Jonathan Chase, now 36 years old, wasn’t diagnosed with autism until he was 14 and a freshman in high school. But he was always different. In grade school, because he didn’t fit in, he was a target of bullies. “It’s just a part of growing up,” the school’s staff would say, “and if you don’t want to deal with bullies, you need to learn how to fit in.”
Chase’s life story is a lesson for everyone. Every once in a while, he uses his experience to advocate and give the autism community better assistance at home, in the community, and classroom. Plus, his ability to “see” music helps him bring non-autistic people closer to understanding the autistic mind.
Famous people with autism
A thrill of excitement in the air. Electric-blue and magenta lights smooth out the stage where three men stand. A hum of voices fill the room as musicians tune their instruments. C-cut guitars hang on blackout curtains in the back corner. Lights remain steady, but the sound wakes smoothly with the first verses of the song:
Well she’s walking through the clouds
With a circus mind that’s running wild
Butterflies and zebras and moonbeams
And fairy tales
That’s all she ever thinks about
Riding the wind
When I’m sad she comes to me
With a thousand smiles
She gives to me free
With a classic-rock tone, some soul and blues mixed in, band Kevin Selfe and the Tornadoes creates this Jimi Hendrix tribute by playing “Little Wing” at Blue Diamond Bar & Grill in Portland, Oregon, Chase’s home state.
Over two minutes into the gentle sounds of “Little Wing,” Chase performs a bass solo. He savors his music with an electrified body, and the audience responds with enthusiasm.
As a bassist, his role is more of a support instrument, Chase suggests, but from time to time, he performs a few solos and gets his moments to shine in Kevin Selfe and the Tornadoes, which he often joins to play around Portland, and on small tours throughout the Pacific Northwest.
Musicians who are autistic
Prior to working with Selfe, Chase’s musical background includes working with different bands, where he often took opportunities on short notice, and with no rehearsal at all.
“There were many times where I met the other musicians on the stage for the first time and usually had no idea what we’d play or how the songs went,” he said. “I had to rely on knowing a lot of music and having a very strong ear to pick things up quickly.”
When he was 18, Chase learned music under the mentorship of bassist and former TED speaker Victor Wooten, whose approach to music and life greatly influenced Chase’s work as both a bassist and an autism consultant.
But with his many jobs and his musical life, every day is different for Jonathan Chase.
When it comes to change, in Autism and Asperger’s Syndrome: Preparing for Adulthood (2004), Patricia Howlin suggests that to an autistic person, real life is a “confusing, interacting mass of events, people, places, sounds, and sights.” She suggests that setting routines and structures help autistics cope with fear and establish some sense of order in this chaotic life.
Similarly, the National Autistic Society (NAS), says that “the world can seem a very
unpredictable and confusing place to autistic people, who often prefer to have a daily routine so that they know what is going to happen every day.” Thus, autistics would find some comfort in taking the same routes on the road, or having the same meal on the same plate for every breakfast.
Rules and procedures are also important, says NAS. “It may be difficult for an autistic person to take a different approach to something once they have been taught the ‘right’ way to do it. And sometimes, minor changes such as moving between two activities, can be distressing.” Furthermore, other larger events like holidays, which create change and upheaval, can cause anxiety.
In the Spectrum Disorder, even if people have the same diagnosis, they can all be very different, so the things that work best for one, might not work for another. When it comes to changes, Chase has learned what works best for him, and his approach to dealing with his always-changing routine can help many others, autistic or not.
Chase has days when he is on a night schedule because he works at a bar until 1 a.m. He also has days where he is on a daytime schedule because he meets with clients, or will speak at conferences, among other tasks.
Although he likes routines because they are predictable and structured, Chase has reached a point where that’s not how his calendar looks anymore. So he designed his own system to help manage the unpredictabilities of life. The thing that makes a difference for him is keeping a detailed-item list.
At home, Chase has a whiteboard on his refrigerator where he writes all his tasks broken into different categories. Whether it is things he needs to do for his clients, or things he needs to take care of for himself, his whiteboard has his day mapped out. Although the whiteboard might look messy, every day he goes through the list, writes updates, erases and adds tasks, and it keeps him focused.
The big secret for him is that his list contains not only big tasks that may take a long time or are complicated to complete, but also very little, manageable things, like responding to an email or taking out the trash. That way, he always has something he can check off his list.
“Doing a small task first really gets me started and gives me some momentum, and it makes it easier to check that off and move on to something bigger.”
If he gets overwhelmed, the lists help Chase take things out of his head and make them more manageable in a visual manner. Instead of carrying the workload in his head, the visuals help him to simply choose from easiest tasks, and start to check off items on the board. That reduces his burden for the day.
