Sunday, December 6, 2020

I’m Autistic. I Didn’t Know Until I Was 27. Article.




I’m Autistic. I Didn’t Know Until I Was 27.

Autism spectrum disorder is inseparable from who I am. I wish only that it hadn’t taken so long to find out.

For my entire life, I have found it very difficult just to exist.

In childhood photographs, tellingly, I’m almost always looking off camera. My little hands clenched, I’m rarely with other people and often engrossed in one of the few activities that made me feel safe. I’m also, in some, clearly distressed: A photo of me on the beach, eyes full of tears as I pull off my swimsuit, stands out. The textures of the suit, salt and sand on my skin made me feel like I was burning, but I stubbornly insisted on swimming in the sea anyway.

As an adult, the sights, sounds and smells of everyday existence still overwhelm me. I struggle with everything — from waking up to moving my body around to talking clearly — and I quickly get exhausted in other people’s company. I suffer from meltdowns where, until fairly recently, I would intentionally hurt myself. I had expected to grow out of being fussy or obsessive or angry, but I never did. My difficulties became a larger, less forgivable obstacle as I “grew up.”

In July this year, I finally understood why. At the age of 27, I was diagnosed with autism spectrum disorder and attention deficit hyperactivity disorder. I chased the diagnosis for five years and had to fight hard for it. It was, at times, dehumanizing and brutal: full of waiting lists, administrative errors, insensitive doctors and humiliating questionnaires that forced my entire life into a new, awkward perspective. But I also saw the things that I like about myself: my obsessive interests, my memory, my capacity for feeling. It forced me to realize, finally, that being autistic is completely inseparable from who I am.

Such a late diagnosis might seem unusual, but it isn’t actually that rare — especially for women. For a long time, it was dangerously assumed that we couldn’t even be autistic. Research now shows that autism in women is diagnosed both later than in men and much less often. That doesn’t mean fewer of us are autistic. It just means we’re overlooked.

In part that’s because the diagnostic criteria for autism spectrum disorder are biased toward how male children typically present. But primarily it’s because we learn to mimic others. By “masking” or “camouflaging,” we copy those around us, often losing who we are in the process. Rarely fully successful and psychologically taxing, it means autistic girls are read as neurotypical, if a little “off.” We occupy an awkward Catch-22: Our differences are alienating, so we hide them. But when we pursue diagnosis, we’re dismissed if we’ve been too successful at social camouflage.

At school I was often disruptive, fussy and poorly behaved. While I excelled at reading and writing, I got bored quickly. I was prone to walking off or misbehaving, and was often punished. My mental health spiraled, and I spent my adolescence acting out, losing friends and hurting myself in various ways.

Slowly but surely, I learned to hide who I was and make excuses for what I couldn’t conceal. As a teenager, my special interests — Lemony Snicket’s “A Series of Unfortunate Events,” emo bands, movies — were perceived as fandom; teachers saw my poor organization and social skills as rebellion and laziness. And as an adult, when I worked in bars the environment was so chaotic that nobody observed me too closely, and I was good enough at making cocktails that I got away with arguing with customers. The ability to hyper-fixate on my obsessions helped me get through school, university and postgraduate study.

Then I got a job in an office, and I quickly learned that my brain simply does not adhere to regular schedules or working patterns. Everything made it impossible to work: waking up early, the freezing temperature in the office, the noise, other people eating. I fell apart and stopped functioning. I went weeks without doing anything, feeling so overwhelmed that I wanted to crawl out of my skin.

The agony I felt sitting still for eight hours a day, pretending to feel comfortable engaging in small talk or putting forward ideas in meetings, was a physical pain. It often wore me out so much that I went to bed as soon as I got home. I had never before cared much that I was different — but for the first time, I saw the ease with which other people existed.

One day, after a particularly agonizing morning, I called my mom and asked her if she thought I was autistic. Her answer was an unequivocal yes. I went to the doctor — and was told I was probably autistic, but that the waiting list was so many years long that there was no point trying. (In Britain, where I live, unless you can afford to pursue a diagnosis privately, you have to wait until the National Health Service, which is overstretched and underfunded, can find time for you.) I got fired instead.

Two years later, I accepted another office job. I found myself again overwhelmed and failing to work within the structures everyone else seemed to thrive under. So again I pursued a diagnosis, hoping for help. I was told that unless I was a danger to myself, the support was not there. It was ironic: I had been a prolific self-harmer when I was younger, but because I had overcome those impulses, I couldn’t get the support I needed.

When lockdown hit, I found myself taking to loneliness with an ease I half-anticipated: no more public transport, stores or awkward socializing. But I knew how hard it would be to come out the other side, and I wanted to be able to explain why. I had spoken to a psychiatrist about a private diagnosis before; now in a slightly better position, I committed to the expense of a diagnosis. She and a colleague spent several hours assessing me over three days. The result was clear.

I expected to be ambivalent, but I wasn’t: I was euphoric. I told everyone. I was the same person I was the day before, the same person I’d always been, but with the terminology to explain myself and to find a community. After pursuing it for five years, the diagnosis gave me certainty, solidity and the strength to articulate my needs to others. I looked back on the past anew, seeing my own behavior through a softer lens and pinpointing where others could have been kinder. I wished only that I hadn’t lost so much of my life hating myself.

People often emphasize how difficult life is for autistic people. And that’s true: From the moment I wake up (late), every task I do — making phone calls, taking public transport, eating and socializing — feels more and more difficult. It’s like a video game with no end goal but to stay alive.

But the experiences I’ve found most traumatic were avoidable. Throughout my life, I have been bullied and cast out by people who became frustrated when I didn’t communicate in ways they expected. My face doesn’t move much and my pitch rarely changes, sure, but I am deeply passionate. It is baffling and deeply hurtful when I am called cold, rejected for expressing myself differently.

When I was growing up, I was as unkind to myself as other people often were to me: I called myself evil, cold, weird. I internalized the worst things anyone could say because I believed them. Looking back at that child now, and that disruptive teenager, I just want her to know that she is loved. I see her staring so intently at her books or her train set or her Game Boy and I wish I could tell her that she’s autistic — and that it isn’t only OK, but good.

