Monday, January 11, 2016

When Autistic Kids and Teens Are Aggressive or Self-Injurious: Overview

--> Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism

Why do some autistic children and teens become self-injurious or aggressive? How can parents and caregivers help the kids in their care get through meltdowns safely, protect the kids themselves as well as family members, and anticipate and avoid future incidents?

This was the topic of a recent workshop I moderated at Support for Families of Children With Disabilities, in San Francisco, with speakers Dr. Clarissa Kripke, Brent White, and Lindsey Anderson. The presenters covered a lot of material, which we'll publish here in three parts:
  1. Overview (Shannon Des Roches Rosa)
  2. Medical and trauma-informed practices (Dr. Clarissa Kripke)
  3. Autistic professional and personal insights (Brent White and Lindsey Anderson)
The workshop was well-attended (standing room only), engaged and productive. One of my favorite parts was that, after a short explanation of why "flappause," or flapping one's hands for applause, was more sensory-friendly than clapping, the entire audience flapped instead of clapping.

Here's the overview I presented.

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Lindsey Anderson, Brent White and Nora,
Clarissa Kripke, and Shannon Des Roches Rosa

[image: three white women, one white man,
and one cream-colored small dog, posing for the camera.]
My name is Shannon Des Roches Rosa, I am the parent a fifteen-year-old high support autistic teen. I am also senior editor at Thinking Person’s Guide to Autism. I have the honor of introducing you to three wonderful experts.
Dr. Clarissa Kripke is Clinical Professor of Family and Community Medicine at UCSF and Director of the Office of Developmental Primary Care. The Office of Developmental Primary Care is dedicated to increasing the capacity of the health care system to serve adults with developmental disabilities. Dr. Kripke serves as primary care physician for many of the Bay Area’s most medically fragile and behaviorally complex people with developmental disabilities. Her perspective is also informed through parenting an autistic teen. 
Brent White is Autistic/Neurodivergent/Dyslexic. He designed and directs the ACAT Program ofthe non-profit Ala Costa Centers and the Berkeley Unified School District in Berkeley, CA. He also designed and directs the ACT adult day program. He lives a quiet life in his small apartment with his dog Nora, cat Bill, a few thousand books and an impressive collection of early Disneyland memorabilia.
Lindsey Anderson is a teacher at Ala Costa Adult Transition Program in Berkeley, California. She is a neurodivergent autistic queer activist raised in the South. Lindsey currently works with neurodivergent communities to restructure historical narratives to be written by and to focus on neurodivergent perspectives.
We understand how many of you are here because you experience crises, and need support. We do, too.
This is an emotional topic, and we want to respect that. We also want to reaffirm that it is OK and even necessary to ask for help, if you are in a situation you cannot handle on your own. We want everyone here to be aware of what your options are, and how many options there are.
We’d like to ask people to have respect for their kids’ or clients’ privacy when asking questions. You can ask us questions afterward, privately, and we will answer those questions to the best of our ability, but please know that Dr. Kripke specifically cannot give medical advice to people who are not her patients.
I’d also like to remind people to please respect Lindsey’s and Brent’s experience, especially when it comes to understanding what it’s like to be autistic. Autistic perspectives on these matters are included too rarely, and I personally have been so grateful for the insights of autistic people when it comes to supporting my own son. 
We are here today to discuss reasons why autistic people of all ages may be aggressive or self-injurious, to help keep your kids feeling secure, well-cared for, understood, and safe.
Again, we want to also support parents and families. Being in crisis is not the same as being a failure. Nor is it a personal failure to admit you and your child need help. Nor is everything fixable. But things can usually be so much better if we understand reasons why autistic kid and adults can be aggressive and self-injurious.
Aggression and self-injury triggers can include:
  • Frustration
  • Lack of communication options
  • Illness
  • Abuse
  • Needs and wants not being respected. 
  • Sensory overload.
Sometimes, autistic kids are frustrated because the don’t understand why they are different, or are mad that they’re different. Youshould tell your kids that they’re autistic. To quote one of my favorite autistic writers, Chavisory, “They already know that they’re different. You can’t keep them from knowing they’re different by not telling them.”
Sometimes, these matters can be addressed by modifying a person's environment. Many environments are unfriendly to autistic sensory systems, especially since autistic people can't always filter input the way non-autistic people can. Environmental triggers to be aware of include:
  • Echoes
  • Flickering lights
  • Perfume
  • Sounds (many autistic people have "super hearing, and hear things you don't)
Sometimes communication is a factor — even for those autistic who have some language.
Make sure effective communication is in place. Do not let people discount a person’s need for communication, or say it’s too late. It’s never too late. Often-undiagnosed motor challenges that can interfere with an ability to communicate, or demonstrate an ability to communicate include:
  • Movement difficulties
  • Apraxia
  • Dyspraxia
Sometimes aggression and self-injury happen because non-autistic people do not recognize or respect autistic ways of being. It may seem odd to outsiders for a person to constantly want to have a straw in their mouth, for instance, but holding that straw may be intensely soothing to that person and allow them to function in the world better. So if a person needs their environment just so, or needs to repeat phrases for reassurance, and they are not being disruptive ... the humane option is to accommodate the autistic person's preferences.
Sometimes, autistic people cannot manage without medications. While we need to be aware that autistic people often react atypically and paradoxically to medications, that medications should not be used as chemical restraints, and that the environmental, communication, and understanding-based approaches to support should be tried first, some autistic people do rely on medications to be able to function in the world. This needs to be respected as well.

