Diversity & Inclusion Recap #1

Selections from my past few weeks of continuous D&I learning and writing.

Design for Humanity

I’m a big fan of Design for Real Life. Author Eric Meyer now has a Design for Humanity course.

Designing for humans is tough. We design for millions, but every interaction between our work and a user is personal, and we aren’t taught to take care with those interactions. I created this course because I want everything we design to meet the real needs and wants of real people.

If you want a set of tools for stress-testing your work to make sure it’s as human-centered, compassionate, and inclusive as possible, this is the course for you. I’ll show you how to approach designing for your users, and I’ll provide a set of tools and processes to stress-test your design work to make sure it’s as human-centered, compassionate, and inclusive as possible.

Source: Design for Humanity: A New Perspective on User Experience | Udemy

Harm reduction

I’m autistic with chronic, neuropathic pain. Cannabis and harm reduction are important and very personal topics to me.

The drug war’s perverse notions of addiction, addicts, and coping limit our vocabulary, stifle our empathy, and harm us all-especially those with neurodivergent operating systems and those enduring poverty and structural racism and ableism.

Through compassion, the social model, and respect for neurodiversity and structural disadvantages, we can improve our views of addiction.

Source: Harm reduction, addiction, tough love, 12 steps, neurodiversity, and the troubled-teen industry – Ryan Boren

Survivorship Bias and Harassment

Thread on survivorship bias in tech.

Survivorship bias, or survival bias, is the logical error of concentrating on the people or things that “survived” some process and inadvertently overlooking those that did not because of their lack of visibility.

Source: Survivorship bias – Wikipedia

Autism disclosure and professional life

But I’ve found that a potentially “safe” way to broach the topic is by way of bringing up “sensory sensitivity” and “sensory processing” terminology first. After all, people who don’t know they’re on the spectrum assume they’re neurotypical, and certain terminology is more palatable for them than other terminology. Sensory issues tend to be much more agreeable terms in the neurotypical world.

I then began to list characteristics, asking them in the form of questions, to all of which the person nodded, with increasing vigor with each subsequent question. Eventually, the person and their partner actually laughed and high-fived each other as if to say, “finally! Somebody gets it!” (And this person is not one who had been likely to laugh or high-five anyone, especially in front of a healthcare professional.)

I played a tennis match of yes-no in my brain. I hadn’t yet mentioned the terms Asperger’s or autism yet; should I, or shouldn’t I? After much internal back-and-forth I finally thought, “screw it; bring it up.”

So then came the magical question: “what do you know about Asperger’s/autism?”

And the dialogue proceeded from there, as I listened carefully to their answer and clarified the truths, gently adjusting their previously-held notions (which weren’t entirely negative). Then I listed off more characteristics in plain, everyday language, also to which they nodded enthusiastically.

I mentioned that a lot of us get misdiagnosed with what I call the “Usual 5” (and there may be others): depression, anxiety, ADHD, bipolar, and OCD, before we realize that we’re actually Aspergian/autistic, and that the spectrum condition actually explains all of the others, negating and replacing those other labels, which had been reluctantly accepted but never fully embraced, because they didn’t seem to fit.

I stated clearly that my “theory” about what was going on with this person was not, in fact, a diagnosis, but simply the former: a theory, an idea. Nothing more. And I added that if they wanted to investigate this further, that I recommended the following steps:

  1. Start with the self-quizzes; they’re not diagnostic, but they ask simple yes/no questions, and provide a quick, easy, no-cost starting point to see if the subject was even worth pursuing further
  2. Based on the score, then they can do several things, one of which is to search for blogs written by Aspergian/autistic adults, especially ones of their same gender, to see if what they say resonates with them
  3. Either instead of or immediately after reading the blogs, they can search for the positive attributes of Asperger’s/autism; knowing this person, going straight for the diagnostic criteria first might cause anxiety or depression, with all of the “impairments” and “difficulties” and “restricted” this and “insufficient” that. If interested, go for the happy stuff first.
  4. At any point, if they’d like to pursue an official evaluation, I know just the right specialists, and I’m more than happy to make the referrals.

Source: Professional Asperger’s / autism disclosure is almost always tricky for me – the silent wave

Desistence, Gender Dysphoria, and Neurodiversity

Thread on desistence and gender dysphoria.

I updated Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity with selections from an article warning against “blaming” trans identity on autism. Respect intersectional identity.

To blame trans identities on autism is to say that autistic people cannot understand or be aware of their own gender. If an autistic person cannot know they are trans, how can they know they aren’t? How can they know anything about themselves?

When a person’s gender is doubted because they are autistic, this paves the way for removing autistic people’s agency in all kinds of other ways. If we can’t know this central aspect of our identity, we surely can’t know how we feel, what we like, or who we are. In short, it implies that we are not truly people, and that our existence, experiences, and identities are for other people to define. This is just another facet of dehumanising autistic people, and gender is certainly not the only area in which this happens.

In itself, the very urge to find a ‘reason’ that someone is transgender is a result of believing that being transgender is a problem, and that it would always be better not to be. The fact that clinicians like Zucker are focused on why someone is transgender, instead of focusing on what kind of help they need and how to best provide it, demonstrates clearly the belief that it is fundamentally bad to be transgender.

Not only that, but the belief that it’s even theoretically possible for anyone besides the individual in question to know what someone’s gender is. That’s just not how gender works! No-one really understand what gender is, or what it means, or where it comes from. The only thing we know for sure is that it’s internal, subjective, and personal. You can’t prove or test someone else’s gender any more than you can prove or test their favourite colour. The idea that it can be tested is constantly used to invalidate trans people. Our genders are doubted or disbelieved if we fail to adequately ‘prove’ ourselves to everyone else – if we express too many or too few gender stereotypes, if we are too old or too young, if we claim to be nonbinary or our description of our identity is too complicated or confusing.

The best option is to allow someone to explore their feelings, support them in gaining self-understanding, and accept their identity whatever it turns out to be. It is not complicated, and it’s only scary if you are still holding onto the belief that being either autistic or transgender – or, perish the thought, both – is a terrible thing to be. Which it’s not. I am, along with countless others like me, living proof of that.

Source: Blaming trans identities on autism hurts everyone | autisticality

Ableist autism parents

This thread offers #ActuallyAutistic perspective on ableist autism parents.

And here’s an in joke.

Accessibility

Oh how we wish for good alt text flow on Twitter.

Calypso also needs to give some attention to alt text flow.

Algorithmic Bias

Companies and government institutions that use data need to pay attention to the unconscious and institutional biases that seep into their results. It doesn’t take active prejudice to produce skewed results in web searches, data-driven home loan decisions, or photo-recognition software. It just takes distorted data that no one notices and corrects for. Thus, as we begin to create artificial intelligence, we risk inserting racism and other prejudices into the code that will make decisions for years to come. As Laura Weidman Powers, founder of Code2040, which brings more African Americans and Latinos into tech, told me, “We are running the risk of seeding self-teaching AI with the discriminatory undertones of our society in ways that will be hard to rein in because of the often self-reinforcing nature of machine learning.”

Many people seem to believe that decisions made by computers are inherently neutral, but when Tay screeched “race war now!!!” into the Twitterverse, it should have illustrated to everyone the threat of algorithmic prejudice. Without careful consideration of the data, the code, the coders, and how we monitor what emerges from “deep learning,” our technology can be just as racist, sexist, and xenophobic as we are.

Source: Racist in the Machine

For more on algorithmic bias, algorithmic exclusion, and data ethics, see this collection of links.

Psychological Safety

Dig into project-based and self-directed learning, and you’ll find psychological safety. Dig into privilege, and find psychological safety. Dig into voice and choice, and find psychological safety. Dig into creative teams, Employee Resource Groups (ERGs), and Employee Networks, and find psychological safety.

Psychological safety is necessary to building creative, collaborative teams. We’re learning that in the industries I inhabit, and I see that same learning happening in the self-directed learning space. Students and workers don’t want to leave their real lives at home. They want to design for their real lives–in psychological safety.

I updated my post on Projects, Teams, and Psychological Safety with more resources, including a couple videos and quotes from a couple studies. Reflect on your career through the lens of psychological safety.

Performance terror. We’ve all known a classroom, meeting room or stage where we didn’t feel safe doing something we were quite capable of doing.

“As a college professor I encourage students to read their work aloud, but I never insist on it,” said Carey. “Sometimes those who are uncomfortable doing it will volunteer on their own because it’s their decision rather than mine.”

“I centered my instruction on the lives, histories and identities of my students. And I did all of this because I wanted my students to know that everyone around them was supporting them to be their best self,” said Simmons.

A supportive culture, sustained advisory relationships, and teaching strategies that create positive learning all promote psychological safety.

“Every child deserves an education that guarantees the safety to learn in the comfort of one’s own skin,” said Simmons.

Source: Psychological Safety: Key to Success at School and Work | Tom Vander Ark | Pulse | LinkedIn

Every child deserves an education that guarantees the safety to learn in the comfort of one’s own skin.

I centered my instruction on the lives, histories and identities of my students. And I did all of this because I wanted my students to know that everyone around them was supporting them to be their best self.

So while I could not control the instability of their homes, the uncertainty of their next meal, or the loud neighbors that kept them from sleep, I provided them with a loving classroom that made them feel proud of who they are, that made them know that they mattered.

There is a better way, one that doesn’t force kids of color into a double bind; a way for them to preserve their ties to their families, homes and communities; a way that teaches them to trust their instincts and to have faith in their own creative genius.

Source: Dena Simmons How students of color confront impostor syndrome – Ted Talk 2016 Ted com – YouTube

Further, Kahn argued that people are more likely to believe they will be given the benefit of the doubt—a defining characteristic of psychological safety—when relationships within a given group are characterized by trust and respect.

Source: Psychological Safety: The History, Renaissance, and Future of an Interpersonal Construct

Jonathan Mooney: “The Gift: LD/ADHD Reframed”

This fantastic talk is full of social model goodness. Highly recommended.

You don’t need somebody to fix you. You need somebody to fight for you, and with you.

The myth of normal is what’s broken.

Disability industrial complex is all about what people can’t do. We spend most of our time trying to fix what they can’t do. When all we do is fix people the message we give to them is that they are broken.

We have created a system that has you submit yourself, or your child, to patient hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.

Mooney’s books Learning Outside The Lines: Two Ivy League Students with Learning Disabilities and ADHD Give You the Tools for Academic Success and Educational Revolution and The Short Bus: A Journey Beyond Normal are in my reading queue.

Inspiration Porn

Speechless did a great job addressing inspiration porn. Props. I updated Inspiration Porn, Growth Mindset, and Deficit Ideology with clips from and discussion about the show.

ABC’s “Speechless,” a sitcom about a family with a son who has a disability, tackled why it’s often offensive to call people with disabilities “inspirational.” And it’s done so, so well.

“Inspiration porn” is a term used to describe a common tendency in which able-bodied people condescend to those with disabilities by suggesting they are brave or special just for living. Ray DiMeo, a character in “Speechless” who is the younger brother of a teen with cerebral palsy, explained it perfectly in Wednesday night’s episode:

“It’s a portrayal of people with disabilities as one-dimensional saints who only exist to warm the hearts and open the minds of able-bodied people,” he said.

To which his brother, JJ, who has cerebral palsy, hilariously adds: “I blame Tiny Tim.”

While these sorts of simplistic attitudes may seem harmless, if misguided, they can have real consequences in a world where disabilities are stigmatized. Research even shows stigma can lead to damaging health care consequences.

What’s more, these kinds of portrayals render the person who is disabled as a side character only revered for what they provide to others.

Source: ‘Speechless’ Just Schooled Everyone On Disability ‘Inspiration Porn’ | The Huffington Post

My Gimpy Life

While discussing Speechless and the social model, I recalled this great web series from a few years ago.

The awkward adventures of a driven actress (Teal Sherer) trying to navigate Hollywood in a wheelchair.

https://www.youtube.com/user/MyGimpyLife

Pipelines, Privilege Economy, Contingency Economy, Post-employment Economy

I updated The Pipeline Problem and the Meritocracy Myth with selections from Sarah Kendzior’s The View From Flyover Country regarding the privilege economy, contingency economy, post-employment economy, and unpaid internships. This structural, systems thinking is necessary to confronting injustice and exclusion.

Creativity – as an expression of originality, experimentation, innovation – is not a viable product. It has been priced out into irrelevance – both by the professionalization of the industries that claim it, and the soaring cost of entry to those professions.

Today, creative industries are structured to minimize the diversity of their participants – economically, racially and ideologically. Credentialism, not creativity, is the passport to entry.

“What the artist was pretending he didn’t know is that money is the passport to success,” she writes. “We may be free beings, but we are constrained by an economic system rigged against us. What ladders we have, are being yanked away. Some of us will succeed. The possibility of success is used to call the majority of people failures.”

But creative people should not fear failure. Creative people should fear the prescribed path to success – its narrowness, its specificity, its reliance on wealth and elite approval. When success is a stranglehold, true freedom is failure. The freedom to fail is the freedom to innovate, to experiment, to challenge.

To “succeed” is to embody the definition of contemporary success: sanctioned, sanitized, solvent.

To which the 30-something, having spent their adult life in an economy of stagnant wages and eroding opportunities, takes the 20-something aside, and explains that this is a maxim they, too, were told, but from which they never benefitted. They tell the 20-something what they already know: It is hard to plan for what is already gone. We live in the tunnel at the end of the light.

If you are 35 or younger – and quite often, older – the advice of the old economy does not apply to you. You live in the post-employment economy, where corporations have decided not to pay people. Profits are still high. The money is still there. But not for you. You will work without a pay rise, benefits, or job security. Survival is now a laudable aspiration.

In the post-employment economy, jobs are privileges, and the privileged have jobs.

Unpaid internships lock out millions of talented young people based on class alone. They send the message that work is not labor to be compensated with a living wage, but an act of charity to the powerful, who reward the unpaid worker with “exposure” and “experience”. The promotion of unpaid labor has already eroded opportunity – and quality – in fields like journalism and politics. A false meritocracy breeds mediocrity.

Education is a luxury the minimum wage worker cannot afford. This message is passed on to their children.

Young Americans seeking full-time employment tend to find their options limited to two paths: one of low-status, low-paying temp jobs emblematic of poverty; another of high-status, low-paying temp jobs emblematic of wealth. America is not only a nation of temporary employees – the Walmart worker on a fixed-day contract, the immigrant struggling for a day’s pay in a makeshift “temp town” – but of temporary jobs: intern , adjunct , fellow.

Post-recession America runs on a contingency economy based on prestige and privation. The great commonality is that few are paid enough to live instead of simply survive.

In the post-employment economy, full-time jobs are parceled into low-wage contract labor, entry-level jobs turn into internships, salaries are paid in exposure, and dignity succumbs to desperation.