Marianne Eloise (@marianne_eloise) is a freelance writer whose work has appeared in Vice, The Guardian and other outlets.
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Wednesday, November 18, 2020

Prison Is Even Worse When You Have a Disability Like Autism



When Drew Harrison was in prison, just sitting in his cell overloaded his senses. To dim the fluorescent lights, he covered the bulbs with toothpaste or paper. To mask overwhelming odors, he wrapped his uniform around his head.Once, when he asked to stay longer in the prison yard, Harrison, who has autism, said he was told he was being insubordinate and was put in restrictive housing. Another time, he said he requested placement in solitary confinement so he wouldn’t have to interact with people, which he found stressful.After two and a half years, Harrison, who had been convicted of sexually assaulting an ex-girlfriend, thought he would get out more than a month early from Greensville Correction Center in Virginia, because of good behavior. But because he had failed to sign up for a job while incarcerated earlier at another Virginia prison, he had forfeited his chance at early release, according to documentation from the Virginia Department of Corrections.Harrison’s autism made it difficult for him to grasp the rules, his mother, Judy Harrison, explained. Only after she lobbied a Virginia state legislator was her son’s “good time” reinstated; he was released in 2019. “I don’t know how someone with Drew’s diagnosis would have survived in prison without an advocate,” she said. “You can’t teach someone not to have autism.”The prison environment—with its loud, unpredictable noises, bright lights, unpleasant odors, complicated social dynamics and often byzantine bureaucracy—would be difficult for anyone to navigate, but experts say that it’s particularly challenging for autistic people and people with similar disabilities.The Americans with Disabilities Act—signed into law 30 years ago this summer—mandates that people with physical and developmental disorders receive equal access to programs and services provided by public institutions, including correctional facilities. But advocates for people with developmental disabilities have long argued that all too often, prisons do not fulfill that promise.One reason may be that many states don’t adequately identify prisoners with developmental disorders. The Marshall Project sent questions to all 50 state corrections departments asking whether and how they screen prisoners for developmental or intellectual disabilities. Of the 38 agencies that responded, 25 reported using screening protocols that several mental health and legal experts said don’t meet professional standards. Five states said they don’t screen for developmental disabilities at all.When developmentally disabled prisoners go unidentified, they are even less likely to receive services they are entitled to under federal law—such as help understanding prison rules or obtaining medications. That loss of assistance leaves them vulnerable to medical misdiagnosis, isolation in solitary confinement, denial of legal and educational opportunities, sexual abuse and bullying, prisoner advocates and relatives say.“It mirrors or echoes what goes on in society. People with disabilities are often hidden and not seen,” said Susan Politt, a supervising attorney at Disability Rights North Carolina, an advocacy agency. But behind bars, the situation can be even more dire. “They get out in worse condition than when they go in,” she said.Experts say that incarcerated people of color with intellectual and developmental disabilities are affected disproportionately because they are less likely than their White counterparts to be diagnosed before they enter prison.Developmental disability is an umbrella term for a group of disorders that start during childhood and restrict one’s ability to learn, speak, behave or physically develop; they include autism, cerebral palsy and language and speech disorders. The most common type is intellectual disability. It is generally accepted that 2 to 3 percent of people around the world have an intellectual disability, said Maggie Nygren, executive director of American Association on Intellectual and Developmental Disabilities.The proportion of people with developmental disabilities behind bars is likely to be higher than in the general population, research suggests. The Arc, a nonprofit that advocates for people with disabilities, estimates that between 4 and 10 percent of U.S. prisoners have an intellectual disability, a range supported by recent literature. In 2015, the Bureau of Justice Statistics reported that about 20 percent of prisoners mentioned having a cognitive disability, a category that includes developmental disability.But when The Marshall Project contacted state corrections departments, only four of the 25 states that shared their 2019 numbers reported that the population of prisoners with developmental or intellectual disabilities was in that range. The other 21 states that shared their population numbers said that prisoners with developmental disabilities made up less than 4 percent of the total prison population.One disability rights lawyer characterized those low numbers as implausible. “There’s no rational basis under which a prison population should have a lower percentage than a general population,” said Bill Van Der Pol, a senior staff attorney at the Alabama Disabilities Advocacy Project, who won a class-action lawsuit in 2014 on behalf of physically and developmentally disabled prisoners.Thirteen states told The Marshall Project that they did not track the population numbers or could not provide them.

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Wednesday, October 28, 2020

Low standards corrode quality of popular autism therapy

 Rapid growth and inadequate standards in the ‘applied behavior analysis’ industry may put vulnerable children in the hands of poorly prepared technicians.


When Terra Vance took a course to become a registered behavior technician (RBT) in 2015, she was trying to transition from a career as a teacher to one as a psychologist. To get the supervised hours she needed for her psychology license, she had taken a job working with mentally ill adults for a company in Lynchburg, Virginia.

Instead, her employer told her the company had a backlog of autistic children and wanted her to help with that caseload. The employer paid for her to get the RBT certification, which would qualify her to deliver what many researchers consider the gold-standard autism therapy, applied behavior analysis (ABA), under supervision to these children.

Vance completed the online course — a series of videos followed by quizzes from a company called Relias — over a weekend. She was intent on learning the material, she says, but found out later that other students cut corners, letting the videos play while they did other things and looking up quiz answers on their phones. It was easy to pass: If you failed a quiz, you could just re-watch the video and take it again.

Vance had spent 14 years teaching English to middle- and high-school students, and she had developed a reputation for helping autistic students. (She was diagnosed with autism herself in 2017.) But when she started accompanying another RBT on home visits, she felt unprepared, she says. Extra training she received from her employer — on privacy, patient rights and restraint training — did not add to her confidence. No one taught her how to change diapers or adequately manage aggression, she says, which she would have found more useful.

Vance also quickly became skeptical of the kind of therapy she was being trained to deliver. For example, she shadowed a more experienced RBT at the home of a 10-year old boy with autism and intellectual disability who had memorized entire movie scripts. Vance recognized that he was communicating with humor and nuance by choosing lines to recite in various situations. But instead of engaging with him through movie lines, she was told by her supervisors to reward the boy with candy or cereal for following commands and completing trivial tasks, such as stacking blocks.

“They were missing so much about this amazing human by just saying he was like a 3-year old,” says Vance, who now heads NeuroClastic, a nonprofit blogging platform about autism. After a few weeks of working with the boy, Vance was laid off and her supervisor was fired, she says.

The sprawling industry that has coalesced around ABA is causing frustration for many — technicians, clients and experts alike. Plenty of therapists in a wide range of settings, including schools, homes and clinics, do ABA well, and plenty of studies support its value, says Zachary Warren, a clinical psychologist at Vanderbilt University in Nashville, Tennessee. But ABA’s worth depends greatly on who is delivering it. And as autism diagnoses and demand for ABA have risen over the past decade, how to ensure people are qualified to deliver the therapy effectively has become a point of contention.

Six years ago, the Behavior Analyst Certification Board, a nonprofit corporation that establishes professional credentialing standards for behavior analysts, created the RBT qualification, largely, they say, to ensure uniform standards for the technicians who increasingly do much of the frontline care. Compared with higher levels of certification that call for at least a college degree, these paraprofessionals need only a high school diploma, a 40-hour course, a background check, an in-person assessment and, starting in 2016, a written test.

