Friday, November 16, 2018

Eliminating Restraints and Seclusion Improves Outcomes for Injuries/Trauma, Expenditures, and Student Goal Mastery

holding on
Photo: Nancy Marie Davis | Flickr / Creative Commons
[image: sepia-tone print of a clenched fist, with superimposed scratched lines.]

Maxfield Sparrow
unstrangemind.com

A little over two years ago, Crystal Garrett wrote an article for Thinking Person’s Guide to Autism about the long-term traumatic effects on her Autistic son of the restraints and seclusion used against him at school. Garrett chose to end her career as a journalist to stay at home and school Zachary herself. Garrett wrote,
“We know a restraint and seclusion free environment is realistic. Virginia-based Grafton Integrated Health Network, an organization that works with children and adults with autism and co-occurring psychiatric diagnoses, went restraint and seclusion free ten years ago. Since then, their client and staff injury rate has dramatically gone down, while employee satisfaction has increased. They are now teaching their system, Ukeru, to others across the country, in order to create a trauma-informed environment for addressing aggressive behavior.”
Garrett also wrote about the importance of more people learning about the Ukeru model:
“Perhaps if more educational bodies knew about this approach, my 60-pound six-year-old wouldn’t have ever been placed in the back of the patrol car that hot summer day. We also wouldn’t have to travel the 30-mile stretch of highway for trauma-based therapy each week.”
Over a Decade of Research into Alternatives to Restraint and Seclusion

I couldn’t help thinking about Crystal and Zachary Garrett today when I learned that an official study of Grafton’s Winchester, Virginia, Ukeru program was published in Advances in Neurodevelopmental Disorder in August of 2018.

The study’s authors are Jason H. Craig (a BCBA at Grafton School) and Kimberly L. Sanders, who has filled many roles at Grafton and is currently the Chief Outcomes Officer. In another article earlier this year, Sanders writes about the Ukeru vision as “comfort versus control,” and writes that it’s more than just how people are trained to approach alternatives to restraint and seclusion but a “core operating principle” informing the entire philosophy of the organization. She links to a capsule explanation of The Grafton Method, the seven-point framework for addressing issues of restraint and seclusion with the committed intention to minimize or eliminate restraint entirely:
  • Leadership. Decide the organization’s mission, envision a path between the present and the future, plan actions and keep everyone focused on the goals.
  • Communications. Communicate the vision to staff. Set up communication practices within the organization that will keep everyone informed and on point.
  • Training. Teach everyone the best practices to use instead of restraint and seclusion.
  • Measurement. Keep track of what’s working and what isn’t. Measuring and record-keeping are what keep education scientific rather than intuitive, and documentation is crucial for repeatable results.
  • Debriefing. When an unwanted outcome arises, it’s important to establish clear communication to discuss what happened and how to achieve more desirable results next time.
  • Alternative solutions. At Grafton, brainstorming about alternative solutions was how Ukeru was developed.
  • Therapeutic planning. Don’t leave a student/client’s progress to chance: 
    1. Assess a student’s strengths and weaknesses
    2. Develop strategies around a student’s strengths, encouraging academic growth in an environment of safety and security for the student
    3. Train staff in techniques and documentation methods
    4. Monitor progress
    5. Modify what’s happening, based on progress toward goals (as well as adjusting goals when they no longer suit a client’s preferences and needs).
The study Sanders and Craig published is important because it represents peer-reviewed scientific evidence that eliminating restraints and seclusion not only have the direct benefit of treating clients with dignity and respect, rather than traumatizing them, but the Ukeru program has documented evidence that eliminating restraint saves on workplace injuries caused by client responses—which also saves organizations millions of dollars.

A copy of the Grafton study needs to be in every parent’s toolkit when arguing for the well-being of their children in the education system. Sanders and Craig have produced reputable scientific evidence that serves as valuable munitions for every parent’s IEP battle against a school that uses restraints and seclusion.