Wednesday, January 6, 2016

Hillary Clinton's Autism Plan: In Which Autistic People Are Deserving Human Beings

Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism

Hilary Clinton's campaign published an autism plan yesterday. It's like nothing I've ever seen in an autism-centric policy statement, in a good way. It's not perfect, because this is politics, and politics are more about compromise and incremental gains than revolutionary change. But throughout the statement, autistic people are treated as human beings with legitimate and sorely unmet needs, and not the usual (infuriating-to-read) millstones, pity magnets, or financial black holes that are tearing the fabric of families, not to mention our nation's budget, apart. Human beings who deserve to be prioritized. That's welcome progress, and I would like to see such outlooks become our country's policy reality.

The author and her son
[image: selfie of two white
people on a twilight hilltop.]
As the parent of a beloved autistic teenager, and as a person who adores her autistic friends, I am pleased that so many of the proposals are in line with what autistic, autism, and disability advocates want, and have been pushing for -- for years. These are also topics the community at Thinking Person's Guide to Autism asks after, almost daily.

The core of the Clinton autism statement is as follows:
Hillary Clinton believes that our country must make supporting individuals and families with autism a priority—for the millions of people living with autism and their loved ones, and millions more who will be diagnosed in the future. As president, Clinton will:
  • Conduct a nationwide early screening outreach campaign to ensure that all children, and in particular children from underserved backgrounds, can get screened for autism.
  • Push states to require health insurance coverage for autism services in private insurance plans as well as marketplace plans offered in the state so that people with autism are not turned away.
  • Launch the Autism Works Initiative to extend new resources and establish public-private partnerships that will connect people with autism with employment opportunities.
  • Authorize the first-ever adult autism prevalence study in the U.S. so that we improve our understanding of how to identify, serve, and support adults on the autism spectrum.  
Here are Clinton's specific proposals that make me do a hopeful little dance:
  • Stepping up early autism screenings, especially for underserved communities. Girls, low income families, and kids of color are emphasized specifically, for being too-often overlooked in the current systems. Including sorely needed outreach strategies as part of this effort. Ensuring that insurance and Medicaid cover this outreach.
  • Increasing access to autism services -- and a wider range of services, including assistive technology, including Medicaid and Military Families coverage, and including transparent accountability for providers like Medicaid.
  • Centering autistic kids' safety as a matter of personal freedoms/rights, while condemning mechanical and chemical restraint and seclusion practices, and asking for more staff education, understanding, and training. Also bullying prevention.
  • TRANSITION PLANS. All caps as my son is fifteen, his transition to adulthood is increasingly at the front of my brain, yet it seems most people and their families have to figure this out on their own, and frantically cobble a unique plan together from scraps, whispers, and elusive options. We need guidelines and timelines and systematic supports, to make transition plans not just doable but more straightforward for ever person who will need one.
  • Person-centric living and working options for autistic adults. No sheltered workshops, no institutions. My son, his friends, my friends, deserve better choices for where they live and work. They should be part of their communities.
  • Encouraging all states to stop forcing people with disabilities to live in poverty by making ABLE savings plans available throughout the Union.
  • Increased supports for caregivers. My son is a high-support individual. He and his family are very lucky, in terms of being able to provide supports via insurance as well as out-of-pocket. Yet the coverage we have available is still rarely enough, for my son, as well as for his family. We need to do better for everyone involved, so that everyone involved experiences the best quality of life possible.
  • A research plan that puts (existing) patient services, employment, and housing first. And never once mentions "cure," "prevention," or "recovery."
  • The first-ever US adult autism prevalence study. In the UK, autism prevalence is nearly the same in adults as in children. Setting a similar precedent in the US would be tremendous, and a way to detect autistic adults who need supports but had previously eluded detection due to changing and/or insufficiently sensitive diagnostic criteria.
  • Enforcement. Another huge one. None of these proposals will be of much use if they aren't enforced. I'll quote from the campaign directly here:
    "Clinton will also pursue a broader enforcement agenda that protects the rights of people with autism: to ensure that children who are diagnosed are referred for services, to enable them to receive the assistive technologies to which they are entitled under the law, to guarantee the protections of mental health parity legislation and of the Americans with Disabilities Act, and to expand funding for the protection and advocacy groups that play a pivotal role in sustaining the progress we have made."
What Needs Work?
  • I'm skeptical of the MSSNG genetic research program, as it sparked the #NotMSSNG social media awareness campaign by autistic people and their supporters. We need more research into autism genetics, in terms of understanding -- but the program is helmed in part by the causation-oriented organization Autism Speaks, and that makes me worry.
  • We need more research into co-occurring and overlooked conditions. So, so many autistic people need support for anxiety, depression, gastrointestinal issues, processing, sensory, and other difficulties, as well as underdiagnosed disorders like Ehlers-Danlos, Tourette's, OCD, dyslexia, and dyspraxia. Addressing these needs would greatly improve autistic people's quality of life.
  • I'm glad to see assistive tech like speech devices mentioned -- I hope this includes screenings, evaluations, and school/family trainings as well. My son is learning to use AAC, and it is a long, intensive process for us all. Plus I was told for years (inaccurately) that he didn't need AAC because he had some language. Merely providing the tech is not enough. Multiple supports need to be in place.
  • I'd like an assurance that autistic people will be involved in helping take Clinton's autism plan from policy to reality. Nothing About Us Without Us, as The Autistic Self-Advocacy Network says.

