You know, a lot of experts say that being on the [autism] spectrum isn’t really a disorder. It’s actually the next step in the human evolutionary chain.”
– Predator, 2018 (the movie)
Autism piqued my attention in the early 1990s when my son was a toddler. I found the early news reports somewhat startling; why was it that an increasing number of humans suddenly had brains that worked differently than brains had previously worked? Where did this come from and where was this going?
All clip art from publicdomainvectors.com
Now, thirty years later, autistic individuals and autism awareness have grown up, and autism impacts a significant portion of the population without regard to race or economic status or anything else.
It is not surprising then that autism is now thoroughly embedded in all aspects of society, from healthcare to education, to the workforce to entertainment, and in mainstream pop culture. This has resulted in television talent show contestants, social media stars, and numerous artist-supported autism foundations. And last year, the publication of a charitable cookbook featuring recipes donated by some of hard rock and metal’s favorite musicians.
The Rockin’ Recipes for Autism cookbook benefits We Rock For Autism, one of the hundreds of the grassroots foundations around the country, many of which are more fully discussed below. These organizations are making a real difference in the the lives of families and communities affected by autism. A number of recipes from the cookbook are reviewed throughout this post.
While it’s clear that autism is an integral part of the world today, its cause and its cure remain unknown. Its short and long term impact on families and society are still unclear to many people. And then you have “2020,” the year-that-changed-everything with its pandemic, social and political divide, and seemingly differing realities. How exactly does autism fit into all of this?
My interest piqued again, about three years ago, as an outsider looking in, I started reading, watching, and pondering autism in the world around me. Below are my four areas of pondering:
- Autism in Pop Culture – Artists with autism and its portrayal in mainstream media;
- Autism and Arts Therapy Research – What scientific studies and autism advocates have taught us;
- Artist Autism Foundations – How advocates around the country are making a difference; and
- Autism in Today’s Reality – ‘Cause it makes me wonder.
Author’s note: As briefly mentioned, this article was written by someone who has never been affected by autism; I am just a person who was interested in learning more about it, and in line with my blog, write about the important role music plays in autism. At the same time I was hoping I might contribute to the effort to promote awareness. I often felt I was barely touching on the subject as the post got longer and longer, but moved forward anyways, despite knowing I could never touch upon it all. After posting the article, I was made aware of two important issues I failed to learn about (although I’m sure there are hundreds more).
One is about the “puzzle pieces” that have long been associated with autism awareness and organizational branding. It was brought to my attention that puzzle piece images are not accepted by a majority of the autistic community; one commenter called it “hate speech.” This is important information that should not have gone unnoticed.
Screenshot of Google search of “autism symbolism”
Paula Jessop’s article entitled Autism no puzzle, nothing wrong with us explains that organizations approaching autism as a “…disease requiring fixing, curing…” are hurtful and upsetting. Jessop further explains that many autistic people prefer a rainbow infinity symbol that represents a neurodiversity perspective. I really do get this. And I think and hope that my contemplative conclusions are in alignment with this perspective. You can read more about The Autism Puzzle Piece Debate: Is it Time for a New Logo? on autisticandunapologetic.com, and sites like neuroclasitc.com, an organization that is a sounding board for autistic voices to “rewrite everything you thought you knew about the autistic spectrum.” I have removed puzzle piece clip art but have left the logos of organizations who include this aspect in their logo.
I also learned that my efforts to write this article in person first language instead of identity first language (“individuals with autism” vs. “autistic individuals”) per my exceptional student training was for naught, as a majority of the autistic community prefers identity first. I have reworded most of the article accordingly.
Autism in Pop Culture
Autism is now mainstream in pop culture and social media, whether as seen in the subplot of a major motion picture (Predator, 2018) or in television characters and talent show contestants with autism. It is a growing presence in everyday life as more and more adults with autism enter the workforce at all levels. Autism awareness and treatment have evolved due to the dedicated parents, healers, and advocates worldwide. All clip art is from PublicDomainVectors.org.