In a recent Scientific American article, Alycia Halladay writes about hyped-up autism studies and how harmful they are to Autistic people, saying,
“The mainstream news media need to consider a more measured and responsible approach to covering autism research. This should include very careful vetting of which studies are reported. Not all scientific journals are equal in their scientific rigor or review policies, so just because a study is 'published' does not mean it necessarily has scientific significance.” 
Advances in Neurodevelopmental Disorders is a reputable journal, and the Grafton study is crucial to developing appropriate methods for schools to interact with Autistic students, but I haven’t seen much, if any, journalistic hype for this study. I guess there’s nothing sensationalistic and headline-grabbing about NOT harming students.

Why the Grafton Study is Useful and Important

The Grafton study provides clear data useful when debating against the many people who insist that there is no way to get around using restraint against “violent people” because there is no other way to control dangerous behavior. These people often add statements about such harsh treatment such as saying that it is done “for the client’s own good” adding that people will have better future outcomes if we control their behavior now, and shape them into something socially acceptable.

As an Autistic advocate/activist myself, I also get told that I can’t understand the needs and benefits for Autistic people who “aren’t like [me]” because I’m allegedly only “mildly affected” and can’t understand the needs of “serious autism.” And if you’ve ever read anything else I’ve written, I don’t need to tell you how frustrating and infuriating that kind of talk is to me.

Humor me while I unpack those representative statements a little: There aren’t Autistic people who “aren’t like me” in a real sense, because we’re all different (being, you know, human beings) and no one on this planet is actually “like me” but the Autistic people on this planet are a heck of a lot more like me than the non-autistic people. Yes, I’m even talking about “those people”—you can fill in that blank however you choose. I have more in common with any Autistic person, even those who can do things I can’t, even those who can’t do things I can.

“Mildly affected” and “serious autism” are just euphemisms for functioning labels, and we Autistic folks have written so much already against that misunderstanding of autism. Let me just skip past that this time to tell you that I have a personal history of being restrained, secluded, and institutionalized. I am not speaking from some philosophical stance or set of political beliefs when I say that treating Autistic people with restraint and seclusion make us worse, not better. I am speaking from personal experience. Now, thanks to the Grafton study, we can all speak from a scientific basis as well when we talk about the ways restraint and seclusion make things worse for everyone, not just for the Autistic people these methods are used on.

In the introduction/literature review section of  their paper, Craig and Sanders talk about the 2006 policy paper issued by the National Council for Behavioral Health that said restraint and seclusion should be methods of last resort, used only after all other options have been exhausted. They also cite a 2012 paper from the American Journal of Orthopsychiatry that found restraint and seclusion to be “traumatizing and dangerous to both the children and the staff involved in each incident.” Some agencies have been successful in reducing restraint and seclusion while others struggle with the mandate.

Next, Craig and Sanders talk about the Trauma-informed approach (TIA) model. Instead of focusing on controlling someone’s behavior, TIA focuses on establishing a relationship between the student/patient and a trusted adult caregiver. When the student feels emotionally and physically safe, they will be more invested in accepting help and considering new ideas about their lives. This safe space allows the student to shift from a position focused on bare survival into a position where growth and learning can take place. Grafton’s comfort vs. control perspective grew out of TIA practices. Comfort vs. control aims to change interactions between staff and student such that the risks of traumatizing or re-traumatizing the student are significantly minimized, using the following techniques/philosophies:
  1. Response blocking. The simplest example is putting a pillow between someone’s face and fist to stop them from hitting their face and instead hit the pillow. Response blocking is controversial among some people. Most parents support response blocking because it directly prevents a student from injuring themselves. Response blocking in an ABA context can be either a punishment or an extinction, depending on how the client responds to being blocked.
  2. An understanding of behavioral intent and client needs. In other words, not just deciding what a client should or should not be allowed to do, but rather working to understand why a client chooses a particular action, feedback, etc. What unmet needs are driving the client’s behavior? “Behavior” does not happen in a vacuum; behavior is communication and/or an attempt to meet unmet needs.
  3. Developing creative solutions as alternatives to restraint and seclusion. How can using comforting techniques help clients calm and self-regulate? How can staff take care to not use control tactics on behavior that is disruptive and appears “out of control”?
These three points created a mindset shift among staff, allowing workers to:
  • Reassure clients.
  • Ask questions of clients instead of jumping to inaccurate conclusions and assumptions.
  • Embrace flexibility
  • Do not strive to always keep the upper hand / hold an imbalance of power / maintain control over situations and people.
  • Treat others with kindness and respect.
Sanders and Craig write,
“The belief was that many situations in which a restraint or seclusion was used could be better resolved by a non-coercive, caring intervention from a person focused on peaceful conflict resolution who was willing and able to spend time with the upset or angry individual.” 
I feel like that sentence highlights the biggest reasons why we are still wrestling with the demon of restraint and seclusion, even 14 years after a strong governmental policy recommendation against it: “willing and able to spend time.” So many workers are under such constraints of time and money that TIA feels overwhelming. Staff need to be educated about the time, money, and (most importantly!) human safety and well-being that will be preserved through implementing a TIA approach instead of restraint and seclusion.

