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 “Created Serendipity: Chance Favors the Connected Mind” with a selection from “Ep. 102 danah boyd “Seeing New Worlds” – Team Human”.

if we don’t support young people in building out a strategically rich graph, they will reinforce the worst segments of our society

Source: Ep. 102 danah boyd “Seeing New Worlds” – Team Human

When the bubbles popped, and the jobs disappeared, and the debt soared, and the desperation hit, Americans were told to stay positive. Stop complaining – things will not be like this forever. Stop complaining – this is the way things have always been. Complainers suffer the cruel imperatives of optimism: lighten up, suck it up, chin up, buck up. In other words: shut up.

The surest way to keep a problem from being solved is to deny that problem exists. Telling people not to complain is a way of keeping social issues from being addressed. It trivializes the grievances of the vulnerable, making the burdened feel like burdens. Telling people not to complain is an act of power, a way of asserting that one’s position is more important than another one’s pain. People who say “stop complaining” always have the right to stop listening. But those who complain have often been denied the right to speak.

The condemnation of complaining is not unique to America. Dictatorships around the world are famous for self-reported statistics of sky-high happiness. In Uzbekistan, a state run on surveillance, corruption, and torture, 95 percent of the country is said to be content. Last August, one of the openly unhappy 5 percent, a 73-year-old man, filed a complaint about police brutality with neighborhood officials. They arrested him for violating a ban on filing complaints.

The absence of complaining should be taken as a sign that something is rotting in a society. Complaining is beautiful. Complaining should be encouraged. Complaining means you have a chance.

Source: Kendzior, Sarah. The View From Flyover Country: Essays by Sarah Kendzior (Kindle Locations 2466-2479). Unknown. Kindle Edition.

Much of my thinking here has been informed by sex positivity, and how it can be applied to fictional worlds. There are two key principles to the movement: first, active, informed consent in all aspects of sexuality, and second, anything that happens between consenting adults is natural. I particularly like how principle the first flows into principle the second: if you have active, informed consent, then anything consenting adults do afterwards is natural.

And yes, it means consent for everything. Recognising the heroine’s bodily autonomy, her right to decide what happens to it at every point is crucial to these discussions. We need to divorce the idea of sexy from the idea of surprise. Your heroine can be pursued, but she must not be prey.

It means empowering your heroine’s choices—write that contraception scene. This is the genre where it should become so ingrained that women engage only in safe sex—protecting themselves and their partners—that it becomes cliche. Empower your heroines to demand safety, and empower your heroes to deliver it without being asked.

Source: Consenting adults: Kate Cuthbert on the romance novel and representations of sexuality after #MeToo | Books+Publishing

Now, as a historian of the Nazi era, I am drawn to an even starker contrast, this one between how post-World War II Germany and the post-Civil War United States acknowledge their roles in institutions built upon human suffering. Put simply, in coming to terms with its past, Germany eventually elected to memorialize its victims, while the United States, particularly the South, chose to commemorate not the victims but the institution itself and the society that created it. The one society focuses on the victims, the other the defeated. The United States could learn from Germany’s example.

Source: U.S. put its Silent Sams on pedestals. Germany honored not the defeated but the victims. – The Washington Post

Dominant ideologies, then, have the power to create invisibility in plain sight. Once anything becomes normal, many simply refuse to see what is right their before their eyes.

That problem is grounded in how the marginalized are often positioned with the responsibility to bring that which has been rendered invisible into the light while also being poised to suffer the greatest consequences for that unmasking.

The student stepping back from idealized views of the police in order to acknowledge Baldwin’s criticism is taking a risk in a context that is mostly authoritarian.

A woman scholar taking ethical stances against the powerful current of her field is assuming risk in a context that maintains a false veneer of objectivity and high rigor.

If we are to experience a revolution of recognition, the leverage of those with privilege is essential, to pry away the cloaking in order to see what has been right their in front of our eyes all along.

Source: Invisible in Plain Sight: On Refusal | radical eyes for equity

Whiteness is law, legitimacy, citizenship, the benefit of the doubt. Not-white is doubt. Not-white has to prove, not just once but over and over: 52 traffic stops. Can a white person even imagine? For 52 times Philando Castile had to stop and show his papers, keep his cool, say yes sir, no sir. Had to check the fury that surely rose in him with every stop, every new harassment and humiliation. This remarkable record of self-control should properly be called superhuman. A certain kind of gasbag politician loves to yatter at minorities for their alleged dearths of “personal responsibility,” yet these pols remain blind to a form of strenuous personal responsibility that’s enacted in some fashion several million times a day by people of color in America.

Source: Slavery and the Origins of the American Police State

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.