Good Vibrations, Bad Vibrations, Overwhelm, and Meltdown

I spent the evening with Polyphonic’s video essays on Fairytale of New York, Walk on the Wild Side, Wish You Were Here, Tangled Up in Blue, The Thin White Duke, The Chain, Deals with the Devil, Freddie Mercury’s Voice, Flea’s Bass, and John Bonham’s drums. Polyphonic offers captivating and well-produced looks at legendary songs and musicians.

The episode on Good Vibrations, Brian Wilson’s pocket symphony, had me bringing out the headphones to disappear into the version of the song from Smile.

Headphones and curated good vibrations are how I cope with sensory overwhelm, especially when I’m out in the world, outside my Cavendish bubble, where I’m unable to control my context. Smile and Pet Sounds are great albums in which to go for a sensory swim and let the world dissolve.

The Brian Wilson biopic, “Love and Mercy”, has a very relatable scene where Wilson is overwhelmed by the noise of utensils and conversation at the dinner table.

Overload, meltdown, outburst, and retreat. That escalation is a feature of my life, at times a daily one. As meltdown approaches, everything feels like shouting, everything is too much. Sounds and social interaction become painful, and adrenaline and anxiety surge, humming through my body and senses, overloading wires insufficient to the immensity of tidal flow. The dinner table scene is a good representation of how I experience overwhelm. A noisy, crowded dinner table is a personal hellscape.

I came across this piece on Autistic Traits and Experiences in “Love and Mercy” that explains further.

This scene is quite similar to how I experience an autism sensory overload. When sounds, lights, clothing or social interaction can become painful to me. When it goes on long enough it can create what is called a meltdown or activation of the “fight-flight-freeze-tend-befriend” (formerly known as “fight or flight”) response and activation of the HPA axis; a “there is a threat in the environment” adrenaline-cortisol surge.

This makes seemingly benign noises a threat to my well-being and quite possibly real physical danger to my physiology. Benign noises become painful, and if left unchecked, enough to trigger a system reaction reserved for severe dangers. This is what days can become like on a regular basis for myself and many on the spectrum.

“Let me stick a hot poker in your hand, ok? Now I want you to remain calm.”

That is the real rub of the experience of sensory meltdowns. The misunderstanding that someone with Autism is just behaving badly, spoiled or crazy. When the sensory overwhelm is an actual and very real painful experience. It seems absurd to most people that the noise of going to a grocery store could possibly be “painful” to anyone. So most people assume the adults or children just want attention, or they can’t control their behavior. In work situations I get accused of all kinds of things. And when I leave a noisy situation like a party to step out to take a break, people will notice that I’m “upset”. They will assume or worry that I must be upset at something or someone. And that’s just if I do take a break. If I can’t take a break or get my life out of proper oscillations and can’t avoid noise or sensory/emotional overload, then I can get snappy, defensive, irritated and under very unfortunate circumstances even hostile.

What the stress of noise means, in the autism’s world of an over-sensitive physiology and ramped up stress experiences, is that that pain is warning of us of real damage being created in our bodies. So this anxiety and reactivity isn’t necessarily just perceived but is actually happening. We are not being overly dramatic or a brat (what those with Autism are often accused of). Damage to our physiology is what noise can actually do.

Source: Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism

As I write this, I’m coming down from a long day punctuated by meltdown. I feel scoured and hollowed by adrenal exhaustion. Time for a swim in the good vibrations of someone who understands.

We don’t need your mindset marketing.

Autistic Special Interest and ADHD Hyperfocus crush learning curves. Both are powered by passion and intrinsic motivation. Without agency to pursue passion, these rockets can’t take off.

We don’t need your mindset marketing.

We don’t need your behavior mods.

We don’t need your sticks and carrots.

We don’t need your compliance cult.

We need agency and acceptance.

 

 

Embrace the obsession. Special interests are “intimately tied to the well-being of people on the spectrum“. “Special interests have a positive impact on autistic adults and are associated with higher subjective well-being and satisfaction across specific life domains including social contact and leisure.