Tuesday, January 5, 2016

In A Different Key: One (Deeply Flawed) Story of Autism

M. Kelter
TheInvisibleStrings.com

In A Different Key, by John Donvan and Caren Zucker, is described by its publisher as “the definitive history of autism.” Its story begins in the 1930s, with a portrait of "autism's first child" Donald Triplett, then moves to "father of child psychiatry" Leo Kanner, who was the one to diagnose Triplett with autism. In the following decades, readers encounter a variety of researchers and parents as they grapple with questions about the origin and nature of autism.

This history is a complex and nuanced one, yet Donvan and Zucker tell a fairly straightforward David and Goliath narrative. The role of the villain, Goliath, is played not by a person, but by autism itself. Anyone fighting autism becomes the book's sympathetic, underdog David. Which means that, unfortunately, In A Different Key becomes a chronological collection of anecdotes about these "heroic" battles.

[image: Book cover: Beige background
with overlapping colorful rectangle
outlines surrounding black text reading:
"In a Different Key
The Story of Autism
John Donvan
Caren Zucker"]
Donvan and Zucker also fail to provide balanced, comprehensive information about autism. They present autistic traits as cryptic and strange, with autistic people themselves characterized as walled off in emotionless prisons. The authors describe well-known facets of autism such as lack of eye contact, a need for sameness, and so on -- but not much more.

This is a strange oversight, given that the subtitle of the book is “The Story of Autism.” It appears that, once the authors positioned autism as unquestionably bad, they did not feel a need to describe autistic people or autistic traits further. They seem to assume readers will automatically compare autism against non-autistic standards of normalcy, and understand why autism needs to be “defeated.”

The book's simplistic treatment of autistic traits and people is a serious concern, such as when a child's autistic traits are (mistakenly) offered as proof of an inability to feel love or emotion. Certainly, some autistic traits can be extremely painful or difficult to manage, and autism can be a disability. And, at the same time, many traits, like echolalia and stimming, can be a natural, healthy part of autistic life. They can be paths to joy and fulfillment, not obstacles. Yet the range and complexity of such spectrum traits remain unexplored by the authors.

In fact, if you were to only learn about autism by reading In a Different Key, you would imagine it to be a grim, living death sentence.

One consequence of Donvan and Zucker’s stigmatizing approach to autism is that, by definition, any effort to eliminate autistic traits is seen as noble and beneficial. This is where the book loses its ethical footing: by shoehorning autism into the role of villain, the authors are rejecting the sort of cautious, sensitive distinctions a subject like autism requires.