“I teach a lot of my clients, too, how to make different kinds of lists and find different ways to manage their life or their schedule,” he said. “Changing tasks can be really difficult for a lot of us. But I find that making lists helps with not just starting a task, but transitioning from one to another.”
As office manager at Synergy Autism Center, a center supporting families and people with autism in Portland, Oregon, Chase does one-to-one mentoring with mostly teens and young adults to help them work on social skills and getting out into the community. Working with both professionals and families, Chase also contributes to Individualized Education Programs (IEP), special education programs created through teams of parents, school district personnel and people knowledgeable of the student. He creates routine plans, and provides accommodations and tools to better understand and support students with autism.
“For me, I’m pretty good at synthesizing information, problem solving, and I have a really good understanding of music,’ he said, so he prefers musical environments, especially with jazz in the background.
With his clients, the challenge is never their intellect or their control, but most often the little things, like having extra time when switching tasks, being able to work in a quiet space where they aren’t overwhelmed by sensory information, or performing tasks guided by instructions that are in really clear, black and white terms.
“So the difference between success and failure, for so many of us, is really small,” Chase said. Understanding that, underneath the skin, all humans have different perspectives and different needs is a crucial part of the process. His childhood, however, is an example of another thin layer that autistics can have, and it’s often unseen, especially at school.
In regards to learning, Applied Behavior Analysis Programs Guide (ABAPG) outlines five ways in which autism can affect autistics at school: While students could be more focused on smaller class details that take their focus away from larger class topics, paying attention can be more difficult for autistics, as they can be influenced by “stimulants that barely even register for people who are not autistic, ranging from the texture of their clothing to bright lights to sounds and more.” ABAPG also suggests that it can be difficult for autistic students to engage in activities outside their circle of interests, and while delayed verbal skills can prevent effective communication in the classroom, non-verbal communication such as eye contact might not be available to compensate for this. Thus, many autism organizations and support centers encourage IEPs that focus on teaching skills that prioritize the actual needs of autistic children.
Despite the existence of these programs, however, there are still challenges in better assisting autistic students, such as improving identification and awareness of autism, and the staff’s education in the public schools system.
According to Asperger/Autism Network (AANE), for example, “Dr. Tony Attwood estimates that as many as 50% of people with AS remain undiagnosed, in part because the Asperger traits have only recently been publicly recognized on a broad scale.” ANNE suggest this is due to “traits that are mild enough so that they manage to adapt and function sufficiently well to be considered merely eccentric or quirky. Many Asperger’s traits blur seamlessly into more typical profiles.”
On the other hand, when it comes to school systems, Christina Raiti suggests that while new laws, organizations, and scientific knowledge of autism have improved school’s understanding of autistics, within the classroom, the problem might remain. “Yes, disabled children were now allowed and accepted in public schools and yes, there was now a plan for them. However, it did not mean they were respected,” Raiti writes in regards to a school reform, the Individuals with Disabilities Education Act (IDEA), which ensured that students with a disability were provided free appropriate public education tailored to their individual needs since 1975.
A few years after IDEA came into effect, IEP was built to better assist children according to their annually observed need, suggests Raiti. But it wasn’t until the ‘90s that, what might have been a few schools’ misunderstanding of autism, schools headed toward the continued use of damaging punishing techniques, suggests Raiti.
“Scream rooms were often rooms with a single color wall, contained a chair/desk, no windows, and a door. They were used for children with disabilities as a form of punishment. A characteristic of children with autism is self-infliction of pain. The children would be kept in these rooms for hours at a time and would often scratch the walls, hit their heads, or cause harm to their bodies as an escape from insanity. Verbal abuse was utilized to deal with these children because teachers lacked patience and did not necessarily care about the children because they were still undervalued in society,” Raiti writes.
Although for Chase autistic signs were always present, his school situation only worsened with time.
For most of his childhood, Chase was bullied by classmates and ignored by staff at school. Because he was the youngest and smallest in his class, bullying started with little things escalating into full-on beatings on the playground every single day.
Students would grab his arms and legs, and throw him off of a hill at the end of the playground. When that wasn’t enough, a couple of kids would hold him down to the floor or wall so others could beat him. And if Chase retaliated, they would tell the staff that Chase was the instigator. Not knowing how to advocate for himself, Chase was suspended plenty of times for picking fights.
His parents were often told Chase was a troublemaker; that there was something wrong with him because he couldn’t get along with the other students. One day, the school principal even gave him a gift in exchange for keeping the bullying happening at school between the two of them.
Chase did not like school at all. To him, it was a place where he was misunderstood, and where plenty of times in the sixth grade, the staff locked him in the special-education room when everybody had left. The staff would put a chair under the door, and Chase would then be unable to get out.
His autism story, however, started when a woman from the school district followed him around from class to class. “She is just evaluating the class,” the teachers would say. But she always ended up sitting behind Chase, observing him, and taking notes.
When he was diagnosed with Asperger’s Syndrome, a form of Spectrum Disorder, Chase was resentful that these people had gone behind his back, sneaking around, and spying on him.
Also around this time, the staff started to show him understanding, but Chase was now offended by their attempt to support him. He felt he had been asking teachers for help for so long and they didn’t care about him until that day. And although the diagnosis itself made sense, the way he was treated before made him not want to trust other students or the staff’s intentions anymore.
In Chase’s family, autism walked into their lives differently.
His parents for so long said that they wanted to believe their son was not a troubled student. But the school always told them something different; they couldn’t see that there was a lot more going on. As the diagnosis came, it made sense to his family, too, but along with the disability, stigma brought speculation of a future life full of limits.
“I remember they were telling my parents how I scored on a test, one of the evaluations, and they said, ‘He failed the motor skills test so he’ll never work with his hands, and he’ll never work in any field that requires manual dexterity.’” They told him that because he was autistic, he would never have a career, he would never drive, and he would never be independent, as it was assumed he would have poor executive function as well.
After his diagnosis, Chase’s situation only worsened. He was put in the troubled-kids program, where 14- and 15-year-old students were into buying and selling drugs, instances of violence happened constantly, and theft was part of a regular day for many.
“I felt like the school was saying, ‘If you’re different, this is where you belong and this is who you should be,’” said Chase.
Some of those kids ended up committing vandalism, some ended up going to jail for their crimes. Although most of them were there for behavioral issues — unlike Chase, who needed individualized assistance — they were all Chase’s friends, and the only people that he managed to get along with.
Despite Asperger’s Syndrome, assumed limitations, and circumstances, a few years from his diagnosis, Chase was a full-time working bassist, and had a future as a public speaker ahead of him.
The beginning of Chase’s independent life started when he began working full time. Working in bars, Chase got his first bass guitar around sophomore year, and he had such an interest in music that, two years later, he dropped out of school to start working a full-time job in a band with musicians of his parents’ age for three or four nights a week.
Looking back, Chase suggests how ironic it is that he got away from drugs and alcohol at school by getting involved in music, a passion he shared with his father, whose death would later make him face the most difficult decisions of his life.
“My dad and I were the best of friends. We were so close,” said Chase. And when he passed away, suddenly and unexpectedly, “it was really difficult for all of us, for me, and my mom, and my sister.”
After late nights playing in bars, Chase’s father would give him a ride home. He would always pick him up at 1 in the morning. But when his father passed away, Chase’s love for music helped him overcome his fear of driving, which made Chase face his new reality: that he had to learn how to become an independent adult.
Learning to drive, one of the limits he would have according to the autism specialist back at school, was the turning point for Chase. Now, he had to step up and really see what he was capable of, so he found a driving instructor and worked with him until he was a confident driver.
Through his driving lessons, Chase also found that for driving, it wasn’t managing the car, or physically operating a vehicle that was the barrier. It was all the same anxiety from being told it was something he couldn’t do.
Without any special accommodations, Chase received his driver’s license at age 27, and today, he can’t imagine his life without being able to drive himself around, especially when giving conferences, or when a gig shows up for the band.
Just like he maps his day visually on his whiteboard, Chase’s visual understanding of music helps him explain his autistic mind, too.
“Both musicians and people with autism tend to see things a bit differently,” Chase said in a TED conference. “To explore the ways that we think differently, I asked dozens of musicians what they think of when they hear the words ‘C major.’ Their responses were varied and interesting: all white keys, the people’s key, all natural, uncomplicated.”
But his own internal process is a little different, he explained. When he thinks of ‘C major,’ a horizontal, zig zag wave with two crests and two troughs is what he sees.
Chase does not have synesthesia, as he explained, he doesn’t see sound in color, but he is very visual, like many people in the autism spectrum. Whether it is writing, planning his entire day, or playing music, he always organizes information visually.
“Music is the most complex thing that I know, and my mind creates a visual reference to manage that information. I see chords, scales, and melodies not only as sound but as shapes.”
Like in many guitar learning apps, Chase see his bass as a grid with the strings laid out in lines. When he plays a note, a dot appears on the grid, which his mind creates like a hologram in the air in front of him when he plays.
“I even see it when I hear a song on the radio and I imagine how I would play it,” he said.
Going back to C major, the scale lays out across the strings, and he looks at it in note names or in dots. The root note is always circled because that’s the most important note in his reference point no matter what he is playing.