How the Grafton Experiment was Conducted

Sanders and Craig examined the entire Grafton system, including over 750 employees and 3244 clients, male and female, from age 6 to age 22, with intellectual and developmental disabilities presenting at a wide variety and levels of support needs. At the beginning of the study, when Grafton began making concerted efforts to reduce restraint and seclusion, any and all of these 3244 clients were potential candidates for restraint and/or seclusion, if they were deemed to be a risk to themselves or others. The restraint reduction program began in 2004 and the year before the program there were 6646 incidents of restraint or seclusion. In other words, a client would be restrained or secluded on average more than twice per year.

The study authors also laid groundwork statistics representing the pre-intervention levels of measurable outcomes, particularly:
  • Rate of incidents of restraint and seclusion.
  • Rate of restraint-induced staff injuries (Why they did not count rate of restraint-induced client injuries is beyond me.)
  • Client-induced staff injuries.
  • Lost time and modified duty for workplace injuries.
  • Lost money due to all of the above causes.
  • Client outcomes / goal mastery
The results of the study came from a combination of carefully conducted interviews, and the raw data related to the above focused outcomes.

Research Outcomes

The researchers found that the Grafton Method reduced instances of restraint by 99%.

They reduced instances of seclusion by 100%.

Restraint-induced injuries to staff were reduced in the same time period by 97%.

Client-induced injuries to staff were reduced by 64%.

(I should note that client-induced injuries is one of the biggest reasons I hear cited for the need for staff at facilities to be able to restrain clients: fear of injury to staff. This result shows that staff were actually being injured MORE by the clients when there was restraint and seclusion and far LESS after restraint and seclusion were removed.)

There was an 81% reduction in lost days and modified schedules after reducing restraint and seclusion.

Lost expenses decreased by 75% overall. Between money lost to sick/injured days, worker’s compensation, employee turnover, and training, in the 12 years covered by the study, Grafton saved approximately $16.4 million (an average savings of $1.37 million per year) by restricting/eliminating restraint and seclusion practices.

As for client goal mastery, when the study started in 2005 the client goal mastery rate was 34%. By 2008 the client goal mastery was 66%. By 2018, that rate was 80%. Overall, this represents a 133% increase in the ability of the students to learn, grow, and change in positive ways desired by both the students and the staff.

Conclusions

Who (except us Autistics and many of our parents!) expected so much positive gain from simply choosing to treat clients with respect and kindness? Craig and Sanders advise other organizations to look at these results and choose to eliminate restraints and seclusion as well. They wrote, “Organizations need to learn to be more responsible and accountable, especially when it comes to the treatment to vulnerable individuals.”

It is my fervent hope that this study from Craig and Sanders will be widely cited and shared in the research community as well as the community of parents of school-aged Autistic children. We all need to get the word out about these results and get other researchers and organizations on board with the TIA approach to helping students feel more comfortable and less manipulated, controlled, bullied, and traumatized.