According to an article entitled “5 Famous Musicians with Autism,” autism and autistic musicians are not a new thing. Researchers who studied the musical genius of Mozart, who started composing at age six, theorize that he had autism in 1768. Biographers noted his odd social behaviors, including repeated facial expressions and body movements, problems with impulse control, and negative physical reactions to loud sounds, all known to be tell-tale signs of autism.
Several artists have stepped forward and discussed their autism diagnosis. Marty Balin, lead guitarist and singer for Jefferson Airplane (later Jefferson Starship) was diagnosed with autism as a child, and David Byrne of the Talking Heads, whose diagnosis explains a lot to his former bandmate in this linked Rolling Stones article, Chris France on his New Memoir, and the Last Time He Saw David Byrne.
Quiet Riot YouTube channel screenshot and James Durbin Facebook screenshots
James Durbin, a 2011 4th place American Idol contestant with both Tourette’s and Asperger’s Syndromes, a low spectrum form of ASD, went on to become the lead singer of 1980s metal band Quiet Riot. As People Magazine put it, “[W]hile his tics were apparent on camera – there was one surefire way to cure them – singing.” According to Billboard magazine, James is doing voiceover work for Star Wars audiobooks and various cover bands, not letting autism hold back his success.
In 2018 Kodi Lee, a young musician who is blind and autistic, appeared on America’s Got Talent. When he performs…well, wow. Kodi’s website sums it up:
KodiLeeRocks.com official website screenshot.
He is a 22-year old blind and autistic musical prodigious savant. He is one of only approximately 25 in the world today who possess his extraordinary abilities. Kodi’s amazing gift lies within his musical expression, perfect pitch, and passion for all forms of music. Kodi has an audio photographic memory, in which he can recall music he hears after just one listen. An unbelievable gift in itself, but his musical expression and prowess top even that.
From KodiLeeRocks.com
As to mainstream television, the TNT series Claws, a somewhat punchy and odd Florida based mafia-ish drama series, features the main character’s autistic brother. His symptoms include a constant tapping of the side of his head, an obsession with playing cards, and an extreme naivety, making him susceptible to being preyed upon. The ABC series The Good Doctor features “[a] young surgeon with autism and savant syndrome [who] uses his extraordinary gifts to save lives and challenge skepticism.” Check out this rather thrilling and heart-wrenching trailer:
“Sometimes being different can make all the difference.”
And then there is Carly Fleischman. If you have 10 minutes watch her story on 20/20. Carly answers many questions about what goes on in the brain of a non-communicative person who rates high on the autism spectrum. There is an intense intelligence and wit behind her non-verbal body that rocks, hits, flails, and has tantrums. Carly, who grew up listening to everything her relentless treatment-seeking parents, doctors, and therapists said about her and autism, learned how to communicate as a teenager by typing. She was eager to explain what was going on in her head, things such as:
“‘I know what is right and wrong but I have a fight in my brain about it;’ and as to her body, she almost logically explains that she flails in order to ‘drown out all the sensory input that overloads us all at once – we create output to block our input‘ and to ‘put out the fire.'”
Speechless with Carly Fleishmann YouTube Channel screenshot
In an interview in People Magazine, Carly shows how she has found a voice through social media: she is a tweeter, blogger, and novelist, and even developed her own talk show, Speechless with Carly Fleishman. She also created a video called Carly’s Cafe: Experience Autism Through Carly’s Eyes. I did my initial research on Carly a few years ago, and realized her social media accounts have been inactive since about 2018. I hope she is well.
These expressive mediums simply seem to allow Carly and other individuals on the autism spectrum with a way to use the arts – writing, singing, dancing, painting – as a form of communication, a way to fulfill a basic human need to connect, create, and expand, when all other communication systems fail. And as it has over time, science continues to explore how the creative arts impact, shape, and heal human brains.
Autism and Arts Therapy Research
While science has answered many questions about the brain processes involved in autism, there is still a lot it doesn’t know. Research shows that creative arts therapy is more effective in improving social and emotional engagement, communication, and quality of life than treatment without it.