The problem in America is not that there are no jobs. It is that jobs are not paying. America is becoming a nation of zero-opportunity employers, in which certain occupations are locked into a terrible pay rate for no valid reason, and certain groups – minorities, the poor, and increasingly, the middle class – are locked out of professions because they cannot buy their way in.

During the recession, American companies found an effective new way to boost profits. It was called “not paying people”. “Not paying people” tends to be justified in two ways: a fake crisis (“Unfortunately, we can’t afford to pay you at this time…”) or a false promise (“Working for nearly nothing now will get you a good job later”).

In reality, profits are soaring and poorly compensated labor tends to lead to more poorly compensated labor. Zero opportunity employers are refusing to pay people because they can get away with it. The social contract does not apply to contract workers – and in 2013, that is increasingly what Americans are.

American ideology has long tilted between individualism and Calvinism. What happened to you was either supposed to be in your control – the “pull yourself up by your bootstraps” approach – or divinely arbitrated. You either jumped, or you were meant to fall. Claims you were pushed, or you were born so far down you could not climb up, were dismissed as excuses of the lazy. This is the way many saw their world before it collapsed.

They cut and blame us when we bleed.

When people are expected to work unpaid for the promise of work, the advantage goes to those immune from the hustle: the owners over the renters, the salaried over the contingent. Attempts to ensure stability and independence for citizens – such as affordable healthcare – are decried as government “charity” while corporate charity is proffered as a substitute for a living wage.

Faust’s is an inspiring tale – and one beyond the comprehension of most young graduates in America today. “Don’t trust the boomers!” warned Paul Campos in a 2012 article on the misguided advice the elder generation peddles to their underemployed, debt-ridden progeny – including gems like “higher education is always worth the price” and “internships lead to jobs” – and Faust’s rebuke proves him right. What is most remarkable about Faust’s career is not its culmination in the Harvard presidency, but the system of accessibility and opportunity that allowed her to pursue it. Her life story is a eulogy for an America long since past.

Participation in these programs and internships is often dependent on personal wealth, resulting in a system of privilege that replicates itself over generations. McArdle compares America’s eroded meritocracy to imperial China, noting that “the people entering journalism, or finance, or consulting, or any other ‘elite’ profession, are increasingly the children of the children of those who rocketed to prosperity through the post-war education system. A window that opened is closing”.

Mobility is but a memory. “The life prospects of an American are more dependent on the income and education of his parents than in almost any other advanced country for which there is data,” writes economist Joseph E Stiglitz in an editorial aptly titled “Equal Opportunity, Our National Myth”.

This is not to say that hard-working elites do not deserve their success, but that the greatest barrier to entry in many professions is financial, not intellectual.

The “lifetime of citizenship, opportunity, growth and change” Drew Gilpin Faust extolled is something most Americans desire. But it is affordable only for a select few: the baby boomers who can buy their children opportunities as the system they created screws the rest.

While the start and end dates of the millennial generation are up for debate – and the idea of inherent generational traits is dubious – people of this age group share an important quality. They have no adult experience in a functional economy.

Millennials are chastised for leaning on elders, but the new rules of the economy demand it. Unpaid internships are often prerequisites to full-time jobs, and the ability to take them is based on money, not merit. Young adults who live off wealthy parents are the lucky few. They can envision a future because they can envision its purchase. Almost everyone else is locked out of the game.

It is one thing to discover, as an adult, that the rules have been rewritten, that the job market will not recover, that you will scramble to survive. It is another to raise a child knowing that no matter how hard they work, how talented they are, how big they dream, they will not have opportunities – because in the new economy, opportunities are bought, not earned. You know this, but you cannot tell this to a child. The millennial parent is always Santa, always a little bit of a liar.

The children of the millennials have been born into a United States of entrenched meritocracy – what Pierre Bourdieu called “the social alchemy that turns class privilege into merit”. Success is allegedly based on competition, not background, but one must be prepared to pay to play.

“This reliance on un- or underpaid labor is part of a broader move to a ‘privilege economy’ instead of a merit economy – where who you know and who pays your bills can be far more important than talent,” writes journalist Farai Chideya, noting that this system often locks out minorities.

By charging more for a year’s college tuition than the average median income, universities ensure that poor people stay poor while debt-ridden graduates join their ranks. By requiring unpaid internships, professions such as journalism ensure positions of influence will be filled only by those who can pay for them. The cycle of privilege and privation continues.

One after another, the occupations that shape American society are becoming impossible for all but the most elite to enter.

My father, the first person in his family to go to college, tries to tell me my degree has value. “Our family came here with nothing,” he says of my great-grandparents, who fled Poland a century ago. “Do you know how incredible it is that you did this, how proud they would be?” And my heart broke a little when he said that, because his illusion is so touching – so revealing of the values of his generation, and so alien to the experience of mine.

Source: The View From Flyover Country

Lean In and Deficit Ideology

Kendzior also writes about Lean In, which I’m working into a “Lean In and Deficit Ideology” post that will join my Structural Ideology > Deficit Ideology narrative.

The assumed divide between mothers who work inside and outside the home is presented as a war of priorities. But in an economy of high debt and sinking wages, nearly all mothers live on the edge. Choices made out of fear are not really choices. The illusion of choice is a way to blame mothers for an economic system rigged against them. There are no “mommy wars”, only money wars – and almost everyone is losing.

For the average married mother of small children, it is often cheaper to stay home – even if she would prefer to be in the workforce. It is hard to “lean in” when you are priced out.

Corporate feminists like Sheryl Sandberg frame female success as a matter of attitude. But it is really a matter of money – or the lack thereof. For all but the fortunate few, American motherhood is making sure you have enough lifeboats for your sinking ship. American motherhood is a cost-cutting, debt-dodging scramble somehow interpreted as a series of purposeful moves. American mothers are not “leaning in”. American mothers are not “opting out”. American mothers are barely hanging on.

Careers in this economy are not about choices. They are about structural constraints masquerading as choice. Being a mother is a structural constraint regardless of your economic position. Mothers pay a higher price in a collapsed economy, but that does not mean they should not demand change – both in institutions and perceptions.

The irony of American motherhood is that the politicians and corporations who hold power do have a choice in how they treat mothers and their children. Yet they act as if they are held hostage to intractable policies and market forces, excusing the incompetence and corporate malfeasance that drain our households dry. Mothers can emulate them and treat “choice” as an individual burden – or we can work together and push for accountability and reform. This option is not easy. But we are used to that.

Source: The View From Flyover Country

Autistic Burnout: The Cost of Coping and Passing

Being a “high-functioning” autistic or having high-functioning depression or anxiety means being doubted and having your identity questioned. Exhausting efforts to pass and mask are given little credit—sometimes tossed aside with an “I do that too”—and held against you in those moments of burnout when you can longer pass, mask, and cope. Ableist tropes regarding hidden disability are the reward for passing.

Autistic burnout, it permeates every area of your life.

Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible.

Being something that neurologically you are not is exhausting.

Source: Ask an Autistic #3 – What is Autistic Burnout? – YouTube

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy.

But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.

In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.

I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.

Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.

Source: ‘Autistic Burnout’ by Judy Endow, MSW

Regression can refer to a specific set of skills or abilities:

  • progressively losing the ability to speak

  • deteriorating executive function

  • reduced memory capacity

  • loss of self-care capabilities

  • loss of social skills

  • reduced ability to tolerate sensory or social overload

It can also refer to a general loss of the ability to cope with life or to accomplish all of the necessary daily tasks of living.

Often a period of autistic regression begins during or after puberty or during the transition to adulthood (late teens to early twenties). Mid-life is also a common time for autistic people to experience burnout or regression. In fact, many people (including me) list a noticeable change in their ability to cope with daily life as one of the reasons for seeking a diagnosis. However, autistic regression can happen at any age and is often preceded by a major life change or a period of increased stress.

A better analogy than regression is that of the demands of life exceeding a person’s resources.

Imagine a hot summer day in a city. Everyone turns on their fans and air conditioners to beat the afternoon heat, exceeding the ability of the power grid to supply power to all of the homes and businesses in the city. To cope, the electric company might implement a brownout–an intentional reduction of power to each building–or a series of rolling blackouts in which some locations get full power while others get none.

The autistic brain seems to work much the same way when faced with excess demands on resources. There are days or weeks or months when the demands of life are too great and our brains decide to implement a brownout or a rolling black out. Some coping skills or abilities are temporarily taken offline or run at reduced efficiency.

Many of the challenges that come with being autistic are pervasive, meaning they’re with us forever. Even if they aren’t active at all times, they still exist and may reappear when a particular coping strategy gets temporarily taken offline because the brain needs to reallocate resources for a more urgent task.

When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again.

In fact, nothing has been fixed or broken. We simply have very fluid coping strategies that need to be continuously tweaked and balanced. Because a child or adult goes through a period of having very few meltdowns, that doesn’t mean they’ll never have meltdowns again. If something in their life changes, for example the hormonal storms of puberty, they’ll need to develop new coping strategies. And until they do, they may begin having meltdowns due to the mental, emotional or sensory overload caused by the new development.

Being autistic means a lifetime of fluid adaptation. We get a handle on something, develop coping strategies, adapt and we’re good. If life changes, we many need some time to readapt. Find the new pattern. Figure out the rules. Test out strategies to see what works. In the mean time, other things may fall apart. We lose skills. We struggle to cope with things that had previously been doable under more predictable conditions. This is not regression to an earlier developmental stage, it’s a process of adapting to new challenges and it’s one that we do across a lifetime of being autistic.

Source: Autistic Regression and Fluid Adaptation | Musings of an Aspie

I’ve been thinking a lot about how my ability to mask and camouflage has really taken a nose-dive in the past years. I used to be better at this — or so I tend to think. Surely, there must be a reason — other than rank ignorance and denial — for why I’ve been under the autistic radar for so long… and why when I was younger and thought about “acting out” to get attention, my efforts were usually immediately curtailed by something inside me that says, “No – wait – don’t do that.”

I’ve had a sort of internal thermostat that’s regulated the “temperature” of my autistic tendencies, which modulated them in public.

But in the past years, I’ve noticed a sharp decline in my ability to mask and camouflage my markedly autistic behavior (in public, not privately).  And I realize I’m acting a helluva lot more autistic now, than I did in my earlier adulthood.

So, we pull inward more and more… and more and more… try to reach out more and more … more and more… and while the rest of the world is overlooking ignoring our pain and stress (because we’re so social), inside, we feel like we’re dying. Suffering, struggling… unable to escape that vicious cycle.

Source: Who has the energy? Of #autism and masking and failing to fit in – Aspie Under Your Radar

For twelve or more hours per day, for years, I had been trying to pass for neurotypical without realizing I had been doing so. I had exhausted myself in the process. I never thought much of it at the time. Until it happened again.

About four years ago, I was enjoying a fairly leisurely life of working part time from home. I had been working from home doing freelance work for a few years. I didn’t have a spouse or children. My life wasn’t particularly stressful compared to most peoples’.

I just didn’t feel like doing anything. I had no ambition at all, almost all of a sudden. I didn’t feel like talking to the few friends I usually kept in touch with. I didn’t feel like going to the places I used to like to go. I wasn’t sad or anxious. I just felt like I had shut down. It lasted for a while, and people became concerned about me.

For seven months, I didn’t leave the house. I had started ordering my groceries online. I didn’t have any reason to go anywhere. I wasn’t agoraphobic or afraid to leave my apartment. I just didn’t feel like it. My mother became concerned that I was severely depressed, but I didn’t feel depressed. I had been depressed in the past, and this didn’t feel the same. I couldn’t articulate why this was different than depression, but I knew in my heart that it was. This was something else.

I take inventories of the things I do each day and how those things affect me. It dawned on me the other day that the main reason I do this is because I don’t want to experience burnout again. As much as I try to avoid meltdowns, because my meltdowns can be scary, I also try to avoid longterm shutdowns that might cause me to lose my job (which I can’t afford to lose). I have to be able to function, and I try to maintain my functioning by not wasting too much energy on things that can be let go. Whenever I slip back into focusing too much of my energy on the wrong things, I start to feel burnt out again.

Source: Burnout | aspified

“Aspie burnout” is a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to “be normal”, fit in and keep up. Here, I think it is very useful to draw peoples’ attention to Christine Miserandino’s ‘spoon theory’: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ because when I read it, I saw such immense parallels with living with Asperger’s/autism. It can creep up on you, it can hit any time, but for sure, most Aspies will have experienced Aspie burnout by the time they hit 35.

Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.

When you hit burnout, you can take a long time to recover.  Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards.  So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge.  And once you burnout, your coping capacity is diminished.  That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.

Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. On page 33 it says:

“She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”

Source: Aspie Burnout | Planet Autism Blog

I have been undiagnosed for most of my life so have subconsciously tried to hide or push through my autistic characteristics to fit in to the point where I physically and mentally could not do it any more, but surely we should be protecting young autistic people from the same fate?

We cannot be ‘cured’ only, by an extreme effort of will, suppressed. We should be teaching young autistic people to know their limits. It should not be celebrated that autistic people can act neurotypical, especially as we do not know the recovery time that this effort requires and do not have accommodations in the ‘established’ society to allow this healing to take place.

Source: Long-term Burnout – A Little Off the Mark

In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment.

Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.

I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously.

Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated.

Source: Autistic Burnout and Aging • Ollibean

I think one thing that may be different about a person on the spectrum going through burnout, is they may have learned a social facade that can be carried into periods when they are horribly stressed.

Observing others through my career, most are not able to disguise this kind of distress, and they often do not receive the same demands that the hardworking dedicated worker with hidden distress receives.

Source: KATiE MiA/Aghogday: Burnout on the Autism Spectrum

Burnout, long-term shutdown, or whatever you want to call it, happens generally when you have been doing much more than you should be doing. Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.

The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.

To the outside world, this can look as if a forty-year-old perfectly normal person suddenly starts acting like a very stereotypically autistic person, and they can believe that this is a sudden change rather than a cumulative burnout eventually resulting in a complete inability to function in any way that looks remotely normal. The outside world is not used to things like this, and the autistic person might not be either. They might look for the sudden onset of a neurological disorder, or for psychological causes, and receive inappropriate “treatments” for both of these, when really all that has happened is massive and total burnout.

This can also look much less spectacular, or be much more gradual, and it can happen in any autistic person. Sometimes, with more supports or a change in pace or environment, the skills lost come back partially or totally. Sometimes the loss in skills appears to be permanent — but even that can be somewhat deceptive, because sometimes it is simply that the person can no longer push themselves far beyond what their original capacity was in the first place.

Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.

People training autistic children to look more normal or refusing to tell their children they are autistic also need to be aware of this possibility, because this is the potential end result ten, twenty, thirty, or forty years down the road. This is one of the biggest reasons for teaching us to learn and grow as ourselves, accounting for our strengths and weaknesses rather than as counterfeit neurotypicals.

Source: Help! I Seem to be Getting More Autistic!” ARTICLE

In summary Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person (me in this case) falls apart. All autistic symptoms get worse. Trying to manage all the every day normal activities are way too much. It is overwhelming and stressful for the person involved.

Source: Autism, Motherhood and Advocacy.: Autistic Burnout

My description of an inability to cope with overload might sound familiar if you read my post about meltdowns. That’s because it is similar. In fact, I’d say that burnout is a type of meltdown – one that occurs over a much longer timescale. It fits the same niche: it’s my brain’s last resort, an extreme emotional release as a result of overload. But it’s a response to a chronic energy debt, instead of an acute one.

Burnout eventually does have the intended effect – it stops the overload. Because it stops my ability to function at all, which handily includes my ability to go to school or work or do the things that were draining my energy faster than I could replenish it. Just like a meltdown forces me to get out of whatever situation was acutely overloading me.

It’s difficult to explain the concept of limited energy to people who haven’t experienced it. It’s even more difficult to explain when I actually have functioned with a full-time occupation before. If I now say I’m unable to do that, it either seems like I’m flat-out lying, or like I’m deliberately ‘disabling’ myself by limiting what I can do. But neither of those is the case. I never knew that most people don’t feel overwhelmed and overloaded all the time. I did know that most people don’t have mental health breakdowns like clockwork every few years – but I didn’t know why that happened to me and not others. Maybe most significantly, I didn’t know that energy limits existed, let alone that the idea could explain my experiences.

Now that I do know those things, I’m not lying about my past or trying to make myself worse off than I am. I’m finally being honest, to myself, about my own abilities. If that looks like I’m limited myself, it’s only because I’ve pushed myself way too hard for my whole life until now. It might look like I now have the life of a ‘more’ disabled person than I have before. But it’s actually the opposite. I am just as disabled as I always have been, but now I am taking some control over how my life works. I’m looking forward to finding out what happens.

Source: Burnout | autisticality

Autistic self-advocates also face activist burnout.

One of the major themes we see is that the impact of activist burnout compounds existing industry and workplace pressures faced by marginalized tech workers. Activism burnout is usually happening while advocates are also facing demanding schedules, hostile work environments, and a tech culture where abuse, discrimination, microaggressions, and psychological effects like imposter syndrome and stereotype threat are widespread. This echoes what Keidra Chaney wrote in Invisible: Burnout and Tech: “For marginalized workers in tech – women, people of color, queer/trans people, people with disabilities – [tech] burnout comes quicker and harder. It comes from existing and being pressured to thrive in a space where your presence is seen as an aberration, and your skills are perceived as suspect. It’s a burnout not easily solved by quick fixes, or even a new job; it’s triggered by your own life, the very body you inhabit” [Model View Culture, 2015 Quarterly #3.] The realities of a marginalized existence in tech, layered with activist burnout are profound; as one respondent noted: “It’s alienating and exhausting during the workday and after the workday;” another acknowledged that, despite the rewards of the work, “it gets tiring to have people only see me as an activist and not as a deeply technical person who is also an activist… it makes me question whether I’m really as deeply technical as I think I am. It gives my impostor syndrome yet another thing to play with.”

Of the ~30 respondents to our survey, mental health problems were one of the most heavily referenced effects of diversity in tech work, with numerous mentions of anxiety, depression and insomnia, as well as difficulty managing frustration and anger. In some cases, respondents reported that burnout triggered new mental illness symptoms; in other cases, it exacerbated, worsened or brought back pre-existing mental illnesses and related symptoms – as one activist noted: “I had been having mental health issues before already. Before my first burnout from tech activism, I was recovering from depression and eating disorders, and my recovery was going well. A short time into this burnout, my depression and eating disorders came back.”

Source: Putting a Spotlight on Diversity in Tech Burnout by The Editor | Model View Culture

Presume Competence: A Hippocratic Oath for Education

“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.

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

Presume competence. Begin any new learning adventure from a point of aspiration rather than deficit. Children know when you don’t believe in them and it affects their progress. Instead, assume they’re capable; they’ll usually surprise you. If you’re concerned, start small and build toward a goal.

Source: A parent’s advice to a teacher of autistic kids

Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.

To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.

Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.

Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.

It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.

To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.

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.

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

What you will need is the awareness and patience to embrace people with autism as different, not less; the willingness to presume that people with autism are competent – even if evidence may be not be available at first; and the understanding that behavior is not random, but is instead motivated by necessity, frustration, sensory differences, or the need to communicate a request or thought.

People with autism may experience the world in ways that are unfamiliar to us, but they need us to remember that what we see on the outside may not be an accurate reflection of what exists within. The ability to communicate or regulate social interaction should not be confused with the ability to think or the capacity to love. Rather than labeling individuals as “low functioning” or “high functioning,” we should recognize that people with autism vary in their ability to demonstrate competence. Our responsibility is then to presume, find, and strengthen that competence.

Just because a child may not be able to speak doesn’t mean that he has nothing to say. Just because a person may be overwhelmed in social situations doesn’t mean that she doesn’t long for friendship. Just because someone has difficulty initiating movement doesn’t mean he doesn’t want to participate.

Researchers in applied psychology often use the term “child efficacy” to describe the belief that a child is capable of learning and improving. Likewise, the term “self-efficacy” is used to describe our own beliefs that we as parents or teachers are capable of helping a child to improve. It’s critical not only to recognize that a child can learn, understand, and improve, but that we have the ability to help.

The beliefs that parents and teachers have about their own abilities have an important effect on later outcomes for children with autism and other challenges. Greater parent efficacy results in more positive interactions with children, decreased coercive discipline, improved classroom behavior, reduced behavior problems, lower family stress, reduced parental vulnerability to stress and depression, and increased satisfaction with family life. These outcomes have been reported even after controlling for a wide variety of other factors.

Our beliefs that we are capable of helping are more than just happy feelings – they affect the amount of time we engage with people with autism, the quality of our teaching efforts, how frequently we offer them learning opportunities, and how patient we are in resolving difficulties. In a longitudinal study of children with disabilities and behavior problems, parental optimism/pessimism was the single best predictor of which children would have more severe problems years later.

Source: Presume Competence: A guide to successful, evidence-based principles for supporting and engaging individuals with autism

As a result of long-standing mythical and erroneous perceptions, when we encounter a person with a disability, positive presumptions and attitudes may be instantly replaced by negative stereotypes and prejudice (yes, we pre- judge), and the person with a disability is Presumed Incompetent. The guilt-by-association mentality may also kick in, so the person’s parents may also be Presumed Incompetent. (I was once told that my family was dysfunctional, our daughter was dysfunctional, and my husband and I were dysfunctional because of our son’s disability!)

Traditionally, we’ve Presumed Incompetence and forced a person with a disability to prove she’s competent before allowing her to be in a general ed classroom, participate in community activities, be employed in a real job, live in the home of her choice, etc. It’s easy to see that our actions put people with disabilities in a no-win situation: because we presume they’re incompetent, we don’t give them opportunities to demonstrate their competence, and this, in turn, is taken as “proof ” that they are, indeed, incompetent. The vicious cycle of the self-fullling prophecy is realized.

Source: Presume Competence

And here is a skeptical counterpoint. Don’t use “Presume Competence” or any other phrase as a substitute for thinking critically and responding to data. Don’t wrap discredited methods in “Presume Competence”. Growth Mindset has some good qualities, but the implementation is usually busywork for deficit model bikeshedders. Mind the implementation.

“Presume competence” appears to be the rallying cry for full inclusion advocates, but also is used to defend pseudoscientific and invalidated interventions like facilitated communication and rapid prompting method. The notion seems largely supported by professionals aligned with a postmodern epistemology and may have been a strategic tactic by proponents like Douglas Biklen. Is “presuming competence” different from “presuming capable” and, regardless of the position, should we refrain from skepticism of people like Carly Fleischmann, Ido Kedar, and Sue Rubin to implicitly endorse the notion, or suspend belief until compelling evidence to substantiate their communicative competence is presented?

Source: Is “presume competence” a propaganda phrase for fully inclusive education? – ResearchGate

Presuming competence is not idealism. Idealism ignores that there are challenges or barriers to overcome. The very definition is that the ideals are often “unrealistic.

Presuming competence is a philosophical difference. It’s a belief in socializing students for courage instead of compliance.

It is more than an ideology because when you start from the mindset that someone is capable and can grow, your actions start to reflect that. There are concrete, evidence-based ways that you can presume competence.

Presuming competence is more than believing that a child is competent of thoughts, ideas, and learning. It is also the practice of making sure people – ALL people – have the right to talk about what THEY want, even if it’s not the topic we planned.

Presuming competence isn’t about belief in students in the absence of evidence. It is a belief in their right to access the communication to demonstrate their abilities as humans. You’ll never gather evidence without providing opportunity. So when you’re marking down minuses on data sheets, ask yourself, “Is it possible that there isn’t an adequate way for them to show me that they know this?” When you do that, and acknowledge that there are a range of variables between a plus and a minus, you start to problem solve for your student(s) instead of testing them.

Presuming competence is giving students the opportunity to learn literacy, math, science, and history regardless of their disability.

It is providing the chance to build relationships. It’s exposing students with CCN to leisure activities and allowing them to decide if it’s something they enjoy.

Presuming competence gives children a chance to explore and make mistakes without penalty. It gives them time to learn with support rather than testing or criticism.  When you presume competence, you give the child a safe place to fail and the ability to learn from those small failures and try again. It’s how we grow. That growth and the confidence students gain from overcoming challenges gives them the courage to keep moving forward and develop skills to demonstrate their competence.

Source: Presuming Competence in Practice

Self-advocate, silenced

I am autistic and take issue with those who silence autistic voices. We are abused into compliance and silence, stuffed into neurotypical boxes, and denied agency and self-advocacy. Those who silence self-advocate perspective in a disability support group for students—where connecting kids with an identitytribe, and voice are vitally important—will not receive silence in reply. They will hear my voice. They will hear it in the song of our systems as we move to the social model for minds and bodies.

Those who do not respect identity should not moderate a disability group. When you block the voices of self-advocates and their families, you fail inclusionNothing about us, without us.

 

Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity

Gender nonconformity, dysphoria, and fluidity are oft discussed in neurodiversity communities. Neurodivergent people are more likely than the general population to be gender non-conforming. Many prominent autistic self-advocates identify as intersex, asexual, and genderqueer.

The broadest definition of neurodiversity is a social model umbrella that includes LGBTQIA and genderqueer.

Spectrums and rainbows, double rainbows.

Autistics and LGBTQIA share some dark history—and some bad actors. Chapter 7 of NeuroTribes, Fighting the Monster, shares the legacy of Ole Ivar Lovaas, the twisted father of Applied Behavior Analysis (ABA) and conversion therapy. He applied his abusive, torturous techniques to autistic kids and “sissy boys” to make them “indistinguishable from their peers”. He had little regard for their humanity—they were engineering projects.

“The fascinating part to me was to observe persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviors that one would call social or human,” he wrote. “Now, I had the chance to build language and other social and intellectual behaviors where none had existed, a good test of how much help a learning-based approach could offer.”

He explained to Psychology Today, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense— they have hair, a nose, and a mouth— but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

Source: Silberman, Steve (2015-08-25). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 285). Penguin Publishing Group. Kindle Edition.

ABA and its conversion therapy kin are with us still, all too alive and well.

#ActuallyAutistic reject ABA. I don’t know a single autistic person who supports it.

Protecting LGBTQIA kids protects also neurodivergent kids—and vice versa. The fight is for inclusion and acceptance—for all operating systems, for all of our different ways of being human. Supporting our kids means supporting all of their possibilities and expressions.

Children on the autism spectrum are more than seven times more likely to show signs of gender variance, according to a study led by New York University.

The study, published last month in Transgender Health, recruited the parents of 492 autistic children ages six to 18. When the researchers asked these parents whether their children often “wish to be the opposite sex,” a little over five percent of participants said yes, compared to less than one percent of the general population.

Bolstering these findings is the fact that a previous study from the Children’s National Medical Center in 2014 found almost the exact same results. The NYU study found that 5.1 percent of children on the autism spectrum showed signs of gender variance. The 2014 study put that number down at 5.4 percent.

Both studies show that counselors working with autistic children should ask about their gender identity. Being both autistic and gender non-conforming, some children face a double-challenge in responding to society’s biases.

Study: Autistic kids more likely to be gender non-conforming | PhillyVoice

Ollie’s parents wondered if his gender nonconformity — behavior that doesn’t match masculine and feminine norms — might have something to do with his autism. Ollie had been diagnosed with sensory processing disorder at age 2: An extreme sensitivity to sounds, light, the texture of some foods or the feel of a particular fabric can send children like Ollie into a meltdown. He also had difficulty falling asleep and staying asleep. It would take his parents four more years to find a doctor who recognized the classic symptoms of Asperger syndrome — above-average intelligence combined with social and communication deficits, and restricted interests. (Ollie was diagnosed with Asperger syndrome before the diagnosis was absorbed into the broader category of autism spectrum disorder in 2013.)

Ollie’s parents are not alone in pondering this puzzle. A handful of studies over the past five years — and a series of case reports going back to 1996 — show a linkage between autism and gender variance. People who feel significant distress because their gender identity differs from their birth sex — a condition known as gender dysphoria —have higher-than-expected rates of autism. Likewise, people with autism appear to have higher rates of gender dysphoria than the general population.

Between 8 and 10 percent of children and adolescents seen at gender clinics around the world meet the diagnostic criteria for autism, according to studies carried out over the past five years, while roughly 20 percent have autism traits such as impaired social and communication skills or intense focus and attention to detail. Some seek treatment for their gender dysphoria already knowing or suspecting they have autism, but the majority of people in these studies had never sought nor received an autism diagnosis. What’s more, roughly the same numbers of birth males and females appear to be affected — which is surprising, given that in the general population, autism skews male.

Over the past decade, people with gender dysphoria have developed new ways of expressing their sense of self. Whereas many once identified as transsexual or transgender, some now call themselves ‘genderqueer’ or ‘non-binary.’ Rates of autism and autism traits appear to be higher in those identifying as genderqueer. Like Ollie, these people generally say they don’t feel fully masculine or feminine, and explicitly reject the notion of two mutually exclusive genders. The word ‘trans’ is often used to encompass all of these identities and the phrase ‘affirmed gender’ to convey a person’s sense of self.

Inspired by the Dutch study, Strang and his colleagues approached prevalence from another angle. Instead of measuring the incidence of autism among gender-dysphoric children and adolescents, they assessed gender variance — defined as a child “wishing to be the other sex” — in children with autism. “We found rates that were 7.5 times higher than expected,” Strang says.

Still, she cautions that sometimes, what looks like autism may actually be untreated gender dysphoria. “So much of the experience of being trans can look like the spectrum experience,” she says. People who don’t want to socialize in their birth genders may seem to have poor social skills, for example; they may also feel so uncomfortable with their bodies that they neglect their appearance. “That can sometimes be greatly alleviated if you give that person appropriate gender support,” she says.

Others agree with these insights. A 2015 study by researchers from Boston Children’s Hospital reported that 23.1 percent of young people presenting with gender dysphoria at a gender clinic there had possible, likely or very likely Asperger syndrome, as measured by the Asperger Syndrome Diagnostic Scale, even though few had an existing diagnosis. Based on these findings, the researchers recommend routine autism screening at gender clinics.

Source: Living between genders | Spectrum

Gender norms should not be imposed on people with autism to make the rest of the world more comfortable. Why teach girls with autism how to apply makeup, dress in a feminine manner and shop? Therapists, educators and parents only consider these to be important goals because our society imposes strict gender norms.

As a member of the LGBTQ community who is also autistic, I encounter inequality based on my gender identity, my sexual orientation and my disability. Societal barriers in housing, employment, transportation, healthcare and education systematically exclude queer, gender-queer, transgender and disabled people; outdated and negative attitudes about gender, sexuality and autism affect our social relationships.

Queer environments don’t often account for our sensory processing issues or social differences, whereas autism services don’t often recognize that we may identify beyond the gender binary or have queer relationships. Shifting the focus from the tired narratives of delayed diagnosis and sex differences can help the autism community take responsibility for improving our day-to-day quality of life, whatever our age at diagnosis or gender identity.

Source: Focus on autism must broaden to include non-binary genders | Spectrum

Nearly a quarter of young persons diagnosed with gender dysphoria, or who are transgender, screened positive for Asperger syndrome, a form of autism, according to a new paper in the academic journal LGBT Health.

The study was a small retrospective review of intake files of 39 children at Boston Children’s Hospital. Lead author Dr. Daniel E. Shumer explains, “We found that 23 percent of kids fell into the ‘possible, likely or very likely category’ when using the evaluation tool to screen for Asperger’s.”

“Having autism is a burden; a lot of things in the world change when you have autism,” says Strang. “But adding transgenderism, or maybe some of them aren’t transgender but they are just exploring gender, that is complicated in itself.”

“Knowing how to navigate in a world that is not really friendly with people who are trans can be tricky when you are missing social cues.”

Shumer says it is important that parents and medical providers be aware of the increased possibility for co-occurrence of autism and gender variance. If treating patients for one condition, they should screen for the other and be prepared to treat it.

“There also may be implications for how to provide informed consent for things like hormonal interventions,” he adds.

Source: PrideSource – Transgender Youth More Likely to Have Autism

Lovaas’s crusade to “normalize” deviance was not limited to autistic children. In the 1970s, he lent his expertise to a series of experiments called the Feminine Boy Project, the brainchild of UCLA psychologist Richard Green. After interviewing one hundred men and women who applied for gender reassignment surgery, Green became interested in tracing the roots of sexual identity back to childhood. He teamed up with Lovaas to see if operant conditioning could be employed as an early intervention in cases of gender confusion to prevent the need for reassignment surgery in the future.

The project’s most celebrated success story was Kirk Andrew Murphy, enrolled at UCLA by his parents at age five. Bright and precocious, Kirk would ask for his favorite snacks by their brand names at the supermarket. But after seeing Green interviewed on TV about “sissy-boy syndrome”— his term for early-onset gender dysphoria— Kirk’s parents became concerned that he was exhibiting behavior that was inappropriate for a little boy. One day, his father caught him posing in the kitchen in a long T-shirt and saying, “Isn’t my dress pretty?” Children with this syndrome, Green claimed, often grew up to become transsexual or homosexual. Lovaas assigned a young graduate student named George Rekers to become Kirk’s behavioral therapist.

In a case report that would go on to become a classic in undergraduate psychology courses, Rekers and Lovaas wrote that Kirk (called “Kraig”) possessed “a remarkable ability to mimic all the subtle feminine behaviors of an adult woman.” They framed his “offer to ‘help mommy’ by carrying her purse” as an example of the boy’s devious manipulation of his mother to “satisfy his feminine interests.” Their descriptions of the little boy’s behavior, compared with the transcripts of Green’s intake interviews with Kirk’s parents, were decidedly more extreme, as if the boy were clearly a world-class drag queen in the making at age five. They claimed that he had an elaborate “history of cross-dressing” that included plundering his grandmother’s makeup kit for cosmetics and “swishing around the home and clinic, fully dressed as a woman with a long dress, wig, nail polish, high screechy voice, [and] slovenly seductive eyes.” (In family photographs, Kirk more resembles a Mouseketeer.)

Silberman, Steve (2015-08-25). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 320). Penguin Publishing Group. Kindle Edition.

In a case report that would go on to become a classic in undergraduate psychology courses, Rekers and Lovaas wrote that Kirk (called “Kraig”) possessed “a remarkable ability to mimic all the subtle feminine behaviors of an adult woman.” They framed his “offer to ‘help mommy’ by carrying her purse” as an example of the boy’s devious manipulation of his mother to “satisfy his feminine interests.” Their descriptions of the little boy’s behavior, compared with the transcripts of Green’s intake interviews with Kirk’s parents, were decidedly more extreme, as if the boy were clearly a world-class drag queen in the making at age five. They claimed that he had an elaborate “history of cross-dressing” that included plundering his grandmother’s makeup kit for cosmetics and “swishing around the home and clinic, fully dressed as a woman with a long dress, wig, nail polish, high screechy voice, [and] slovenly seductive eyes.” (In family photographs, Kirk more resembles a Mouseketeer.)

Silberman, Steve (2015-08-25). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 320). Penguin Publishing Group. Kindle Edition.

In a case report that would go on to become a classic in undergraduate psychology courses, Rekers and Lovaas wrote that Kirk (called “Kraig”) possessed “a remarkable ability to mimic all the subtle feminine behaviors of an adult woman.” They framed his “offer to ‘help mommy’ by carrying her purse” as an example of the boy’s devious manipulation of his mother to “satisfy his feminine interests.” Their descriptions of the little boy’s behavior, compared with the transcripts of Green’s intake interviews with Kirk’s parents, were decidedly more extreme, as if the boy were clearly a world-class drag queen in the making at age five. They claimed that he had an elaborate “history of cross-dressing” that included plundering his grandmother’s makeup kit for cosmetics and “swishing around the home and clinic, fully dressed as a woman with a long dress, wig, nail polish, high screechy voice, [and] slovenly seductive eyes.” (In family photographs, Kirk more resembles a Mouseketeer.

Source: Silberman, Steve (2015-08-25). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (pp. 319-320). Penguin Publishing Group. Kindle Edition.

To nip the little boy’s inappropriate behavior in the bud, they devised a program of total immersion based on Lovaas’s work on autism. This time, instead of hand-flapping, gaze aversion, and echolalia, the behaviors targeted for extinction included the “limp wrist,” the submissively yielding “hand clasp,” the notorious “swishy gait,” the girlish “hyperextension” of the limbs in moments of exuberance, and prissy declarations like “goodness gracious” and “oh, dear me.”

At home, Kirk’s “masculine” behaviors were rewarded with blue chips that could be redeemed for candy and other treats, while his “feminine” behaviors were punished with red chips that were subtracted from the total. In interviews conducted by blogger Jim Burroway, who undertook a thorough investigation of the case in 2011, Kirk’s brother, Mark, recalled their father punishing the boy— with Rekers’s approval— by converting each red chip into a “swat.” Mark broke down sobbing as he confessed to hiding red chips from his brother’s pile so that Kirk wouldn’t have to endure the abuse.

Source: Silberman, Steve (2015-08-25). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (pp. 320-321). Penguin Publishing Group. Kindle Edition.

Misperceptions about what it means to be transgender or about autistic people’s ability to understand their gender or make decisions about their bodies often prompt service providers or family members to stand in the way of transgender autistic people’s attempts to live life with authenticity and dignity. This can include denying transgender autistic people access to transition-related care, subjecting them to “normalization” treatments aimed at suppressing their gender expression, or placing them in guardianship or institutional settings that restrict their decision-making power. While research suggests a large overlap between transgender and autistic communities, trans autistic people often lack access to services and supports that understand and respect all aspects of their identity.

“Too frequently, autistic people are denied basic rights to make decisions about our own bodies and health care, including when it comes to expressing our gender identity,” said Sam Crane, Legal Policy Director for the Autistic Self-Advocacy Network. “Whether we’re transgender or not, autistic people’s gender identities are as real as anyone else’s and should be respected and supported, not dismissed based on baseless stereotypes.”

Source: Autistic Self-Advocacy Network, LGBT Groups Release Statement on Needs of Trans Autistic People | Autistic Self Advocacy Network

Don’t use this information to “blame” trans identity on autism. Don’t threaten identity or reduce agency.

To blame trans identities on autism is to say that autistic people cannot understand or be aware of their own gender. If an autistic person cannot know they are trans, how can they know they aren’t? How can they know anything about themselves?

When a person’s gender is doubted because they are autistic, this paves the way for removing autistic people’s agency in all kinds of other ways. If we can’t know this central aspect of our identity, we surely can’t know how we feel, what we like, or who we are. In short, it implies that we are not truly people, and that our existence, experiences, and identities are for other people to define. This is just another facet of dehumanising autistic people, and gender is certainly not the only area in which this happens.

In itself, the very urge to find a ‘reason’ that someone is transgender is a result of believing that being transgender is a problem, and that it would always be better not to be. The fact that clinicians like Zucker are focused on why someone is transgender, instead of focusing on what kind of help they need and how to best provide it, demonstrates clearly the belief that it is fundamentally bad to be transgender.

Not only that, but the belief that it’s even theoretically possible for anyone besides the individual in question to know what someone’s gender is. That’s just not how gender works! No-one really understand what gender is, or what it means, or where it comes from. The only thing we know for sure is that it’s internal, subjective, and personal. You can’t prove or test someone else’s gender any more than you can prove or test their favourite colour. The idea that it can be tested is constantly used to invalidate trans people. Our genders are doubted or disbelieved if we fail to adequately ‘prove’ ourselves to everyone else – if we express too many or too few gender stereotypes, if we are too old or too young, if we claim to be nonbinary or our description of our identity is too complicated or confusing.

The best option is to allow someone to explore their feelings, support them in gaining self-understanding, and accept their identity whatever it turns out to be. It is not complicated, and it’s only scary if you are still holding onto the belief that being either autistic or transgender – or, perish the thought, both – is a terrible thing to be. Which it’s not. I am, along with countless others like me, living proof of that.

“A common misconception is the assumption that gender and sexuality are irrelevant to autistic people, or that our sexuality and gender identities are symptoms of our autism,” said Bascom. “These beliefs are not only inaccurate but also profoundly harmful to autistic people and are often used to prevent autistic LGBT folks from accessing LGBT spaces, authentic relationships, and transition-related health care. The reality is that autistic people can have a beautiful diversity of gender identities and sexualities, and we have the same right to self-determination as anybody else.”

Source: How doctors’ offices and queer culture are failing autistic LGBTQ people.

Studies:

Harm reduction, addiction, tough love, 12 steps, neurodiversity, and the troubled-teen industry

If addiction is like misguided love, then compassion is a far better approach than punishment.

Source: Can You Get Over an Addiction? – The New York Times

Maia Szalavitz poses addiction as a neuro-developmental learning disorder—one often developed while trying to cope with trauma, poverty, or an overreactive nervous system, particularly during adolescence.

Many neurodivergent have hyper-reactive nervous systems. Anxiety and sensory overwhelm flood the senses. A substance that eases anxiety and sensory overwhelm offers relief and escape.

I’m autistic. Much of autism is anxiety and sensory overwhelm. A widely available—and destructive—tool for coping is alcohol. Compulsive damping of my reactive neurology with alcohol compromised my health.

There are less harmful ways to medicate. Cannabis is a neuroprotectant and powerful harm reducer that is friendly to neurodivergence.

Cannabis is the least harmful way for we humans to cope with the burdens of sentience, senescence, and mortality. Cannabis is popular in STEAM cultures, at least the ones I’ve inhabited. It is part of the process of living, creating, and coping. I think the neurodivergent have long used it to regulate and cope in a world that does not accommodate. If your neurodivergence is accompanied by tics, seizures, paresthesia, fasciculations, panic, anxiety, or self-harming stimming, as but a few examples, then cannabis is a tool and ally. There are as many human operating systems as there are humans. The endocannabinoid system is a useful interface to our operating systems for which we have a natural, easy-to-grow key. All humans and their mammalian kin share this interface and this plant. We plucky prometheans figured out how to decarboxylate with fire.

Source: On cannabis and neurodiversity

The drug war’s perverse notions of addiction, addicts, and coping limit our vocabulary, stifle our empathy, and harm us all–especially those with neurodivergent operating systems and those enduring poverty and structural racism and ableism.

Through compassion, the social model, and respect for neurodiversity and structural disadvantages, we can improve our views of addiction.

Follow Maia Szalavitz on Twitter and read her book.

Below:

  • Addiction as a learning disorder
  • Addiction vs. Dependence, Interventions, and Rehab
  • 12 Steps and Tough Love
  • The Troubled Teen Industry
  • Cannabis and Harm Reduction
  • Supervised Injection

Warning: mental and physical abuse and torture

Addiction as a learning disorder

More people than ever before see themselves as addicted to, or recovering from, addiction, whether it be alcohol or drugs, prescription meds, sex, gambling, porn, or the internet. But despite the unprecedented attention, our understanding of addiction is trapped in unfounded 20th century ideas, addiction as a crime or as brain disease, and in equally outdated treatment.

Challenging both the idea of the addict’s “broken brain” and the notion of a simple” addictive personality,” Unbroken Brain offers a radical and groundbreaking new perspective, arguing that addictions are learning disorders and shows how seeing the condition this way can untangle our current debates over treatment, prevention and policy. Like autistic traits, addictive behaviors fall on a spectrum — and they can be a normal response to an extreme situation. By illustrating what addiction is, and is not, the book illustrates how timing, history, family, peers, culture and chemicals come together to create both illness and recovery- and why there is no “addictive personality” or single treatment that works for all.

Source: Unbroken Brain – Maia Szalavitz

Addiction is indeed a brain problem, but it’s not a degenerative pathology like Alzheimer’s disease or cancer, nor is it evidence of a criminal mind. Instead, it’s a learning disorder, a difference in the wiring of the brain that affects the way we process information about motivation, reward and punishment. And, as with many learning disorders, addictive behavior is shaped by genetic and environmental influences over the course of development.

The studies show that addiction alters the interactions between midbrain regions like the ventral tegmentum and the nucleus accumbens, which are involved with motivation and pleasure, and parts of the prefrontal cortex that mediate decisions and help set priorities. Acting in concert, these networks determine what we value in order to ensure that we attain critical biological goals: namely, survival and reproduction.

In essence, addiction occurs when these brain systems are focused on the wrong objects: a drug or self-destructive behavior like excessive gambling instead of a new sexual partner or a baby. Once that happens, it can cause serious trouble.

If, like me, you grew up with a hyper-reactive nervous system that constantly made you feel overwhelmed, alienated and unlovable, finding a substance that eases social stress becomes a blessed escape.

The learning perspective also explains why the compulsion for alcohol or drugs can be so strong and why people with addiction continue even when the damage far outweighs the pleasure they receive and why they can appear to be acting irrationally: If you believe that something is essential to your survival, your priorities won’t make sense to others.

Recognizing addiction as a learning disorder can also help end the argument over whether addiction should be treated as a progressive illness, as experts contend, or as a moral problem, a belief that is reflected in our continuing criminalization of certain drugs. You’ve just learned a maladaptive way of coping.

Moreover, if addiction resides in the parts of the brain involved in love, then recovery is more like getting over a breakup than it is like facing a lifelong illness. Healing a broken heart is difficult and often involves relapses into obsessive behavior, but it’s not brain damage.

If addiction is like misguided love, then compassion is a far better approach than punishment.

This makes sense because the circuitry that normally connects us to one another socially has been channeled instead into drug seeking. To return our brains to normal then, we need more love, not more pain.

People with addictions are already driven to push through negative experiences by their brain circuitry; more punishment won’t change this.

But it’s equally possible that I kicked then because I had become biologically capable of doing so. During adolescence, the engine that drives desire and motivation grows stronger. But unfortunately, only in the mid-to-late 20s are we able to exert more control. This is why adolescence is the highest risk period for developing addiction — and simple maturation may be what helped me get better.

At the time, nearly all treatment was based on 12-step groups like Alcoholics Anonymous, which help only a minority of addicted people. Even today, most treatment available in rehab facilities involves instruction in the prayer, surrender to a higher power, confession and restitution prescribed by the steps.

We treat no other medical condition with such moralizing — people with other learning disorders aren’t pushed to apologize for their past behavior, nor are those affected by schizophrenia or depression.

Once we understand that addiction is neither a sin nor a progressive disease, just different brain wiring, we can stop persisting in policies that don’t work, and start teaching recovery.

Indeed, if the compulsive drive that sustains addiction is directed into healthier channels, this type of wiring can be a benefit, not just a disability. After all, persisting despite rejection didn’t only lead to addiction for me — it has also been indispensable to my survival as a writer. The ability to persevere is an asset: People with addiction just need to learn how to redirect it.

Source: Can You Get Over an Addiction? – The New York Times

I want people to understand that addiction is a learning disorder. If you don’t learn that a drug helps you cope or make you feel good, you wouldn’t know what to crave. People fall in love with a substance or an activity, like gambling. Falling in love doesn’t harm your brain, but it does produce a unique type of learning that causes craving, alters choices and is really hard to forget.

It’s compulsive behavior that persists despite negative consequences. Once you realize that that’s the definition of addiction, you realize that what’s going on is a failure to respond to punishment. If punishment worked to stop addiction, addiction wouldn’t exist. People use despite their families getting mad at them, despite losing their jobs and being homeless. And yet we think the threat of jail is going to be different? Addiction persists despite negative consequences. That doesn’t mean that people don’t recover through coercive means, but that doesn’t mean it’s the best way to get there.

My problem with addiction memoirs has always been that this is a deeply political problem and none of them have any political consciousness. They typically tell the story of sin and redemption, an individual story that can stand in for everyone else’s story. That’s just not true.

People who become addicted are wired differently, and it affects the manner in which they learn. We see people with addiction as valueless—literally, pieces of junk. But the interesting thing with different types of brain wiring is, they don’t bring only disadvantages. They can also bring advantages. Sometimes there are blessings hidden inside of curses. The compulsive drive that set me up for addiction probably also makes me a good journalist.

Having the ability to persist despite negative consequences is a plus in many ways. You could never parent or be in a relationship without that ability. Diaper-changing is not fun. There’s a lot of stuff in life where you just have to stick it out. When those same systems that give us motivation get misdirected toward a drug, that’s problematic. It doesn’t mean you’re broken, it just means you fell in love with the wrong thing.

If addiction was genuinely a disease that got worse and worse, it should be harder to recover the older you get. But the data say differently: by their early thirties, half of people who have addiction, excepting tobacco, no longer meet diagnostic criteria. They learn to cut down on their own—and only 10 percent ever get treatment.

Language is power, and it’s important not to dehumanize people who have addiction. The term “addict” is stigmatizing and demonizing. The stereotype of the “addict” is also a stereotype we have for people of color. We have to move away from that language in order to move away from that racism.

Also, when we use the word “abuse,” it connotes really awful behavior, like domestic abuse, child abuse, sexual abuse. Nobody’s abusing a poor little drug. They might be misusing it, but they’re not abusing it.

And the very point of making something a crime is to stigmatize it. You want it to be stigmatized so people don’t do it. Yet you can’t say on one hand that you want to destigmatize addiction while you criminalize certain drugs. And the other thing that undermines the argument about addiction being a disease is that the only disease in America where 80 percent of the treatment is meeting, confession, and surrendering to a higher power.

We should decriminalize all drug possession, legalize marijuana, use the money we save to fund evidence-based treatment. We need to get rid of the cap on suboxone prescribers, (the law allows doctors to prescribe to only 100 patients) and use it as harm reduction as well as a path to recovery. We’d have fifty percent fewer deaths if we relied on medication-assisted therapy. People have to be alive to recover.

Source: Why Addiction Is a Learning Disorder – The Daily Beast

Addiction, in your view, is a neuro-developmental learning disorder. What does that mean?

It means that for one, addiction can’t occur without learning. When I say that, what I mean is literally if you don’t learn that the drug comforts you, makes you feel euphoric or allows you to cope in some way, you cannot be addicted to it—because you cannot crave it, because you don’t know what to pursue despite negative consequences. And that’s important, because people have often thought addiction is just this physiological process that hijacks your brain. That’s really not quite accurate. It involves learning, it involves interacting with the environment, interpreting the environment, and it involves making choices.

The other reason that I think it’s important to see addiction as a developmental disorder is that 90 percent of all addiction occurs between the teens and 20s. That is similar to other developmental conditions such as schizophrenia and depression, which tend to start at that age. That suggests there is a particular period of vulnerability that the brain has and also probably has to do with your life history, as well. When you hit your teens or 20s you’re learning the coping skills you need to handle the adult relationships that are necessary for survival and reproduction. If you are using drugs to escape during this time not only is your brain developmentally vulnerable to not being able to control the use of the drug, but you’re also missing out on developmental experiences that allow you to create other methods of coping.

Unfortunately, in the addictions field, we’ve developed this idea that one size fits all, and whatever works for me is going to work for you, and we can extrapolate from my experience to be the experience of all people with addiction. That’s why I like the saying from the autism community, which is: if you met one person with autism you’ve met one person with autism. We should be saying that about addictions. I find it really annoying when people say “all addicts do X or Y.” Well, maybe you do X or Y, but don’t speak for me.

Imagine I’m trying to argue that the medical condition I have is a disease. But, everybody who has that medical condition can be locked up for having that medical condition, and, if they’re not locked up, they are sent to treatment that involves prayer and restitution.

So, am I going to believe that’s a disease? If I go to cancer treatment and I get told I’m going to be locked up if my tumor grows or I’m going to have to pray to a higher power and surrender in order to get better, I’m going to definitely think that I’m not in mainstream medicine. I’m definitely going to be thinking that this is not a medical condition, that it’s some kind of sin. The 12-step people don’t see any contradiction in saying addiction is a disease and the treatment is prayer, meeting, and confession. But, from the outside that sounds completely absurd. It does not bolster the disease argument at all.

When I talk about addiction being a learning disorder, I’m not saying that it isn’t a problem of the brain, obviously. I’m saying the kind of problem it is is more like ADHD than it is Alzheimer’s. And I think that fits the data. If addiction is actually progressive, it should be harder to recover as you get older and that is not actually true. It also gives a much more hopeful message. Because when people hear “chronic progressive brain disease” they think dementia. When they hear hijacked brain they think: oh my god, these are zombies who are dangerous and we better lock them up for the protection of the rest of us. They think of people who have no responsibility for their actions so therefore we can treat them like children.

If addiction is a learning disorder, fighting a ‘war on drugs’ is useless.

In terms of marijuana: it should be legalized. It is the least harmful, not completely unharmful, but the least harmful psychoactive substance that is regularly used. It makes absolutely no sense to give that profit to the mafia.

Where you end is a comment on neurodiversity, the idea that people with different wiring do not only have impediments, but also assets that ought to be celebrated and respected. Can you explain how this relates more to your work?

It’s quite obvious for some people on the autism spectrum that they’re quite good at things like programming but quite horrible at socializing. I think the neurodiveristy movement is really cool in valuing everybody and letting people see that what may look scary or different or totally weird on the outside may, from the inside, make total sense. It expands the world for everybody.

It’s not just that people who have disabling conditions benefit from the world being friendlier towards us, but we also benefit from being able to function and offer things that we are uniquely equipped to do. I think with addictions in particular, you can’t succeed as a writer if you can’t persist despite negative consequences.

Source: Addiction is a learning disorder: Why the war on drugs is useless, AA undermines treatment, and addiction studies can learn a lot from autism

Many of us grew up with antidrug programs like D.A.R.E. or the Nancy Reagan-inspired antidrug campaign “Just Say No.” But research shows those programs and others like them that depend on education and scare tactics were largely ineffective and did little to curb drug use by children at highest risk.

The traits that put kids at the highest risk for addiction aren’t all what you might expect. In my case, I seemed an unlikely candidate for addiction. I excelled academically, behaved well in class and participated in numerous extracurricular activities.

Inside, though, I was suffering from loneliness, anxiety and sensory overload. The same traits that made me “gifted” in academics left me clueless with people.

That’s why, when my health teacher said that peer pressure could push you to take drugs, what I heard instead was: “Drugs will make you cool.” As someone who felt like an outcast, this made psychoactive substances catnip.

They focus on four risky traits: sensation-seeking, impulsiveness, anxiety sensitivity and hopelessness.

Importantly, most at-risk kids can be spotted early. For example, in preschool I was given a diagnosis of attention deficit/hyperactivity disorder (A.D.H.D.), which increases illegal drug addiction risk by a factor of three. My difficulty regulating emotions and oversensitivity attracted bullies. Then, isolation led to despair.

A child who begins using drugs out of a sense of hopelessness — like me, for instance — has a quite different goal than one who seeks thrills.

Three of the four personality traits identified by Preventure are linked to mental health issues, a critical risk factor for addiction. Impulsiveness, for instance, is common among people with A.D.H.D., while hopelessness is often a precursor to depression. Anxiety sensitivity, which means being overly aware and frightened of physical signs of anxiety, is linked to panic disorder.

Source: The 4 Traits That Put Kids at Risk for Addiction – The New York Times

Addiction vs. Dependence, Interventions, and Rehab

Much of the advice given by treatment groups and programs ignores what the data says in a similar way that anti-vaccination or climate skeptic websites ignore science. The addictions field is neither adequately regulated nor effectively overseen. There are no federal standards for counseling practices or rehab programs. In many states, becoming an addiction counselor doesn’t require a high school degree or any standardized training. “There’s nothing professional about it, and it’s not evidence-based,” said Dr. Mark Willenbring, the former director of treatment research at the National Institute on Alcohol Abuse and Alcoholism, who now runs a clinic that treats addictions.

Consequently, families are often given guidance that bears no resemblance to what the research evidence shows — and patients are commonly subjected to treatment that is known to do harm. People who are treated as experts firmly proclaim that they know what they are doing, but often turn out to base their care entirely on their own personal and clinical experience, not data.

In the past, researchers believed addiction just meant that someone needed a substance to function without suffering withdrawal. But now medical experts such as the National Institute on Drug Abuse define addiction as compulsive drug use that continues regardless of negative consequences.

That’s different from just depending on a daily dose. The latter is called physiological dependence; it affects almost anyone who takes opioids daily long term. “Physiological dependence is the normal response to regular dosages of many medications, whether opioids or others. It also happens with beta blockers for high blood pressure,” said Dr. Wilson Compton, deputy director of the National Institute on Drug Abuse. Although many chronic pain patients are physically dependent on opioids, few develop the life-threatening compulsive pattern of drug use that signifies addiction.

When opioid addiction occurs, it is rarely someone’s only mental health problem.

Addressing these underlying issues is usually essential to successful treatment – but unfortunately, many treatment programs are just not equipped to do so, despite claiming otherwise.

“Interventions are almost always destructive, and sometimes, they destroy families.”

“The pure tough love approach does not seem particularly effective and is sometimes quite cruel and potentially counterproductive,” Compton said.

Jail is not treatment. Prisons and jails tend to be neither safe nor drug-free — and interaction with the criminal system, even with drug courts, often restricts access to the best treatment while sometimes punishing relapse more severely than the original offense.

Consequently, do not try to use legal consequences as a way to help people you love, and if possible, bail them out if they get arrested for drug crimes. This doesn’t mean you shouldn’t hold them accountable, but do so in ways that are less likely to lead to lifelong problems. Meaningful employment is an important factor in recovery — and few things are more harmful to the chances of getting a good job than having a criminal record.

Because opioid addiction rarely exists by itself, experts recommend starting any search for treatment with a complete psychiatric evaluation by an independent psychiatrist who is not affiliated with a particular treatment program.

For opioid addiction itself, however, the best treatment is indefinite, possibly lifelong maintenance with either methadone or buprenorphine (Suboxone). That is the conclusion of every expert panel and systematic review that has considered the question

In the U.K., researchers looked at data from more than 150,000 people treated for opioid addiction from 2005 to 2009 and found that those on buprenorphine or methadone had half the death rate compared with those who engaged in any type of abstinence-oriented treatment.

“Rehab kills people”

Shame and punishment do not work: These tend to drive relapse, rather than recovery.

Families and loved ones can improve the odds for people with addiction by helping motivate them to get treatment; seeking evidence-based care; keeping naloxone on hand; and treating addicted people with the empathy, support and respect they’d offer if they faced any other life-threatening medical problem.

Source: What Science Says To Do If Your Loved One Has An Opioid Addiction | FiveThirtyEight

In other words, if pain medications are making your life genuinely better and improving your ability to love and work, what you are experiencing if you have withdrawal symptoms is dependence, not addiction.

“Even patients themselves confuse addiction and dependence and feel guilty about it and feel like something is wrong with them,” says Richard Saitz, professor and chair of community health sciences at Boston University. “They are often treated as if something is wrong with them, when there’s nothing wrong at all. All of that ends up leading to actions or policies or guidelines that are really misguided and address the wrong thing.”

Early definitions of addiction often did indeed see it as being identical to dependence, in part because physical withdrawal symptoms can be objectively measured and researchers were trying to minimize subjectivity.

“It is clear that any harm that might occur because of the pejorative connotation of addiction would be completely outweighed by the tremendous harm that is now being done to patients who have needed medication withheld because their doctors believe they are addicted simply because they are dependent.”

An accurate conception of addiction also has implications for the fate of children exposed to drugs in the womb. During the crack era, stigma against “addicted” babies did real harm: Teachers, parents and medical professionals viewed so-called “crack babies” as doomed to be either helpless invalids or psychotic criminals. Of course, babies can’t get addicted, since a helpless infant cannot pursue drugs despite consequences and doesn’t even know if what he craves is drugs or a diaper change. But at least one study found that the derogatory labeling produced more punitive responses from adults and lowered their expectations of the children—in itself a harmful outcome.

In fact, much of the damage initially attributed to crack exposure in babies turned out to be associated with stress and poverty—and could be ameliorated by a loving, stable home.

Addiction is not dependence, and dependence is not necessarily a problem.

Until America understands that, needless suffering will continue.

Source: You Can Rely on Drugs Without Being an Addict – VICE

12 Steps and Tough Love

The myth is that 12-step programs and their associated treatment industry thrive simply because Americans love them. In fact, both are substantially built on and maintained by force.

Coercion into the 12 Steps comes from five main sources: criminal courts, family courts and family services, health care systems, families and employers.

So even by dated and conservative estimates, hundreds of thousands of Americans per year are forced into AA and 12-step-oriented treatment. Yet a steady stream of legal decisions confirms that such court-ordered treatment is illegal.

Every Federal Circuit Court (federal appeals court) and state supreme court that has ruled on such coercion has declared that the 12 Steps are religious in nature, and that it violates a parolee’s or probationer’s First Amendment rights for a court to require AA attendance when the 12-step philosophy violates the individual’s belief system.

Perhaps you didn’t believe that in a major American city in 2016, a court—nay, a drug court—could force people into AA against their belief system, with no sense that this was illegal, inappropriate, or ignorant of other options?

In fact, it remains standard practice.

We must realize that the American 12-step-treatment monolith, thought to be so facilitative and appealing to millions of people—and I have often lamented its cultural dominance—couldn’t operate to anything like its current extent without constant threats of denial or withdrawal of legal freedom, of custody of children, of licensure or employment, of medical care, of family support.

In the meantime, drinking problems, drug addiction and drug deaths in America continue to grow unabated, with our only response being more of the same.

Source: American Gulag: The Five Ways Hundreds of Thousands of People Are Coerced Into Rehab and AA | TheInfluence

However, I’ll also deeply regret that people in the program persuaded me to give “tough love” a try.

The tougher I became, the worse Wyatt and I fought and more sneaky he became. He lied, stole, bullied and badgered me. And I was consistently guided to hold my boundaries, to kick him out of my home before I let him call the shots.

There’s a reward/shame element to the 12­-step philosophy. You get a chip when you do well. You start from square one when you “relapse.” After his anti­-extended care outburst, Wyatt was promptly bumped down a level and his phone privileges were taken away. In retrospect, this seems like nothing but pure punishment.

I have two very close friends whose sons died of heroin overdoses. When we talk, it’s often about our pain and anger over the rehab racket. And it was one of them who first told me about a different type of approach, known as “harm reduction,” that opened a bright new door for Wyatt and me.

“Harm Reduction means taking control—of your use of drugs or alcohol, of the damage that use does to you, of the harm your use causes others, and how you live your life,” write Patt Denning, Jeannie Little and Adina Glickman in Over the Influence.

According to this philosophy, abstinence is not required to be the goal—moderation, a reduction, or simply safer use are also seen as valuable positive outcomes. Importantly, individuals are encouraged to set their own goals, rather than having them imposed by others.

Substance use disorders don’t have to be viewed as lifelong diseases. And within this framework, many therapies, such as Cognitive Behavior Therapy (CBT) or Dialectical Behavior Therapy, process groups and individual counseling can be utilized. It does not hold that someone experiencing drug-­related problems must hit “rock bottom”—quite the contrary.

After a couple of sessions with a harm reduction counselor, Wyatt agreed to go to a SMART Recovery rehab in California. SMART Recovery support groups are abstinence-­based, but they recognize that not everyone walks in the door with an abstinence goal, and everyone is welcome. They don’t require the use of terms such as “addict” or “alcoholic”—in fact, these are discouraged. The overarching philosophy is one of empowerment and the use of scientifically proven tools.

When Wyatt returned home he continued to see his therapist. One day he described his cravings to me, and how marijuana helped them. I was still in abstinence­-only mode, but then a light switched on: If he found that using cannabis could help his PTSD and keep him off other, potentially much more harmful stuff, so be it.

I was very reluctant at first. But I considered a dear friend of mine who has acute lymphoid leukemia, and who treats her pain and nausea with cannabis. I decided I had nothing to lose.

It works. For Wyatt, it alleviates the anxiety and panic he experiences and assuages most (if not all) of his cravings for dex.

Last week, Wyatt commented that it had been a full year that he had not been in a hospital, in jail, on probation or in a rehab—the first full year since 2009.

I am certain that had I continued on the “tough love” path, he’d be dead or in jail. I am also certain that in addition to the trauma of my parents’ deaths, there was considerable additional trauma as a result of the application of certain Al-Anon principles.

I no longer attend Al-Anon. I wish I could comfortably and honestly share in meetings about the benefits of marijuana, but I can’t. My friend whose son died has told me she’d have been more than willing to let her son smoke some marijuana to keep him alive. She feels she has learned too late about harm reduction.

I can no longer tolerate the sobs of a parent who has tossed their child on the street in the name of “tough love” and “hitting rock bottom.”

I now know that there’s a better way.

Source: How I Learned That “Tough Love” Was Failing My Son—And Found Something So Much Better | TheInfluence

Fully buying into the program requires desperation, in other words, and to “help” addicts get to that desperate point is to help them recover: “From this perspective,” writes Szalavitz, “the more punitively addicts are treated, the more likely they will be to recover; the lower they are made to fall, the more likely they will be to wake up and quit.”

Szalavitz explains that this is a totally pseudoscientific concept — the founders of A.A. embraced it as dogma but were not in a position to test it scientifically. And even they realized, on some level, that “hitting bottom” was it was a bunk idea, simply because some A.A. members would recover before thoroughly screwing up their lives. A.A. had to introduce the conceptual trick of “high bottoms” — some people hit “bottom” at a relatively high point, in other words — to account for this.

“Misinterpreted ideas taken from 12-step-based rehabs are integrated with the criminal justice system and are part of the belief system that quietly upholds current policies. They are deeply embedded … in nearly every public and private system that addresses addiction.” Specifically, 12-step programs “are now a required curriculum in at least 80% of American addiction treatment programs.” And since many people get referred to these addiction programs via court orders, countless vulnerable people are shuttled into programs that embrace a totally false, harmful view of what addiction is. In many cases, drug-court advocates argue against treatment and in favor of harsh punishment, simply because it fits into the 12-step, “bottoming out” framework — a bare prison cell certainly feels more like “hitting bottom” than a treatment program.

Forcing patients to hit bottom had results that were, in retrospect, predictable: It gave rise to “attack therapy” in programs like Synanon, launched in 1958, where “the idea was to demolish the ego, using intimate secrets people revealed to find their weak spots and try to obliterate the ‘character defects’ believed to be found in all people with addiction.”

But what is clear is that these ideas all fly in the face of what the literature shouts at us about treating addiction: that it’s best done by providing addicts with empathy, support, and healthy social networks — not by snatching these vital lifelines from them.

But throughout her book, Szalavitz argues, and argues compellingly, that when it comes to “hitting bottom” and so many of the other pseudoscientific approaches to fighting addiction, the actual goal — or part of it, at least — has always been to marginalize the addict, to set them apart and humiliate them. There’s a deep impulse to draw a clear, bold line between us, the healthy people, and them, the addicts. What clearer way to emphasize that divide than to cast them down into a rock-bottom pit, away from the rest ofus?

Source: The Tragic Myth of Addicts ‘Hitting Rock Bottom’ — Science of Us

I think that 12-step programs are fabulous self help. I think they can be absolutely wonderful as support groups. My issue with 12-step programs is that 80 percent of addiction treatment in this country consists primarily of indoctrinating people into 12-step programs, and no other medical care in the United States is like that. The data shows that cognitive behavioral therapy and motivational enhancement therapy are equally effective, and they have none of the issues around surrendering to a higher power, or prayer or confession.

I think that one of the problems with the primary 12-step approach that we’ve seen in addiction treatment is that because the 12 steps involve moral issues, it makes people think that addiction is a sin and not a disease. The only treatment in medicine that involves prayer, restitution and confession is for addiction. That fact makes people think that addiction is a sin, rather than a medical problem. I think that if we want to destigmatize addiction, we need to get the 12 steps out of professional treatment and put them where they belong — as self-help.

Source: ‘Unbroken Brain’ Explains Why ‘Tough’ Treatment Doesn’t Help Drug Addicts

The Troubled Teen Industry

Island View — which housed more than 100 children at a time, aged 13-17, and charged parents at least $10,000 a month — caused lasting damage to its students, a dozen of them told HuffPost. Former residents said the staff tormented and abused them — pitting teens against each other, physically restraining them, secluding them, medicating them with high doses of powerful antipsychotics and forcing them to sit without speaking for hours or days at a time.

But there’s little evidence that “tough love” techniques such as isolation and humiliation actually work. And the basic setup of residential treatment facilities lends itself to abuse, critics of the industry argue.

“If you have an institution where you have vulnerable people, abuses of power will almost always occur unless you have really strong safeguards against them —especially if you have vulnerable people who can’t contact the outside world,” said Maia Szalavitz, a journalist who wrote a book, Help at Any Cost, about the troubled-teen industry. “That in itself is a recipe for abuse.”

Despite this record of abuse — which journalists have been writing about for decades — parents upset by their children’s treatment at facilities like Island View often have just one option: lawsuits. “It’s one of the most horrendous things,” said Thomas Burton, a Utah attorney who has helped parents sue the centers. “The state isn’t going to prosecute these RTCs, and local law enforcement agencies aren’t going to impair the enormous amounts of money being brought into local communities. I mean enormous amounts of money — they’re cash cows. So where else can [parents] turn?”

Even solitary confinement — which President Barack Obama has banned for juveniles in federal prison — is permitted at many private treatment centers.

Island View and similar facilities demand one thing from students: absolute compliance.

Compliant children were rewarded with special privileges, like trips outside the facility. Noncompliant children were punished with physical restraint and isolation. They were all expected to participate in group “therapy” sessions that required them to complain about and attack each other. Many of them were medicated with high-dose antipsychotics.

Demands for compliance began the moment students arrived at Island View. Staff strip-searched new students.

“Long-term treatment facilities are like … a jail without having done anything illegal,” said 25-year-old Michelle Lemcke, who attended Island View in 2006.

Pysically restraining students and pitting them against each other weren’t the only ways Island View staff had to enforce compliance.

Island View’s resident handbook forbids “any form of sexual acting out … including note writing.” So when Graeber passed a note to a boy in her class one day — and locked eyes with him — she was immediately sent to the Yellow Zone.

Students in the Yellow Zone had to sit silently in a white plastic lawn chair at a desk in a hallway for hours — or days.

Graeber and others said they were often given the maximum sentence: 72 hours of isolation and silence.

“These kids were being used as damn lab rats,” he said. “Poor kids are falling asleep in class, getting in trouble, and they’re always so thirsty — mouths super dry. … All they did was pass pills. But if a kid was sick or throwing up from the medication, they wouldn’t do much else but give you a Sprite and watch you.”

Then she was placed in a Yellow Zone variation called “Individual Focus” — which included sleeping in a brightly lit hallway — for more than two weeks. As an additional punishment, Graeber said she was not allowed to speak for 58 days.

Parents sometimes forget that “troubled teen is not a diagnosis,” said Szalavitz, the journalist who wrote the book on the industry. “If your kid has behavior issues, generally the first thing to do is get a psychiatric evaluation — somebody who is independent, not an educational consultant, no affiliation with any industry — and figure out what the heck is going on.”

Moreover, the rote compliance these places demand is not a useful coping strategy for life outside an institution, Burnim said. “You can teach them to be compliant in an institution because they get the reward of … getting out,” he explained, “but once they get out, it’s the same old problem, and they haven’t learned how to better manage their condition.”

But the gold standard for treating most disturbed children is giving parents the support and services they need to keep their kids with them. There is a “virtual national consensus among people in the mental health field that children with mental health difficulties and behavioral problems should be treated at home,” Burnim said.

Source: The Troubled-Teen Industry Has Been A Disaster For Decades. And It’s Still Not Fixed

Be compliant. Be compliant. At all times, be compliant.Don’t ever give him a reason to break you.

Source: “Residue”: an excerpt from Deirdre Sugiuchi’s book Unreformed | NUVO News

Some alumni were strongly sedated while performing physically strenuous and hazardous tasks. While under drugs such as Lithium and Haldol they recount bizarre hydrotherapy sessions with buckets and hoses, with water sometimes used to make breathing difficult. They were put on work projects using pick axes and made to lift and carry large boulders and logs. They chopped wood and cut grass with machetes, despite safety warnings on medication labels to refrain from such activities.

Deirdre’s criticisms of New Horizon’s treatment methods are unflinching — “Children, particularly traumatized children, need love. New Horizons is completely reckless in their care of children. They believe that in order to enact change, you must traumatize children. I’ve known so many whose lives have been negatively impacted by that organization. NHYM calls [itself] Christian, yet refuses to practice basic compassion or radical empathy. I imagine this is directly related to the way many of the people who ran New Horizons were raised. You have this unending cycle of abuse, which just needs to stop.”

Controlling communication is one of the most effective methods for creating a sense of helplessness and despair. “The effect of complete control over student’s lives in the program came at a price.” She continued to say, “Once you have control of all communication, no one questions when you interrogate someone. When you torture them physically, no one blinks an eye. When you restrict their access to food and water and sleep people accept it.”

