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 listen to us.
- I had to fight every single day to be heard and understood and to get better care.
- Autism Friendly General Practice
- Our Entire Medical System From the Rooter to the Tooter Is Eugenics
- Get a Dose of Social Science
- Respect Patient Expertise
- Embrace Patient Autonomy
- Presume Competence
- Stop Playing Games: “I Just Didn’t Know That You Had to Play Social Games with Doctors”
- Shave Your Pride: There Is a Systematic Power Dynamic That Exists Between Disabled People and Doctors
- Stop Stigmatizing Addiction
- Don’t Shame and Psychopathologize Hopelessness
- Take an Individualized, Collaborative, Trauma-Informed Approach
- Recognize That People Suffer for Reasons
- Stop Damaging Anti-Authoritarian Patients
- Understand HIPAA
- We Need Human-Centered Healthcare
I had to fight every single day to be heard and understood and to get better care.
I remember laying there, remembering that this experience I’m having is like the other times that I almost died.
And I can feel my life slipping away.
Is it worth it for me to call out and have someone save me?
That’s how traumatized that I’ve been by being in hospitals and in medical settings.
And I need for doctors and healthcare professionals to understand that many of us are traumatized like that.
It’s not abnormal for people like myself who have chronic illnesses, who have cancer, and have high touch and high interactions with medical professionals, to feel traumatized, to feel, is it worth it for me to go and get help for this experience that I’m having, for the possibility that something major is wrong?
Because for some of us waiting to see is worth the risk of possibly dying.
That’s how much we are no longer emotionally prepared to go to the hospital.
That’s how bad a physical experience it is for some of us.Tinu Abayomi-Paul – YouTube
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
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
Some key findings from our recent study of barriers to healthcare access & self-reported adverse outcomes for #ActuallyAutistic people.
Autistic patients 2x more likely to die as an inpatient after emergency admission compared to neurotypical patients Late presentation, diagnostic overshadowing, missed diagnoses…
“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
The instant, almost the very instant, you become disabled, you cease to be seen as a reliable narrator of your own story to literally everybody else, except for disabled people.
Every single ableist stereotype that you’ve heard for your entire life that you’ve never evaluated, that will be the lens through which other people see you, including people that know you.
This is one of the many reasons why people need to do anti-ableism work. Because every single thing you hate about us, you will hate about yourself. And becoming us is a lot easier than you think it is.Imani Barbarin, MAGC | Crutches&Spice
Our entire medical system from the rooter to the tooter is eugenicsImani Barbarin on Instagram: “The sad part is…I’m not even a little bit wrong. #ushealthcare #childfree #disability”
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
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.Autism research needs a dose of social science | Spectrum | Autism Research News
Disrupting Dis/abilization: A Critical Exploration of Research Methods to Combat White Supremacy and Ableism in Education
Respect Patient Expertise
Embrace Patient Autonomy
“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 time, though, she was kept in the hospital for nine days, feeling increasingly ignored and disrespected by the medical staff. She says they treated her as if she was faking her illness and kept demanding psychiatric evaluations rather than addressing her physical problems. Eventually, she figured out why: A hospital doctor had learned that she was autistic and had written on her chart that she probably had “mental retardation.”When Hospitals Mistreat Disabled Patients – Pacific Standard
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 faced another obstacle—she said she had a primary care physician who doubted the severity of her illness. “She concluded that I was creating my symptoms to get attention, but I didn’t realize I was giving her that impression,” Lydia told me. Ironically, Lydia might not have been taken seriously because, as an autistic person, she was trying to follow the cues that neurotypical people gave her. “People always told me to stay positive, and I took that at face value.” Wayman was also told she was “too happy to be sick.” (In an almost cruel twist, once Wayman was in the nursing home and under supervision, it was clear she wasn’t faking anything.)
Subsequently, her physician contacted her gastrointestinal doctor to warn him that Lydia was obsessed with getting sick; she said Lydia knew too much medical information.
“For me, knowledge was a way to cope with the fear and uncertainty my doctors didn’t believe I was feeling,” she said.
To be disabled, chronically ill, or autistic is to be constantly aware of your mind and your body and how the world limits them. Because of a lack of understanding from doctors, knowledge becomes a protective shield. Lydia said other autistic people she knows, including two of her best friends, have developed chronic medical conditions and agree that knowledge is the best way to protect themselves.We’re Not Broken: Changing the Autism Conversation
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.
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 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.
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.
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.
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.
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.
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.
Stop Damaging Anti-Authoritarian Patients
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.
We Need Human-Centered Healthcare
We need to reframe what we problematize. We need real empathy and understanding for autistic people. We need autistic-informed policy education. We need relief from sensory overload. We need human-centered healthcare.