Everything in this study seems obvious to us, of course. Whether you’re an Autistic person, the parent of an Autistic person, a compassionate teacher looking for better ways to mentor your students, an activist or policy maker—it should seem obvious that life is better for everyone when we aren’t tackling vulnerable people to the ground, punishing, and isolating them for the “crime” of being different and struggling with self-regulation, sensory onslaught, and the countless other daily battles Autistic people have with our environments.

But these things are not obvious to everyone. A study that demonstrates significant savings in money will sway some organizations. A study showing less injury to staff will sway others. This study demonstrates both and more. Add it to your collection and use it as evidence in your fight to make the world a better place for Autistic children, the Autistic adults they will grow into, and everyone whose life touches or is touched by the lives of our precious Autistic children who deserve so much better than our society has been giving them.

Friday, November 2, 2018

Knowing Why Is Everything: An Interview With Editor Elizabeth Bartmess on Adult-Diagnosed Autistic Perspectives

Sarah Kurchak
www.riskyfuel.com

The Knowing Why book cover
[image: Book cover with a black background,
with silhouettes of people of all sizes
and a dog, in a rainbow of colors.
Rainbow-colored text  at the top reads,
"Knowing Why: Adult-Diagnosed Autistic
People on Life and Autism.]
There are many problems with the ways in which autism is currently seen and represented in the media and public discussion. When the face of autism is still predominantly white, cisgender, heterosexual, middle or upper class boys, it erases autistic people of color, LGBTQA autistic people, and poor autistic people from the conversation and denies them vital supports and resources. It also ignores the fact that there’s an entire segment of the autistic population that spends their entire childhoods and adolescences not knowing that they’re autistic at all.

As someone who wasn’t diagnosed until I was 27, I grew up knowing that I was different but not understanding how or why for a large chunk of my life. That experience has shaped me in both positive and negative ways that are sometimes quite different from those of my counterparts who knew so much earlier. This has made me particularly interested in the perspectives of other people who have gone through similar processes. What common ground do people who were diagnosed or self-diagnosed in adulthood have? How do race, gender, sexuality, and class influence this later onset understanding of oneself? How does adult diagnosis inform our past, present and future? What can we learn from each other?

So I was thrilled when The Autistic Self Advocacy Network released its anthology Knowing Why: Adult-Diagnosed Autistic People on Life and Autism. The collection includes nonfiction pieces from a diverse group of autistic writers, and tackles everything from intersecting identities to passions to workplace concerns and burnout. It’s an excellent read and a valuable resource for anyone who has been through the process of being diagnosed or self-diagnosed as autistic in adulthood, anyone who wants to better understand us, and anyone who might be wondering if they might be autistic themselves.

I corresponded with the book's editor, Elizabeth Bartmess, to learn more about the anthology’s genesis, conception, and goals.

Can you tell me a little about the genesis of this anthology? What made you want to produce an anthology of work by people who have been diagnosed or self-diagnosed as adults?

In 2015, I was organizing collaborative Twitter hashtags, including #AutChat (which I'm still doing) and the #AutismMeans hashtag series. Ari Ne'eman asked if I was interested in editing this anthology for the Autistic Self Advocacy Network (he was president of ASAN at the time). He proposed a nonfiction anthology, with personal narratives by adult-diagnosed/adult-self-diagnosed autistic people, aimed primarily at an autistic audience.

When autistic people come together and share their personal experiences, a particular kind of magic can happen. Often there are refrains of "I thought I was the only one!" and "I never realized that was related to being autistic." Frustrations get shared, tips get passed around, lives get better. (This isn't just an autistic thing, of course, and it doesn't always happen, but I've seen it happen often.)

We also learn about experiences that differ from our own. Autistic people vary in our autistic characteristics, in other aspects of our identities, and in our own specific life situations. Creating supportive communities requires developing a broad understanding of both our similarities and differences.

