These tweets are good advice, especially before infodumping after someone tickles one of your SpIns.
Today's tip for communicating while neurodiverse: no matter how exciting the thoughts you're having off someone else's point, make sure to start your reply by acknowledging you saw & understood what they said. 1/2
— Velocicogitator EJ 🦖 Black & Indig Lives Matter (@EJhummingbrain) August 3, 2020
It's amazing how easily you can look like you're arguing with someone bc you forgot to make it clear you're saying "yes, and!" not "no, but". Especially if you're going off on a decent tangent.
A simple "Good point!" or "That makes sense" is all you need 2/2
— Velocicogitator EJ 🦖 Black & Indig Lives Matter (@EJhummingbrain) August 3, 2020
Sometimes my “yes, ands…” are too subtle before I infodump in enthusiasm. They can come off as “no, buts…” and intellectual bullying.
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.
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.
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.
One of the more encouraging developments in the autism field over the last decade or so has been a growing awareness of the significance of sensory issues. Sensory sensitivities are included in the DSM-5 as part part of the diagnostic criteria for autism, and in teacher training materials, such as those provided by the AET. They are also highlighted in campaigns by the National Autistic Society (NAS), for example. But despite these signs of increased understanding, I’m not convinced that in our schools there is a sufficiently nuanced appreciation of this multi-faceted phenomenon, which potentially influences a whole range of physical and perceptual processes (Bogdashina 2016). Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.
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.
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.
After autistic students age out of our care, we erase them again as adults. Instead, we should be listening to them.
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!
understanding the perspectives and experiences of autistic children and adults in particular was essential. Time and again I found that issues aired say, by teachers, would be completely reframed when the autistic adults discussed the same points.
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?
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…
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.
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.
A Better Future, Together
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.
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.
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.
Lately, I’ve seen the neurodiversity movement presented in terms of unilateral accommodationism by detractors of the “Neurodiversity Lobby”.
Here are a few examples anonymously cribbed from Twitter.
Do you believe autistic people should cultivate ourselves, or should society just accommodate us with no effort on our parts?
Neurorealism means that autistic people should cultivate ourselves as far as is reasonable, and other people in society should accommodate ourselves as far as is reasonable. This is bilateral accommodation, and it is generally rejected by the Neurodiversity lobbyists.
The Neurodiversity lobby advocates unilateral accommodationism.
I’m not hanging out in every pocket of the greater neurodiversity universe, but around the watercoolers I lurk, accommodation is usually couched not in unilateral terms, but in terms of bridging the double empathy gap and moving from the framing of accommodation to the framing of inclusion and acceptance.
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.
That wiggle room to learn differently isn’t so wiggly, because what you earn upon clearing the many hurdles of accommodation is segregation and access to a disability industrial complex that pathologizes your identity and seeks to suppress your differences through behaviorism.
My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.
We have a medical community that’s found a sickness for every single human difference. DSM keeps growing every single year with new ways to be defective, with new ways to be lessened.
Disability industrial complex is all about what people can’t do. We spend most of our time trying to fix what they can’t do. When all we do is fix people the message we give to them is that they are broken.
We have created a system that has you submit yourself, or your child, to patient hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.
We’re not preparing our kids for unilateral accommodationism or universal acceptance; we’re preparing them for a journey against odds and equipping them with a social model identity, the tools of self-advocacy, and the support of their neurosiblings and cousins so that they can help improve our systems for themselves and those who come next.
So far, I find the unilateral accommodationism line too reductionist. It smashes nuance out of the neurodiversity movement I know and discounts a whole lot of people who are doing the quiet, back-and-forth, iterative work in our schools, workplaces, and institutions of opening minds to social model perspectives. “Unilateral accommodationism” suggests neurodivergent and disabled people have the power and that there is anything resembling a good faith effort to meet us even halfway. It smacks of resentment.
Neurodiversity is a movement that celebrates difference while remaining deeply nuanced on questions of (medical) facilitation and the necessity of rethinking the concept of accommodation against narratives of cure. The added emphasis on neurology has been necessary in order to challenge existing norms that form the base-line of existence: the “neuro” in neurodiversity has opened up the conversation about the category of neurotypicality and the largely unspoken criteria that support and reinforce the definition of what it means to be human, to be intelligent, to be of value to society. This has been especially necessary for those folks who continue to be excluded from education, social and economic life, who are regarded as less than human, whose modes of relation continue to be deeply misunderstood, and who are cast as burdens to society.
Nonetheless, I think it’s fair to say that this enhanced perceptual field is an aspect of much autistic experience and something neurotypicals could learn a lot from, not only with regard to perception itself, but also as concerns the complexity of experience.
Neurotypicality is a grounding narrative of exclusion. The neurotypical is the category to which our education systems aspire. It is the category to which our ideas of the nuclear family aspire. And, it is the category on which the concept of the citizen (and by extension participation in the nation-state and the wider global economy) is based.
In the context of education, which is the one I am most knowledgeable about, the mechanisms for upholding the neurotypical standard are everywhere in force. Every classroom that penalizes students for distributed modes of attention organizes learning according to a neurotypical norm. Every classroom that sees the moving body as the distracted body is organized according to a neurotypical norm. Every classroom that teaches predominantly for one mode of perception is organizing its learning according to a norm. Every classroom that knows in advance what knowledge looks and sounds like is working to a norm.
Having “special needs” classrooms upholds neurotypicality, for instance, as the dominant model of existence. Drugging our children because of their attention deficit is upholding a neurotypical norm. Sending our black and indigenous children to juvenile detention centers in disproportionate numbers is upholding a neurotypical norm which takes, as neurotypicality always does, whiteness as the standard.
To engage with neurodiversity is to speak up about the extraordinary silence around neurotypicality and to acknowledge that we do not question ourselves enough as regards what kinds of bodies are welcomed and supported in education, and in social life more broadly. It is still far too rare that we discuss neurotypicality as that which frames our ways of knowing, of presenting ourselves, of being bodies in the world.
The violence of the norm that is imposed without ever having to be spoken as such is debilitating. Not only does it normalize education, siphoning out difference of all kinds, but it also forces all bodies who want to be recognized as “knowledgeable” (and thus human) to be organized within an incredibly unimaginative matrix.
Neurotypicality as mode of knowledge policing builds on what it considers “direct” communication.
What is needed are not more categories but more sensitivity to difference and a more acute attunement to qualities of experience.
Intersectionality is a structural theory about processes and systems that make our identities mean something in different contexts.
Intersectionality’s raison dêtre is to reveal the systems that organize our society. Intersectionality’s brilliance is that its fundamental contribution to how we view the world seems so common-sense once you have heard it: by focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best. Mark Lilla and others who critique this view of the body politic, reducing it to the caricature of “identity politics”, refuse to engage intersectionality’s most powerful empirical truth: we all have intersectional identities and all of them matter, if not all in the same way.