The Neurodivergent Experience in Josephmooon’s “So Far So Good”

Our own Ronan is releasing an album. Ronan is lyricist for Josephmooon. You can read the story of their distributed collaboration on their blog:

These songs resonate with my autistic, bipolar, and disabled life. I’m super excited to add them to my favorite playlist, Chronic Neurodivergent Depressed Queer Punk: Punk Rock, the Social Model of Disability, and the Dream of the Accepting Community, where they will become part of my everyday coping.

Below, I’ll share lyrics from each song and relate them to my own, and the broader, neurodivergent experience using selected quotes from community writing.

  • Floats Boat
  • One Word
  • Long Ago
  • Up All Night
  • Out of Tune
  • Captolea
  • Busybodies
  • High in the Sky
  • Cost Time
  • Reusable Money
  • Check For
  • So Far So Good

The album “So Far So Good” will be available on streaming platforms on Oct 1. Preview and pre-order on iTunes.

Listen now.

Floats Boat

Is there something you’re not telling me

You’re not telling me what floats your boat

It can be anything you want it to be

Only you can decide what floats your boat

Let me tell you what floats my boat

It’s writing songs that change the world

Maybe just a little bit I said just a little bit

Can you please tell me what floats your boat

That’s all I want to know

One of The Five Neurodivergent Love Languages is listening to someone infodump. “Floats Boat” is an invitation to infodump about your SpIns.

SpIns and Infodumps

I don’t know who invented the phrase “special interest.” Probably some researcher. Autistic people don’t really love the term because the term “special” has become tied so closely with terms like “special needs,” which we resent.

Nevertheless, somewhere down the line “special interest,” commonly shortened to SpIn (“spin”), became the term for the characteristically-autistic tendency to develop an obsession with something specific and often obscure.

Some special interests are short lived, and some last the lifetime of the person; but, however long they last, they are intense, delightful, and a vital part of autistic culture.

So integral are special interests to autistic culture that autistic people will post about feeling depressed and unmotivated because they don’t have an active SpIn at the moment.

Having a special interest is like having a crush or being newly in love. It is consuming and delightful. We love to share our special interests and a common example of autistic empathy is encouraging others to talk in great detail- “infodump”- about their SpIns.

It is considered a sign of caring and friendship to encourage someone to talk to you about their SpIn- whether or not you actually share their interest- because nothing makes an autistic person happier than discussing, learning about, or sharing about, their SpIn.

It is also quite acceptable in autistic culture to “infodump” on a topic whenever it happens to come up. To autists (an insider short-hand for autistic people), the sharing of knowledge and information is always welcome.

Source: 7 Cool Aspects of Autistic Culture » NeuroClastic

“Floats Boat” offers a “sign of caring and friendship to encourage someone to talk to you about their SpIn.” It also offers subversion.

Only you can decide what floats your boat

This recognizes a fact about SpIns: they come from within. They run on intrinsic motivation, not extrinsic.

In preparing a new Afterword for the 25th-anniversary edition of my book Punished by Rewards, I’ve sorted through scores of recent studies on these subjects. I’m struck by how research continues to find that the best predictor of excellence is intrinsic motivation (finding a task valuable in its own right) – and that this interest is reliably undermined by extrinsic motivation (doing something to get a reward). New experiments confirm that children tend to become less concerned about others once they’ve been rewarded for helping or sharing. Likewise, paying students for better grades or test scores is rarely effective – never mind that the goal is utterly misconceived.

Source: It’s Not About Behavior – Alfie Kohn

In autistic communities, we advocate embracing the obsession.

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.” “In my study, I found that when the autistic children were able to access their intense interests, this brought, on the whole, a range of inclusionary advantages. Research has also shown longer-term benefits too, such as developing expertise, positive career choices and opportunities for personal growth. This underscores how important it is that the education of autistic children is not driven by a sense of their deficits, but by an understanding of their interests and strengths. And that rather than dismissing their interests as ‘obsessive’, we ought to value their perseverance and concentration, qualities we usually admire.” “…the autistic children in my study were turning to their strong interests in times of stress or anxiety. And there has certainly been a lot of research which shows that autistic children and young people find school very stressful. So it might be the case that when this autistic trait is manifested negatively in school, it is a direct result of the stresses that school creates in the first instance.” “[E]nabling autistic children to engage with their strong interests has been found to be predominantly advantageous, rather than deleterious, in school environments.” “Furthermore, longer-term benefits have been associated with the pursuit of intense interests, with relatively few negative effects overall, which in themselves might only occur if autistic people are pressured to reduce or adapt their interests.” “Having intense or “special” interests and a tendency to focus in depth to the exclusion of other inputs, is associated with autistic cognition, sometimes framed as “monotropism”. Despite some drawbacks and negative associations with unwanted repetition, this disposition is linked to a range of educational and longer-term benefits for autistic children.


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

So, “can you please tell me what floats your boat?”

Maybe I can help you float your boat

We’ll write a song to sing along

And let it float away let it float away

Anything can float your boat

That’s all I want you to tell me

So everyone can see

One Word

I’ve not said the word to you

Afraid that you might say it too

“One Word” reminds me of a high school crush I could never talk to because of the tidal immensity of exposure anxiety and rejection sensitive dysphoria and the resulting situational mutism in their presence.

