Having steered the higher-education terrain for a decade of my life, I know that degrees and credentials are primarily badges of compliance. Those with extended schooling have lived for many years in a world where one routinely conforms to the demands of authorities.
So authoritarians financially marginalize those who buck the system, they criminalize anti-authoritarianism, they psychopathologize anti-authoritarians, and they market drugs for their “cure.”
Witnessing a mental health profession that is fast on its way to achieving complete ignorance about the nature of human beings would simply have validated Carlin’s general hopelessness.
Collecting data on human learning based on children’s behavior in school is like collecting data on killer whales based on their behavior at Sea World.
People all over the world know these things about children and learning, and interestingly, they are as workable for learning how to design software or conduct a scientific experiment or write an elegant essay as they are for learning to hunt caribou or identify medicinal plants in a rainforest.
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.
Going around social media right now is a story about a school forcing students to smile.
Students who do not smile in the hallways between periods will be instructed to, and if they refuse, they will be sent to the guidance counselor’s office to talk through their problems, reported Lebanon Daily News. Meanwhile, parents claim that reports of bullying in the district are mostly ignored by administrators.
This policy is sexist and ableist, among other problems, and ties in with Levine’s thoughts on authority and hopelessness. The students aren’t the problem; it’s the authoritarians who refuse to analyze systemic causes and get structural. Forced smiling pathologizes a hopelessness that is perfectly understandable and reasonable given the structural isms of school and society. Forced smiles don’t address poverty or principals who are sexist, authoritarian assholes. Forced smiles are just more mindset marketing bandages slapped over suppurating structural injury.
Not smiling in the face of reckless and illegitimate authority doesn’t mean you are mentally ill or broken. It’s the authoritarians and those who comply who are broken. Hopelessness is legitimate. Gaslit smiles are not. Forced smiling and the psychopathologization of hopelessness are deeply authoritarian attempts to overwrite another person’s reality.
Carlin was a far better therapist for critical thinkers than are the vast majority of my mental health professional colleagues. Shaming hopelessness as some kind of character flaw or, worse, psychopathologizing it as a symptom of mental illness only adds insult to injury. Hope missionaries ignore the reality that pathologizing hopelessness does not make critical thinkers more hopeful, only more annoyed.
I know many mental health professionals who espouse hope but who are broken and compliant with any and all authorities. In contrast, I know anti-authoritarians who, like Carlin, express hopelessness but who are unbroken and resist illegitimate authorities. Carlin modeled a self-confident rebellion against authoritarianism and bullshit, and he provided the kind of humor that energizes resistance.
I don’t know the exact moment when I became hopeless about my mental health profession, but my experience has been that one can be embarrassed by one’s profession for only so long before that embarrassment turns into hopelessness.
The symptoms of ODD include often argues with adults and often refuses to comply with authorities’ requests or rules. At that time, I was in graduate school for clinical psychology and already somewhat embarrassed by the pseudoscientific disease inventions of my future profession; and throwing rebellious young people under the diagnostic bus with this new ODD label exacerbated my embarrassment.
My embarrassment transformed into hopelessness as it became routine to prescribe tranquilizing antipsychotic drugs to ODD kids; to diagnose kids with mental disorders merely for blowing off school while their entire family was falling apart; and to prescribe Ritalin, Vyvanse, Adderall, and other amphetamines to six-year-olds who had become inattentive as their parents were engaged in a nasty divorce.
Achieving hopelessness about my profession had great benefits. It liberated me from wasting my time with authoritarian mental health professionals in efforts at reform; and it energized me to care solely about anti-authoritarians who already had their doubts about my profession and sought validation from someone within it. Embracing my hopelessness about my profession made me whole and revitalized me.
Witnessing a mental health profession that is fast on its way to achieving complete ignorance about the nature of human beings would simply have validated Carlin’s general hopelessness.
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.
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.
Thank you, @brookewinters33 for explaining this so well. I go into schools and events where the #autistic children are in crisis through awful environment/actions by others, to be told, "It's their autism". It's not. A meltdown or shutdown is a distress/crisis behaviour. https://t.co/COGkSeZw1w
— Ann Memmott PGC🌈 (They/she) (@AnnMemmott) April 24, 2018
Why meltdowns are alarm systems to protect #autistic brains:
"I don’t melt down because I’m Autistic. I melt down because something in my environment is intolerable, & I am having a normal reaction of pain and/or anxiety.” From @UnstrangeMind, at #TPGA:https://t.co/winnbcsgZO
— Thinking Person's Guide To Autism (@thinkingautism) July 30, 2018
Imagine if for decades, people were 'treating' diabetes low blood sugar incidents (and angry/distressed behaviour through them) with 'challenging behaviour' courses.. instead of preventing them happening in the first place? That. Meltdowns = distress. Sort the distress. Not hard
— Ann Memmott PGC🌈 (They/she) (@AnnMemmott) April 26, 2019
As we know, if someone is in a meltdown or shutdown, something has gone terribly wrong. It is not a 'challenge'. Changing attitudes of people around us, and changing what they know about autism, sorts out a huge number of such misunderstandings and disasters. Not all. But most.
— Ann Memmott PGC🌈 (They/she) (@AnnMemmott) April 26, 2019
Autism. Challenging Behaviour. A thread. I see a lot of people writing about 'challenging behaviour' from autistic people. Autism does not cause any 'challenging behaviour'. Let me explain what I mean by this….
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.
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.
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.
Pretty much everything an autistic child does, says, doesn't do or doesn't say is pathologised and made into a way to invent a 'therapy' for it. It's actually hell to experience. We should stop doing this and start learning about autism. Thank you for listening.
— Ann Memmott PGC🌈 (They/she) (@AnnMemmott) July 8, 2018
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!
Thoughts? – "This Video Demonstrates What It’s Like to Be an Autistic Adult Who Isn’t Being Heard" https://t.co/ODzBy9kT4n
— NeuroDivergent Rebel (they/them/Xe/Xem) 🧠 🏳️🌈 (@NeuroRebel) May 5, 2018
Parents of autistic children: this short video is a great example of the insights you can gain about your children if you listen to the experiences of autistic adults. We can help you understand – if you listen. https://t.co/rtKX6agQyd
— Dr. Laura Z. Weldon (@neuronaturopath) May 7, 2018
Autistic kids need access to autistic communities. They need access to autistic mentors. They need to know that the problems they go through are actually common for many of us! They need to know they are not alone. They need to know that they matter and people care about them 1/2 https://t.co/8nCzm8URwh
— AutisticSciencePerson, MSc (@AutSciPerson) July 22, 2018
They need to see autistic adults out in the world being accommodated and understood and respected. They need to learn how to understand their own alexithymia and their own emotions. They need to be able to recognize themselves in others. They need to be able to breathe. 2/2
— AutisticSciencePerson, MSc (@AutSciPerson) July 22, 2018
That study identified, unsurprisingly, that it's parents & professionals are ones fighting to hang onto 'special' but here's the thing I honestly don't get – you are depriving the kid of their membership in a big, welcoming, fantastic, supportive community by doing so. Why?
— Gabrielle Peters: Pauper crip👩🏻🦽💚 (@mssinenomine) August 27, 2018
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.
I’m spending a couple days with autism researchers & diagnostic physicians who are seeking to build a neurodiversity initiative at their university. I can’t tell you how refreshing it is to meet researchers/doctors who understand autistic people as we understand ourselves.
This paper uses ASC (autism spectrum conditions) instead of ASD (autism spectrum disorder) and IFL (identity-first language) instead of PFL (person-first).
"I want to use respectful language in my research paper about autism". A thread. As we move firmly past the 20th Century 'tragedy thinking' about autism, more researchers are embracing good and positive language around autism. Let's take a quick tour of some:
— Ann Memmott PGC🌈 (They/she) (@AnnMemmott) August 5, 2018
Encouraged by the amount of #qualitative psychological research being presented here at #DiscoverConf. So pleased that autistic voices are being placed centre-stage.
“It's very positive that researchers like Simon are now getting caught up in advocating for neurodiversity. It is better for parents and children's well-being to have autism understood. #Hatespeech towards autistic people ought to be prevented.”#AutisticCultureShift
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.
Let’s be blunt. The priorities of NT people in autism research and autism organizations have fucked up an entire generation of autistic people. That’s shitty science and shitty ethics. It’s time to stop. #INSAR2018
This is one of the heartbreaks about being autistic. We tend to love certainty and support science. Yet, we constantly face scientific and medical professionals whose credentials we want to trust but whose information has been greatly misinformed. It’s a systemic problem.
An example of how crucial Autistic insights can be, because when it comes to #Autistic kids, too often “the people society says are the most qualified to help are the people least equipped to understand.” From the #TPGA archives:https://t.co/v9B363mAHz#neurodiversity
— Thinking Person's Guide To Autism (@thinkingautism) October 3, 2018
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.
In @milton_damian's PhD research, "celebrating the diversity of learners and not trying to 'normalise' them" was the most important concern among his stakeholder participants.
"Differences should be accommodated, accepted and celebrated"#DiscoverConf
Autistic people understand an acute sense of difference – 'The people who need training are the teachers and their peers' @milton_damian I am presenting on peer-mediated approaches this afternoon #DiscoverConf
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.
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.
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.