Source: Losing Her Religion: NHYM alum describes the torture of “teen treatment” | News | NUVO News

Cannabis and Harm Reduction

Using data on all prescriptions filled by Medicare Part D enrollees from 2010 to 2013, we found that the use of prescription drugs for which marijuana could serve as a clinical alternative fell significantly, once a medical marijuana law was implemented. National overall reductions in Medicare program and enrollee spending when states implemented medical marijuana laws were estimated to be $165.2 million per year in 2013. The availability of medical marijuana has a significant effect on prescribing patterns and spending in Medicare Part D.

Source: Medical Marijuana Laws Reduce Prescription Medication Use In Medicare Part D

The researchers found that in states with medical marijuana laws on the books, the number of prescriptions dropped for drugs to treat anxiety, depression, nausea, pain, psychosis, seizures, sleep disorders and spasticity. Those are all conditions for which marijuana is sometimes recommended.

If the trend bears out, it could have other public health ramifications. In states that legalized medical uses of marijuana, painkiller prescriptions dropped — on average, the study found, by about 1,800 daily doses filled each year per doctor. That tracks with other research on the subject.

Marijuana is unlike other drugs, such as opioids, overdoses of which can be fatal, said Deepak D’Souza, a professor of psychiatry at Yale School of Medicine, who has researched marijuana. “That doesn’t happen with marijuana,” he added.

Source: After Medical Marijuana Legalized, Medicare Prescriptions Drop For Many Drugs : Shots – Health News : NPR

A 2002 review of seven separate studies involving 7,934 drivers reported, “Crash culpability studies have failed to demonstrate that drivers with cannabinoids in the blood are significantly more likely than drug-free drivers to be culpable in road crashes.” This result is likely because subject under the influence of marijuana are aware of their impairment and compensate for it accordingly, such as by slowing down and by focusing their attention when they know a response will be required. This reaction is just the opposite of that exhibited by drivers under the influence of alcohol, who tend to drive in a more risky manner proportional to their intoxication.

Today, a large body of research exists exploring the impact of marijuana on psychomotor skills and actual driving performance. This research consists of driving simulator studies, on-road performance studies, crash culpability studies, and summary reviews of the existing evidence. To date, the result of this research is fairly consistent: Marijuana has a measurable yet relatively mild effect on psychomotor skills, yet it does not appear to play a significant role in vehicle crashes, particularly when compared to alcohol. Below is a summary of some of the existing data.

The results to date of crash culpability studies have failed to demonstrate that drivers with cannabinoids in the blood are significantly more likely than drug-free drivers to be culpable in road crashes.

“Cannabis leads to a more cautious style of driving, but it has a negative impact on decision time and trajectory. However, this in itself does not mean that drivers under the influence of cannabis represent a traffic safety risk. … Cannabis alone, particularly in low doses, has little effect on the skills involved in automobile driving.”

1. There is no evidence that consumption of cannabis alone increases the risk of culpability for traffic crash fatalities or injuries for which hospitalization occurs, and may reduce those risks.

In contrast to the compensatory behavior exhibited by subjects under marijuana treatment, subjects who have received alcohol tend to drive in a more risky manner. Both substances impair performance; however, the more cautious behavior of subjects who have received marijuana decreases the impact of the drug on performance, whereas the opposite holds true for alcohol.”

Evidence from the present and previous studies strongly suggests that alcohol encourages risky driving whereas THC encourages greater caution, at least in experiments. Another way THC seems to differ qualitatively from many other drugs is that the formers users seem better able to compensate for its adverse effects while driving under the influence.”

Source: Marijuana and Driving: A Review of the Scientific Evidence – NORML.org – Working to Reform Marijuana Laws

The reduced rate of opioid-related fatalities translated into about 1,700 fewer deaths in 2010 alone. The researchers suggest several possible explanations for this effect. “Patients with chronic noncancer pain who would have otherwise initiated opioid analgesics may choose medical cannabis instead,” Bachhuber et al. write. “In addition, patients already receiving opioid analgesics who start medical cannabis treatment may experience improved analgesia and decrease their opioid dose, thus potentially decreasing their dose-dependent risk of overdose. Finally, if medical cannabis laws lead to decreases in polypharmacy—particularly with benzodiazepines—in people taking opioid analgesics, overdose risk would be decreased.”

That last possibility could be more significant than you might think, since opioid-related deaths typically involve mixtures with other drugs, with benzodiazepines playing a substantial and increasing role. Bradford and Bradford found that medical marijuana laws were associated with decreases in prescriptions for drugs used to treat anxiety and sleep disorders. Benzodiazepines are commonly used for both purposes.

“We find fairly strong evidence…that states providing legal access to marijuana through dispensaries experience lower treatment admissions for addiction to pain medications,” Powell et al. write. “We provide complementary evidence that dispensary provisions also reduced deaths due to opioid overdoses….Our findings suggest that providing broader access to medical marijuana may have the potential benefit of reducing abuse of highly addictive painkillers.” Like Bachhuber et al., they found that the longer medical marijuana was legally available, the bigger the apparent benefit.

Source: Medical Marijuana Replaces More Dangerous Drugs – Reason.com

Cannabis is the least harmful way for we humans to cope with the burdens of sentience, senescence, and mortality. Cannabis is popular in STEAM cultures, at least the ones I’ve inhabited. It is part of the process of living, creating, and coping. I think the neurodivergent have long used it to regulate and cope in a world that does not accommodate. If your neurodivergence is accompanied by tics, seizures, paresthesia, fasciculations, panic, anxiety, or self-harming stimming, as but a few examples, then cannabis is a tool and ally. There are as many human operating systems as there are humans. The endocannabinoid system is a useful interface to our operating systems for which we have a natural, easy-to-grow key. All humans and their mammalian kin share this interface and this plant. We plucky prometheans figured out how to decarboxylate with fire.

Because, the drug war. The drug war preys on and abuses the different and the powerless. It puts neurodivergent kids in pipelines to prisons and foster systems where the incentives are to drug minds into compliance so that bodies can be more conveniently warehoused and souls more conveniently iced. The great many of us using cannabis to medicate and regulate are under constant threat of violence, humiliation, and confinement  in inhumane jails and prisons. The drug war’s perverse notions of addiction, addicts, and coping limit our vocabulary, stifle our empathy, and harm us all. The drug war, zero tolerance, and compliance culture are enemies of neurodiversity. Cannabis is a friend and a lever for change.

Source: On cannabis and neurodiversity

“The Silk Road website was in many respects the most responsible such marketplace in history, and consciously and deliberately included recognized harm reduction measures, including access to physician counseling,” he wrote. “Transactions on the Silk Road website were significantly safer than traditional illegal drug purchases and included quality control and accountability features” that kept purchasers “substantially safer” than regular drug purchases.

Many reformers, myself included, have long been highlighting the forward-thinking benefits of Silk Road and the ways it began to slowly revolutionize drug sales around the world. For instance, it provided a platform that could allow indigenous growers and cultivators around the world to sell directly to the consumer, potentially reducing cartel participation and violence… None of the transactions on Silk Road, for instance, resulted in women drug buyers being sexually assaulted or forced to trade sex for drugs, as is common in street-level drug transactions. Nor did any Silk Road transactions result in anyone having a gun pulled on them at the moment of purchase.

In his declaration, Caudevilla testifies that the site “espoused a harm reduction ethos which was reflected in the individual buyer-seller transactions on the site and in the community created on the site’s forums.” That community “enabled some site participants to reduce, if not entirely eliminate, their drug use.”

Caudevilla participated on the Silk Road forums for seven months and states that he “never came across even a single report of a Silk Road-related drug overdose.” Ulbricht’s lawyers point to the lack of such a “report” as a telling fact, although one wonders which section a user who had overdosed was expected to post in.

Source: Ulbricht’s lawyer: Silk Road was “the most responsible” drug market in history | Ars Technica

Supervised Injection

The more we degrade and ostracize people who inject drugs, the harder it is for them either to quit using their painkiller or to use it in a less risky way. When marginalized drug users walk through the doors of a supervised injection facility, the medical staff often become the only people in their lives who believe in them.

SIF staff may administer naloxone to stop clients from dying, but it is the human connections they forge that may give their clients the will to live.

Source: Supervised Injection Facilities Save Money and Lives: My Research Shows They’d Work for San Francisco | TheInfluence

The problems presented by injection drug use are legion, but creative solutions exist. One is the provision of safe drug-use rooms. Cities as far-flung as Vancouver, British Columbia, and Paris and Berlin have opened safe, well-lit rooms where addicts can get clean needles and other equipment without fear of incarceration. In New York State, Ithaca and Manhattan are considering similar initiatives. Such facilities can also connect addicts to needed services like preventive testing, acute care and treatment for addiction.

Safe drug-use rooms are typically designed to help keep addicts out of the hospital, but they could work for addicts within hospitals. A safe place to inject for addicted patients in the hospital could reduce conflict with staff, protect patients and providers from dirty needles and other drug hazards, and enable patients to receive respectful, high-quality care when back in their hospital beds. Safe drug-use rooms could also offer treatment for addiction, a step often neglected in hospitals.

The creation of these rooms for hospitalized addicts won’t be easy. There will be legal liability concerns, and hospitals must safeguard against the risk of overdose or unseemly behavior. It will be worthwhile to tackle these issues if it enables the provision of compassionate care for at-risk patients whose treatment would otherwise be endangered by conflict with providers.

Source: Let Opioid Users Inject in Hospitals – The New York Times

More

Identity First

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“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.

Only when people get to choose their own labels will we get anywhere toward building an equitable culture.

Source: Using “Correct Language” And “People First” by Ira David Socol — Bowllan’s Blog

I’m autistic, not a person with autism. Autistic is my identity.

Identity first language is common among social model advocates. When hanging out in social model and neurodiversity communities, identity first is usually a better default than person first.

There’s a language gap between self-advocates and the institutions that claim to represent them. There’s a gap between parents and their #ActuallyAutistic and disabled kids. There’s a generational gap in the disability movement. This is confusing for those trying to be allies. The articles below offer perspective and advice on identity first and person first language from self-advocates.

But please realise this: when autistic adults offer their experiences or insight, consider listening. We do not speak for your child, but we’re not really all that different from them. Telling us we’re “not autistic enough” insults us and trivialises the hardships many of us have endured. Hardships that, yes, may be very different from what your child might experience, but hardships nevertheless. I’ve earned the right to label myself as autistic. It explains everything. It is not all that I am, but it defines so much of who I am.

And that is why, for me at least, the identify label comes first. That I’m still a person should be obvious.

Source: Dear Autism Parent | The Misadventures of Mama Pineapple

When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes — but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?

Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.

So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.

Source: The cognitive dissonance of “person-first” references to #autistic people – Happy, Healthy Autist

Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.

Disability is only negative because society makes it so. For sure, there are negative aspects of my disability. (For the sake of simplicity, I’m focusing solely on my physical disability, which is both the most visible and the most integrated into my being.) Chronic pain and fatigue are no picnic. But for the most part, my disability is just another thread in the tapestry of my life. Pull it and the whole thing might unravel. Pull it and you might get an ugly hole where something beautiful once was.

Identity-first language is founded upon the idea of the social model of disability. In a nutshell, the social model says that though our impairments (our diagnostic, medical conditions) may limit us in some ways, it is the inaccessibility of society that actually disables us and renders us unable to function. The most basic example is wheelchair accessibility. If I am using my wheelchair and I can’t go to a restaurant because it doesn’t have a ramp, am I disabled by my cerebral palsy or am I disabled by the inaccessibility of the restaurant?

If that restaurant has a ramp, I am able to function perfectly within that situation. I am able to go in, sit at a table, order my food, eat it, and pay, just like everyone else. My wheelchair is not the problem. The inaccessibility of the restaurant is. Saying that I am disabled more accurately highlights the complex biosocial reality of disability. I am not merely a person existing with a label; I am constantly disabled and enabled by the interplay of my body and the environment.

Source: I am Disabled: On Identity-First Versus People-First Language

Taking a cue from the radical Deaf community, ANI members began to refer to themselves as “Autistic” instead of saying that they were people with autism. “Saying ‘person with autism’ suggests that autism is something bad—so bad that it isn’t even consistent with being a person,” Sinclair observed. “We talk about left-handed people, not ‘people with left-handed- ness,’ and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality’ . . . It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”

Source: The Dawn of Autistic Space – Excerpt from NeuroTribes – Wrong Planet

In the case of “People First” language for those with disabilities , what we have is not belief in linguistic emancipation, but a desire to “change something” in order to make educators feel responsive. Special education services haven’t changed much at all in the past 40 or 50 years – we use the same deficit model, we use the same types of assessment, we still flail around with school-generated solutions which foster dependence – but we can see we have “evolved,” no retards, no cripples, no morons, hey “we’ve changed since the bad old days.”

But disability remains a social identity. To work from Tom Shakespeare, it is the intersection of ability and the social structure. There is no such thing as a legitimate way to define “normal.” After all, if there were, the bizarre global minority of humans without black hair and brown eyes would be considered freaks. So, society defines certain people as outside of normal, and they do that with words.

For some groups, the hyphenation strategy is reached, be it “Scotch-Irish” or “African-American” or even “Student-Athlete,” but for others, where a real belief in pathology remains, we keep the “person with” structure. A student with the swine flu. A student with cancer. A student with a learning disability.” We don’t hyphenate any of those because we do not accept them as cultural identities, rather, we view them as illnesses.

So call me “dyslexic,” and call me “multi-attentioned” (or something), but stop pathologizing me. I don’t “have” these things, I “am” these things, because your society has made it that way.

I believe that we have to challenge accepted strategies and ideas. And whether you call it “Normalism” or “Disablism” we need to understand how narrative impacts cultural belief. If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue. So, since you treat me as if I am “retarded,” please don’t hide behind your nonsensical, “Student with Learning Disabilities.” That language might make you feel better, but it does nothing for me.

As long as you consider one way of doing things “normal,” you will demean me and treat me as less than fully human. What I was trying to say in this post –in a way which would provoke conversation – was that the very concept of “accommodation” is so very wrong, because it is based in disablism – the belief that I and others are not, and will never get to be, “normal,” unless “you” cure me by making me like you.

“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.

Only when people get to choose their own labels will we get anywhere toward building an equitable culture.

Source: Using “Correct Language” And “People First” by Ira David Socol — Bowllan’s Blog

When ABA proponents tell parents that only several hours a day of relentless compliance training can “make us fit for society”, they are not seeing a person. They are seeing a problem, a defect. Yet they insist on Person First Language.

When we are abused, and murdered, the perpetrators don’t think we are “much more than autism”. They use Person First Language and forget our humanity.

Or maybe they are trying to beat, stab, suffocate or shoot “the autism” out of us.

When the media blame us for our own murders, by pointing out how “tragic” and “pitiful” our lives are, they use Person First Language to point out how non-persons we are. This is dehumanization.

When the media and some “experts” speculate that a mass murderer might be Autistic, they use Person First Language to say autism makes people evil. To them, that’s all we are.

