And we gave plenty of support where it was needed, with prompts and redirection. 

Novelty and chages to routine are usually tough for those with autism, so we had to make this We spent hours rehearsing, becoming familiar with the expectations and environment and building a social rapport.  And on the night of the event, we had some accommodations like noise-canceling headphones and soft, flexible drum straps.  

We chose Chewbacchus as our entry point because of the atmosphere of acceptance and the celebration of eccentricity.  To quote another song, a New Orleans brass standard, here you get to “Do Whatcha Wanna”.

Now, keep in mind that what we did is not limited to Chewbacchus, or even Mardi Gras.  These practices and principles apply to all sorts of public events: political rallies, concerts, performances, religious functions, street fairs. 

So this is all very fun, but what is the impact?  Why does it matter?

Our participation in the Chewbacchus Mardi Gras parade matters for one powerful reason:  autistic people need to participate in public life and culture.  

People with autism need to be ready to be active citizens and cultural participants.  Families of autistic people need to prepare them to do this.  Event organizers need to consider their needs in planning and meet reasonable accommodation requests.  

What about YOU, the audience?  The rest of the crowd at that parade or concert or exhibit?  What do you need to do?

Everyone wants to enjoy a parade.  Everyone wants to feel comfortable, to feel welcome.

You need to provide the acceptance.  This person in the audience needs to breastfeed?  OK.  This person in the audience needs to bring a guide dog?  OK.  This person in the audience needs to hop around and wave his hands?  OK.  No problem. 

Your acceptance is the party invitation.  Parents who feel welcome will bring their autistic kids.  Autistic kids who feel welcome will show up.  And continue to show up in the community throughout their lives.

Everyone deserves a seat at the table.  And when we celebrate, everyone deserves to swing from the chandelier.

Need materials? Tools? Autism Society of New Orleans Mini Grant application open this month

Parents and teachers, don't miss out on the opportunity to apply for a small grant through the wonderful Autism Society of New Orleans.  

The Autism Society of Greater New Orleans is once again offering its Mini Grant Program for teachers and families. It has been a great success with many families and teachers from all across the Greater New Orleans area receiving grants to help students with Autism in their classrooms and children and adults with Autism in their community.

Qualified families living in and teachers working in Jefferson, Orleans, Plaquemines, St. Bernard, and St. Tammany Parishes may submit only one grant application proposal per year. Awards may not exceed $300.00 and may be awarded less than the requested amount.

What's on your therapy wish list?  A clay kit?  A paint set?  An iPad? Visit http://www.asgno.org/mini-grant-program/ and "make the ask"!

The peaceful paintings of a nonverbal 5-year old girl

This article on CNN.com showcases the paintings of 5 year old Iris Halmshaw, a nonverbal autistic child from the UK.

http://www.cnn.com/2014/10/09/world/the-extraordinary-art-of-autistic-five-year-old-monet/

Therapeutically, the beauty of an art product is relatively unimportant.  If you can release stress by rolling clay into lumpy balls, represent your relationship with your brother in a series of scribbles, or connect with a peer through stick figure drawings, the process has been successful.  Too many people, kids included, have trouble even picking up a pencil because they are self-conscious about the way their art looks.  We would do well to let go of making it look "right" and instead on using art to help us feel right.

That said, beautiful art is unquestionable meaningful.  In this case, Iris' paintings seem to me to evoke the synesthetic world many people with autism describe.  As she is nonverbal, we can only look into these multilayered, richly textured paintings and try to imagine what she is perceiving, feeling and expressing based on how they make us feel.  Consider it an exercise in empathy.

Sensory Friendly Family Nights

Sensory Friendly Family Nights at the Louisiana Children’s Museum 

Sensory Friendly Family nights have been created to provide a safe, enjoyable experience of the museum for children with Autism Spectrum Disorder and a positive environment where parents and siblings can feel comfortable and welcome.   Sensory Friendly Family Nights are free of charge for children with Autism Spectrum Disorder and their families, and are held after museum hours in order to provide children with autism full access to all exhibits and materials.  These events are two hours and include an art activity facilitated by a Registered Art Therapist, free exploration of the museum and availability of TCARD (Tulane Center for Autism and Related Disorders) staff for parents who may have questions or concerns about their children.  Quiet spaces are available in the Theatre on the first floor and the birthday party rooms on the top floor.  

Future Sensory Friendly Family Nights

January 13 4:30-6:30 pm

February 24 4:30-6:30 pm

"The Reason I Jump", an outstanding new first-person account of autism

http://www.nytimes.com/2013/08/25/books/review/the-reason-i-jump-by-naoki-higashida.html

First-person accounts of autism

Perspective-takking is the root of empathy.  Therapists and caregivers often comment on the ability (or, rather, apparent inability) of a person with ASD to share another person's viewpoint and demonstrate empathy.
Yet we generally find it impossible to really put ourselves "the the shoes" of those we work with.  The inner experience of a person with autism seems impossible to imagine.  The hallmark behaviors of hand-flapping, scripting and so on are undoubtedly familiar, yet ultimately baffling.  We would have greater sensitivity, and greater empathy, if we could somehow assume that perspective for a moment.  And such an insight would satisfy the curiosity we often feel when observing or interacting with a person with autism.  "Why," we wonder "does he always say that phrase?  What is she thinking when she moves her hands that way?  What is it like for him when he plays that video clip over and over?"

First person accounts of autism go a long way towards satisfying that curiosity.  Of course, such books can't tell us a single thing about the experience or motivations of the individuals we know, love or work with, and we should be cautious not to presume that one person with autism feels, thinks and experiences the world like another.  Still, firsthand accounts can certainly give us a clue about the inner lives of the authors and provide a basis to imagine something about the lives of others.