“As I play through the scale, I connect each note to the next with an imaginary line and my scale becomes a shape, music becomes a game of connect the dots.”
When he plays, he can remove the grid and even the dots, and see everything in a series of shapes, zig-zag lines, for example.
“The harmonic minor scale has a different sound and a different shape. I think it sounds pretty cool, too” Chase said. “The scale is made up of seven notes. Half the notes are chord tones and of the most important notes, and the other half are non-chord tones or extensions, which are less important in my mind. I can visualize that the chord tones are green and the extensions are blue. Now, my visual scale has both shapes and colors.”
But when he plays, in reality he doesn’t see only the notes he is playing. Chase sees all the notes he isn’t playing, too. Like a Christmas tree with red dots, even the notes that are not used in the scale, light up his imaginary grid, which represents his bass. And depending on the scale, chords, notes, and more, different colors and shapes appear in Chase’s almost-holographic mind.
“I am a visual thinker, which is not unique, my musical system isn’t unique either,” he says because there are many other musicians who use visual cues, layers or shapes in their understanding of music. What sets Chase apart is that he is autistic, and like many people on the autism spectrum, it’s not just in music, but in his entire mental processes that he has extra layers and additional steps.
“The difference between me and other musicians is that they can put the visuals down when they put down their guitar, but many of us carry those extra steps with us everywhere we go. Our minds are filled with layers, extra steps, and the detailed analysis for even the smallest things.”
Having a conversation looks simple from the outside, but in an autistic mind, Chase says that there are processings of layers of information far more complex than the key of C major. Body language, eye contact, word choice, syntax, grammar, and more pieces of information are all mapped out with the same or greater detail and complexity as a scale on his bass.
At the end of this conference, Chase always emphasizes that everyone has a unique perspective, even though it often seems that everyone shares the same view of the world. “I played music for over 10 years before I learned that not everyone sees ‘Autumn Leaves’ as a bunch of limes,” he said. “My hope is that when you leave here today, you’ll take a moment to look at the people around you, and recognize that although you all shared the same experience, everyone has a unique perspective, and you can’t always see it from the outside.”
Like his music, “there are things that I can work on, but you can’t really change how your brain is hardwired.” With a sensory processing disorder, he suggests, autistics can learn to accommodate and even advocate for themselves.
“We are going to struggle in certain areas, like transitioning from one task to another, or needing some extra processing time, or doing better in an environment that’s not overwhelming with sensory stimulation. But the difference between my childhood and my adulthood is: I’m much more self-aware, and I’m a lot better at advocating for myself.”
One of the biggest things Chase reminds people of is that all kids grow up, even kids with disabilities. No one is going to be the same person at 24 that they were at 14. The difference is how much young people are supported in becoming the adults that they want to be.
Sometimes people get so wrapped up in the crisis of the day and lose sight of the big picture, Chase suggests. Being so focused on getting through the day, or through problems with kids at school, limits everyone in realizing that some children spend their most powerful years of development focusing all of their attention on the academic skills.
“I want to remind parents: The purpose of school is to prepare your child for real life. But instead we end up spending their whole lives getting them ready for school.”
When he looks at the things he does now —he drives his car, he has a career, he lives on his own, he runs his own business, and he travels around the country— Chase knows people think that he has always been able to do all these things.
“They don’t recognize that challenging childhood I had as a kid, and they look at me and they say ‘Well, you couldn’t understand because you don’t look like my kid. My kid couldn’t stand in front of a group and speak, he couldn’t shake hands and make eye contact either.’ When I was a kid, it was extreme enough that staff locked me in a closet in the sixth grade because they didn’t know what else to do with me. But I have put in a lot of work to get to where I am now: with some level of success and an independent adulthood.
“I think there’s no excuse for us, for the community to accept failure for these young people. It’s really important to me that we lift people up and raise expectations and empower its next generation of young people with autism or any disabilities, to be as independent as they can be, and work towards the goal that they set for themselves.”
SOURCES
Autism and Asperger syndrome: preparing for adulthood by Patricia Howlin (2004)
Synergy Autism Center of Portland Oregon
Asperger Profiles: Prevalence By Asperger Autism Network
Obsessions, repetitive behaviour and routines by National Autistic Society
Evolution of Autism in Public Schooling by Christina Raiti
Individuals with Disabilities Education Act (IDEA)
Kevin Selfe Hendrix Tribute 4/14/18 w/Jimi Bott and Jonathan Chase
Music as a window into the Autistic mind | Jonathan Chase | TEDxSalem
Kevin Selfe & the Tornadoes
Jonathan Chase
From Surviving to Thriving with Jonathan Chase
A Guide to the Individualized Education Program by U.S. Department of Education