What is autism?
Psychologists classify Autism Spectrum Disorder (ASD) as a developmental disorder that involves an impairment in psychological development at a young age. Children with autism primarily have issues with sensory processing, social interactions, communication, and can have obsessive and/or repetitive behaviors. Symptoms can vary in vastly different intensities and combinations, and are rated from low to high on a spectrum.
Adam Walton quote meme from 105 Quotes About Autism and Asperger’s on The-Art-of-Autism.org., an eye-opening article.
What does that mean for these kids?
Emotional bonds and everyday social interactions are difficult. They may seem remote, indifferent, and often display behavior that others would consider odd or abnormal, or even just awkward. They may have compulsive interests, movements, and behaviors such as rocking, hitting, and flailing. They prefer routine and have difficulty with change. Some are communicative, some are not.
Where is autism in the population?
According to Autism Speaks, an organization on the frontier of autism research and treatment, it is found around the world and across all populations, ethnicities, religions, and economic levels. Statistically, in 2020, 1 in 34 boys and 1 in 144 girls were identified with autism. Most symptoms tend to appear around age 2-4, oftentimes involving a regression of social skills, with a diagnosis shortly thereafter. Intellectually, 44% have above or average IQ, 25% are borderline, and 31% have an intellectual disability. One-third are non-verbal, nearly half of them will wander or run from safety, two-thirds are bullied, and minorities are diagnosed later and less often. There is no actual medical detection. It affects the entire body; there may also be symptoms of ADHD, sleep disorders, anxiety, depression, gastrointestinal disorders, seizures, and/or schizophrenia.
What is the economic impact of autism?
Economically, more than half of young adults with autism are unemployed and not enrolled in college, but research shows that job activities that encourage independence reduce symptoms and provide for improved daily living skills. Autism Speaks warns that the cost of caring for Americans with autism was $268 billion in 2015 and will rise to $461 billion by 2025 without more effective interventions at all levels, and more support throughout life span.
There is a high rate of underemployment among adults with autism. Thanks to activism, the bipartisan Autism Cares Act was signed in 2019. This bill provides funding for collaboration, research, services, and lifetime needs, including job training, for individuals with autism.
What is the outcome of autism therapy in general?
Many children who undergo therapy for their autism show improvement in later childhood and adolescence. It seems to be a matter of training the brain how to respond to social situations that, before autism, traditionally had been learned in social settings themselves. There is no medication for ASD, although some are prescribed for agitation, anxiety, and depression. But decades of research provide evidence that the behavior patterns of children with ASD can be changed by intervening in the development process, leading to improved communication, social behavior, and brain development. It includes teaching coping skills to reduce challenges.
What is behavioral therapy intervention and how does it work in the brain?
Basically it’s training your brain to react differently to a situation. Applied Behavioral Analysis (ABA) is used to focus on specific behaviors that need improvement, whether communication and social cues skills, occupational therapy for daily life skills, and/or sensory integration therapy to help deal with overload. It makes me think of training yourself to play an instrument; you have to focus and practice over and over before you get to the point where it becomes easy for you to you just pick up a guitar and whip out a few tunes.
Recent research shows a significant decrease in right brain activity after intervention with behavioral therapy, an area which affects withdrawal and negativity, and an increase in left brain activity, an area which affects higher approach motivation and positive emotions. Research has also focused on mirror neurons in the brain, those that are activated when we see someone else doing something and our neurons behave like we are doing the same thing; studies show these neurons do not seem to work the same way in people with autism.
What is music therapy to autism; why does it work?
This article What Can Music Do? Rethinking Autism Through Music Therapy explains that music therapy was “discovered” 50-odd years ago when an acclaimed pianist played for a non-communicative, non-emotive young boy who had been diagnosed with autism. The boy, upon hearing the music, reacted with movement: when the music changed, his body changed; when the music stopped, he stopped; in essence, he had finally communicated with someone for the first time in his life; he then wept and became emotional and animated. It was if his spirit was activated by the music.
