Tag: special needs

“Yes, And…” Infodump

These tweets are good advice, especially before infodumping after someone tickles one of your SpIns.

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.

Source: 7 Cool Aspects of Autistic Culture » NeuroClastic

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?

Updated version available

An updated and expanded version of this article is available at Stimpunks Foundation.

Read the Update

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.

Contents:

  • Sensory Overwhelm and Meltdowns
  • Behaviorism
  • Autistic Adults and Autistic Community
  • Autistic Burnout
  • Participatory Research
  • The State of Research and the Harm Done
  • A Better Future, Together
  • Selected Quotes

Sensory Overwhelm and Meltdowns

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?

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.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

Behaviorism

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 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.

Autistic Adults and Autistic Community

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!

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

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.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

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

Autistic Burnout

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

Participatory Research

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

https://twitter.com/slooterman/status/1028017893370417152?s=12

The State of Research and The Harm Done

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.

https://twitter.com/slooterman/status/1041117954287566848

https://twitter.com/aneeman/status/1041118747078078464

https://twitter.com/aneeman/status/1041119659817426944

https://twitter.com/aneeman/status/1041120050562912256

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.

A better future requires time and will to get structural, get social, get 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 together.  Respecting 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“.

Selected Quotes

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.

https://twitter.com/mrhunsaker/status/1014907760901668865

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,

Neurodiversity and Unilateral Accommodationism

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.

Accommodation encourages the harmful ableist tropes of people being “special” and “getting away with” extra “privileges” and “advantages”. Accommodation is fertile ground for zero-sum thinking, grievance culture, and the politics of resentment. The terrain of accommodation is hostile and fraught. The topography is designed for attrition. Navigating it consumes spoons while fueling internalized ableism, anxiety, depression, and burn out. We must change the framing to survive. We must change the default.

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.

Source: THINKING PERSON’S GUIDE TO AUTISM: Mental Health and Autism: Why Acceptance Matters

Social model families are real families preparing our kids for a real world where neurodivergent people have shortened lifespans, higher unemployment, and higher likelihoods of ending up under state control or being killed by law enforcement. We have to prove our disabilities and “disorders” and identities over and over to get any wiggle room to be different and learn differently in our resentful compliance cultures. We must submit ourselves to patient-hood and bear the language of deficit and disorder as identity.

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.

Source: THINKING PERSON’S GUIDE TO AUTISM: Mental Health and Autism: Why Acceptance Matters

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.

Source: The Gift: LD/ADHD Reframed

Accommodation gets you more deficit model and more medical model, but rarely compassion. Compassion and acceptance are practical and effective magic. They remedy a lot of problems and contribute to psychological safety. Acceptance matters. Accommodationism, unilateral or the usual, doesn’t get you much of it.

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.

“At its core, intersectionality is about nuance and context.” Likewise with neurodiversity. My neurodiversity is about nuance and context. It’s about the “foregrounding of complexity as the baseline”.  It’s about structural ideology and equity literacy. It’s about challenging the “violence of the norm” and the “grounding narrative of exclusion” that is neurotypicality.

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.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

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.

Source: The Intersectional Presidency – Tressie McMillan Cottom – Medium

See also,