When people learn they're autistic later in life, and get accurate information about autistic experiences, they often have many closely spaced epiphanies about their lives. I found this valuable to go through myself, and fulfilling to help happen for other people. The anthology was an opportunity to do that on a broader scale.

Did you have a list of prospective authors in mind when you started to put together this anthology?

There so many good autistic writers! Some people came to mind immediately, and I learned of more people along the way. In a couple cases I asked for adaptations of existing pieces. We also put out a call for interested writers, and got a big response. The final set of contributors is about half-and-half people I approached, and people who contacted me.

As an adult-diagnosed person myself, I’m impressed and pleased at the wide variety of extremely relevant topics that are tackled in the collection. Did you have themes in mind, or did they naturally appear as a result of the material the writers were submitting?

Thank you! I asked some authors for pieces on specific topics (intersectionality, mental health, managing disability and chronic illness, sensory and social issues). Other authors suggested topics; the ones included in the anthology are burnout, accommodations at work, technology, and passions, (often called "special interests"), and intersectionality and coping skills. The overall theme—the value of knowing that you're autistic—emerged out of the individual pieces.

Some common topics have been covered in depth elsewhere, so I didn't include them in the anthology. For example, navigating the diagnostic process as an adult, job interview etiquette, handling college. There are also important underserved topics I didn't include, such as trauma recovery, acquiring needed supports, poverty, and homelessness. Those need careful and extensive coverage, and I didn't think I could do them justice. And there are topics I didn't include because I didn't have space, or didn't realize their importance at the time, or had them lined up but they fell through (aging, parenting, pregnancy, queer dating and relationships are particular topics that come to mind). Many of these topics have had some work done, but it would be great to have more.

I really love your introduction, which addresses a lot of questions that I think every autistic writer and/or public figure receives when they write anything about their own autism. It also addresses a lot of concerns that many autistic people have about their own place in discussions like these. Why was it important for you to tackle these concerns so directly off the top?

Thank you! I wanted to address common misconceptions right off because they can be particularly emotionally fraught for autistic people who weren't diagnosed in childhood, to the point that even just reading about autistic people's experiences can be stressful. I think it's helpful for non-autistic readers too, but the primary reason I wanted to address them was autistic readers.

The first misconception is that if someone wasn't diagnosed as a child, it's not important for them to know they're autistic. Autistic people are often told we don't have the experiences or needs that we do have, and we internalize that, to one degree or another. Many undiagnosed autistic adults first seek help and answers when unattended needs and the cost of masking autistic traits have pushed us into crisis, because it can take a crisis to override our internalized beliefs that we don't need or deserve support or understanding. Even people who aren't in active crisis are often struggling; it's just not true that lack of diagnosis/self-diagnosis means that we're fine.

The second misconception is that exploring whether we're autistic, thinking we're autistic, self-diagnosis, or even formal diagnosis insults and harms "real" autistic people. That's not true for a lot of reasons—health professionals often fail to diagnose people for superficial reasons, like being nonwhite or being female-presenting—but the reason I wanted to emphasize is that even if they're ultimately wrong (and they're generally not), when people explore whether they're autistic by reading about autistic people's experiences, it increases knowledge and understanding of autistic people. And when people realize they're autistic, that typically helps them personally, and also helps other autistic people generally. There's strength in numbers.

The third misconception is that autistic people are alike, so that if you don't see yourself in someone else's experience it must mean you're not really autistic. Autistic people vary a lot! That's part of what being autistic involves.

Your introduction also includes an acknowledgement of adults who are questioning whether or not they might be autistic and the anthology includes a list of resources for them, as well. Why was it important to you to reach out to this population?

I addressed some of this in my answer to the previous question, but I'll mention two additional reasons.

First, in my experience, and that of other people I've talked to, people generally start considering that the might be autistic because they are. Not always—sometimes it's some other variety of neurodivergent, like ADHD or CPTSD (both of which are common in autistic people too! Having one of those isn't equivalent to not being autistic). But they're rarely neurotypical.

Second, autistic people have built a number of strong autistic communities. People in them often have strong autistic identities, and talk about our differences from neurotypical people, and that can give outsiders the impression that if they don't have a strong autistic identity they must be neurotypical. That's not true; being autistic and having a strong autistic identity aren't the same thing. But people who are questioning whether or not they might be autistic can get the impression that it is true, and that's a barrier to self-knowledge, support, and help. (Including for people who are not autistic, but some other variety of neurodivergent.) So it's important to reach out.

Autistic people who were diagnosed or self-diagnosed in adulthood can have very different experiences—and often very different feelings about their autism—from those who were diagnosed as children. Is there anything that you hope that someone who was diagnosed in childhood might take away from reading this anthology?

When adult-diagnosed/adult-self-diagnosed people learn they're autistic, they typically have more autonomy than kids or teens do. Adults usually have more ability to influence who else gets to know that they're autistic, to refuse harmful quack "cures", and to refuse harmful therapies. (Not always, but more often.) Adults are also more likely to get diagnosed or to self-diagnose because of needs they themselves have identified.

This doesn't mean that it's better to wait for diagnosis as an adult. Often by the time we get diagnosed or self-diagnose, we've had many negative life experiences that already knowing they were autistic would have helped with. It's better to be diagnosed earlier and also not be subjected to mistreatment.

I hope what this anthology offers to autistic readers who've had bad or mixed experiences—some early-diagnosed autistic people but also some late-diagnosed/late-self-diagnosed autistic people—is a picture of what knowing you're autistic should get to look like: the benefits of self-knowledge when combined with relative autonomy and the ability to refuse consent to diagnosis-related harmful treatment. This is the world we want for all autistic people.

(A few caveats: knowing that you're autistic can do more harm than good when accompanied by misinformation about autistic people. For some people, learning that you're autistic means realizing that some things they thought they could change, they can't; that's rough, and grieving over it is normal. And sometimes the diagnosis can result in having autonomy or opportunities removed, even for adults.)

I think the anthology can also offer the same thing that learning about other autistic people's experiences can offer any autistic person, regardless of age at diagnosis/self-diagnosis: the chance to compare someone else's experiences to your own, think about might-have-beens, and potentially come up with ideas that could help you now, or that could help people who were in a position that you used to be in and that you could potentially help work toward, if that's something that's rewarding for you.

What about potential non-autistic readers? Is there anything you hope that they’ll take away from these essays?

That being autistic affects so many different aspects of our lives. That our experiences and challenges are not necessarily reflected in what we may look like to casual observers. That our identities are complex, and not just about being autistic. That we can be incredibly resourceful (even if we shouldn't be tasked with as much as we are).

Some non-autistic readers understand some or all of this already, particularly people who share significant similarities with autistic people due to other neurodivergence or disability, but also some neurotypical readers. They may be able to pick up some useful tips or ideas from the anthology, since coping skills that help autistic people can help other people, too.

Is there anything else that you’d like to address or discuss in this Q and A?

I started writing an answer, which accidentally turned into an essay too long for this interview. The brief version: how can we use accumulated autistic self-knowledge—of which this anthology is a part—to help deal with the extra burden that current and ongoing geopolitical events impose on autistic and similarly disabled people? In particular, how can autistic communities support autistic and similarly disabled people who are already maxed out and have no time or energy to devote to helping anyone else?

The anthology closes with a piece by A.C. Buchanan encouraging us to think and discuss our relationship to technology, not just as individuals but as communities. I think we can better use technology to expand the reach of our community-developed self-knowledge—in particular to help more autistic people identify themselves as autistic, to create additional supportive connections between autistic people, to create additional autistic spaces and make existing autistic spaces more inclusive, and to make more non-autistic spaces more accessible (including activist spaces).

There are already people who work on all of these and have worked on them for a long time, and made progress. I think we can channel more community effort into supporting those efforts and into creating new ones, and that using technology in new or different ways will be part of that.