The irony of turning schools into therapeutic institutions when they generate so much stress and anxiety seems lost on policy-makers who express concern about children’s mental health.
We resist, strongly, the idea that stress is best acted on at an individual, case-by-case level. This is a structural problem that can be changed with sufficient political will to change it, and we believe in fighting for that change.
We know that marketisation, casualisation and other workplace inequalities are key factors in stress levels among our members. We know that declining real terms pay and increased workloads are a factor. We believe that the higher education sector as a whole is systemically under-investing in staff, with knock-on impacts for all of us, and we don’t believe that this is anything other than a response to a political climate that has privileged metrics and rankings over human beings.
Why are there greater mental health stresses on autistic people from gender-minority groups? To quote from the research paper,
“The increased rates of mental health problems in these minority populations are often a consequence of the stigma and marginalisation attached to living outside mainstream sociocultural norms (Meyer 2003). This stigma can lead to what Meyer (2003) refers to as ‘minority stress’. This stress could come from external adverse events, which among other forms of victimization could include verbal abuse, acts of violence, sexual assault by a known or unknown person, reduced opportunities for employment and medical care, and harassment from persons in positions of authority (Sandfort et al. 2007).”
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.
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.
One day when my husband dropped him off, he heard a little girl stand up to a naysayer and shout, “Boys can like beautiful things, too!”
But they can’t. Not without someone looking askance. To embrace anything feminine, if you’re not biologically female, causes discomfort and confusion, because throughout most of history and in most parts of the world, being a woman has been a disadvantage. Why would a boy, born into all the power of maleness, reach outside his privileged domain? It doesn’t compute.
To carve out a masculine identity requires whittling away everything that falls outside the norms of boyhood. At the earliest ages, it’s about external signifiers like favorite colors, TV shows, and clothes. But later, the paring knife cuts away intimate friendships, emotional range, and open communication.
There’s research connecting this shedding process to the development, in some adolescent boys, of depression, anxiety, and feelings of isolation. In her 2014 documentary The Mask You Live In, the filmmaker Jennifer Siebel Newsom features the voices of dozens of teen boys describing their progression from childhoods rich with friendships to teen years defined by posturing and pressure to prove their manhood. Some of the boys, who present tough exteriors, admit to having suicidal thoughts. The film flashes news clips from the most notable mass shootings of that time—Virginia Tech, Aurora, Sandy Hook—each committed by a young man.
When I first heard the term liberation theology (in opposition to a theology that fosters compliance with the status quo), I thought there should also be a liberation psychology—a psychology that doesn’t equate a lack of adjustment with mental illness, but instead promotes constructive rebellion against dehumanizing institutions, and which also provides strategies to build a genuinely democratic society.
liberation psychology is about looking at the world from the point of view of the dominated instead of the dominators.
Whether they realize it or not, mental health professionals who narrowly treat their clients in a way that encourages compliance with the status quo are acting politically. Similarly, validating a client’s challenging of these undemocratic hierarchical modes is also a political act. I believe that mental health professionals have an obligation to recognize the broader issues that form a context for their clients’ mental well-being, and to be honest with their clientele about which side of this issue they are on.
A minority of the anti-authoritarian kids I have worked with are aware of anarchism and identify themselves as anarchists, perhaps having T-shirts with a circle drawn around an A. However, even among those adolescents who know nothing of the political significance of the term anarchism, I cannot remember one who didn’t become excited to discover that there is an actual political ideology that encompasses their point of view. They immediately became more whole after they discovered that answering “yes” to the following questions does not mean that they suffer from a mental disorder but that they have a certain political philosophy:
- Do you hate coercion? Do you love freedom?
- Are you willing to risk punishments to gain freedom?
- Do you distrust large, impersonal, and distant authorities?
- Do you reject centralized authority and believe in participatory democracy?
- Do you hate powerful bigness of any kind?
- Do you hate laws and rules that benefit the people at the top and make life miserable for people at the bottom?
Source: Toward a Liberation Psychology
Why should this effect prove so helpful to the depressed, addicted, and anxious? As Pollan explains it, these disorders are the result of mental and emotional “grooves” in our thinking that have become, as the DMN’s name suggests, default. We are how we think. The right psychedelic experience can level out the grooves, enabling a person to make new cerebral connections and briefly escape from “a rigidity in our thinking that is psychologically destructive.”
Although people are often pathologized and shamed for feeling hopeless, hopelessness is sometimes a natural reaction to an oppressive political climate. George Carlin and other artists show how embracing hopelessness can serve as motivation to create social change.
“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.”