The new qualification was followed by a surge in the number of people certified to deliver ABA. Critics, however, have challenged the standards for being too lax. It takes hundreds of hours of training over months to qualify therapists to work independently with children, they say. “Forty hours? You’ve got to be kidding me. Put another zero behind that and maybe that would be closer,” says Jon Bailey, an ABA expert at Florida State University in Tallahassee.

And it’s not just the credentials that have come under scrutiny. On-the-job coaching and supervision are supposed to make up for gaps in the training, but some RBTs find that the agencies they work for do not provide much of either. Technicians describe checked-out or overworked supervisors, little guidance and high turnover, which harms clients along with ABA’s reputation. “The RBT is the hands-on person,” Bailey says. “They should have a lot of training, because if they mess up, you’re messing with people’s lives. This is not like somebody burned a hamburger or something.”

Yet, critics say, the agencies that hire RBTs often rely on a vast pool of undertrained labor. These businesses collectively train and employ tens of thousands of RBTs to work with children. “It’s being treated as a money grab in many places,” Bailey says. He estimates that there are hundreds, if not thousands, of these companies in the United States. Some are profitable enough that they have become popular buys for private equity firms.

Some experts are calling for more stringent certification standards. Others in the field — including Melissa Nosik, deputy chief executive officer of the Behavior Analyst Certification Board — maintain that variation in treatment quality exists in many fields. Training requirements evolve, they say, and the system is doing its part to help meet the demand for qualified people to deliver ABA.

In the meantime, families and therapists are left in a tough spot. “If you have a kid with autism, you’re desperate to get those services, and I don’t think you’re willing to wait until we figure out all of the right things about training, fidelity and implementation,” Warren says. “You want services now, and you want to be able to have a workforce that can deliver that.”

Beautiful moments:

The roots of ABA date back to the 1930s and the work of psychologist B.F. Skinner, who focused on concepts such as conditioning, reinforcement and responses to stimuli to explain human behavior. Skinner’s behaviorism theory arose around the premise that behaviors can be learned, and that learned behaviors can affect a person’s quality of life. ABA is essentially a method for teaching new behaviors, says Ronald Leaf, a licensed psychologist and director of the Autism Partnership, a California-based agency that provides autism services.

ABA can take various forms, including the Early Start Denver Model and pivotal response treatment. Its general aim is to teach language, social and other skills by breaking them down into small parts, often with rewards and a sense of fun worked in to boost motivation. Although scientific support for the method is not rock solid, studies stretching back for decades indicate that, when done well, ABA can facilitate learning and improve social communication, minimize challenging and self-injurious behaviors and improve daily functioning in people with autism, intellectual disability and attention deficit hyperactivity disorder, among other conditions.

Anecdotal reports of success abound, too. “It’s amazing when it’s done right,” says B. Lynn, a woman in California whose 20-year-old son was diagnosed with autism at around age 5. (Spectrum is withholding Lynn’s first name and her son’s name to protect their privacy.) The family has worked with several ABA agencies over the years. Her son used to vocalize loudly about 100 times a day, making it seem like he was minimally verbal, even though he can be chatty. With help from an ABA therapist, though, at age 14 his vocalizations dropped to fewer than five a day, and he was able to attend school with peers for the first time since he was 5. ABA therapists also helped potty-train the boy; they taught him to shower and eat more than one color of food. “From the ones with really good training who are really good people, we’ve seen huge, huge growth,” Lynn says.

When done well, ABA often looks like play, with learning happening through shared engagement in activities, Warren says. When he evaluates a child, he looks for opportunities to connect with the child through activities that dovetail with the child’s interests, he says. “If we have more moments of engagement like that, we have more moments to be teaching about language or different ways of playing or interacting,” he says. “Most parents are like, ‘Oh, yeah, absolutely. I want those beautiful moments that I know are real and tangible with my child.’”

“You’re messing with people’s lives. This is not like somebody burned a hamburger or something.” Jon Bailey

But many ABA therapists may not be trained to create such moments. In one notorious case from the 1970s, an applied behavior analyst in Florida abused adolescents with intellectual disability by beating them for running away, shaming them for lying and forcing them to masturbate if they were caught masturbating.

The majority of therapists are not abusive. Many are just not taught to adjust ABA to an individual child, which is critical to the method’s success. Part of the problem is that most RBT training courses teach formulaic, child-unfriendly techniques, as if delivering ABA were like following a recipe, Leaf says. For example, technicians might be taught to use simple instructions, such as “Do this,” instead of varying language and altering words to match a child’s ability to process complex instructions, such as “Do what I’m doing,” or “Can you copy me?”

Many courses teach technicians to do the exact same thing with every client, in the same sequence every time, Leaf says. They also advise the use of explicit rewards, such as candy, which can seem demeaning at times and don’t work as well as the positive feedback that occurs naturally through interaction. Vance was appalled that her RBT course instructed her to buy a clicker at a pet store. The course instructed technicians to use the clicker to reinforce desired behaviors in children, she says, just as pet owners might use it to train dogs.

Autistic adults who had ABA as children have criticized the therapy for forcing them to act in ways that made them uncomfortable, for pathologizing their neurodiversity and for being too scripted, inflexible and robotic. Parents say that a child can be discouraged by bad ABA, and that a lack of progress is harm enough, given the stakes and the cost. Over the years, Lynn’s son had a few therapists who talked down to him, she says, which irritated and frustrated him, so they did not last long. “We can see a definite difference when we don’t have great people.”

Leaf has testified in lawsuits related to ABA that included questions about legally ‘meaningful’ progress. One case, in which he served as an expert witness for a school district, involved a 9-year-old boy who was doing virtually identical tasks every day for five years and had made minimal progress in that time. His lessons never changed to accommodate his shifting needs or to respond to what was not working. “When I have a child at 9 o’clock in the morning, I’m going to do something different at 9:10, because good ABA adjusts to the learner constantly,” Leaf says. “You have to be well trained to do that.”

Rapid expansion:

Questions about qualifications have long been an issue for the field. In the 1970s, experts realized they needed uniform standards and a way to certify that therapists are qualified, says Gina Green, chief executive officer of the Association of Professional Behavior Analysts in San Diego, California.

In 1983, Florida pioneered the first state ABA certification program, and several other states adopted similar standards the following decade. In 1998, a behavior analyst named Jerry Shook, who worked at the Florida health department, created the national nonprofit Behavior Analyst Certification Board. The board developed credentials for a ‘board-certified behavior analyst’ (BCBA), which requires at least a master’s degree, and a ‘board-certified assistant behavior analyst’ (BCaBA), which requires a bachelor’s degree. They decided to develop a technician credential more than a decade later, Nosik says. In 2014, the board added an entry-level certification.

Alongside the credentialing efforts, the field has quickly grown in popularity, buoyed by a rise in autism prevalence. In the U.S., the ranks of BCBAs grew from fewer than 400 in 2000 to 16,000 in 2014, three-quarters of them working with autistic people, according to certification board data. By 2017, the board had anointed more than 34,000 RBTs worldwide. By October 2020, almost 83,000 people had received an RBT certification (and more than 42,000 had become BCBAs).

The swelling ranks of RBTs helped address a numbers problem, Warren says. A BCBA can directly serve only a small number of children. For example, at 20 hours a week per child, a BCBA can help only two children in a 40-hour week. With RBTs working under them, BCBAs can handle many more clients.

“When I have a child at 9 o’clock in the morning, I’m going to do something different at 9:10, because good ABA adjusts to the learner constantly.” Ronald Leaf

At the same time, state mandates for insurance coverage of ABA (all states now have them) have reshaped the industry, experts say, opening up the potential for greater profit for agencies that shift more hours and responsibility to RBTs. Whereas entry-level BCBAs earn about $60 to $80 per hour, according to several job postings, a typical RBT makes less than $20 per hour. At the same time, insurance companies reimburse ABA firms an average of $95 an hour for a BCBA, compared with an average of $65 an hour for an RBT.

Industry changes may have come with growing pains, as many RBTs have expressed concerns about their lack of supervision from BCBAs: Every year, 1,200 to 3,600 messages — from RBTs, BCBAs and families — pour into the ABA Ethics Hotline, which Bailey has run in one form or another for more than a decade. According to board regulations, RBTs should receive half an hour of direct supervision for every 10 hours of services (5 percent of their monthly hours). Supervisors also monitor therapy indirectly by reviewing daily progress notes, Green says. But the hotline regularly hears from RBTs who have not seen their supervisors in weeks, and sometimes months.

The hotline also hears from parents who are not happy with how RBTs interact with their children. One family installed a hidden camera, which showed their RBT repeatedly slapping their child in the face. “I hear from parents that say, ‘This person doesn’t seem to know what they’re doing.’ And then I hear from RBTs that say, ‘I wasn’t trained to do this; I’m not getting any help. I’ve only worked with, say, children with language problems, and now they’ve given me a teenager who’s aggressive,’” Bailey says.

RBTs regularly vent their frustrations on Reddit too. One reported having no in-person training and not knowing what to do with clients even after four months on the job. A case manager described a company that would “just hire anybody” and throw them into one-on-one situations with children without any supervision. Some children, the manager said, had not seen a supervising BCBA in six months. (None of the commenters responded to requests for interviews.)

Realistically, BCBAs could oversee a maximum of 5 to 10 RBTs at once (depending on who the clients are), given the time it takes to observe, provide feedback and complete paperwork, Bailey says. But many are assigned to manage 15 to 20 RBTs, he says, in part because there are too few BCBAs to go around: More than half of U.S. counties have no BCBAs at all.

RBTs can make choices that hurt families, says Catherine Lord, a clinical psychologist at the University of California, Los Angeles. Plenty of schools and agencies deliver high-quality ABA, she says, but she worked with one autistic child who was seeing 16 separate RBTs. None would commit to more than two hours a week, because they were paid hourly and if the client got sick or went on vacation, the RBT would lose that pay.

RBTs also sometimes leave clients if they feel unprepared and unsupported to handle that person’s difficult behaviors — a disruption that can hurt the client’s progress. When Shannon Des Roches Rosa’s high-support autistic son was 12, the family turned to an agency near their Silicon Valley, California, home. For the first couple of years, no technician the company sent lasted more than a few months. The family cycled through at least 10 technicians, says Rosa, who is senior editor of Thinking Person’s Guide to Autism.

“A lot of them didn’t have what it takes to work with a person who has a lot of autistic behaviors,” Rosa says. And the turnover and poor care took its toll. Rosa’s son was often miserable, which was stressful for Rosa. “Whenever there was a new therapist who arrived in the house, it was worse for me than having nobody there,” she says.

Quality control:

In the early days of ABA, researchers in the field never dreamed that outside companies would take it over and overhaul it in ways that would harm its reputation, Bailey says. “Right now, [ABA] is known as the gold standard for treatment of autism, and that’s because we have so much research on this,” he says. “But if you don’t translate the research into practice, and if you don’t monitor the practice, it’s not the gold standard anymore.”

The accreditation board for ABA continually reevaluates and revises credentialing standards, Green says, to ensure the bar is set sufficiently high. For example, in 2019, the board added a new certification requirement that RBTs must demonstrate certain skills on the job with clients instead of during role play with supervisors. And the mandatory eight-hour supervision-training course has been revised to include more details about how to effectively oversee RBTs.

There are scant data to support any benefits from ABA delivered by RBTs, Warren adds. “I think there’s a limited amount of information” about outcomes for children who work with RBTs, Warren says. “They’re probably not the ones that are making these huge gains or the big gains that we’re seeing in some of the studies for some of our kids.”

To boost the numbers of well-trained therapists, Leaf and his colleagues launched their own 40-hour RBT certification course in March 2020 that emphasizes flexibility and responsiveness instead of rigidity and script-following. Though 40 hours is less than ideal, Leaf and his coworkers worried that companies would not adopt a longer program. And to “eliminate the revenue stream of agencies that are providing horrible training,” he says, they also made their course free and available online with funding from Dara Khosrowshahi, chief executive officer of Uber, and his wife, Sydney Shapiro. In its first six months, more than 89,000 people around the world took it, Leaf says. They do not track how many students go on to become certified, but the number who have taken their course is already more than the total number of certified RBTs.

“Whenever there was a new therapist who arrived in the house, it was worse for me than having nobody there.” Shannon Des Roches Rosa

Leaf and his colleagues are advocating for changes at the Behavior Analyst Certification Board to increase RBT training hours to at least 80, and to adjust that training to reflect a more progressive, less protocol-driven approach. They are also studying training methods to see which styles of reinforcement, correction and instruction work best. Already, their work has produced surprises: For example, even though one-on-one services have long been considered the best way to deliver ABA, their research suggests that small-group interventions can work just as well for teaching basic language skills. And another small study showed that 32 two-hour sessions of their new flexible version of ABA can produce improvements in social behavior that persist for at least four months.