Some of the best:

Thinking in Pictures, by Temple Grandin (this is a classic but her other books fit this category as well: Emergence, The Way I See It, the Autistic Brain and others...)

Born on a Blue Day, by Daniel Tammet (an account of Asperger's)

The Reason I Jump, by Naoki Higashida (outstanding writing by a minimally verbal 13 year old)

There's a Boy in Here, by Sean and Judy Barron (a candid account written by an autistic boy and his mother, including their different perspectives on the same problems and events)

The value of art therapy for those on the autism spectrum

Autism rates are on the rise, and new treatments, such as art therapy, are emerging to meet the pervasive challenges it presents. Many parents look to art to help their child.

In recent years, autism has been featured frequently in the news, and it seems that everyone knows someone whose life has been touched by the condition. What is autism and how is it treated? Autism is a neurological condition present at birth, whose precise cause is as yet unknown. The symptoms of autism include repetitive or compulsive behaviors, social impairment, problems with communication and trouble processing sensory information (such as hypersensitivity to sounds). The most popular treatment is behavior modification therapy, which aims at shaping behaviors through a system of rewards and consequences. In recent years, caregivers seeking alternative or complimentary treatments have a broader range of options available. One such treatment is art therapy.

A happy student displays his art work (courtesy of Harambee Arts)

Broadly speaking, art therapy promotes mental and emotional growth through art making. Unlike art instruction, art therapy is conducted with the aim of building life skills, addressing deficits and problem behaviors, and promoting healthy self-expression. Clients are encouraged to explore and express themselves using art materials; crafting attractive artwork is not the goal (though it may be a happy by-product).

Art therapy is a natural fit for autism for several reasons. One of the hallmarks of autism is impaired communication. Verbal self-expression and language is often especially difficult. One person with autism writes “I just couldn’t get my words out. It was like a big stutter… Screaming was the only way I could communicate.” Art offers a way for people who have trouble “speaking their mind” with words to express themselves directly, without words. People with autism are often highly visual thinkers, and many report that they “think in pictures”. Expressing feelings and ideas through images is very natural for such people and can be a welcome relief from the daily struggle to use words effectively.

People with autism also tend to struggle with social issues, such as interpreting tone of voice and facial expression, and may feel uncomfortable relating to others. One-on-one interactions, such as conversations, are often extremely intimidating and stressful. For such people, working alongside a therapist can be much more comfortable. As the two share focus on the client’s art-making, a powerful bond can be forged without the initial need for direct, face-to-face interaction.

Art can also be a wonderful facilitator in forming connections with peers. Cooperation, turn-taking, respecting differences and other social skills can all be practiced in an enjoyable, natural setting. People with autism may also struggle to comprehend other people’s perspectives; looking at a peer’s art work offers a concrete way to “see” another person’s point of view. Working together on group projects fosters cooperation, teamwork and a sense of acceptance.

Art therapy is ideally suited for addressing sensory processing problems, a pervasive problem in autism which contributes to a great deal of difficult emotions and behaviors, yet is too often overlooked. Seemingly innocuous sensations, such as the texture of carpet, fluorescent lighting, crunchy foods, the hum of a refrigerator, may be irritating, or even excruciating, to people with autism (“like nails on a chalkboard,” as a client once put it). When thus overstimulated, people with autism may become agitated, avoidant or simply “shut down” and become impassive in order to escape the unpleasant stimulus.

One of the most common goals in art therapy is to increase tolerance for unpleasant stimuli, while channeling self-stimulating behavior into more creative activity. Because art is naturally enjoyable for almost all children, autistic or not, they are more likely to tolerate textures and smells they might otherwise avoid when they are part of a fun art process. A child might find that he or she can actually cope with handling slimy, paste-covered strips of newspaper, for instance, when it’s part of a fun paper mache craft project. Repeatedly confronting the stimuli they prefer to avoid helps to desensitize kids to them, making it more bearable when they encounter these sensations in daily life. A child who learned to deal with paper mache, for instance, might then find that handling slimy hand soap was no longer so unpleasant.

Sensory fixations are another common feature of autism. Some people may stare in rapt attention at their fingers as they flick them back and forth or endlessly twisting tiny strips of paper. Repetitively engaging in such self-stimulating behaviors (or “stimming”) can make people with autism stand out, prevent them from interacting with others, and can distract them from other activities, such as school work or play. On the other hand, these sensations may provide some calming, soothing feelings when the person is agitated. In art therapy, the goal is to channel non-functional or inappropriate stimming into socially acceptable, creative outlets.

One child with autism was disciplined at school for his compulsive habit of shredding paper. When taught to use his love of shredding to make collage, the child embraced this new outlet. Today, Grant Manier wins awards for his striking, realistic collages, made with thousands of torn strips of paper and other shredded media. Another successful artist, obsessed with twisting bits of paper, now makes art using twist ties. This type of art making can help turn a behavior that once caused social problems into a form of self expression and enjoyment.

Grant’s compulsive tearing-paper habit turned into beautiful collages

In addition to its efficacy in improving sensory, social and emotional functioning, art therapy is an excellent treatment for autism because it is inherently reinforcing. Kids get enjoyment, stress relief and a boost to their self confidence from tackling art projects or simply exploring art materials. That they are practicing life skills while doing so may not enter their minds.

Art therapy is a unique form of treatment for autism, as it helps mitigate symptom, while also channeling autistic behaviors into an expressive, creative outlet. It promotes communication, emotional growth and sensory integration while also fostering social interaction in a fun setting.