The chilled air in the place seemed filled with unease. Clean, sterile, with “handlers” at every carefully-monitored corner of the place. Doors locking in neat rhythm as any cries of the patients behind them went unheard by the visitors.
The Dad I accompanied to visit his son seemed to radiate anger, frustration, or perhaps steep mountains of weariness. Maybe all of it. Looking back, I remember one particular thing he said which seems to stick out in my mind. He said it as he leaned against the metal railing outside of the psychiatric care facility visiting room, seemingly ready to collapse;
“My son is not mentally ill, he’s autistic.”
Later, sitting in a hard plastic chair next to him, I looked over at the “patient”, who was in his third day of a forced stay at the psychiatric facility. The young man looked exhausted, unbathed, and sat with his eyes brimming over with tears. A look of shocked disbelief– surprise– swam in the depths of his eyes. He kept repeating, in a variety of ways, I just want to go home.
The police officers in the small town where he lives had encountered him in a disagreement with his Mom at a convenience store, and the situation had quickly escalated into him being put into handcuffs and a trip to admissions at the behavioral facility over strong protestations from her.
Even if the young man’s Mother had been able to articulate his unique neurology, as an autistic person, someone with sensory processing issues, the momentum of the Autistic-Person-Meets-the-Riptide-of-Mental-Health-Misunderstanding was going to carry him away regardless. The handcuffs bit into his wrists, he went into the back of the car’s cage, and he was pulled out haplessly on the current and into the Sea of Misunderstanding.
Given medications and a small, shared room with another man, he curled into a corner underneath the irritation of buzzing fluorescent lighting overhead. Alone, without any counsel, he was asked repeatedly from multiple persons if he felt like killing himself or harming others. His answer? He told them whatever he thought they wanted to hear, as long as he thought they would let him go back to the quiet sensory-safety zone of his small apartment.
Finally, after several legal threats, complaints, the expiration of the imposed “watch,” and most importantly-– the end of the insurance payments to the facility were over, he was released. No explanations and no apologies were given to anyone.
In the context of our work with autistic persons, this narrative is a very familiar one, having been played out like a badly scripted play relentlessly acted out for autistic persons and their families. In fact, nearly every person, every family we serve has some version of the same sad story. And this worn-out, grim interaction between autistic persons and the mental health industry has been playing over decades to a mostly silent cultural audience.
While it is understood autistic persons, just like their neurotypical population counterparts, experience mental health challenges, they seem to be particularly susceptible to quickly falling into a mental health machination that is both ill-equipped to understand them, and one which– according to autistic persons and their families– treats them quite badly.
Buried underneath explanations of simply “protecting patient” privacy needs, blaming HIPAA (Health Insurance Portability and Accountability Act of 1996), flaccid reporting, and the reluctance of those who could stand in the gap for autistic persons but would rather avoid the stigma of doing so– the resultant obfuscation is an ongoing train wreck between autistic persons and the ignorance of those who should know better.
How many autistic persons are admitted to mental health facilities in the United States alone each year? The truth of the matter is we just don’t know. Even a dated report from the federal Agency for Healthcare Research and Quality (US Department of Health and Human Services) points to a vague number of around 30,000 persons diagnosed with Autism Spectrum Condition (ASC) being admitted in 2014.
So, what we’re left with is a lot of empirical evidence based on weaving together the vast numbers of stories from autistic persons and their families about the collisions they experience with the mental health industry.
From my own perspective, as Dad to three diagnosed autistic persons, I can personally speak to unnecessary, wasteful interactions with law enforcement officials, mental health “experts,” and others who comprise the inner mechanism of the machination, continually putting autistic persons in facilities whether or not they actually belong locked up.
I have wept bitter tears over the careless treatment, the physical abuse of my own children inside these places of “care.”
Given the current cultural climate, is it even possible to come to an understanding of autistic persons, who may or may not have mental health challenges (just like the rest of humanity) in light of the deep systemic failures of the mental health system?