In a separate effort, the California-based Behavioral Health Center of Excellence has started offering accreditation for behavior analysis to organizations and companies that use high standards, says Bailey, who is on the center’s board of directors. When his students at Florida State University are looking for jobs, he tells them to look for companies with the Behavioral Health Center of Excellence certification to ensure they are working for high-quality employers. Families can do the same when looking for providers, he says, but only about 400 agencies nationwide have earned the accreditation. Through the hotline, Bailey hears from parents who have just one or two agencies in total to choose from within a 20-mile radius — and those agencies have months-long waitlists.

During her brief stint as an RBT, Vance found out she was pregnant with her daughter, who is now 4. When her daughter was almost 2, she was assessed for language delays and diagnosed with autism. Vance never considered seeking ABA for her. She sees too much potential for harm as a tool to control how children behave. “I think I’m raising a phenomenal, thoughtful, caring, emotionally supported, happy child,” she says. “That’s what matters.”

Vance still thinks about the boy who quoted movie scripts and the failure of a conscripted therapy to connect with him. “He thought in archetypes, like all of the greatest spirits from literary and historical acclaim, and that was how language acquisition and communication worked for him,” she says. “But the tasks he was given were so menial. The focus should be on how to help other people recognize that kind of brilliance.”

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Monday, October 19, 2020

'At 47, I discovered I am autistic – suddenly so many things made sense

 

'At 47, I discovered I am autistic – suddenly so many things made sense'




Other people’s lives always seemed more effortless, but it took my daughter’s autism diagnosis to realise why

Until last year I had no idea I was autistic. I knew I was different and I had always been told I was “too sensitive”. But I don’t fit the dated Rain Man stereotype. I’m a CEO, I’m married, I have two children. Autism is often a hidden disability.

Other people made life seem easy and effortless while, before my diagnosis, I always operated with some level of confusion. I was able to achieve a lot and I used to attribute this to the strong work ethic I inherited from my dad but now I have no doubt that he was autistic, too.

I climbed the career ladder very fast. My mind is always going a million miles an hour and I don’t really have an off switch. I need to finish what I start at any cost. Now I understand that is part of being autistic. Einstein, Mozart, Michelangelo, Steve Jobs, Bill Gates – all these overachievers are widely believed to be, or have been, on the spectrum.

I didn’t just work hard, I also played very hard. I used recreational drugs to smooth me through the challenges of social communication. I was always a clubber, not a pubber, because I couldn’t do the chit-chat.

Autism is characterised by a need for repetitive patterns and challenges with communication. With every interaction, verbal or written, I go through a mental checklist: is my response appropriate? Is it relevant? Is this something only I am going to find interesting? Is my tone right? Trying to follow social rules and adapt to an allistic [non-autistic] world is exhausting. No one sees what is going on inside my head.

I have to work really hard at friendships. I’m good at making friends but not so good at keeping them. Misunderstandings in communication can blow up quite quickly. I have very high expectations of myself and others, and my friends tell me that that can feel like pressure. The trade-off is that I am 100% dependable, very loyal and a lot of fun when I am feeling social. Autistic people have a high divorce rate. My husband is a very calm, grounded person, which is a good balance for me.

I burnt out in my late 20s. Originally from England, I spent a year in India looking for answers then I headed south to Australia. It is no coincidence that I moved to the opposite side of the world to try to find out where I belonged, where I would be accepted. My greatest fear has been something I’ve always referred to as “the big alone”. Even when I’ve been in loving relationships, as I am now, there has been a terrible aloneness in not understanding why I am not like other people.

Like many adult women, my diagnosis came through the diagnosis of my child. It’s an increasingly common story. My daughter had behavioural differences and sensory sensitivities from quite a young age and she was diagnosed with autism at age seven. A year ago, I set up Autism Camp Australia, a charity for autistic children and their families. I was studying autism every day, constantly talking to parents, and it became very clear I had many of the symptoms myself. Even before I had my diagnosis confirmed by a specialist, I knew I had found the answer.

Suddenly so many things made sense. I was able to look back at situations and misunderstandings and understand what had happened. I’d been told my communication could be “off” sometimes – a bit intense, a bit abrupt. Having an understanding of my autism, I have been able to take care of myself better. I understand the differences between allistic and autistic communication, and when I need to rest and recoup.

Autism is mostly an inherited condition. The largest study of its kind, which involved 2 million people across five countries, suggests that autism is 80% determined by inherited genes. It’s not caused by bad parenting or by childhood vaccinations. It’s not a mental illness. Autistic children are not unruly kids who choose not to behave.

I started my charity because I recognised that there was a lack of support for young autistic people and their families. Autistic children spend a lot of time “masking”, imitating so-called “normal” behaviour. They need to be able to experience their authentic selves. We run five-night camp programs which help autistic young people build capacity across communication, social interaction, sensory regulation and community participation. It’s also a place where siblings and parents feel supported and get a break. The results have been astonishing.

This is a social justice moment for autistic people. Over the past five or 10 years, the concept of neurodiversity – the idea that these differences in our brains should be celebrated – has become better known. We deserve equality, respect and full social inclusion. Autism isn’t just a medical diagnosis, it is part of our identities, and when autistic people ask you to go the extra mile in learning about and understanding how we think differently, we’re not asking for anything we haven’t done for allistic people all our lives.

We need to start making space for neurodivergent people at school, at work, in life generally. Autistic people bring a whole new set of skills with them. It is time society learnt to embrace our differences rather than requiring us to hide them away.

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Saturday, October 17, 2020

Vitality form expression in autism. Article.

 


Abstract

The notion of “vitality form” has been coined by Daniel Stern to describe the basic features of action, which may reflect the mood or affective state of an agent. There is general consensus that vitality forms substantiate social interactions in children as well in adults. Previous studies have explored children with Autism Spectrum Disorder (ASD)’s ability in copying and recognizing the vitality forms of actions performed by others. In this paper we investigated, for the first time, how children with ASD express different vitality forms when acting themselves. We recorded the kinematics of ASD and typically developing (TD) children while performing three different types of action with two different vitality forms. There were two conditions. In the what condition we contrasted the three different types of action performed with a same vitality form, while in the how condition we contrasted the same type of action performed with two different vitality forms. The results showed a clear difference between ASD children and TD children in the how, but not in the what, condition. Indeed, while TD children distinguished the vitality forms to be expressed by mostly varying a specific spatiotemporal parameter (i.e. movement time), no significant variation in this parameter was found in ASD children. As they are not prone to express vitality forms as neurotypical individuals do, individuals with ASD’s interactions with neurotypical peers could therefore be difficult to achieve successfully, with cascading effects on their propensity to be tuned to their surrounding social world, or so we conjecture. If this conjecture would turn out to be correct, our findings could have promising implication for theoretical and clinical research in the context of ASD.