Person First Language is not about “seeing a person before the diagnosis”, or about “seeing much more than the diagnosis”.

Person First Language is about putting as much distance between the person and “the autism”. It is the opposite of acceptance.

It is like a contest to see how many ways one can talk about Autistics without using the word “Autistic”.

This is how Person First Language proponents refer to us:

“Person with autism”

“Person has autism”

“Person on the autism spectrum”

“Person with a diagnosis of autism spectrum disorder”

Each time, they come up with a longer description that starts with “person” and ends with “autism”.

It would be much more inclusive, and respectful of our voices, to simply say “Autistic”. It is simple and direct. It does not waste words, it is easily understood. More importantly, it is the most accurate description of who we are.

Source: The Gymnastics of Person First Language • Ollibean

In that wave of claiming who we are, from our perspective—in our proclaiming of what it is actually like to live as an autistic individual—many autistic self-advocates have embraced the word ‘autistic.’ In this way, we are not running from the degradation and falsehoods, but proudly proclaiming: “I am autistic.” It may seem counter intuitive. But indeed, the act of accepting the word “autistic,” in and of itself, makes something once untouchable—now held. For you see autism is not a disease—though many think it so, or at maximum treat autism like a plague to be eradicated.

The issue we take, in most circles of Aspergerians and Auties, is with the trials and tribulations parents face and share publicly in raising such “anomalies” (children with autism). Interestingly enough, if you listen with intent, you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism. We aren’t declaring how hard it is to be a parent of a child with autism. Nor are we seeking sympathy. We understand what our child is experiencing. We understand the torment of living in a world, where you not only feel like you don’t belong, but are told from the authorities that be (parents included) that your condition, your being, your very existence has “affected” everyone around you.

I am defined by autism because I want to be, because by embracing my autism I am embracing myself fully. I cannot separate the way my brain works from the rest of me. I leave it up to my son about how he wants to define himself. I will never tell him how to perceive autism. I imagine his perception will be ever-changing.

I have not and will not proclaim my family was affected by my son’s autism; nor will I say my son is affected by the trials that come with autism. There is not some outside boogeyman disease, illness, or even condition making our life hard. Life is just hard, sometimes

Source: “Affected” by Autism – Everyday Aspie

When you use person-first language, you are literally separating me from my identity, deliberately distancing me from an integral aspect to who I am. It feels like someone is dissecting me.

There’s this idea that we’re given more respect if we separate our disability or disabilities  from our personhood, that the more distance we place between ourselves and our disability, the more respect we’re given. This very idea is rooted in ableism.

Also important to note is that whether I’m called a Disabled person or a person with a disability, I am treated with the same level of disrespect.

When people continue to separate our disabilities from our personhood, they aren’t thinking about how our disabilities impact our personhood and how its viewed by others.

My friend Eb on Twitter worded it best, people shouldn’t need to use person-first language in order to be reminded that we’re human beings deserving of respect and rights and that we also have other identities.

I think that when people insist on saying “but you’re a person first!” and that people don’t acknowledge my disability first, that can lead to accommodations being an afterthought. When folks continue to separate my disabilities from my personhood, they aren’t thinking about what accommodations I need because they’re too busy trying to NOT think about my disabilities.

Source: 8 Reasons I Prefer Identity-First Language | Journey of IsaJennie

I don’t have autism. I am autistic.

That’s a thing I’ve been saying forfuckingever. And yet people keep insisting on pointedly saying that I and others “have autism”, are “individuals who happen to have autism”, are “living with autism”, or the ever popular “are individuals who just happen to have autism”.

Those are a lot of words just to deny a fundamental part of who I am, huh? It’s like people think if they wedge enough words between their identifier noun and the word autism, they’ll pry the condition off of us.

I know that y’all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not “living with autism” or “having autism” or “an individual who happens to have an intimate neurological understanding from living with autism” or whatever.

Source: Radical Neurodivergence Speaking: I don’t have autism. I am autistic.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest.

Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism).

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

Source: Dear “Autism Parents”, | Just Stimming…

“Autistic”, or “with-Autism”? I had to decide this for myself quite some time ago, after a great deal of thought, since there are positives and negatives to both methods. Finally, it boiled down to one factor: communication. What does each say to the listener? What does each say to me? And to what effect?

There are basically three groups who would, sensibly, prefer person-first language for autism. First, those who want to appear to care. Person-first language implies that you don’t blame the person-with-autism for being they way he is. That you are presupposing that the autism made him do it – whatever it is – and everyone should cut him slack. However, it also implies that he will so certainly fail to behave acceptably that you want to get out in front of his failure and forgive him in advance. Person-first language protects this group from having to internalize the idea that people can be radically different, while still deserving complete acceptance as they are. Or it’s simply a shorthand for “you’re damaged and inferior, but we forgive you.”

Second, there is group that believes that autism is something you catch. Like a virus. Or that it’s the result of an accident that suddenly injured you. They believe that it is simply a matter of time and effort before you are relieved of your autism, and that you will be just like you are now – just with all the problems removed and the nice parts remaining. This perspective is generally the result of failing to accept that your child is not just a poor substitute for the “real” child you believe you deserve. Person-first language protects this group from reality.

Finally, of course, there are those who, for their own practical reasons, prefer to preserve the illusion that autism can be removed from a person like a stain, leaving a pristine child ready to please his parents and join mainstream society invisibly. Some of these people have created images of themselves as beacons of hope with many books and speeches and postings, some as cutting edge researchers into a cure or the cause, some as major movers-and-shakers in the industry who may – any day now – slay the dragon. Person-first language preserves the delusion these people succeed within.

In all these cases, person-first language is used to hide the truth. And in none of these constructs is the autistic actually the primary beneficiary of the charade. Person-first language used as a default by anyone but the autistic himself is always selfish.

And always demeaning. The overwhelming message of “person-with-autism” is always “we wish we could really remove the autism from you, because it’s offensive, and we’re sure you’d be more acceptable without it.” Of course, it can’t be removed. At least not in the near future. So, until then, the autistic is stuck with his unacceptableness, no matter how kind and apologetic the label appears to others.

When you use person-first language, you create and then highlight a failing, a disappointment, a limitation. When I declare myself as an autistic, I acknowledge my difference as an acceptable part of my self-identification at the outset, and challenge you to do so too.

Source: Autism First (Again) – Turtle moon

I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity.

Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.

Source: Autistic Dad: On Language

Though it is common for medical and cure-focused communities to refer to an autistic person as a person with autism, such references are not the lingo of the greater whole of the Autistic Community.

In a nutshell, saying a person has autism may imply that the person is defective or that there is an inherent problem or sickness within the person. It also implies that autism can somehow be separated from the person.

Being a deaf person, as well as a member of the Deaf community, I prefer to be referred to as Deaf. This is preferable to me rather than the terms “hearing impaired” or “person who has deafness.” I don’t have deafness, I am deaf. For me, it is the same with autism. I don’t have autism, I am autistic. Since I do not view my deafness and autism as negatives, I use language that puts me in the direct light of both autism and deafness.

Source: Aspitude!: Autism-first Language

Saying “person with autism” suggests that the autism can be separated from the person.  But this is not the case.  I can be separated from things that are not part of me, and I am still be the same person.  I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me.  But autismis part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works.

Saying “person with autism” suggests that even if autism is part of the person, it isn’t a very important part.

Yet autism goes deeper than culture and learned belief systems.  It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies.  If I did not have an autistic brain, the person that I am would not exist.  I am autistic because autism is an essential feature of me as a person.

Saying “person with autism” suggests that autism is something bad–so bad that is isn’t even consistent with being a person.

It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.  I know that autism is not a terrible thing, and that it does not make me any less a person.  If other people have trouble remembering that autism doesn’t make me any less a person, then that’s their problem, not mine.  Let them find a way to remind themselves that I’m a person, without trying to define an essential feature of my personhood as something bad.  I am autistic because I accept and value myself the way I am.

Source: Why I dislike “person first” language by Jim Sinclair – Journals – CafeMom

In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.

Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

Person-first language opponents believe the best way to do this is by recognizing and edifying the person’s identity as an Autistic person as opposed to shunting an essential part of the person’s identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.

When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

Source: Autistic Hoya: The Significance of Semantics: Person-First Language: Why It Matters

“Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic.

These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.

Person-first language is a form of hypocrisy. Its strongest advocates are non-disabled parents and professionals, very well-meaning people who love their friends and family members and students deeply and who want to do right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objectionable, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”

Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with proper-adjective language (disabled or Autistic), using this language is highly unlike to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.

Source: Autistic Hoya: Identity and Hypocrisy: A Second Argument Against Person-First Language

Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.

Source: Could You Please Stop Insisting that People Have to Use Person First Language | crippledscholar

The golden rule of disability language has been that the person should come first in phrasing, preceding the condition that disables them. For example, people who have diabetes aren’t “diabetics” in respectful usage but instead are “people with diabetes.” But developmental conditions and those related to the brain are a trickier territory. With a nod to Francis Crick, if your brain is you and you are your brain (with some guidance from your endocrine system and your environmental inputs), then how appropriate or even rational is it to separate the person and the condition? Many people want to say “person with autism,” but to a lot of autistic activists, that phrasing is silly, like saying “Person with Brain.” For them, autism and brain and themselves are all one and the same. Autistic activist Jim Sinclair wrote in 1999 about instead using “identity first” language. The Autistic Self Advocacy Network also features an essay by autistic activist Lydia Brown, elaborating the concept. That doesn’t mean, of course, that every autistic person prefers that phrasing, and it’s always best to go with what any individual with a condition expresses as their preference.

Source: 7 Things You Need To Learn About Autism

For anyone who has been around Autistic communities, or is Autistic themselves, one of the first things they may notice is the different ways in which we are referred to. Some will  say, “has autism/person with autism/people with autism”, whilst others will say, “is [an] Autistic/Autistic person/Autistics”.

These descriptions cover two broad categories of language: identity-first language, and “person-first” language. In my blog (and outside of it), I pretty much entirely refer to myself as “Autistic”, rather than a “person with autism”. Some people wonder why I choose to “label” myself. These people have probably been taught most of their lives that person-first language is the correct way, and that anything otherwise is inherently disrespectful. This could not be further from the truth. I and many other Autistic advocates, particularly those who support the neurodiversity paradigm, use identify-first language. In fact, I, for one, see person-first language as disrespectful, demeaning, and ableist.

Something that I see a lot of well-meaning non-autistic folks say to their Autistic children, siblings, relatives, or friends, is “you are more than autism”, or, “you are not autism, you are still yourself”, or, “don’t let autism define who you are”. Many of these same people insist on using person-first language, because they deem it somehow superior.

Despite that these people mean well, and want the best for their children, these quotes, and “person-first language” are ultimately harmful and damaging: damaging to the child’s self-esteem, giving them the pressure to be “more than autism”, whatever that even means. It is also damaging to the rest of the Autistic community, implying that autism makes a person less. “Person-first language” was not created by Autistics to begin with.

The first claim, that Autism can be separated from the individual, is complete nonsense. Autism is the way our brains are wired. Autism shapes our perception, the way we see the world, as well as how we think and feel. A lot who talk about “curing” autism seem to forget that doing so would completely change who we are as human beings. We would no longer be the same person. Autism is SUCH an integral part of who we are, and to take it away, to take our minds and how we think away, would make us lose our personhood. Back when I used to hate who I was (again, because of people sending a subliminal message that autism is a bad thing), I thought back on what my life would be like if I was non-autistic. I realized that I would not be the same person at all. Sure, I may not have had some of the bad experiences I’ve had, but I would also not love the things I love, believe the things I believe, and I also would not have many of the skills and talents I possess; at least not to the same level. I would be a completely different, foreign person. I wouldn’t even recognize myself.

As many Autistic individuals have experienced, when I stopped hiding myself – when I no longer concealed the fact that I’m Autistic, and when I embraced that part of my identity, that is when I suddenly became a lot more confident in my abilities. I started to like myself, recognizing my strengths, while working on my shortcomings.

If an Autistic person asks me to use person-first language, I will respect their wishes and do so for them. However, we shouldn’t be teaching Autistic kids to distance themselves from their autism. We shouldn’t be telling them they’re “more than autism”. We should be telling them that they’re Autistic, and teach them to be proud of their identity and neurology, and celebrate who they are.

Source: Actually, I Do Let Autism Define Me: Identity-First Language – The Autistinquisitor

The neurodiversity approach has important implications when it comes to language. A lot of people (typically neurotypical people who are helping or caring for autistic people) support ‘person-first language’ to describe autism. This means referring to someone as a person before stating their disability, a “person with autism”.

You might have noticed that I do not use person-first language. What I use is called ‘identity-first language’. This means referring to autism as an aspect of someone’s identity, an “autistic person”.

People who support person-first language say that no-one should be defined by their disability, that they are a person before they are anything else. It sounds like a noble aim, and they generally have good intentions. The trouble is, the very idea that person-first language is necessary comes as a result of the medical model of disability. It’s bad to define a person by their disability if you think a disability is inherently a bad thing.

Identity-first language accepts that neurological differences and impairments are not inherently positive or negative, they are just aspects of a person’s identity. You wouldn’t dream of saying “a person with homosexuality”, would you? Because that implies that being gay is negative, as well as something that could even theoretically be separated from the person.

The neurodiversity approach says that being autistic is comporable to being gay. It’s an identity, and a natural and value-neutral aspect of human variation. And autistic people should be accepted and accommodated in the same way as gay people. If there are problems associated with being autistic (or being gay), like finding it difficult to communicate (or finding it difficult to get married) – those problems should be accommodated by society.

When you use person-first language, you are saying “Being autistic is entirely and inherently negative”, and “Being autistic makes you less of a person”, and “I have to be reminded that autistic people are human”. Please stop saying those things to us.

Source: Neurodiversity, language, and the social model | autisticality

After more than 20 years, when I was in my mid-40s, I left Independent Living Center work, partly because I wanted to explore disability culture and activism in other ways, especially online. One of the first things I found was that in the 2010s, the most interesting disabled people out there said that they were “disabled people,” or just “disabled,” and called it “identity first” language. This was in direct opposition to “person first.”

I was relieved. “Disabled” is much smoother to write and say than “person with a disability.”

The more I thought about it, “identity first” language started to again change how I thought about my disabilities. I stopped worrying about whether or not my disabilities “define” me, and started to embrace the fact that like it or not, I am part of a community, a shared identity. I’m disabled. And I do like it.

There are strong links between language about disability and thinking about disability, both in my own life and in the broader disability community. As tiresome as it can be to keep up with all the ways of thinking about disability language, it helps describe and shape who we are. Today, I find myself more comfortable with my disability identity than I have been since childhood, and much more empowered and proud.

Source: My Journey with Disability Language and Identity

See also,