That depends on where you look for answers. Will the mental health “system” correct its own course, reject community-damaging complicity, and turn down untold millions of dollars from insurance companies who pay them for admitting autistic persons into the system? Highly doubtful. So then, from where will real systemic change come?
A grassroots movement is now underway, one which may provide much of the needed pressure for systemic overhaul, particularly in light of mistreatment of autistic persons who fall into the web of the system. While in rough form at the moment, the Neurodiversity Movement holds promise to be an instrument for cultural transformation in the way we view each other, in the way we recognize the unique functioning of how other person’s minds function.
Autistic persons have always populated the landscape of human existence, and while many have been woefully misunderstood and mistreated, they have also been wonderful friends, family, and inspirations to many when treated with understanding, respect.
As a culture, we are delinquently past due to begin the conversation into the acceptance of neurodiversity, rewriting the narrative of our understanding of mental health issues and taking an honest, hard look in the mirror of our own preconceived notions of what it means to be a human person.
In Lewis Carroll’s Alice in Wonderland, young Alice desperately wanted the golden key which would unlock the enchanted door, opening to a new world of adventure. Like Alice, many autistic persons today cannot reach the key, and short of a magical potion appearing, need the help of their fellow human beings to reach it.
Will you help autistic persons reach it?
Will you help grow the understanding of what it means to be fully human?
The key is near.
by J. David Hall, Life Guides for Autism | NeuroGuides (2018)
Passionately focused on guiding neurodivergent persons to discover their strengths, gifts and enjoy meaningful lives. A relentless optimist, an encourager who is out to build up individuals, to better communities one great relationship at a time.
- State of Dis-Union: The NeuroDiversity Movement At A Crossroads And Why It Should Matter To Everyone - April 21, 2021
- An Unwanted Hill to Climb: The Challenges Autistic Adults Face in Social and Occupational Settings - October 10, 2020
- In Our Autistic Eyes - August 18, 2019
6 Responses
I live in the UK and am recently retired from a decade or so of working with autistic young adults educationally. Your narrative on a USA circumstance is very credible, and speaks of something dreadful which is more a risk than an actuality in the UK. We still have a national government funded welfare system.
When working in a residential school, competition for placements and associated cash-flow, saw us take into our community young adults the meeting of whose needs was very challenging (something the school failed at in practice). Empathising with and advocating for these young people as it became evident that we could not meet their needs (the school grimly hanging on to the placements for the money), provided rich empirical experience of the intersection between the autistic and psychological well-being (and its opposite) in these individuals.
Long story short, I came to the understanding that psychological well-being issues arose for autistically characterised individuals, because of the systemic misunderstanding you speak of, because of a collective approach to autistically developing individuals that failed to see their occurrence and developmental needs met.
For myself, speaking into a professional setting from the point of view of presenting myself as autistic and an advocate for the autistic, I came up against experiences in my professional life, where my capacity to sustain self and agency and all the rest of psychological well-being, was fundamentally and comprehensively put at risk by how others experienced me and reacted to me in simply being autistic in what I had to say. I was able to use this experience to augment understanding of and empathy with the young people I supported.
My sense is that the neurodiversity frame of reference is still marginal in the UK. There’s something about how things work here, that hijacks the frame and rather weakens its import. What your piece evokes cognitively and imaginationally and emotionally about the neurodiversity frame, isn’t had as often in the UK as would be good.
I don’t just like this comment, I love it.
I disapprove of the urealistic optimism of the article, but thank you for it. It honestly DOES NOT MATTER how articulately or how patiently our how thoroughly we explain ourselves to NTs, OVER AND OVER AND OVER AGAIN. There is no point explaining ourselves to people who only fail to understand us because *they do not want to understand, they only want to feel “liked”and “needed” and “validated” and “special” and “important” *. Their inability to understsnd us is not a failure of comprehension, merely willful ignorance and their willful refusal to acknowledge any understanding of anything that doesn’t immediately and exclusively benefit themselves. Most of the mental healthcare field’s brutality toward autistic adults is not merely an unfortunate misunderstanding; it is, by design, intended to be hostile and punitive toward “unlikable” personalities.