It wasn’t that the volume was too loud so much as that in the grip of an adrenaline rush everything was sensorily too much. The intense ‘pain’ was that the personal, individual, me-ness in it was unbearable. I was allergic to the experience of my own existence and the experience of hearing my own voice speaking from connected expression as me could, at times, be far worse than the terrible feeling you get hearing your own voice on an audio tape or answerphone.

Exposure Anxiety is the internal parent watching its vulnerable and exposed baby being stolen by the world outside or given away by ‘the self’; being robbed of control by what are felt as ‘outside forces’. Exposure Anxiety is a self-parenting survival mechanism, an intense often tic-like involuntary self-protection mechanism that jumps in to defend against sensed ‘invasion’. When it becomes chronic, it is self-perpetuating – like a boulder hurtling down a hill, gaining momentum. Chronic, uncontrolled, acute Exposure Anxiety is about addiction to your own adrenaline.

Exposure Anxiety makes it difficult to dare ‘expressive volume’ in a directly-confrontational (self-in-relation-to-other) world

Exposure Anxiety is about feeling your own existence too close up, too in your own face.

If I could draw you a picture of acute chronic Exposure Anxiety, I’d draw you a rainbow unseen within heavy stone walls. There’d be places in the stone where the cement had crumbled, been chipped away and some of the colour had come streaming out like a ray of light into the world. I’d draw you a picture of someone inside a prison, an invisible prison with replica selves on the outside, each a contortion, a distortion of the one you can’t see who can’t get out. I’d draw you a picture of someone avoidant with a social person waiting inside for the keys and a way out.

Source: Williams, Donna (2002-09-14T23:58:59). Exposure Anxiety – The Invisible Cage . Jessica Kingsley Publishers. Kindle Edition.

Exposure anxiety (EA) is a condition identified by Donna Williams in which the child or adult feels acutely self-conscious; it leads to a persistent and overwhelming fear of interaction.

Source: Exposure anxiety in autism | Network Autism

EA can be quite crippling as it it causes the person to feel acutely self-conscious and leads to a persistent and overwhelming fear of interaction. And that makes any attention from other people feel potentially threatening so that the child feels ‘exposed’ each time someone looks at him, talks to him or even compliments him.

Source: Autism and Exposure Anxiety. Don’t look at me! – Autism Daily Newscast

I dreamed of just the right situation where I would feel psychologically safe enough to unlock, like the calm of a quiet evening, away from the chaos and judgement of school.

When there’s a full moon in the sky

In the light of the night

“One Word” also evokes my solo polyamorous nature by offering the one word “to you and you and you and you”.

One word to say to you

To you and you and you and you

It wasn’t until looking into solo polyamory I realized I don’t have to feel guilty for having separate needs from my partner. Solo polyamory is the idea that people are autonomous beings who have different needs and wants, and alongside good communication and mutual respect between all partners, no one puts rules on each other because no one owns one another. There’s this expectation in mainstream society that if you’re a couple you should want to be together most of the time - but with solo polyamory, partners respect how much time you can set aside to see them based on work, hobbies and other people who are important to you. There’s no pressure to converge lives the longer you’re dating because with solo polyamory commitment and time together aren’t seen as mutually exclusive. In a solo polyamory group I recently joined on Facebook, I found a thread where a number of people on the spectrum talked about how finding solo polyamory has helped them work through their sensory sensitivities without feeling like there’s something wrong with them. If they need to leave a date because they’ve had too much stimuli for the day, their partners understand because they’ve had those essential conversations on what each other needs as an individual.

Source: How Polyamory Helped Me Advocate For My Needs As A Disabled Person | Thought Catalog

“One Word” is also just a rockin’ love song that’s a bit of a tease.

Long Ago

Long ago is long ago

Or right now right now don’t you know

Rejection sensitivity and exposure anxiety generate a lot of regrets and rumination on those regrets. My regrets come as flashbacks that travel in an instant from the long ago to “right now right now don’t you know.”

Long ago forever in the past

Long ago never can be changed

Pointless to be going back in time

So long ago so long long long ago

I know it’s pointless to go back, but I keep making the trip, usually involuntarily.

In other words, autistic people are indeed traumatised by a wider range of things than the teams were expecting. And diagnostic teams should be considering PTSD after a wider list of possible triggering events.

Source: Ann’s Autism Blog: Autism, Bullying, Post Traumatic Stress Disorder and Behaviour. The links?

One explanation for ASD and probable PTSD cooccurrence shown here may be that ASD serves as a vulnerability factor for PTSD. Hirvikoski and Blomqvist (2015) found that adults with ASD reported significantly higher subjective stress and poorer ability to cope with stress in everyday life, compared with typical adults. One’s subjective perception of his or her ability to cope with a specific stressor is central in defining the level of experienced distress (Karasek & Theorell, 1990). Individuals with ASD often show executive functioning difficulties (Kenworthy et al., 2008), which may impede their choice of appropriate coping strategies. Another aspect related to ASD that may affect individuals’ subjective distress level following trauma is sensory hypersensitivity (e.g. Horder et al., 2014), a factor that has been associated with vulnerability to PTSD (Engel-Yeger et al., 2013).