Read the rest of the article here (PDF DOWNLOAD): https://www.dropbox.com/s/27oyc8nh1xt3yel/Vitality%20form%20expression%20in%20autism.pdf?dl=0

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The perils of suggesting famous historical figures had autism

 

The perils of suggesting famous historical figures had autism

The knight Perceval leaves his mother in extreme distress, oblivious to his effect, as he rides into the distance.
The Experts:
Expert

Terje Falck-Ytter

Professor, Uppsala University
Expert

Sofia Lodén

Researcher, Stockholm University

Historians and authors have given many famous figures an armchair diagnosis of autism over the years: Albert EinsteinMichelangelo and Thomas Jefferson, to name just a few.

Looking for signs of autism in historical figures and fictional characters can give us important insight into society’s changing perceptions of the condition through time. But however intellectually interesting, we urge caution before labelling such figures actually autistic.

Consider the idea that Perceval, one of the Knights of the Round Table in the King Arthur legend, was autistic — a claim levied by the literary scholar Paula Leverage1. If correct, it suggests that today’s fascination with portraying autism traits in popular culture — for example, in television shows such as “The Big Bang Theory” and novels such as “The Curious Incident of the Dog in the Night-Time” — has a near thousand-year-long history2.

But given Perceval’s anti-heroism, comical and sometimes immoral behavior, describing him as autistic could also increase the risk for misconceptions and stigmatization of actual people with the condition.

Adventure time:

Perceval made his debut in “Le Conte du Graal” (The Story of the Grail), a rhymed verse romance written by the Old French poet Chrétien de Troyes in the late 12th century3. The tale describes Perceval’s many adventures, including his discovery of the famous grail — an ornate gold dish purported to have unusual powers and the object of fascination for numerous writers ever since the Middle Ages.

Leverage argues that Perceval “is deficient in reading minds, perhaps autistic” and that Chrétien is “exploring what we now call theory of mind,” or the ability to grasp another person’s thoughts. She singles out a number of the knight’s autism traits, such as his difficulty with social interaction. For example, during one quest the young Perceval encounters knights in a forest, who ask him whether he has seen five other knights and three maidens. Instead of answering this question, Perceval repeatedly asks what a knight is and enquires about their clothing and chivalric weapons. In other words, he fails to take part in a typical back-and-forth conversation.

The encounter inspires Perceval to become a knight. When he leaves home, his mother is struck by grief and falls to the ground “as if she had dropped dead.” But Perceval simply ignores her and rides on, something that Leverage interprets as a “lack of ability to read his mother’s gestures and her mental state.”

He then meets Gornemant of Gohort, who teaches him that “he who talks too much commits a sin.” Perceval later applies this advice literally and remains silent when he arrives at the castle and watches a procession in which the grail is carried. This decision ultimately proves disastrous, because Perceval’s speech could have healed the castle’s owner, the Fisher King.

When at one point in the narrative Perceval is asked to describe a castle, he focuses on architectural details rather than a more general description. A number of studies have found that some autistic people have a remarkable attention to detail, often at the expense of the full picture. Moreover, from the moment he encounters the knights in the forest he devotes himself entirely to becoming a knight, and his ability to quickly learn chivalric skills reflects his total dedication — something that Leverage interprets as an intense and restricted interest, characteristic of autism.

Perceval may also overreact to sensory stimuli, another core trait of autism. According to Leverage, a telling example appears during Perceval’s forest encounter: He is so impressed by the strong sound of the knights’ approach and the glittering of their armor that he believes them to be angels from heaven. What’s more, three drops of blood on the snow-covered ground remind him of his beloved’s red cheeks and white skin, making him fall into such deep contemplation that he does not react when others call for his attention.

The knight Perceval is utterly taken in by drops of blood in the snow, and his companions cannot get his attention.

Alternative explanations:

Although these behavioral and cognitive signs could be reminiscent of autism, other aspects of Perceval’s life story and behavior call for caution in rendering an autism diagnosis. Just as there is a risk of diagnosing autism too readily in real people, similar processes may apply to fictional characters4.

For example, Perceval’s mother raised him in isolation from the rest of the world in an attempt to protect him from the chivalric violence that killed his father. He might thus be compared to socially deprived children, who in extreme cases may develop autism-like traits but do not actually have autism5.

More generally, Perceval’s behavior needs to be understood within the historical context of the High Middle Ages. For example, when he does not stop at the sight of his mother falling to the ground, this may illustrate the violence of the chivalric world that Perceval is about to enter and his mother’s role as a victim of this society. And one can argue that Perceval’s behavior conforms to medieval conceptions of child development, as described by classical and medieval thinkers such as Aristotle, Augustine and Boethius, who were all central figures at the time when Chrétien wrote his tale6. Thus, rather than considering him as autistic, Perceval’s behavior may simply be seen as that of a typical child for that era.

What modern readers interpret as autistic behavior could be a literary device deployed to emphasize Perceval’s status as someone who has not mastered courtly social conventions. Perceval’s strong reaction to hearing and seeing the knights in the forest could serve to stress the difference between the uncivilized Perceval and the courtly knights, and also add a marvelous dimension to the narrative’s central figure.

In addition, Perceval’s behavior undoubtedly serves a comic function, making the story more entertaining. If we consider the chivalric romance in its historical context, developed in a courtly milieu in which it would have served to entertain and teach, then Perceval’s behavior could be understood as a means to amuse the audience and illustrate the importance of civilized behavior.

Given these alternate interpretations, it is tempting to conclude that the question of whether Perceval “had autism” is an anachronistic and unmeaningful one — although it remains possible that “Le Conte du Graal” illustrates how certain autism traits were explored in fiction long before they were known in medicine. And Chrétien may have found inspiration in certain developmental patterns observed in the real world (Leverage has raised the possibility that Chrétien modeled his hero on an autistic person he knew).

Nevertheless, the jury is still out (and will always remain there) regarding Perceval’s potential diagnosis — and attempts to formally classify him according to today’s standards probably cannot help us understand either Perceval or autism much more deeply.

Terje Falck-Ytter is professor of psychology at Uppsala University and researcher at the Center of Neurodevelopmental Disorders at Karolinska Institutet in Stockholm, Sweden. Sofia Lodén is researcher in the romance studies and classics department at Stockholm University. Both Falck-Ytter and Lodén are Pro Futura Scientia Fellows at the Swedish Collegium for Advanced Study in Uppsala, Sweden.

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Mother of 7-year-old with autism files lawsuit after resource officer handcuffed her son at school

 

Mother of 7-year-old with autism files lawsuit after resource officer handcuffed her son at school

The lawsuit alleges the boy was held on the ground, handcuffed, for more than 38 minutes.

(CNN)The mother of a North Carolina boy with autism has filed a lawsuit after a school resource officer handcuffed and held her 7-year-old son on the ground during a 2018 incident at an alternative school in Statesville.

The city of Statesville has since released body camera video depicting then-Statesville Police Officer Michael Fattaleh, who served as a school resource officer at the Pressly Alternative School, responding to an event involving the student. The body camera footage was obtained by CNN affiliate WSOC through a court petition.
The boy was enrolled in a day treatment program located at Pressly Alternative School, which is affiliated with a non-profit behavioral and mental health provider, due to his special needs, according to the lawsuit.
"Officers assigned to Pressly were aware that children at the day treatment program had special needs, and suffered from an array of developmental, mental health and behavioral issues, including autism," the lawsuit says.
    According to the lawsuit, on September 11, 2018, the boy became "agitated and verbalized being stressed out," and was subsequently brought to the school's "quiet room" by his teacher to minimize stimulation and allow him to calm down in a safe environment.
    The lawsuit alleges that Fattaleh then abruptly entered the room, claiming to have seen the boy spit on the floor as he walked past. Body camera video shows Fattaleh then forcing the boy into a kneeling position, with his arms pinned behind him, saying "if you spit on me, I'm going to put a hood on you."
    The lawsuit alleges that Fattaleh restrained the 7-year-old in metal handcuffs, on the ground, for more than 38 minutes, at one point stating "Have you ever heard the term babysitter? I take that term literally, my friend."
    "If you, my friend, are not acquainted with the juvenile justice system, you will be very shortly," Fattaleh can be heard saying on the video. "You ever been charged before? OK, well you're fixing to."
    During other moments of the incident, while the 7-year-old is lying face down on the floor, with his hands cuffed behind him, Fattaleh appears to check on the boy's well-being, asking "Can you breathe?" and "Are you hot? Are you warm?"
    When the boy's mother arrives, the officer tells her that her son "is going to be charged with one count of assault, maybe two," the video shows.
    Among other things, the lawsuit seeks to hold Fattaleh liable for inflicting "unnecessary and wanton pain and suffering" on the boy, saying he suffered "severe and permanent psychological injuries and was forced to endure extreme pain, suffering, and emotional distress and mental anguish together with a total deprivation of his rights guaranteed him by the Constitution."
    Interim Statesville Police Chief David Onley initiated an internal affairs investigation of the incident, the Statesville Police Department said in a statement.
    Onley and District Attorney Sarah Kirkman requested the North Carolina State Bureau of Investigation to carry out an independent probe of the matter. "There are no active investigations or criminal proceedings related to any events depicted in the video," the police statement says.
    According to the city, Fattaleh has resigned from his position and is no longer working with the police department.
    "The Statesville Police Department stresses its commitment to serving the community and our schools and will continue to build trust with the students, parents and staff," the statement added.
      An attorney for Fattaleh, Ashley Cannon, issued a statement saying, "On September 11, 2018, he responded to a report involving a student," and that the independent investigation of the matter requested by the interim police chief and the district attorney "was completed and there are no active investigations or criminal proceedings related to the matter."
      CNN has reached out to the Iredell-Statesville Board of Education, which is named as a defendant in the lawsuit along with Fattaleh and the city of Statesville, for comment
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      Monday, October 5, 2020

      Police shooting of boy with autism in Salt Lake City leads to calls for more crisis intervention teams

       

      Police shooting of boy with autism in Salt Lake City leads to calls for more crisis intervention teams

      When Golda Barton called 911 seeking help for her 13-year-old son, she was specific.

      She wanted a crisis intervention team officer to help get her son, who was having a mental health episode, to a hospital.

      “For whatever reason, that’s not what she got,” said Sherri Wittwer, CIT Utah board president.

      Instead, Salt Lake City police officers, whom Wittwer characterized as crisis intervention generalists, responded, chased the boy and one of them opened fire, severely injuring 13-year-old Linden Cameron, who is autistic.

      This wasn’t the first time Linden’s family had called the police for him. His brother, Wesley Barton, said the response was never quite what they needed. The department didn’t seem well-equipped to handle an autistic teen acting out and often took a long time to respond. Alternatives are not readily available.

      “I know that the Salt Lake City Police Department is not capable of handling mental crises after seeing what happened,” Wesley Barton said. “They definitely didn’t try to de-escalate.”

      (Photo courtesy of GoFundMe) Pictured is Linden Cameren, who was shot by Salt Lake City police on Friday, September 4, 2020.
      (Photo courtesy of GoFundMe) Pictured is Linden Cameren, who was shot by Salt Lake City police on Friday, September 4, 2020.

      After Linden was shot, Salt Lake City Mayor Erin Mendenhall promised a swift investigation, calling the shooting a “tragedy.” It also drew outcry from advocacy groups like the Utah Disability Law Center, which said the shooting showed that the system is broken, and provided a 16-point outline to fix it. One of those points calls for the creation of more robust crisis intervention teams, which are comprised of officers who receive extensive mental health training.

      The simple fact that Linden’s mother had nowhere else to turn but to the police, the Disability Law Center wrote, was a “failure in leadership to ensure the health and safety of all Utahns.”

      This shooting took place during a year rife with protests against police violence, sparked by the killing of George Floyd in Minneapolis. Protesters, including in Utah, have called for efforts to “defund the police,” essentially arguing to shift money from law enforcement to other social services, including mental health professionals.

      That’s what Rebecca McIntosh wants to see happen. The 45-year-old is a member of Utah Against Police Brutality and has a 7-year-old son who is autistic. She said that she’s “terrified” at the prospect of having to call the police if she needs help with her son as he gets older and stronger.

      “With the way things currently are, I wouldn’t call for help,” McIntosh said. “There’s no doubt about that. I would deal with it myself.”

      A Salt Lake Tribune analysis of 911 calls of select Utah agencies shows that requests explicitly seeking help for mental health issues make up a small portion of the calls police officers receive yearly. But they are far from insignificant. In the past seven years, Salt Lake City officers have responded to nearly 42,000 such calls, which doesn’t count incidents where it is not initially known that a person is suffering from a mental health episode.

      These calls can often be unpredictable. While trained mental health professionals can handle some of them on their own, others would require an armed officer. Ideally, in most of these cases, a behavioral health professional would respond, Wittwer said, or someone from a mobile crisis outreach team.

      “The fact is, we’re not going to send social workers into every situation,” she added, “and there are just times when law enforcement needs to be involved.”

      With that reality, the only path forward, she said, is to properly train and support law enforcement.

