NeuroClastic

Kodi Lee and Greta Thunberg: Autistics in the Media. A tale of two ableisms.

Two autistic voices have risen to prominence in the mainstream media: Greta Thunberg, teen climate change activist, and Kodi Lee, the blind autistic musician and singer who recently won the popular show, America’s Got Talent.

Both of these autistic young people are amazing, but this article isn’t about them or their achievements.  This article is about the reaction from the general public and my autistic perspective about those reactions.

I want to talk about how social biases regarding autistic people are wrong and why.  There’s a lot of disconnect between the language of the autistic community (autistic people), the autism community (family members of autistics and professionals who work with autistics), and the mainstream (people with no significant connection to autism).

One of the first things someone entering the autistic community will realize is that no one uses the phrases “high functioning,” “low functioning,” “mild,” or “severe” to describe autistic people.  They will talk about the severity of certain traits, like hyperacusis (extreme sensitivity to sound) or executive dysfunction (impaired ability to organize, plan, and perform complex, multi-step tasks).

Or, one might come across autistics discussing among themselves how severely disabling something related to being autistic is.  They may say that their social anxiety is severely disabling, or their apraxia (disrupted ability to coordinate motor movements of the mouth for speech or the body for gross and fine motor movements) is severely impacting their ability to work.

But, what you won’t see is discussion of how “autistic” these traits make someone.  There’s no separation of “mild” or “severe.”  Being autistic means you have certain differences from the neural majority and that those differences don’t make you more or less autistic.

Career or not, relationship or not, independently-living or not, co-occurring conditions, etc.– none of that matters in the autistic community.  What you are is what you are. We understand we have different struggles and strengths, and we talk about our relation to those specifically, but never how that makes someone “more” or “less” autistic.

Because if Kodi Lee were online, you wouldn’t be able to tell him apart from the rest of us.  His limited speech and atypical inflection, the compulsive way he laughs after speaking many times, are not reflective of his understanding or ability to construct sentences.

Not being able to produce reliable speech doesn’t mean someone isn’t able to understand words and complicated ideas.  They’re just not always able to verbally communicate fluently because that requires coordination of several parts of the brain and the motor movements to regulate volume, pitch, speed, and tone.

Sometimes, the words come out close to what the speaker intended. For example, during Kodi Lee’s audition for the show, he answered the question about what he was going to be doing by saying, “I’m going to sing a song for you… on the piano.”

For this same reason, many autistics are unable to speak at all, but that doesn’t mean they can’t understand language and communicate in a different way.

A lot of people like Kodi Lee who have atypical speech prefer to write or type first and then read what they have typed aloud because that is easier for them than spontaneous speech.

Many nonspeakers and those with unreliable speech are prolific writers.

But Greta Thunberg has relatively typical speech.  She can get confounded, lose her train of thought, and make atypical facial expressions, too.  In this video, especially in the second half, she begins to lose her focus and is struggling to find the words at times.

For an autistic person, this is totally normal.  Autistic people watch this and understand.  We get it.  We don’t filter out all the background noise and movement, so busy environments like that, plus fatigue, make it hard to focus. 

You’ll also notice that she begins to stim more with her hands.  Stimming is repetitive movements or sounds that autistic people do to help them stay regulated.  Kodi Lee rocks back and forth as a stim.

But let’s walk through some some of the reactions to Kodi and Greta. First, look at how people discussed Kodi’s parents versus how they discussed Greta’s parents:

[Warning: many comments referenced in this article contain disturbing ableism. Reader discretion advised.]

Kodi Lee’s Parents

Greta Thunberg’s Parents

Facial Expressions and Body Language:

Kodi Lee and Greta Thunberg both have facial expression differences from what neurotypicals expect when they are interacting with each other.  Most people communicate more through tone, body language, facial expressions, and implications than they do through spoken words.

But autistic people don’t.  Many autistics have less neural and motor control of our facial expressions and the movements of our bodies, and we’re often unaware of what our faces and bodies do when we’re communicating.

If an autistic person’s speech is as different as Kodi Lee’s, then their different mannerisms are overlooked or excused because they are seen as being “severely affected.”  If an autistic person has speech that is fluent like Greta’s, then those same atypical facial expressions are seen as menacing or a sign of mental illness.

Though Kodi Lee has very different facial expressions compared to most people, I tried over 50 different combinations of search queries on Twitter and found no references to them, but there were over 100,000 Tweets talking about Greta’s autistic facial expressions.

Here are a few:

Other words used to describe Greta’s facial expressions: fiendish, deranged, crazy, psycho, disturbed, plastic, sick, mental, and a few words I won’t dignify by repeating them.

Even the United States President weighed in with a mocking jab:

Kodi and Greta: On Fame

Another way to see the differences in how Kodi and Greta have been regarded by the general population is in how people talk about fame.  Here is what people had to say about Kodi on the subject:

By all standards, Kodi Lee deserves these comments.  They are supportive and wonderful, and autistic people need support from non-autistic folk.  Thank you to those who supported and voted for Kodi.  In Kodi’s case, he did implicitly ask for votes, and so people supported him the way he asked to be supported.  That’s ideal for autistics.

Here’s what people have to say about Greta’s fame:

So Why the Difference in Reception?

One could make the argument that Greta is being antagonized because of controversial political messaging.  Yes, that’s responsible for some of the antipathy against her.  On the other hand, some of the lack of antagonism against Kodi Lee is because marginalized people have always been allowed and accepted to be entertainers and performers.

One need not look beyond the example of American football quarterback Colin Kaepernick or basketball great LeBron James to see what happens when an entertainer points out oppression or takes a stand on a social justice issue.

But, in Greta’s case, the same autistic behaviors that Kodi Lee exhibits are what are used against her to invalidate and insult her and to paint her parents as negligent.

Autistics know this plays out in life.  Kodi Lee is an adult, a twenty-two year old man, yet there is almost no mention of him without someone lauding his parents.  Believe me, as an autistic person, I appreciate his parents to the moon and back.  I could write whole articles on what they did right.  They are amazing.

So are Greta’s parents, for the same reasons.

Autistic people are passionate, and they’re not wired to be multi-taskers.  They are wired for specialization, to find a groove and hone it and go with it.  We dream of being the hero, just like everyone else and maybe more.  Not for fame, not for money, not for anything other than leaving an indelible mark on the world.

Kodi Lee may seem like he leads a tragic existence to many people– and I’m sure he does suffer like all of the greatest people do– but he can do things only about 25 people in the world can do.  He has total audiographic memory recall.  He can remember every note to every song he’s ever heard and play it.  He has perfect pitch.

Every person reading this is disabled compared to Kodi Lee.

Kodi’s mother has written about how Kodi was miserable before finding himself in music.  At the piano, it’s clear to anyone that a visible shift and alignment happens for him.  Greta has expressed how miserable she was before she found an avenue to put action to her passions.

Even though Kodi differs from Greta in that he is an adult, he is rarely mentioned without his mother being mentioned.  This is called infantilization, or treating a disabled adult like a child because they have a disability. 

On the converse, Greta is treated as if being autistic is more like having a personality disorder as opposed to a medical condition, as if her autistic nature and behaviors are an attempt to get attention. 

Her passion, hyperfocus, and atypical body language are not regarded as autistic behaviors, but as signs of someone too fragile or too unreliable to be doing what she is doing.  The long pauses or lost trains of thought in her speech are seen as evidence of mental breakdown instead of just being a normal part of being autistic and in an overstimulating environment.

But what makes Kodi and Greta both exceptional is their indomitable will.  That is an autistic trait.  They are both doing what they are wired to do– defiantly, against the status quo and social expectations of what people are “supposed to do.”

Both Kodi and Greta are doing exactly what they are wired to do, and that kind of passion being given room to grow– even if that space is made by elbowing through the fabric of society– is world-changing. 

Their autistic nature is a disability.  Their autistic nature is greatness.  Both of those truths can exist at the same time.