The pianist, Paul Nordoff, went on to create the Nordoff-Robbins Center for Music Therapy at New York University. Its research focuses on how music can be a lifeline, and how it can assist in unique ways with unique individuals. The music therapist communicates by turning movements and noises into musical responses; they don’t try to extinguish behavior, but rather rather engage with it as a form of motivation to communicate. This organization has decades of beautiful success stories. Case in point: one child who used to hide under a piano at the center is now a college student and employee cataloguing music therapy sessions.
Of course, there is also the well-acknowledged spiritual significance of music and dance, or whatever it is that takes you to ‘that happy place’ that lets you rest and recharge your weary soul. As one writer so eloquently drops phrases describing this meaningful aspect of life:
[M]usic…brings people together at a level of vibration that transcends boundaries, culture, language, religion, gender, age, color and politics – a place where we can all experience our sameness; …an emotional experience that is uniquely personal and yet at the same time interpersonal; …music that flows through us is really the outer manifestation of an inner urge to express life…; when it becomes a shared experience with others…energies blend in amazing ways.
From Could Music Heal the World? by Dennis Merritt Jones
What goes on in the brain with music therapy?
One neuroscientific study focused on measuring connections within different areas of the brain during communication before and after music therapy. Differing brain connections are a tell-tale sign of ASD, with some areas too connected and others not connected enough. Children with ASD who underwent music therapy showed increased connections where hearing is processed, and decreased connections between hearing and visual processing, possibly decreasing sensitivity. Other research has shown that performing basic tasks to music appears to significantly increase connectivity in white matter pathways in the brain.
This all seems to say that music therapy improves social behavior by both strengthening and softening connections between brain areas, fine-tuning things (no pun intended). Music is like physical rehab for the brain. If the core of our existence is meant to create and expand and connect, it only makes sense that coaching our brains to communicate artfully should be a sure-fire cure for whatever may ail our over-stimulated minds.
As Eileen Reynolds states it so perfectly in her article What Can Music Do? Rethinking Autism Through Music Therapy:
That these [musical] experiences provide such a powerful sense of emancipation shouldn’t be surprising. After all, music is what we turn to when we don’t have the words to express what we feel. It’s what we crave when we’re celebrating, when we’re grieving, when we’re falling in love. Music is what makes horror movies suspenseful and what makes us tear up at weddings. It connects us to other people.
Artist Autism Foundations
Given the prevalence of autism and the positive results with music therapy, it’s not surprising that many musicians have been touched by it in one way or another, or that autistic musicians have entered the rank of pop culture fame. Nor that numerous hard rock and metal musicians around the country have ties to autism foundations. One of the more recent projects is from fellow Floridian Kenny Wilkerson, bassist for the ’80s era band Nova Rex, who are still playing shows and in high demand. Wilkerson gathered favorite recipes from fellow rockstars and compiled them all in his charitable project cookbook, Rockin’ Recipes for Autism.
Wilkerson, whose son Gunnar was diagnosed as being on the autism spectrum, noticed early on that his son was different when it came to socialization, and like other parents and teachers, wasn’t sure how to handle him; what worked with other kids didn’t work with Gunnar. Once his son was diagnosed, the family went through the “grief, exhaustion, anger, hopelessness, anxiety, and fear” that goes along with such news.
The coffee-table worthy Rockin’ Recipes for Autism is just one way autism advocates promote awareness and raise funds for therapy services.
Like other parents, they dived into research and support services, and learned what works and educated others – schools, family, friends – about autism. As Wilkerson puts it:
I learned that there is an abundance of gratitude, support, grace, hope, happiness, acceptance, and love in our lives – thanks in part to autism. I have learned humbling lessons from this journey. Gunnar grounds me. When I’m having a hard day, I think about how tough each day can be for him. I know my son is a work in progress, but that’s ok because we are all a work in progress.”
