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.

Neurodiversity in the Classroom

The picture shows a school classroom as I see it, as an autistic person.  A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students.  Deafening noise.  The stench of different smells.  The confusion of many voices, including some heard through walls from neighbouring halls and classes.  School uniform that feels like barbed wire on my skin.

In the chaos, a different voice which I have to try to listen to.  It’s so hard.  My brain doesn’t want to tune the rest of the noise out.  Apparently I’ve been asked something, but I miss it.  The voice gets more strident, the class turns to look at me.  The intense stares overwhelm me.  The person next to me jostles me and it feels like an electric shock on my skin.  Only six more hours of hell to go…. only six….

Some of our autistic pupils simply cannot do this alone, without ‘time out’ to recover from the pain and exhaustion during the school day.  Not for hour after hour of puzzling painful chaos.

Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

CW: behaviorism, ABA, PB[I]S, ableism, mental health, suicide

Walk into many SpEd classrooms, and you’ll see little awareness of neurodiversity and the social model of disability. Students with conflicting sensory needs and accommodations are squished together with no access to cave, campfire, or watering hole zones. This sensory environment feeds the overwhelm -> meltdown -> burnout cycle. Feedback loops cascade. Mind blind neurotypical adults call across the room, feeding the overwhelm. They ratchet compliance, feeding the overwhelm. They treat meltdowns as attention-seeking “fits”, feeding the overwhelm. They not only fail to presume competence, they speak about kids as if they aren’t even there, feeding the overwhelm. The familiar yet wrong things are done.

We’ve turned classrooms into a hell for autism. Fluorescent lighting. Endless noise. Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure. Autistic children mostly could cope in the quieter schools of decades ago. Not a hope now.

We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.

Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.

What schools need to do is to understand autism. In understanding it, we can help to stop putting the children in pain and exhaustion. It’s actually quite easy. And quite cheap.

Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

The most important thing to understand about autism in shared space is sensory overwhelm. Education, in my experience as student and parent, doesn’t, not in any practical, first-person way. ABA and behaviorism pointedly don’t understand.

Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.

Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.

It’s been decades since academic psychology took seriously the orthodox behaviorism of John B. Watson and B.F. Skinner, which by now has shrunk to a cult-like clan of “behavior analysts.” But, alas, its reductionist influence lives on – in classroom (and schoolwide) management programs like PBIS and Class Dojo, in scripted curricula and the reduction of children’s learning to “data,” in grades and rubrics, in “competency”- and “proficiency”-based approaches to instruction, in standardized assessments, in reading incentives and merit pay for teachers.

It’s time we outgrew this limited and limiting psychological theory. That means attending less to students’ behaviors and more to the students themselves.

Source: It’s Not About Behavior – Alfie Kohn

We navigate systems stacked against us to get access to what amounts to dog training—that dog trainers know better than to use—and a segregated “special” track through our systems that pathologically pathologizes difference and fails to connect with the communities it helps marginalize.

The specialists that serve this “special” track aren’t so much specialized in the lives and needs of neurodivergent and disabled people (managing sensory overwhelm, avoiding meltdown and burnout, dealing with ableism, connecting with online communities, developing agency and voice through self-advocacy) as they are specialized in deficit and medical models that pathologize difference and identity. Such framing is too limited to see us.

So heartbreakingly many can’t even bring themselves to use our language or educate parents about our existence. After autistic students age out of our care, we erase them again as adults.

More children than ever before are being diagnosed with autism. But what about the adults? Some of these individuals have never been diagnosed but have always known they were a bit “different.” Others were diagnosed but did not have the same degree of societal acceptance or the same number of resources available to help them cope with a neurotypical world.

Now this group of adults is the demographic that best understands what people with autism need, whether or not they know how to articulate it in a way the rest of society is able to grasp. But what these men and women have to say about autism is important. These people need to be heard!

The video below encourages adults with autism to get involved in the discussion and asks others to be cognizant of the needs of people with autism and invite them into the conversation. The neurotypical community needs adults with autism to lend their voices and experiences to help make the future brighter for the next generation!

Check out this powerful video!

Source: This Video Demonstrates What It’s Like to Be an Autistic Adult Who Isn’t Being Heard | The Autism Site Blog

Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?

Source: Catapult | Catapult | The Greatest Challenge of Raising an Autistic Child as an Autistic Parent? The Ableist World We Live In | Lu Everman

After sensory overwhelm, the next most important thing to understand about autism in the classroom is autistic burnout. Autistic burnout is unknown in the deficit and medical models. To hear about it, you have to go to #ActuallyAutistic people. We live this.

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Source: An Autistic Burnout – The Autistic Advocate

Do as these researchers are finally doing. They are in the space connecting with autistic people. They are using and spreading our language. They are building, with us,  a community of practice around participatory research that reflects our priorities. We see them and welcome others, particularly K-12.

Scientists are increasingly recognizing a moral imperative to collaborate with the communities they study, and the practical benefits that result. Autism researchers are joining this movement, partnering with people on the spectrum and their families to better address their priorities.

Source: Autism research needs a dose of social science | Spectrum | Autism Research News

Events like The International Society for Autism Research (INSAR) annual meeting are waking to the harm that has been done. They are finally including autistic people and autistic perspective.

So many of us in this system want to do better. Students and teachers find themselves in spaces guaranteed to result in feedback loops and meltdowns and the eventual burnout of everyone involved.  Responding to fires and stresses caused by overloaded sensory spaces and deficit ideology consumes more time, people, and passion than available and starves a better future of oxygen.

A better future requires time and will to get structural, get socialget equity literate, connect with communities, and build classroom user experiences compatible with neurodiversity and disability. SpEd and self-advocates should be working together,  designing for real life and fixing injustice, not kids.

A better future requires a justice mindset.

A better future requires an acceptance mindset.

A better future is a future made togetherRespecting neurodiversity improves interactions between neurodivergent people and public services. To that end, here are some autistic perspectives on sensory overwhelm, meltdowns, burnout, compliance, behaviorism, and “special needs“.

Sensory overwhelm is a marquee feature of my life. Autistic perception can be a high fidelity flood in an intense world. “Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.

Prolonged sensory overwhelm can lead to meltdown. A meltdown is not a tantrum. It is not attention-seeking. It is a response to overwhelm, anxiety, and stress. If I meltdown, the best thing you can do is be present, patient, calm, quiet, and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm. “But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.

Overwhelm, meltdowns, and the stress of trying to fit into neurotypical society lead to autistic burnout. “Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible. Being something that neurologically you are not is exhausting.

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.” “Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.”  ‘What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.‘ “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.

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

The logic of the connection between “special needs” and “special [segregated] places” is very strong – it doesn’t need reinforcement – it needs to be broken.

Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.

There is another insidious but serious consequence of being labelled (as having or being) “special needs”. The label carries with it the implication that a person with “special needs” can only have their needs met by “special” help or “specially-trained” people – by “specialists”. That implication is particularly powerful and damaging in our mainstream schooling systems – it is a barrier to mainstream schools, administrators and teachers feeling responsible, empowered or skilled to embrace and practice inclusive education in regular classrooms, and accordingly perpetuates attitudinal resistance to realising the human right to inclusive education under Article 24 of the Convention on the Rights of Persons with Disabilities.

In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.

The label of “special needs” is inconsistent with recognition of disability as part of human diversity.  In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

An education that is designed to the edges and takes into account the jagged learning profile of all students can help unlock the potential in every child.

Source: From Hostility to Community – Teachers Going Gradeless

We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.

Source: Autistic Hoya: The neurodiversity movements needs its shoes off, and fists up.

Further reading,