*IT’S NOT A BUG, IT’S A FEATURE.*
Feigned ignorance and “lack of comprehension” is the oldest and most reliable trick in the Neurotypical Manual Of Perpetual FuckWithNess, and I am so so tired of watching autistics allow themselves to be so mercilessly fucked with. THE REASON NT THERAPISTS “CAN’T UNDERSTAND” US IS SIMPLE; THEY ARE NOT TRYING TO UNDERSTAND US BECAUSE ADMITTING THEY UNDERSTAND US IS INCONVENIENT AND INCOMPATIBLE WITH THE SOCIETAL POISON KNOWN AS “POSITIVE PSYCHOLOGY”.
It’s a thing, and it’s bullshit, don’t take my word for it, Google that sheeeit!
I ended up placing myself in the mental heathcare system when I realized I could no longer work. I avoided it for as long as I possibly could, I spent many years doing horrible things to survive, just to avoid it. I am now considered disabled and it isthe worst mistake I ever made. I will never have to “work” again, but I am now at the absolute mercy of a corrupt system full of corrupt people and my 24/7 “job” is to kiss those peoples’ asses and keep them happy while remaining a steady stream of revenue for their “care” programs by being “mentally incompetent”. Any timeI make the mistake of advocating for myself or saying a cussword aloud or just having an enthusiastic conversation, I am punished with notes describing me as “incoherent”, “aggressive”, “dangerous”, “frightening”.
They know it is especially cruel to keep labeling me “incoherent” because I am actually quite articulate (perfect score on the SAT Verbal so it is not my opinion that I am a competent speaker of English, it is an objective and indisputable FACT, motherfuckers!). Part of their torture routine is to just keep telling me I’m being incoherent and they can’t understand me, no matter what I say. It has resulted in some pretty shocking instances of medical and psychiatric abuse, and they know they can get away with anything, because nobody will believe me if I report it; I’m just being my usual, incoherent-nuisance self.
Also “therapists” in the low-income health sector are EXTREMELY hostile to a diagnosisof autism because they fear large disability payouts, but FUCK THEM, PAY ME!
THEY are the assholes who created a society so inherently dishonest that it is impossible for rational people to exist, so *FUCK THEM, PAY ME.*
Shopping is my only comfort. I only keep from killing myself by remembering that these motherfuckers HAAAAAAATE watching me spend their money. WELL IT’S *MY MONEY* NOW, BITCHES, and I need to stay alive and keep spending it as long as I can. FUCK THEM, PAY ME.
Sincerely,
Typo McFatfinger, esq.
Also, in case any intellectually-curious types are reading this, Positive Psychology is rooted in Animal Torture and unethical psychology studies on mind control conducted by the US govt.
SPOILER ALERT: there is nothing “positive” about it, the prick who coined the term was just being ironic to fuck with peoples’ heads, like Newspeak in 1984.
… See, I have plenty of time for thinking about this kind of shit because my only full time job is *SPENDING THOSE MOTHERFUCKERS’ MONEEEEEEEEEY!!!*
Ha ha just kidding, not really, it’s 24/7 stress and not worth the cash, but fuckthempayme!
I want to make a parody nerdcore rap-video of autistics bragging and flashing “neetbux” disability money, but all 1’s instead of hundreds because it’s not much money, how we pimped Uncle Sam and make him pay us like a ho, because we’re too annoying to hold a job… getting all excited about how we can afford to buy one new videogame a month because the rest of our budget s obligated to Dominos pizza delivery because we’re afraid to leave the house and people bully us for our weird autistic gait when we do…
Also, First paragraph of the article:
If the facility the young man ended up in was “clean and sterile”, he must have an unbelievably good insurance plan. Mostly we just usually wind up in public healthcare places that are overflowing with infectious human waste, staffed by individuals who seem to take pride in violating Universal Precautions against nosocomial infections. Watch the patients (inmates), when their sleeves or pants hike up, you can see the sores, and flesh rotting off their bones.