From Rockin’ Recipes for Autism Cookbook, Volume 1
Wilkerson recognizes he was lucky to be able to pursue his musical dreams and meet and work with so many influential rock musicians, and wanted to give back somehow. He reached out to the rock-n-roll community and put together a glossy coffee table-worthy book featuring 57 musicians, including members of Ozzy Osbourne, Poison, Quiet Riot, Stone Sour, Warrant, Whitesnake, Evanescence, and Queensryche. And as you’ve likely noted throughout this post, my friends and I have reviewed a few of the recipes.
The Rockin’ Recipes for Autism cookbook supports WeRockForAutism.org, whose mission is to improve the communication abilities of individuals on the autism spectrum with music therapy services, and promote autism awareness and acceptance throughout their South Florida community. They have a board-certified music therapist on staff, host sensory-friendly events, and when proceeds allow, provide communication assistance devices. The foundation, like most, was started after a family member was diagnosed with autism, and they began dedicating their lives to making the world a more accepting place for individuals with autism and their families.
Logo from WeRockForAutism.org.
Cheap Trick’s founding bassist Tom Petersson created his Rock Your Speech foundation after noticing that his son Liam, who had a speech disorder related to the spectrum, was encouraged to vocalize by listening to music. He explains: “I started to keep a journal about all the things I wanted Liam to learn to talk to us about – basic things like “I’m hungry,” “I’m tired,” or “I don’t feel good.” We incorporated these themes into rock songs that don’t sound child-like, but teach language in a very simplified and literal way. We wanted to use just enough words and lots of repetition, just like we do in speech therapy.
Screenshot from RockYourSpeech.org
One of the first songs we recorded was “What’s Your Name,” and an amazing thing happened. Liam started to ask everyone he saw, “What’s your name?” This evolved into lyric videos and the popular Rock Your Speech recording that teaches speech and language skills with rock music.
In 2012, former Anthrax guitarist Dave Spitz, who has twin boys on the spectrum, wrote and recorded a song about autism with Megadeth‘s Dave Mustaine; Puzzle Box was released by his Red Lamb Anarchy for Autism project. Rolling Stone magazine summarized: “Raising awareness of autism in the metal community was one of Spitz’s inspirations for the song and its fact-filled video.
Facebook screenshot for Red Lamb Anarchy for Autism project and tour
“I can understand why people are scared to talk [about autism] in other forms of music. But the way I was brought up in metal, that’s what thrash metal was,” Spitz says. “If you read our lyrics, it wasn’t, ‘Hey baby, I love you.’ Whatever bothered us in every day life, that was Anthrax. So we did the same thing with Puzzle Box. We were like ‘it’s time. People need to know what we’re living here.’”
Back in the olden days of 2020 (February-ish) when concerts still existed (alas…), I picked up this Autism Shifts business card at a concert booth at Jannus Live in downtown St. Petersburg, Florida; Autism Shifts is a Tampa Bay/Central Florida-based foundation with a goal of ensuring that “… each person’s Uniquabilities are embraced, where work environments and communities are inclusive and where life is lived on purpose!”
Business card from booth at local concert venue
They provide programs and services that focus on specialized training, resources, and connections in the community and workforce, with an emphasis on employment. Individuals with autism, parents, caregivers, and local employers are all offered safe places to connect. A look at their events calendar provides insight into the wide variety of virtual support programs they provide.
RockAutism.org is a Buffalo, New York based non-profit whose goal is to raise funds to for the development of high-quality music and arts programs that provide marketable skills for autistic youths, as well as increase positive social perspectives of the disorder. According to their website, the organization was started by a Buffalo-area musician, who along with his father, dealt with their autistic brother Sonny during his teenage years in the 1990s.
Logo from RockAutism.org
The only thing that ever kept Sonny in balance was music, and his family wants to intervene with autistic youth so they don’t go down Sonny’s troubled path. RockAutism holds awareness and fundraising concerts throughout the year, including the annual 2020 Rock Autism Music Festival, with proceeds going to four local organizations that provide arts treatment to children on the autism spectrum.