Noncompliance is a social skill“. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Compassion and acceptance are practical and effective magic. They remedy a lot of problems and contribute to psychological safety. Acceptance matters. “A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism. ” “We also reject the equation that accepting autism and disability means giving up. Research consistently shows that autism acceptance leads to better mental health for parents as well as autistic people themselves. Evidence is mounting that acceptance and accommodation provide a more reliable path to increased capability and independence than fighting autism or disability does. Acceptance isn’t a cure, but it does facilitate recognition and support of abilities that often go unrecognized and under-valued. We are better off when not only our disabilities, but our real abilities, are recognized.”

Source: I’m Autistic. Here’s what I’d like you to know.

PBIS is Coercion

This is an argument usually used for Applied Behavioral Analysis (ABA), but it applies to PBIS as well. Because PBIS emphasizes the use of tangible rewards and teacher praise to motivate “appropriate” behavior, it often escapes this description.

The overall focus of PBIS is obedience or compliance with rules leading to a reward. The flip side of that coin is there is a lack of rewards or outright punishment administered for noncompliance. The pressure of complying with this system turns kids into ticking time bombs. Having to focus on compliance with school-wide and classroom rules stresses kids out and causes them to enter a state of anxiety when they come to school. In fact, I have seen this escalate to the point the school building itself was a trigger for panic attacks.

And, take my word on this, no one can identify and rebel against an unfair system as efficiently as a kid or adult with ID, except perhaps an autistic person. They know the system is unfair!

Source: PBIS is Broken: How Do We Fix It? – Why Haven’t They Done That Yet?

Since reading NeuroTribes, I think of psychologically & sensory safe spaces suited to zone work as “Cavendish bubbles” and “Cavendish space”, after Henry Cavendish, the wizard of Clapham Common and discoverer of hydrogen. The privileges of nobility afforded room for his differences, allowing him the space to become “one of the first true scientists in the modern sense.”

Let’s build psychologically safe homes of opportunity without the requirement of nobility or privilege. Replace the trappings of the compliance classroom with student-created context, BYOD (Bring Your Own Device), and BYOC (Bring/Build Your Own Comfort). Let’s hit thrift stores, buy lumber, apply some hacker ethos, and turn the compliance classroom into something psychologically safe and comfortable to a team of young minds engaged in passion-based learning. Inform spaces with neurodiversity and the social model of disability so that they welcome and include all minds and bodies. Provide quiet spaces for high memory state zone work where students can escape sensory overwhelm, slip into flow states, and enjoy a maker’s schedule. Provide social spaces for collaboration and camaraderie. Create cave, campfire, and watering hole zones. Develop neurological curb cuts. Fill our classrooms with choice and comfort, instructional tolerance, continuous connectivity, and assistive technology. In other words, make space for Cavendish.

My cave, campfire, and watering hole moods map to the red, yellow, and green of interaction badges (aka color communication badges). The three-level communication flow used at my company and other distributed companies reflects the progressive sociality of cave, campfire, and watering hole contexts and red, yellow, green interaction moods. These triptych reductions are a useful starting place when designing for neurological pluralism. When we design for pluralism, we design for real life, for the actuality of humanity.

Source: Classroom UX: Bring Your Own Comfort, Bring Your Own Device, Design Your Own Context

 

 

 

 

Autism Acceptance Month in Your School

I’m autistic and a parent of autistic kids. April is a tough month for us and other #ActuallyAutistic people. Stereotypes, myths, and inspiration porn are everywhere. Before Lighting It Up Blue, sharing puzzle pieces, or promoting Autism Speaks at your school, read up on the myths and misinformation autistic people must confront every April.

Navigating Autism Acceptance Month and Autism Myths

Follow that up with information about autism from autistic people themselves.

I’m Autistic. Here’s what I’d like you to know.

Identity First is the language of self-advocacy, neurodiversity, and the social model of disability. It is the language of almost every autistic and disabled person I know. Bring IFL into our schools.

We can’t design for inclusivity, for real life, without the social model for minds and bodies.

More on autism, neurodiversity, the social model of disability, and education: