I updated “Wanted: psychologists, psychiatrists, neuropsychiatrists, and neurologists who…” with selections from “SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues”.

Both formal research, and autistic people’s own reports, clearly show that autistic health concerns-including mental health issues-are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.

It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.

I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people-even those technically capable of holding a conversation-can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as “difficult.”

I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son’s experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.

I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.

I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed byAASPIREandUCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.

I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments-yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son’s life and those of his autistic community members are valuable, and should be treated that way.

Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren’t male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in “community ambassadors” who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.

Source: SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues

I updated “Neurodiversity in the Classroom” with selections from “Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?”.

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.

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

I updated “Eye Contact and Neurodiversity” with selections from “THINKING PERSON’S GUIDE TO AUTISM: Eye Contact: For The Recipient’s Validation Only”.

“Look at me!” The mouth beneath the eyes commands. “I don’t want to, it hurts…” you think.

“This is all part of the problem you see?” The voice says to your parents who nod sadly, “Lack of eye contact, this we must stamp out. It’s a sign of non-compliance, a sign of disregard. The child’s lost, you see…?”

“What?” You think, baffled, “I’m right here!”

> Your parents sign a form giving permission for intense Applied Behavior Analysis to begin.

Forty hours per week.

Forty hours of look at me/quiet hands? No more fluttering your hands in a language only you know, no more flapping your hands watching golden drops of happiness fly from your fingertips as you hum … no more angry bolts of lightening flying from your nails as you shake your hands so hard your wrists pound.

No more you.

Forty hours per week.

Forty hours of look at me/quiet hands? No more fluttering your hands in a language only you know, no more flapping your hands watching golden drops of happiness fly from your fingertips as you hum … no more angry bolts of lightening flying from your nails as you shake your hands so hard your wrists pound.

No more you.

Eye contact, who’s it for? It’s not for the autistic child. It’s for the recipient. It’s for their own validation to reassure them that you know they exist. That you are aware they are speaking that you comply. That you acknowledge them.

It’s not about the child; it’s no benefit to the child to do something that in many cases is painful.

Intrusive.

It’s for them.

They don’t understand the avoidance of eye contact, the rapidly moving hands, the hum and the bounce of the feet.

The rhythmic rock you employ to comfort, a rock that’s universal if they would only look back to a parent rocking a babe: safety.

Predictability.

Source: THINKING PERSON’S GUIDE TO AUTISM: Eye Contact: For The Recipient’s Validation Only

I also moved this embedded tweet toward the beginning of the post.

I updated the “Blogging, Domain of One’s Own, and WordPress” section of “Communication is oxygen. Collaborative indie ed-tech.” with selections from “Word Press for Weans 2018 #pressedconf18” on Scotland’s Glow Blogs service that provides WordPress blogs to all students and teachers.

Glow is a service for to all schools & education establishments across Scotland.

Glow gives access to a number of different web services.

One of these services is Glow Blogs which runs on WordPress.

All teachers and pupils in Scotland can have access to #GlowBlogs via a Single signon via RMUNIFY (shibboleth)

Glow Blogs are currently used for School Websites, Class Blogs, Project Blogs, Trips, Libraries, eportfolios. Blogs By Learners, Blogs for Learners (Resources, revision ect), collaborations, aggregations.

Source: Word Press for Weans 2018 #pressedconf18

I updated “I’m Autistic. Here’s what I’d like you to know.” with a selection from “Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America” to expand the bullet point on stress and stress cases and bring in a critical psychiatry voice. A longer quote from this piece is included in “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life”.

People who enter services are frequently society’s most vulnerable–people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” … Our brains and bodies don’t know the difference between “trauma” and “adversity”–a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

This doesn’t fit the flow of the bullet point as well as I’d like. Connective editing TBD.

I might work this quote/theme into Autistic Burnout: The Cost of Masking and Passing.

I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with selections from “Valuing differences: Neurodiversity in the classroom  – kappanonline.org” and “What CAN be misunderstood WILL be misunderstood | Autistic Collaboration”.

Sometimes it takes another person with your specific disability label, not another neurotypical teacher or peer, to help the world understand your experience. One of the first books I read about autism was Donna Williams’s memoir Nobody Nowhere: The Extraordinary Autobiography of an Autistic (Jessica Kingsley Publishers, 1998). One of her observations has always struck me as particularly apt: “Communication via objects was safe,” Williams says. For me, computers are objects that can be a bridge to interpersonal connection and growth. Those are things we all want, regardless of our differences.

Source: Valuing differences: Neurodiversity in the classroom  – kappanonline.org

I have developed a strong preference for written communication, which is a very effective strategy for avoiding the need for linguistic autistic masking.

Source: What CAN be misunderstood WILL be misunderstood | Autistic Collaboration

I updated “Mindset Marketing, Behaviorism, and Deficit Ideology” with selections from “Grit and Growth Mindset: Deficit Thinking?”.

Thomas points to the deficit thinking that is inescapable with grit and growth mindset-The idea that students who do not demonstrate white, well-resourced definitions of perseverance with curriculum that may or may not be meaningful to them, in a larger system that is often operated with intentional and unintentional bias against their success, and to act upon those perseverance ideals daily are somehow less disciplined than others, diminished in a way, and that teachers must “fix” what’s wrong in them, (i.e., personal character and maturity) and not fix their environments and the controlling narratives of those in power that perpetuate this constant diminished state.

Author and educator Richard Cash agrees, referring to deficit thinking as the, “spoken and unspoken assumptions about a student’s lack of self-regulation, ability, or aptitude. The most devastating impact of deficit thinking is when differences-particularly socio-cultural differences-are perceived as inferior, dysfunctional, or deviant … Typically, schools are designed to ‘fix’ students who are achieving poorly or misbehaving. However, by blaming students, we exonerate ourselves as the possible cause-using the symptom to overlook the source” (June 2018).

Thomas ties it to his critique of grit/growth mindset: “Both growth mindset and grit … mistake growth mindset/grit as the dominant or even exclusive quality causing success in student learning (ignoring the power of systemic influences) and then create an environment in which some students (too often black, brown, and poor) are defined in deficit terms-that they lack growth mindset/grit.” He adds, “[S]tudents are better served by equity practices couched in efforts to alleviate the systemic forces that shape how they live and learn regardless of their character.”

In a separate post, he argues that it is particularly harmful, yet typically American, thinking to assume that students’ success and failure is driven solely by individual character and behavior, when actually, so much of any one individual’s success or failure is driven by social forces, environment of birth, and systemic biases. He recommends Sendhil Mullainathan’s Scarcity: Why Having Too Little Means So Much to clarify this point, as do I-It’s a thoughtful read.

Thomas and others claim that growth mindset/grit programs, “disproportionately target racial minorities and impoverished students, reinforcing that most of the struggles within these groups academically are attributable to deficits in those students … linked to race and social class … [which] perpetuate race and class stereotypes, and as a result, work against inclusive pedagogy and culturally relevant pedagogy” (Thomas, 2018).

Thomas promotes author and educator Paul Gorski’s assertion that, “Equity literate educators … reject deficit views that focus on fixing marginalized students rather than fixing the conditions that marginalize students, and understand the structural barriers that cheat some people out of the opportunities enjoyed by other people.”

At the Equity Literacy Institute, Gorski is clear: “We must avoid being lulled by popular ‘diversity’ approaches and frameworks that pose no threat to inequity-that sometimes are popular because they are no real threat to inequity.”

Source: Grit and Growth Mindset: Deficit Thinking?

I updated “Mindset Marketing, Behaviorism, and Deficit Ideology”, “Neurodiversity in the Classroom”, “Surveillance, Positive Behavior Support, and Intrinsic Motivation”, “Reading Logs and Intrinsic Motivation”, “We don’t need your mindset marketing.”, and “Cambridge Analytica, Mindset Marketing, and Behaviorism” with selections from “It’s Not About Behavior – Alfie Kohn”.

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.

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.

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

Selected quotes from the piece as a Twitter thread: