Wanted: hospitals and doctors’ offices that…

• are equity literate and conversant in neurodiversity, the social model of disability, the biopsychosocial model, intersectionality, and structural ideology
• understand and acknowledge autistic burnout
• understand the sensory overwhelm -> meltdown -> burnout cycle
• understand access intimacy
• communicate electronically; written communication is the great social equalizer
• offer electronic payment
• have websites
• provide medical records in the format requested
• provide portals, but don’t require their use
• include accessibility information on their websites
• provide a backchannel during sessions to ease sharing
• respect trauma
• respect patient expertise
• respect identity-first language
• wear masks
• design their offices and flow for neurological pluralism
• aren’t racist, sexist, ableist, or childist #MedicalAbleism #MedicalMisogyny #MedicalRacism #MedicalTrauma #PatientsRights #MedTraumaChat #DoctorsAreDickheads
• aren’t authoritarian
• and don’t gaslight #MedicalGaslighting

Content Note: medical racism, sexism, ableism, abuse, trauma, neglect, gaslighting

They don’t take #DisabilityStudies classes.

They don’t socialize with us.

They don’t listen to us.

I had to fight every single day to be heard and understood and to get better care.

During the hospital experience, I dealt with racism, I dealt with sexism.

The first doctor I had was fantastic, but they rotated him out.

And the rest of my experience, I had to fight every single day to be heard and understood and to get better care.

I didn’t have my chronic illnesses properly addressed, I didn’t have any of my neurodiversities taken into consideration at all, nor my comfort.

It was a hellish experience towards the end.

And I finally decided I just need to get out of there.

Tinu Abayomi-Paul – YouTube

Autism Friendly General Practice

Image source: Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study | BMJ Open

Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations and untreated potentially life-threatening conditions. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents.

Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives, communication needs and sensory sensitivities. Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.

Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study | BMJ Open

“Autistic girls are having to fight to be recognised as being seen as ‘autistic enough’ by professionals.”

“22% of autistic women are hospitalised because of their mental health by the age of 25.”

A 2019 study found that 1 in 2 women (52%) believe that gender discrimination negatively impacts their medical care, while nearly a third of women said they felt a need to “prove” the legitimacy of their medical concerns and symptoms for their doctors. Despite having my autism diagnosis for over ten years, I was put into a position where I felt the need to ‘prove’ myself to this occupational health doctor, and the sad part, is that I was one of the lucky ones.

With droves of young women lining the wards of psychiatric hospitals, some might say that we’re back in the ‘hysteria’ era. But the truth is, at least for autistic women, we never left it. This is why organisations such as the National Autism Society are also speaking out about how medical misogyny has impacted autistic women.

With autistic women being thirteen times more likely to die by suicide than the average person, the implications are clear. If clinicians don’t work to address their internal biases now, the consequences will be deadly.

Medical misogyny is causing a mental health crisis among autistic women | Glamour UK

Our Entire Medical System From the Rooter to the Tooter Is Eugenics

Bodies ride the waves
Somebody's gonna have to pay
Bodies, living on the shore in their sandcastles
Bodies, sea is getting rough and the walls rattle
Bodies, come with the tide
Nowhere left to hide
Bodies
Bodies

A thousand thoughts ride the waves
Can't save nobody, I'm too late
Bodies, no one cares about the coming last battle
Bodies, wavеs crashing down and the ocean swallows
Bodies
Whеre you gonna hide the bodies?
Bodies
Hey-oh-hey-oh

On the shore living in sandcastles
No one cares about the coming last battle
Sea is getting rough and the walls rattle
Waves crashing down and the ocean swallows
Bodies
Bodies

--Bodies by Rabbit Junk

Get a Dose of Social Science

Throughout history, scientific research has been defined in ways which further the agenda of ableist, white supremacist power systems. At the same time, traditional notions of what constitutes scientific research has been reified by policymakers and scholars in education, who equate “science” with clinical methods and hard-numbers data. Using the framework of DisCrit, we provided a brief critical analysis of the use of science by dominant groups to label minorities as “others” throughout U.S. history. This scientific research is strongly linked to education policy, which inexorably functions to separate white, non-dis/abled students from students who are constructed as deficient and/or dis/abled because of the articulation of their linguistic, cultural, and racial identities. The pervasive acceptance of the dis/abling scientific studies was (and is) largely due to what counts as scientific research, and what does not. The authors identified some of the current notions of what is considered “evidence” in research and education policy; despite progressive trends in modern medical research, traditional clinical and/or quantitative studies continue to serve as the “gold star” in education research and testing. Although scholars claim quantitative research is more objective and reliable, there are many opportunities for human error and subjectivity at the design and procedural level of research, which trouble these assertions of a fixed truth. In quantifying and parsing elements of the human experience, this type of research results in a loss of multidimensionality. In reality, this kind of research only serves to uphold the values of white supremacy and ableism.

Disrupting Dis/abilization: A Critical Exploration of Research Methods to Combat White Supremacy and Ableism in Education

Respect Patient Expertise

Embrace Patient Autonomy

Presume Competence

“To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world. Presuming competence is nothing less than a Hippocratic oath for educators.”

Never assume that the ability to speak equals intelligence. There are plenty of autistic people who have trouble speaking but who have glorious creative worlds inside them seeking avenues of expression. Never assume that an autistic person who can’t speak isn’t listening closely to every word you say, or isn’t feeling the emotional impact of your words. I’ve interviewed many autistic people who said they could hear and understand everything around them while people called them “idiots” or described them as “out of it” to their faces. Ultimately, presuming competence is the ability to imagine that the person in front of you is just as human as you are, even if they seem to be very impaired. If you understand that the autistic students in your class are just as complex and nuanced and intensely emotional and hopeful as you are, you’ll do everything in your power to help them lead happier and more engaged lives.

A Q&A about autism with Steve Silberman, author of NeuroTribes

This is a story about a hospital treating a woman with complex medical needs as if she were the problem, a predicament that neuro-atypical Americans fear they’ll face every time they seek medical care. What’s more, the medical staff—at least as Kupferstein experienced it—did so by questioning her fundamental competency to assess and be an expert in herself. They applied the label “mental retardation” to make her own voice less potent in managing her care.

There are two problems here. First, Kupferstein does not, in fact, have an intellectual disability. Second, doctors should clearly listen to patients who do have intellectual disabilities. In fact, by mislabeling Kupferstein, they plunged her into a category of patients who are especially vulnerable to abuse in hospital settings. I reviewed a number of recent studies about people with intellectual disabilities in hospitals; in each of them, researchers agreed that the risks for such patients were higher, that the outcomes were worse, and that improving the situation would require educating doctors, and teaching them to presume competence in all their patients. Kupferstein’s experience of being misidentified, then ignored and dehumanized, shows just how far we have to go.

When Hospitals Mistreat Disabled Patients – Pacific Standard

Presuming competence is not an act of kindness.

Presuming competence is not something we do because we are a “good” person.

We do not get to pat ourselves on the back because we have presumed competence. If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.

“Presume Competence” – What Does That Mean Exactly? | Emma’s Hope Book

My choice is my own
My body, my own
Opinion is my own
I own it, I own it
I don't want unsolicited advice
I might succeed, I might get in strife
But my choice is my own
My voice, my own
My life is my own
I own it, I own it

I can make my own choices
I ignore all the voices
Life has layers, it's lawless
Ah, stuff ya

--Choices by Amyl and the Sniffers

Stop Playing Games: “I Just Didn’t Know That You Had to Play Social Games with Doctors”

Lydia later clarified that her experience was more complicated than just having been forced to deal with bad or mean doctors. It can be challenging for autistic people to communicate with their doctors successfully in a system that’s built with neurotypical patients in mind. She said that while her symptoms didn’t contradict each other, they appeared to be disconnected. Furthermore, Lydia’s sensory issues made it hard for her to articulate how she felt and communication disorders made it hard to explain what she felt. Once she had more testing, everything began to make sense.

“My doctors did misunderstand my behavior, but I’m sure I was missing social cues that they were doubting me,” she said. “They knew I was autistic, so for me, the idea that my autistic traits could affect my medical care in that way wasn’t even a consideration.”

Nowadays, when Lydia goes to the hospital, Brisky often goes with her, and the two work together to best accommodate Lydia’s needs (things like going to a quiet, dark place rather than a regular waiting room). This reduces sensory overload and can also help with her erythromelalgia to some extent, since her symptoms make it harder for her to answer questions or handle being touched. Sometimes, Lydia can just look at her mom, and Brisky will know what to say.

In the case of the health-care system, autistic patients and their families must advocate for themselves, and individual doctors might not be empathetic to their needs. We should demand that doctors’ offices and hospitals be built with autistic people in mind.

Doctors’ misconceptions about autistic people can have severe, life-threatening consequences. The National Council on Disability released a study in 2019 that chronicled the experiences of Paul Corby, who is autistic and has psychiatric disabilities. When his mother, Karen, reported Paul’s worsening physical condition, which included “vomiting, chest pains, and a persistent cough,” doctors attributed those symptoms to anxiety and failed to evaluate his heart. Paul’s mother said he was denied proper treatment because he carried a doll for comfort and failed to name all nineteen medications he took.

We’re Not Broken: Changing the Autism Conversation

Shave Your Pride: There Is a Systematic Power Dynamic That Exists Between Disabled People and Doctors

I play trick or treat in the hospital halls
Pink and pastel blue, I'm bouncing off the walls
I'd like to calculate every swollen bone
But I'm strapped inside myself countless hours alone

It's blind men, diseased
Pills and scripts, they push me

Towards, telephones, call anyone with hope
Of sculpting life as it was
They strip to check my broken neck, I'm doped
Do they think it's a trick
That I pull when I'm sick

But I swear to you, it's true
Yes I swear to you, it's true
Yes I swear to you, it's true
Yes I swear to you, it's true

Swim through the afterbirth, while giant veins offend
I'm stretching the skin, till it splits
They strip to check my broken neck, I'm doped
Desert flower, golden hour, stepping in, pools of blood

Put your hand
On my chest
Hold your breath
Broken neck
But I swear to you
It's true

I want some kind of miracle
To split, separate
The addict and the parasite
My abstract creates
And I know you will appreciate me in any way
But the pathosis it strips my bones
Just for the holidays

--Broken Neck by Screaming Females

Stop Stigmatizing Addiction

I wrestle with a number of routine judgments and trials
They’re counting days til I’ll be dead, or change my style
Assumptions made by strangers every day
Like they’ve read my files
Laymen relate with jokes they make
The catch to my laughter’s I’m forcing a smile

Wasn’t my plan today
But go ahead and laugh away

I’ll reach for the peak of it all maybe you’ll see more to me
Wave a space in the sky, help your satellites find decency
Sail face to the wind, break conditions you’ve placed so hastily
My beauty does not fit into your box, so stop trying to make it please.

It’s the curse of pioneers, but I know I got a good thing going here
It’s the curse of pioneers
But I know I got a good thing going

And I’m doing Better, every day
Because of those of you who stay aware
That we’re as great as we make
And not all differences need to be so explained

--The Curse by Solillaquists of Sound

Don’t Shame and Psychopathologize Hopelessness

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.

Source: Hopeless But Not Broken: From George Carlin to Adderall Protest Music

Y'know sometimes, sometimes I feel so tired
I can't eat I can't sleep
So tired
The pressure builds and builds
Seems like there's no release
The things I see go unnoticed by some
But fill my eyes with horror
Anger, and guilt, and frustration, and depression
Makes waking up every day harder and harder

Life's been swell now I want to die
My body, it hurts me, sigh after sigh
I call it torture, you call it life
A slave to money and everything I despise
Like everyone in general
Fuck, eat, sleep, destroy
Just about the only things you fucking enjoy
I am a disposable being who will fuck all life
I multiply and the air gets thinner and dirty
I take up space, I smell, I consume
But I produce nothing, I abuse
I have no reason to exist
The toilet's clogged in this world of shit

I breathe filth everyday
Living fucks up my brain
Why? Why did I wake up today?
My eyes are heavy
Why? Why must I see this face?
Your life is ugly
Why? Why must I buy these things?
I don't want them
Tension. Tension
Frustration. Alone
Tension. Despair. Tension
All these pressures on my life

--Stress Builds Character by Dystopia

Take an Individualized, Collaborative, Trauma-Informed Approach

Despite increased spending on mental health treatment, mental illness disability and suicide rates have skyrocketed. “Perhaps more disturbingly,” notes clinical psychologist Noël Hunter, “recent evidence has demonstrated that as contact with psychiatric intervention increases, so too does completed suicide, suggesting the possibility that the current mental health system may be creating the very problems it purports to aid.” In Hunter’s recently published Trauma and Madness in Mental Health Services (Palgrave Macmillan, 2018), she asks, “Are we continuing to funnel money into a fundamentally broken system?”

Far fewer on the Left recognize that the psychiatric- industrial complex (which includes the American Psychiatric Association and its Big Pharma financial partners) is also devoted only to its own preservation and expansion, thus routinely exacerbating emotional suffering-this despite many individual practitioners who want to help their patients.

Hunter is a rare psychologist. She not only has extensive knowledge of the empirical research, but she herself was once diagnosed with serious mental illness, and she takes very seriously the insights of “experts by experience”-recovered ex-patients-who Hunter quotes throughout her book. Both objective and subjective sources make clear to Hunter that the essential cause for what is called serious mental illness is not some kind of biochemical or genetic defect but some kind of trauma, and that the essential remedy is healing from trauma. For critical thinkers who are not mental health professionals, Hunter’s assertions in Trauma and Madness in Mental Health Services may sound like simple common sense, but it is sense that is not common in the mental health profession.

In a scientific sense, terms like “schizophrenia” are completely meaningless-wastebaskets to toss people who are behaving in ways that appear bizarre to doctors. Often what causes people acting in unusual ways to become chronically dysfunctional are their doctors’ problematic reactions and “treatments.” In other words, it is common for the source of chronic dysfunction to be physician-induced (iatrogenic) trauma.

In the real world of psychiatric diagnoses, probably the most important criteria for whether you are diagnosed with schizophrenia or dissociative identify disorder (DID) is how much your doctor likes you, and Hunter was likable enough to get a DID diagnosis. For reasons of dogma, not science, trauma is taken seriously for DID but not for schizophrenia (in which one is simply seen as defective). So, Hunter considers herself relatively lucky, and one senses her “survival guilt.”

Professionals often waste their limited time obsessing over a diagnostic process that is scientifically invalid and unreliable. “Rather,” Hunter concludes, “what is more important is to take an individualized, collaborative, trauma-informed approach that is attuned to individual needs without making assumptions and considering the person’s subjective experiences as real and something to be respected.” It’s important, Hunter concludes, to help people find meaning and value in the adaptive nature of their atypical experiences.

Source: Politics and Psychiatry—Brave New Book on the Cost of the Trauma Cover-Up

Recognize That People Suffer for Reasons

Rather, the entirety of the mental health field and the paradigm under which it operates is a modern-day religion rife with all the familiar problems and benefits that exist in any religion. Most importantly, however, there is hope if people are willing to move beyond what society tells us we “must” do. People have been healing from great pain for 200,000 years—the mental health professions have existed for less than 200. While there are some things we have learned, we need to stop trying to re-invent the wheel. People need love, support, community, to be heard, to be valued, to be validated, to have purpose, to have health and housing, to have nutrition both physically and emotionally—it is not rocket science and doesn’t become such just because we keep saying that it is.

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.” In the book, I speak to the problem of language and how this insinuates differences that are not there, judgments, and assumptions that are untrue. 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.

If patients willingly adopt the role of defectiveness, then how is the doctor doing anything harmful or wrong? People who grew up as the scapegoat, who believe they are dirty or defective or bad, who are ashamed of their existence or believe they should be someone they are not, who have led their entire lives being marginalized and discriminated against in society-these are the people who most frequently enter mental health services. They are also those most readily vulnerable to accepting these messages under the guise of treatment and care. It is not until people are willing to start to consider that, in fact, they are not defective in the least, rather, that they are just flawed and unique human beings adapting to incredible pain that they can start to actually believe in themselves enough to heal.

Of course, there is simply the existential issue of mental health professionals that may be unbearable for them to face: If I am not fixing a distinct and identifiable problem, what, then, is my purpose? If the real healing power I have is something that any human being could ostensibly provide, if willing, why did I spend all those years in school and possibly hundreds of thousands of dollars? If these are not specific diseases related to specific biochemical or genetic flaws, why have I specialized-and who doesn’t like feeling special? And, worse, if I am not addressing people with genetic illnesses and biochemical problems, what, really, am I doing when all I have to offer are drugs and technological interventions?

This problem is not unique to mental health professionals. Medical doctors are caught in a similar dilemma when it comes to obesity, heart disease, diabetes, chronic inflammation, and many autoimmune diseases, even cancer. What do these doctors do when they realize that these problems are almost entirely due to an industrialized diet largely based on corporate interests-the sugar industry, soy bean manufacturers, Monsanto-and that if people just ate the way humans are designed to eat, these problems mostly would not exist? And, of course, these issues are entirely intertwined with mental health problems! If these are not specific diseases related to specific biochemical or genetic flaws, why have I specialized? If these problems are not really genetic illnesses and biochemically-based problems, what, really, am I doing when all I have to offer are drugs and technological interventions?

A black man spends his life being marginalized and aggressed, dismissed because of his fear and pain-should he enter the system, he is no longer “less-than” because of his blackness, now he’s marginalized and dismissed as “schizophrenic.” A sexually-abused young woman who was told she “wanted it,” was blamed, and was never given the opportunity to be angry enters the system-she now is “borderline” and once again blamed for being too sexualized, for causing staff to behave in shameful ways, and condemned for her anger, even when it is taken out on herself.

Perhaps more than any other, the most common enactment is that associated with the individual who grew up with a narcissistic parent in constant need of adulation, intolerant of discomfort or self-reflection, and who was a master in the art of gaslighting.

We live in a society that values stoicism, complete control over one’s behaviors, lack of emotional expression, “politeness” at the expense of authenticity-I love New York!-and an eerie Stepford Wife-like ideal of conformity. Mental health professionals often are selected for their ability to represent these values. Those troublemakers who tell the truth, are spontaneous(otherwise called “impulsive”), who laugh or find humor in the darkness(or “inappropriate affect”), who refuse to conform(or my favorite, “oppositional”) are ostracized and pathologized for the threat they pose to propriety. They generally don’t make it through the training process. I know I almost didn’t. It is the Anglo-Saxon way. It also is what makes most of us completely miserable.

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

Stop Damaging Anti-Authoritarian Patients

Anti-authoritarian patients should be especially concerned with psychiatrists and psychologists—even more so than with other doctors. While an authoritarian cardiothoracic surgeon may be an abusive jerk for a nursing staff, that surgeon can still effectively perform a necessary artery bypass for an anti-authoritarian patient. However, authoritarian psychiatrists and psychologists will always do damage to their anti-authoritarian patients.

Psychiatrists and psychologists are often unaware of the magnitude of their obedience, and so the anti-authoritarianism of their patients can create enormous anxiety and even shame for them with regard to their own excessive compliance. This anxiety and shame can fuel their psychopathologizing of any noncompliance that creates significant tension. Such tension includes an anti-authoritarian patient’s incensed reaction to illegitimate authority.

Anti-authoritarian helpers—far more commonly found in peer support—understand angry reactions to illegitimate authority, empathize with the pain fueling those reactions, and genuinely care about that pain. Having one’s behavior understood and pain cared about opens one up to dialogue as to how best to deal with one’s pain. Because anti-authoritarian mental health professionals are rare, angry anti-authoritarian patients will likely be “treated” by an authority who creates even more pain, which results in more self-destructiveness and violence.

It is certainly no accident that anti-authoritarian psychiatrists and psychologists are rare. Mainstream psychiatry and psychology meet the needs of the ruling power structure by pathologizing anger and depoliticizing malaise so as to maintain the status quo. In contrast, anti-authoritarians model and validate resisting illegitimate authority, and so anti-authoritarian professionals—be they teachers, clergy, psychiatrists, or psychologists—are not viewed kindly by the ruling power structure.

Source: “Don’t Be Stupid, Be a Smarty”: Why Anti-Authoritarian Doctors Are So Rare

Understand HIPAA

I do not use patient portals for messages. Getting providers to use email though is like pulling teeth. They’ve all been sold the line by medical records companies that portals are the only “secure” way to send messages. And while some portals may have encryption to help with privacy and security, some personal email accounts also have a feature to encrypt (the provider’s email should already be encrypted or they are running dangerously close to more HIPAA problems). You can read the letter I give my doctors on using email here.

Source: Common HIPAA Issues | Health as a Human Right