Source: Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions – Nirit Haruvi-Lamdan, Danny Horesh, Shani Zohar, Meital Kraus, Ofer Golan, 2020

I incessantly script in preparation for social interactions and relentlessly post-mortem the interactions afterwards. I replay some conversations over and over for decades and lifetimes. An anodyne, forgettable conversation for most can be a source of lifelong relived trauma for me. I’m a constantly ruminating engine of regret stuck in past moments I wish I could edit.

One chance to travel back in time

For days or weeks or months or years

Today is all but long ago

So won’t you come to me right now

Some things look so easy

But we can’t go back, no we can’t go back

When it’s not so easy you are not alone

So won’t you come to me right now

Right now right now maybe someday

Long ago is long ago

Now is now and not forever

“Long Ago” captures my yearning to unhook from rumination on what can’t be changed and live in the present. “Now is now and not forever.”

Up All Night

I’m staying up all night

All night all night that’s not right

Staying up all night

That’s what I’ve been doing

Up all night all night all night

Try to stay out of sight in the daytime

I do it a lot

I have been up all night all night all night

That’s not right alright that what I like to do

Well I sleep when it’s day and stay up all night

Insomnia is a research priority for autistic communities. At Stimpunks, we keep the hour-of-the-wolf.

We can joke fondly about it now, but my forty-two-consecutive-month campaign against a full night’s sleep nearly broke my parents. They managed to hone hour-of-the-wolf parenting into a fine art by the end of this waking nightmare.

Source: Kurchak, Sarah. I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder (p. 19). Douglas and McIntyre (2013) Ltd.. Kindle Edition.

Sleep is challenging – but crucial.

Autistic burnout isn’t a permanent state, however. One of the best ways for anyone to recover from burnout is rest, particularly sleep, according to Amelia Nagoski, the co-author of the best-selling 2019 book “Burnout: The Secret to Unlocking the Stress Response Cycle.” But autistic people have a harder time sleeping because of their neurological differences, according to a 2019 study.

Autistic people are more likely to sleep for shorter periods of time and experience lower-quality sleep, and they’re more likely to be night owls, the study found. Research on non-autistic adults shows that insomnia is a strong predictor of burnout, suggesting a similar link among autistic people with sleep disorders.

Ms. Nagoski, 44, addressed autistic people’s sleep woes in a recent YouTube video. “This essential thing that is fundamental to wellness is harder for autistic people,” she said.

Source: ‘The Battery’s Dead’: Burnout Looks Different in Autistic Adults – The New York Times

I was an insomniac as a kid. I’d stay up all night loaded with fear, anxiety, and hallucinations.

Over years and decades, the night became less about fear, and more about having the world to myself so I could read and write.

Stay out of sight

That’s how I write

Staying up all night

That’s what I do

How about you

I’m writing this blog post at 2AM, so cheers night-owls writing at wolf-hours.

Out of Tune

Lately I’ve been feeling out of tune out of tune

I don’t know why but I would like to know why

And I want to get back in tune

Out of tune that’s what I am

Being out of tune pains my head

(can’t get out of bed)

Hurts from being out of tune and

I just so want to get back in tune

Out of tune that’s what I am out of tune

Feeling out of tune with myself and the world has been a fixture of my autistic, bipolar life. “Out of Tune” resonates broadly across neurodivergent experience. It makes me cry.

It concludes hopefully, though.

When I get back in tune

My good days will come back and I’ll feel better

If you’re feeling out of tune like I am now

Get back in tune like I said

I will get back in tune

But I don’t know when (hopefully soon)

I know it could take time

But let’s make it happen

Through the self-awareness gained from neurodiversity and disability communities and a chemical assist from Sertraline and Rexulti, I’m sufficiently in tune these days. It took time, but we made it happen.

There will be moments of de-tuning where I once again don’t know when I will get back in tune. I’ll play this song and work my way back with continuous fluid adaptation.

Many of the challenges that come with being autistic are pervasive, meaning they’re with us forever. Even if they aren’t active at all times, they still exist and may reappear when a particular coping strategy gets temporarily taken offline because the brain needs to reallocate resources for a more urgent task.

When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again.

In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced. Because a child or adult goes through a period of having very few meltdowns, that doesn’t mean they’ll never have meltdowns again. If something in their life changes, for example the hormonal storms of puberty, they’ll need to develop new coping strategies. And until they do, they may begin having meltdowns due to the mental, emotional or sensory overload caused by the new development.

Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.

Source: Autistic Regression and Fluid Adaptation | Musings of an Aspie

Captolea

Stay inside said Sheriff Carroll

He looks frightened so I’m holding tight

In my house with a double barrel

Ready to shoot Captolea dead on sight

Oh no there’s Captolea

He’s a killer with a gun and a knife

Stay away from him

Don’t say anything to him

I don’t want to die

I could interpret this as being about depression and reactivity, but I’ll let it stand as a good old-fashioned outlaw murder ballad.

Busybodies

Run away run away

Beware of busybodies

They are everywhere

Beware of busybodies

They just want to know everything

They ask questions yeah

Way too many questions so

Beware of busybodies

If you see them keep hiding

In a bunker if you find one

Beware of busybodies

They are in a lot of places

There they are right there and there

Talking trash about me and probably about you too

Run away, stay away

“Busybodies” reminds me of the “Make it Stop” campaign.

In the video, an autistic student navigates a gauntlet of questions and sensory overwhelm.

I’ve always struggled with questions. My school career was marked by situational mutism in the face of questions. Exposure anxiety and rejection sensitivity made talking difficult to impossible in all but the most psychologically safe circumstances.

I also struggle with answering within the confines of another’s framing. So many neurotypical and abled assumptions and norms are baked in that I can’t answer unless I start by rejecting the framing.

Zero (they/their) on Twitter: “I think the most autistic way to answer a question is to dispute the premise of the question itself. E.g. “would you rather go to a party or a library?” Like, what sort of party? Who’s going to be there? Which library? Are the rules of the library clearly stated and enforced?” / Twitter

Dealing with all of the questions and bad framing, daily, is exhausting.

“Empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination.” We can’t truly step into another neurotype, but we can seek story and perspective. These videos offer a taste of what it is like to endure the daily gauntlet of neurotypical questioning. To not respond to questions is to be called rude. To not respond will get you publicly color-coded as an orange or red and denied perks that the compliant NT kids get. To not exchange this social styrofoam is to be a problem. Make it stop. Empathize with what it is like to navigate these interactions while dealing with the sensory overwhelm of raucous environments not designed for you.

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

Neurodivergent people are forced to attempt understanding of neurotypical people and society. We are constantly judged and assessed by neurotypical standards. We must analyze and interpret in order to conform and pass so that we can get the sticker, the “cool kid cash”, and the promotion. There is almost no reciprocity in return.

Source: The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults

There are entire industries of Busybodies pathologizing neurodivergent life, applying bad framing, asking the wrong questions, and “talking trash about me and probably about you too”.

Y’all know the file, right? This has been the thing that had been following me since I started special education. Those things are thick and deep. KGB got nothing on special ed.

Source: The Gift: LD/ADHD Reframed

Now listen here busybodies

I’ve got something to say to you

Go away and don’t come back

We don’t want you busybodies

We’re tired of bad questions and bad framing. As an exercise, let’s flip the pathologizing lens.

Neurotypical syndrome is a neurobiological disorder characterised by preoccupation with social concerns, delusions of superiority, and obsession with conformity. There is no known cure.

Source: NeuroTribes by Steve Silberman review – an enlightened take on autism and difference

Perhaps the most obvious giveaway is an NT’s tendency to make “small talk” or to want to “chat” with you. While small talk appears to be nonfunctional, for NTs it serves a very specific purpose. It’s a good idea to humor them and participate to whatever degree you can tolerate. If you’re patient with them, many NTs will soon feel comfortable enough to move from small talk to more interesting, in-depth conversations.

Source: What is neurotypical?

Another odd behavior neurotypicals exhibit is their habit of “small talk.” From what we can tell, small talk appears to be talking just for the sake of talking. A “how are you doing” results in the same non-answer of “fine.” It seems unlikely everyone everywhere at all times is truly “fine,” so it seems that that is a non-answer to what is in fact a non-question. It has been observed that if you give an actual answer to the question, the questioner gets frustrated and impatient, as though they are annoyed that you would actually answer them. A whole conversation can actually go on like that, with general questions giving rise to pat answers so that you could actually change out any pair of people and you would end up with the same conversations each time. The vast majority of their conversations are not about anything of any substance, and, again, they seem positively annoyed if you try to engage them in such a conversation. As a group neurotypicals seem positively frivolous most of the time.

Source: A Pathological Look at Neurotypical Behavior – An Intense World

High in the Sky

I am high up in the sky

Way above the Northern lights

On the way to the moon

Far above the stars

High up in the sky

Life is never too long

But life can be too short

With people dropping bombs all over the world

From high up in the sky

High up in the sky

I love that second verse. It’s a flash of the autistic sense of justice. I often want to disassociate from a bomb dropping world that is way too intense.

I’m in the sky now, for just as long as I need to be

Almost to the moon that’s my destiny

When I get back we’ll talk about it then

And I can’t wait to see you again my friend

High up in the sky

Avoiding meltdown and burnout requires managing sensory diet, and sometimes that means retreating into your head and heading High Up in the Sky, detaching from an intense world designed against you.

Cost Time

Everything costs time everything

Everything costs time yes it does

Costs time getting out of bed

Doctor says you got your head in the fog

Got to cook and eat your food

Costs time to walk your dog

Costs time no matter what you do

Take a shower and get in the pool

Drive a car hang out with your friends

Go back in time or forward again

“Cost Time” speaks directly to chronic spoonie life. Spoon theory is a popular metaphor for energy expenditure in the disability community.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

Source: The Spoon Theory written by Christine Miserandino – But You Dont Look Sick? support for those with invisible illness or chronic illness

Everything costs time, especially when you are chronically ill and only get so many spoons.