      When people are in crisis

      The Tribune’s data analysis shows that 5.29% of all 911 calls to Salt Lake City police in the past seven years were mental health-related. Those are calls like “psychiatric problem” in which officers would know they are dealing with a mental health issue, and doesn’t include other types of crimes, like illegal substance use, when officers might not determine there is a mental health element until they are on the scene.

      In other cities like Layton and Logan, that percentage is even lower — 2.34% and 3.24%, respectively.

      But Utah’s Disability Law Center points to a Ruderman Family Foundation study that showed between 2013 and 2015, an estimated third to a half of all of the people killed by police had some kind of disability, either mental or physical.

      That’s why having officers trained to appropriately respond to these types of calls is so important, experts say.

      But a crisis intervention team doesn’t mean the same thing at every police department in Utah.

      Had Golda Barton been calling from St. George, for instance, the 911 dispatcher would have sent a specialized mental health officer. Depending on how many times the family has called police, that officer may be aware of the patient’s mental illness and triggers.

      In Salt Lake City, the small crisis intervention team works weekdays and during regular business hours. And while all officers get 40 hours of crisis intervention training, Wittwer said, that doesn’t equip them to handle really difficult encounters. Most officers don’t want to be social workers, and shouldn’t have to be, Wittwer said. An expert approach is best.


      A police department in Utah can either administer its own crisis intervention training — Salt Lake City does this — or get trained by CIT Utah. The other option is to have no CIT-trained officers, which is mostly the case for small rural departments, according to Detective Joseph Taylor, who runs Salt Lake City police’s crisis intervention team and once taught the program across the state.

      Taylor said the only differences between the training SLCPD gives and what is offered by CIT Utah are administrative. It’s the same 40-hour course, he said, just taught by someone else.

      Wittwer said there’s more to it than that.

      If a department has been trained by CIT Utah, that means it is following as best it can the international best practices, so all officers get mental health and de-escalation training but those in the CIT team receive specialized advanced training. Ideally, someone is always on call to respond to mental health issues.

      And unlike department-led efforts, CIT Utah’s programs are administered and overseen by trained mental health and law enforcement professionals, as well as community members with experience around people with mental health issues.

      “It’s not a law enforcement response. It’s a community response,” Wittwer said. “Having people with lived experience, and their families, involved in the program helps to maintain the quality and to make it a program that the community trusts and will call and partner with.”

      Currently, SLCPD employs four CIT officers who work weekdays — and there are some jobs open. The team works with social workers to respond to 911 calls, like reports of suicidal people, and follow up with past callers to get them into substance abuse treatment or help them apply for a state-issued ID and other benefits.

      Could a social worker do some of that? Yes, Taylor said, but not all of it.

      “When people have mental health issues, they’re not more dangerous. That’s a misconception,” the detective said. “But it can be more unpredictable. Sometimes people who want to hurt themselves, having delusions, they can be aggressive and hurt you.”

      He pointed to a July 2019 shooting as an example, when staff at the Sunrise Metro Apartments called the police nonemergency line to report that Michael Brand was “acting abnormally and being aggressive towards staff.”


      Brand had been diagnosed with psychiatric disorders. Video showed a staffer tell police that Brand was reeling from the recent death of his friend.

      Three crisis intervention officers and an employee went to Brand’s door. When Brand opened it, he was holding what appeared to be a black handgun.

      Video shows the woman gasp, raise her arms and duck. Officer Scott Robinson then shoots three times, hitting both Brand and his partner Detective Mike McKenna.

      Taylor said that even though the gun Brand held wasn’t real, the encounter shows a “perfect example” or why police need to respond. When people are in a mental health crisis, they can be unpredictable and potentially violent.

      Jessica Waters, SLCPD’s social work director, said she thinks a lot about whether police are necessary in her work. Ultimately, she thinks they are.

      “Honestly, there have been many situations where if the officer wasn’t there," Waters said, “it could have gone really bad for the social worker.”

      What can be done?

      A typical CIT response for someone with autism, like Linden Cameron, would include a quiet approach. Officers wouldn’t pull up in cars with flashing lights and sirens. They wouldn’t yell. They’d understand that the person may run, that the person might not follow commands or make eye contact.

      They understand all of that is just part of the episode.

      In Linden’s case, police did try to approach quietly. They didn’t use bright lights, either. But as soon as the first officer saw Linden, he flashed a light toward him and called out.

      And Linden ran.

      As the officer approaches the teen, he shines his light on him and yells, “Get on the ground! Get on the ground!”

      The boy doesn’t, and the officer fires about a dozen rounds.

      Wesley Barton said last week that his brother is alive but is still in “pretty bad condition.” Bullets struck Linden’s shoulder, ankles, intestines and bladder, and it’s expected he’ll be in the hospital for quite some time.

      Barton said after the body camera footage was released, his family members wanted justice for Linden, which to them meant the department should fire the officer. But family members also have grappled with whether the police should have responded differently to their pleas for help.

      “Social workers are definitely a lot better, in my opinion, to send out on mental health calls," he said. “There’s a lot better way to de-escalate a situation. I don’t believe the police are the way to do that. If they want to send a police officer, they should be well-trained and take precautions.”

      Salt Lake City recently implemented a new use-of-force policy that requires officers to try de-escalation first when responding to most cases. That policy, however, took effect just hours after LInden had been shot.

      The Disability Law Center said in a letter to the city’s Racial Equity in Policing Commission that police and criminal justice reform will need to go much further than that.

      It’ll take decriminalizing offenses that don’t risk public health and safety — like substance use — that disproportionately impact marginalized groups, and establishing civilian oversight boards that have power to cause change.

      “In the long run, if we want a different outcome, we need a different model. We can no longer afford to depend on police to combat the results of poverty,” the letter reads. “Instead, we must invest our resources in rooting out its causes: lack of education, lack of economic opportunity, lack of affordable housing and health care, lack of transportation, lack of mental health and substance use disorder treatment, barriers to reentry from jail or prison, and domestic violence, among others.”

      That letter isn’t far off of what Salt Lake City Police Detective Greg Wilking said.

      “To get to that point where we’re defunding the police, we need to get to a point where society has a better way of dealing with mental health issues that are out there,” Wilking, the police spokesman said, “that has a better way of dealing with the substance abuse issues that are out there. That has better education from the ground up, so that we have less people falling into poverty. This is the stuff we’ve got to, as a society, address right now and put our money toward. But you can’t take away from the police in this moment.”

      Another proposal is a unified crisis intervention team standard, Wittwer said.

      “So that CIT means the same wherever you live in this state, and individuals and families know what they can expect when they request a CIT officer,” Wittwer said. “That’s the goal.”


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