I learned about the the Ed Asner Family Center watching AXStv one day; I continue to be amazed at all of these amazing foundations out there. Asner, whose family has been deeply affected by autism, had a “dream to establish an oasis of creativity in every special needs community.”
Logo from EdAsnerFamilyCenter.org
As well as addressing unemployment and employment opportunities for autistic people, the organization provides support for the entire family of children with autism. They liken support for parents to flight instructions to put your own oxygen mask on before you put one on your child, because you can’t take care of them if you don’t take care of yourself. A look at their activity calendar shows songwriting, recording, voiceover, dance, art, painting through music, photography, comic book writing, as well as yoga, martial arts, LBGT groups, and poker nights for dads.
This is just a small sampling of the strong grassroots support systems around the world; what both famous and everyday people are doing to bring autism acceptance, awareness, treatment, and most importantly, hope, to those affected by autism. Like the cookbook, community foundations are finding creative ways to make a difference. All the more reason that you should treat yourself to a new conversation-starting rockstar cookbook, attend that concert fundraiser, hire an intern or employee with autism, or simply donate an iPad or cash to your local 501(c)(3) autism network.
Autism in Today’s Reality
All the world’s indeed a stage, and we are merely players, performers and portrayers, each another’s audience outside the gilded cage.
From the song Limelight by Rush
Can anyone agree on what is real anymore here in 2021? Do reality stars depict reality? What is fake news and what isn’t? Have you ever had imposter syndrome? I think we can all agree that reality is more subjective than ever. Look at politics – the realities of the left and right (wings of the same bird) are vastly different. Look at Qanon, read about the teenage girl who lived both a “normal real life” and a “famous virtual life” in Rolling Stone‘s The Short Life and Viral Death of Bianca Devins. Your image and reputation are no longer determined by your peers who see you and classify you at the local sock hop or bar or rock concert, or even in the workplace anymore. You are now on the world’s social media stage at large, with all its viral possibilities. You create you, but is it really you? Are we heading into the matrix?
If real is what you can feel, smell, taste and see, then ‘real’ is simply electrical signals interpreted by your brain.
From the movie The Matrix, 1998
Given this seemingly major paradigm shift in reality, could autism be a result of the division and sensory overload of today’s Technical Age? Just as humankind’s thought paradigm was vastly changed by the invention of the printing press that churned out bibles and the Reformation, altering the reality provided by the Catholic Church, are we being vastly changed by the world wide web, right before our eyes?
Think about how technology has changed our world in a relatively short period of time; we were hunting and gathering 11,000 years ago, Greek civilization was 2,500 years ago….yet the invention of the printing press and the mass distribution of information was only 500 years ago, planes 100 years ago, televisions 90 years ago, mass internet access 30 years ago, and cell phones putting the world and everything in it at our fingertips, just 20 years ago.
The baby boomers listened to the radio and then built a world of television and film; their millennial grandchildren stared at desktop computers and then built an expanded world around them; today’s kids – infants and toddlers – are electronically connected 24/7 with cameras, cell phones, and tablets. What do these rapid changes, rapid expansions in human creation, do to the human neurological system, and how is it being passed on and adapted to by each generation?
Whether autism is a physiological disorder whatever its causes, a neurological adaptation to this new digital reality, or one of a zillion other possibilities, whether it is evolutionary in the same context of humans descending from the sea, whether the chicken or the egg, it is now imbued in human evolution. More than anything, it seems to me that we should focus on what autism seems to be teaching us. It’s as if we learn that our brains, our minds, our senses, our emotions, our reality, are more malleable than we give them credit for; it’s as if we should seek out alternate ways to seek out that all-important connection with others, despite and respecting their differing perceptions.
As a Syfy.com article reminds us:
If research into the history of ASD is to be understood and honored, it teaches us that we wouldn’t be where we are as a species if not for the few people who were able to look at the world and see it just a little differently.
From Science Behind the Fiction: Predator suggests autism is human evolution – is that true? by Cassidy Ward
Special credit and thanks to my proofreaders/editors 1Meilani.com and Leigh Ann Nicholson!
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