Reusable Money

Reusable money that’s what I got

Use it every day and I never run out

I spent 10 dollars I still got that 10 dollars

Feels so good, that’s how I get around the world

Reusable money is my precious yes it is

Use it every day for whatever I want

I can’t run out I always have enough money

And it’s really not an option that’s how I get around the world

“Reusable Money” is a rollicking fantasy about having as much money as you can spend and traveling the world.

Beneath that, though, I feel the weight of our journey fighting for scraps in systems designed on “artificial economies of scarcity”.

Bascom tells me that experiences like ours happen because disability service systems are never designed to support people with disabilities but are “about managing access to scarce resources. We start with the assumption that these resources are limited, so you have to prove over and over again that you need them more than anyone else. If we as a society invested more resources in supporting people with disabilities, we could redesign our systems accordingly.”

Source: I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation

Society mints billionaires more billions during a pandemic while neurodivergent and disabled people struggle against artificial scarcity in systems designed against us. “Reusable Money” invites a fantasy of fungibility where that money helps us “get around the world”.

Check For

“Check For” is delightfully enigmatic. It’s “some very cloudy ice”.

Check check for you my friend

Check it once check it twice

I’m in a good mood what about you

Just a piece of cloudy ice

Check check check over here

Ain’t nobody got nothin’ to say

Check for a deep pool a deep deep pool

Check for a cold day a very cold day

The Stone Age should’ve made me strong

Banging on rocks all day long

Ain’t got no money, just got this song

Waiting for someone to sing along

Check for the top, the top of us all

Check for a flag but not a flag that is cruel

Check for the guitar I’m playing right now

Check for the rule ‘cuz it’s a good rule

In the Stone Age I did not belong

On my computer all day long

Ain’t got no money then move along

Unless you want to help me sing my song

Check check for you my friend

Check it once then we’ll check it twice ‘cuz

It’s a cold day a very cold day

And you’re some very cloudy ice

I’ll reach for a neurodiversity angle by saying: I would not belong in the Stone Age either. I need my computer. It connects me with other cloudy ice folks who “help me sing my song”.

ANI launched its online list, ANI-L, in 1994. Like a specialized ecological niche, ANI-L had acted as an incubator for Autistic culture, accelerating its evolution. In 1996, a computer programmer in the Netherlands named Martijn Dekker set up a list called Independent Living on the Autism Spectrum, or InLv. People with dyslexia, ADHD, dyscalculia, and a myriad of other conditions (christened “cousins” in the early days of ANI) were also welcome to join the list. InLv was another nutrient-rich tide pool that accelerated the evolution of autistic culture. The collective ethos of InLv, said writer and list member Harvey Blume in the New York Times in 1997, was “neurological pluralism.” He was the first mainstream journalist to pick up on the significance of online communities for people with neurological differences. “The impact of the Internet on autistics,” Blume predicted, “may one day be compared in magnitude to the spread of sign language among the deaf.”

Source: The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.

Until one day… you find a whole world of people who understand.

The internet has allowed autistic people- who might be shut in their homes, unable to speak aloud, or unable to travel independently- to mingle with each other, share experiences, and talk about our lives to people who feel the same way.

We were no longer alone.

Source: 7 Cool Aspects of Autistic Culture » NeuroClastic

One could make the argument that autistic people created the very computer environment autistic people are most comfortable in.

In fact, there is pretty good evidence that most of the science, technology, and arts you enjoy are the products of autistic minds.

Source: Welcome to the World Autism Made – An Intense World

So Far So Good

So far so good

I hope it stays like this forever

So far so good

But the wolf is at my door

Here at Stimpunks, we live in a Cavendish bubble of respite that is designed by neurodivergents, for neurodivergents.

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 and opportunity 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. Make spaces for both collaboration and deep work.

Source: Classroom UX: Designing for Pluralism

Burnt out friends who’ve stayed within our Cavendish space for peer respite have remarked how hard it is to go past our red gate, the boundary of sanctuary from the waiting wolves of an ableist world.

I like my way want to keep it that way

For as long as I live

Precious to us all to be alive

So far so good

In this world of time

Our Cavendish space has three acres worn with our stim trails. We each have our ways, our patterns, our habits, our stims that soothe us, and we each have space to do them.

“Some autistic people’s needs will conflict with each other. For example, some autistic people may need the TV playing to calm down, as it can help to focus on specific sounds. But for others this may cause more stress depending on their mental state. Additionally, some autistic people may need to stim to feel relaxed and comfortable, or it may be involuntary when they are stressed, but noises they make (e.g. verbal stims), could really stress another autistic person out. I think the key here is space.”

Source: “It’s Not Rocket Science” – NDTi

We’ve been living So Far So Good within a remit of inclusion, access, and constancy.

But wolves are at the door in this world of time.

The Importance of Stimming as an Adaptive Coping Mechanism

Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.

Furthermore, more recent theories have suggested that stimming may provide familiar and reliable self-generated feedback in response to difficulties with unpredictable, overwhelming and novel circumstances (e.g. Lawson, Rees, & Friston, 2014; Pellicano & Burr, 2012). As such, stimming may provide not only relief from excessive sensory stimulation, but also emotional excitation such as anxiety (Leekam, Prior, & Uljarevic, 2011). Consistent with these suggestions, autistic adults report that stimming provides a soothing rhythm that helps them cope with distorted or overstimulating perception and resultant distress (Davidson, 2010) and can help manage uncertainty and anxiety (e.g. Joyce, Honey, Leekam, Barrett, & Rodgers, 2017).

Reflecting the aims of popular interventions, language surrounding the topic of stimming is often pejorative (Jaswal & Ahktar, 2018). Researchers sometimes assume that stimming falls within voluntary control and has asocial or antisocial motivations (Jaswal & Ahktar, 2018; Lilley, in press). For example, a prominent review of repetitive behaviours in autistic people attributed the onset of stimming to a ‘self-imposed restricted environment’ (Leekam et al., 2011, p. 577). Stimming has become so associated with autism that some scientists and clinicians use the term ‘stims’ interchangeably with ‘autistic behaviour’ (Donnellan, Hill, & Leary, 2013). Furthermore, therapies continue to treat stimming despite lacking strong evidence of efficacy or ethics (Jaswal & Akhtar, 2018; Lilley, in press). While researchers increasingly acknowledge limitations in the under- standing of, and interventions for, stimming (e.g. Harrop, 2015; Patterson, Smith, & Jelen, 2010), treatments may remain popular, in part because many parents regard it as noticeable and stigmatising (Kinnear, Link, Ballan, & Fischbach, 2016).

Autistic people have become increasingly mobilised and vocal in defence of stimming. Autism rights or neurodiversity activists believe that stims may serve as coping mechanisms, thus opposing attempts to eliminate non-injurious forms of stimming (e.g. Orsini & Smith, 2010). They decry practices such as ‘quiet hands’ (which teaches the suppression of hand flapping), instead using ‘loud hands’ as a metaphor both for using such non-verbal behaviour to communicate and for cultural resistance more broadly (Bascom, 2012). In addition, autistic scholar-activists denounce attempts to reduce their bodily autonomy (Nolan & McBride, 2015; Richter, 2017) and declarations of their stimming as unacceptable or as necessarily involuntary (Yergeau, 2016).

Source: ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming – Steven K Kapp, Robyn Steward, Laura Crane, Daisy Elliott, Chris Elphick, Elizabeth Pellicano, Ginny Russell, 2019

Let us stim! I couldn’t cope without my stims, including the self-injurious ones. They are lifelong companions that I wouldn’t want to be without.

Suppressing coping stims is violence against a neurominority.

Does Behaviorism Belong in the Classroom?

TLDR: No.

The paradigm of behaviorism going back to BF Skinner…denies, dismisses, trivializes, or simply writes off the whole idea of inner experience and looks only at behavior, the actions on the surface you can see and measure.

Source: Alfie Kohn | Does Behaviorism Belong in the Classroom? by The Think Inclusive Podcast • A podcast on Anchor

The behaviorism we experienced at school and in the autism therapies recommended to us by school felt fundamentally misguided. This uneasy feeling led us to the neurodiversity movement, where we found our discomfort with behaviorism almost universally shared.

There are few allies to neurodiversity in education, but in Alfie Kohn’s work on behavior and motivation I sensed a powerful education ally aligned with autistic community advocacy. Kohn gave me vocabulary for the inchoate discomfort I had with the behaviorism used on my kids. His writing nicely complimented and supplemented my neurodiversity advocacy.

I’d been following, amplifying, and applying his work for a number of years, when, in 2018, Kohn published “It’s Not About Behavior”. This article is a neurodiversity advocate’s dream.

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.

Source: It’s Not About Behavior – Alfie Kohn

And then, in 2020, Kohn discovered our community and published “Autism and Behaviorism”.

But even more compelling is the testimony of young people who understand the reality of this approach better than anyone because they’ve been on the receiving end of it. It is nothing short of stunning to learn just how widely and intensely ABA is loathed by autistic adults who are able to describe their experience with it. Frankly, I’m embarrassed that, until about a year ago, I was completely unaware of all the websites, articles, scholarly essays, blog posts, Facebook pages, and Twitter groups featuring the voices of autistic men and women, all overwhelmingly critical of ABA and eloquent in describing the trauma that is its primary legacy.

Source: Autism and Behaviorism – Alfie Kohn

The ally I had long sensed came out with a powerful essay demonstrating what an insightful and compassionate ally can do.

And if it turns out that, contrary to widespread assumptions, behavior modification techniques aren’t supported by solid data even when used with autistic kids, why would we persist in manipulating anyone with positive reinforcement? A rigorous new meta-analysis utterly debunks the claim that applied behavior analysis (ABA) therapy is the only intervention for children with autism that’s “evidence-based.” In fact, it raises serious questions about whether ABA merits that description at all.

The late Herb Lovett used to say that there are only two problems with “special education” in America: It’s not special and it sure as hell isn’t education. The field continues to be marinated in behaviorist assumptions and practices despite the fact that numerous resources for teachers, therapists, and parents offer alternatives to behavior control. These alternatives are based on a commitment to care and to understand. By “care,” I mean that our relationship with the child is what matters most. He or she is not a passive object to be manipulated but a subject, a center of experience, a person with agency, with needs and rights. And by “understand,” I mean that we have an obligation to look beneath the behavior, in part by imaginatively trying to adopt that person’s point of view, attempting to understand the whys rather than just tabulating the frequency of the whats. As Norm Kunc and Emma Van der Klift urged us in their Credo for Support: “Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can….[or] the only way I can exert some control over my life….Do not work on me. Work with me.”

Source: Autism and Behaviorism – Alfie Kohn

Read “Autism and Behaviorism” and “It’s Not About Behavior”. Listen to “Does Behaviorism Belong in the Classroom?”

Knowing that the neurodiversity and disability rights movements back Kohn’s claims with an outpouring of testimony, do you think behaviorism belongs in the classroom? Or anywhere?

Previously on behaviorism,

Profiting from Misery: When Autism Researchers Disregard Harms

Attention to adverse outcomes was absent in almost all studies and inadequate in the remaining few: 139 (93%) did not even mention or allude to this possibility, 11 (7%) had cursory statements, and none indicated that adverse events were monitored, much less how. Scrutiny of the poorly reported reasons for participant withdrawal and of effect sizes for reported outcomes yielded evidence that harms had occurred, yet were never interpreted as such.

Bottema-Beutel et al. follow Rodgers et al. (2020), whose systematic review of early intensive applied behavior analysis (ABA)-based autism interventions also found a pervasive failure to consider harms. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on adverse outcomes. Study protocols, where plans to assess adverse events should prospectively be specified, were unavailable. Reported long-term outcomes, crucial for understanding harms, were lacking for early autism interventions claimed to have lifelong effects. What harms there may have been across any timescale thus could not be determined. Instead, Rodgers et al. found poor quality studies at high risk of bias, leaving ignored ergo unknown harms balanced against uncertain and inconclusive evidence for benefits. Such “preventable uninformativeness” due to poor standards in intervention research has been flagged as a violation of research ethics, entailing de facto harms for study participants and the studied population (Zarin et al., 2019). In this way, the widespread promotion of early intensive autism interventions, based on the biased deployment of a literature uninformative about their benefits versus harms, has been and continues to be inherently harmful to autistics.

Failures in addressing harms have proliferated across autism research, Bottema-Beutel et al. suggest, for reasons such as the embrace of low standard by journals, and the omnipresence of unchecked conflicts of interest (Bottema-Beutel et al., 2020b). Disregard of harms has in turn wrongly been interpreted as evidence of no harms, with consequences rippling out to other areas (e.g. early detection and screening), distorting research and practice. Despite a large literature spanning decades, accumulated knowledge about potential or actual harms to autistics from interventions that may occupy many of their waking hours, for years, is negligible. The foundations for adequate systems or methods for monitoring harms beyond the scope of intervention studies are thus lacking. Indeed, conflicts of interest entangled with low standards in research and practice would undermine future efforts to accurately capture harms via routinely collected data. Nothing justifies these multiple failures on the part of autism researchers.

We welcome the attention to harms shown by Bottema-Beutel et al. and Rodgers et al., as well as by Benevides et al. (2020), who include, among their top 5 autism research priorities, a question about the harms of behavioral and other interventions. But this attention is as rare as it is terribly overdue. We are left with an influential literature lacking fair tests of the benefits versus harms of autism interventions that have been widely implemented for decades. Autism researchers should be deeply troubled by this comprehensive failure to apply fundamental standards. We must recognize, understand, take responsibility for, and reduce the unacceptable biases that have led to autistics being considered unharmable, such that anything can be done to them.

Source: When autism researchers disregard harms: A commentary – Michelle Dawson, Sue Fletcher-Watson, 2021

Autistic people have difficulty accessing safety. Our neurology is tuned to high alert. So it’s especially cruel that we’re subjected to such harm. Autism therapies ignore everything we know about autism. The harm done is immense.

Why is autism research such a harm factory? In large part because private equity and big autism charities distort everything.

This study is the first systematic investigation into COIs in autism early intervention research. We found that COIs exist in a majority of studies, but are widely unreported.

Source: Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta‐analysis of COI influences on intervention effects

Via Ann Memmott, who breaks it down better than I ever could in this Twitter thread:

This is such an important piece of research by @autismcrisis @SueReviews
I want to put some of its findings on this thread.
How most autism researchers, in the studies here, haven’t even thought about whether they’re damaging the children & young people/

https://journals.sagepub.com/doi/10.1177/13623613211031403

@KristenBott & team investigated this in 150 bits of research. 139 (93%) did not even mention harms as a possibility, 11 (7%) had vague summaries, & none wrote that possible harm was even monitored/

Rodgers & team looked at ABA (applied behavior analysis research. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on possible harm to the children.
None at all.
Nothing./

These poor standards in research has been flagged as a violation of research ethics.
Promotion of “early intensive” interventions (EIBI) when clueless about possible harms, “…has been and continues to be inherently harmful to autistics”/

This is a snip from the paper which talks about the horrifying things done to autistic children and young people, without ever once checking whether it’s actually done harm.
Yes, now, 2021.
Yes, ‘therapies’ paid for with public money.
Goodness me/

In choosing to believe that ‘success’ looks like a silent, still autistic child, the teams gave themselves no chance at all to assess for harm. Or to even realise that such a situation is, or could be, harmful for a child with different neurology & very real needs & emotions/

“Nothing justifies these multiple failures on the part of autism researchers”.

I agree entirely.

Not a career path.
Not a pretty award.
Not cash in the bank.

These are children whose lives have been treated as an cost-free experiment, & the damage could be lifelong.

What I find particularly shocking is that I read so many papers that have the gall to write “Yeah, we complied with Ethics and the Helsinki stuff, honest gov”.
Like hell they did.
Didn’t even think about it from start to finish.

An industry backed by a couple of rogue charity leaders who threaten researchers with, “You’ll never work again unless you do exactly as you’re told”.
Where the end result is whatever the ‘stakeholders’ want delivered (including those profiting from this misery)

“We must recognize, understand, take responsibility for, and reduce the unacceptable biases that have led to autistics being considered unharmable, such that anything can be done to them.”

Amen to that.

Originally tweeted by Ann Memmott PGC🌈 (@AnnMemmott) on July 28, 2021.

Follow the authors of ” When autism researchers disregard harms: A commentary” on Twitter:

See also Memmott’s Vital Research Links for a list of good research.

20 reasons why I (an autistic person) am stressed pretty much constantly…

Pete Wharmby is one of our favorite neurodiversity advocates and consultants. We are happy to support his work and recommend adding him to your personal learning network.

Here’s a thread from Pete on autistic stressors that we here at Stimpunks very much relate to.

20 reasons why I (an autistic person) am stressed pretty much constantly…

A thread… 🧵
#autism #experience #autismacceptance

1. Nobody ever seems to say what they mean, so I end up having to guess all the time but as I overthink them, the guesses are frequently wrong #autism

2. Everywhere is too noisy, and much of that noise is totally unnecessary. It takes up loads of my brain’s processing power. The combination of loud background noise and conversation is particularly bad. #autism

3. My brain, probably cos of ADHD, doesn’t know how to relax so I find myself never getting real down time to gradually recover. It’s layer over layer of stress, like sediments creating continents. #autism

4. The temperature is always uncomfortable. It’s either too hot or too cold and my autistic ass isn’t able to regulate it so I always feel bleurgh. Only solution is cool moving air on my face. #autism

5. Every social interaction has the potential to go awfully wrong. Either some kind of miscommunication or misunderstanding, or a full on argument, because I can’t do conversation automatically – it’s all on manual and fails so often.

6. I’m too burned out from years of masking to be able to do my career anymore, so I’m trying new stuff and it’s really scary. #autism

7. I am petrified of criticism due to how it makes me feel. Its so severe that I avoid any interaction that could lead to it. This is called Rejection Sensitivity Dysphoria and it sucks. #autism

8. My brain rebels whenever I am asked to do anything, with an immediate reaction of ‘no way,’ no matter how beneficial the thing might be. I have to do everything in my own time which is a nightmare for actually getting things done. This is Pathological Demand Avoidance

9. I absolutely need a set steady routine and anything that disturbs this can make me very unhappy, as my routine is the one thing staving off total stress. #autism

10. Sometimes my interests, which generally act to keep me happy and grounded, just disappear and no longer work in that way, leaving me totally at sea. That’s actually happening at the moment. #autism

11. If I have disclosed being autistic then I tend to get more patronised and spoken down to in a way that never happened before I was diagnosed. #autism

12. It is assumed that as I’m autistic I will have some amazing savant-like skill and I do not. This is irritating. #autism

13. People insist on making small talk all the time. I hate it, as its such a weird little verbal dance that I don’t understand. It’s talk but neither party is at all interested in the meaning of the words. #autism

14. People insist on using telephones and I have a severe phobia. I can’t make phonecalls at all and struggle to answer them too. This causes huge problems. #autism

15. My executive function is broken, meaning my ability to plan, prioritise, organise and order things is pretty bad. This makes trying to survive very difficult, especially when self employed. #autism

16. I forget everything, all the time. I don’t forget information much but I do forget to *do stuff*, pretty much constantly. This can cause problems with relationships, in work and elsewhere. I’m always dealing with the consequences of this.

17. Everything in the world is made for non-autistic people, meaning that all autistic people are immediately at a serious disadvantage. This is exhausting and depressing. #autism

18. I am painfully aware of rates of depression, anxiety and suicide among autistic people, which makes everything feel much harder to bear. #autism

19. I am constantly afraid that I have upset someone, at some point, somewhere and it makes me miserable. #autism

20. Non-autistic people don’t appear particularly interested in improving things for the sizeable autistic population, which is a constant source of annoyance and sadness. #autism

Now bear in mind all of that is from a cis white male. Throw in any further intersections and the situation gets much more difficult. This is a pretty low level of stress compared to some.

Originally tweeted by Pete Wharmby (@commaficionado) on July 19, 2021.

I, Ryan, relate to every single reason, but especially this one:

I too burned out of my career, and now I’m trying something new with Stimpunks. Scary indeed.