This ethical imbalance becomes apparent once we meet the book's primary hero and savior: UCLA psychology professor Dr. O. Ivar Lovaas. In the late 1950s, Lovaas developed techniques for attempting to normalize children with perceived atypical behaviors. His Applied Behavioral Analysis, or ABA therapy, involved shaping the behaviors of autistic children through the systematic application of “aversives” -- including physical violence, and cattle prods. Non-verbal children were shocked or slapped in order to elicit speech. Or, if an autistic child found eye contact uncomfortable, they would be traumatized, using these methods, until they held a gaze.

Zucker and Donvan do not frame this origin story of ABA therapy -- still the most commonly used contemporary therapeutic approach for autistic children -- as a dark chapter in autism history. They don't even use neutral phrasing. Rather, Lovaas's abuses of autistic children are presented as necessary measures in the fight against autism; and his “victories,” such as forcing a child to suppress all their autistic traits, are also the authors' victories.

In A Different Key's coverage of Lovaas is not only a celebration of the effects of aversives. It also assures readers that many children seen by Lovaas were given rewards like ice cream -- once they learned to follow commands. One girl is described as “recovering” from autism, all because a Lovaas follower gave her cookies.

Seeing abuse and cookies as equally effective forces in a productive cost/benefit analysis: that mindset is only possible if autistic people are objectified -- not seen as human beings, but instead as as problems to be solved. That's how a sadistic child abuser with a cattle prod becomes the hero of In A Different Key.

The authors do include some genuinely moving stories. The efforts of parents in the 1960s, both in organizing and pushing for their children's education rights, and in fighting against damaging parenting myths (e.g., the “refrigerator mother” theory), are presented as necessary and valuable additions to a history of autism.

But when autistic advocates push for similar recognition, for basic rights and to fight damaging myths about autistic people themselves, the authors react not with praise but with hostility. Two anecdotes illustrate this contradiction:

In the chapter From Courtroom to Classroom, a father sues his local school district in an effort to win more therapeutic supports for his son. During a court hearing, he yells at county officials, and berates anyone who challenges his requests. The authors acknowledge that, for strategic purposes, the father unfairly demonizes one of his opponents. But, he also wins his case. The authors frame his yelling and attacks in a positive light, as tactics that are just part of the job when you are a parent activist.

Fair enough.

In a later section, readers are introduced to autistic self-advocate and disability rights activist Ari Ne'eman. He is presented as tenacious: his style is blunt, and when people criticize his views, he doesn't waver. But the authors suggest that Ne'eman's tenacity and stubbornness -- the same traits that won the father's court case for his son -- are actually proof of autistic cognitive impairment. Ne'eman is portrayed not as a devoted activist, but rather as an emotionless autistic robot who lacks the ability to connect with people, or feel empathy. Donvan and Zucker even describe Ne'eman as lacking empathy twice in the same chapter, to make sure readers get their message.

It's ugly stuff. And it underscores the inevitable problems that arise when a complex topic like autism is reduced to a simplistic, black-and-white, good-versus-bad narrative.

It's also frustrating. In A Different Key did not need to include these toxic, unnecessary divisions between parents and autistic people. Other recent books that cover similar territory -- Uniquely Human, NeuroTribes, and The Real Experts -- share stories from many different autism and autistic perspectives, without constantly shutting out or belittling a particular group.

Those similarly-themed books also illustrate why Donvan and Zucker should have chosen a more humanizing and realistic narrative. The authors could have educated readers about the challenges autism can bring, and also the vibrant, meaningful connections autism can forge. They could have told the powerful story of parent activists, and also the powerful story of autistic activists.

Instead, the authors have written an outdated autism-as-villain story, and their "definitive history" is deeply flawed. Ultimately, In A Different Key is a self-described “story of autism” -- that cynically leaves out truly helpful material about autism and autistic people.

Saturday, January 2, 2016

Talking With ASAN's Sam Crane About Her Role on the Interagency Autism Coordinating Committee

Sam Crane
[image: A smiling white person with ear-
length brown hair, wearing a black
suit jacket and a white pearl necklace.]
What is the IACC, or Interagency Autism Coordinating Committee, and what does it do? We talked with newly seated IACC member Sam Crane about her role, how the IACC works, its goals, why it needs to broaden its focus beyond causation -- and her experience as one of the committee's autistic minority.

The next IACC meeting is scheduled for Tuesday, January 12, and will be webcast live. Community members who would like to submit written comments for the meeting should do so by Tuesday, January 5th.

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TPGA: How would you describe the IACC to someone who isn't aware of what the IACC is, and what it does, beyond the standard -- rather stuffy -- description?

Sam Crane: The Interagency Autism Coordinating Committee is the government's attempt to keep track of the very large number of research studies, pilot projects, and ongoing programs that concern autism in some way. These include the autism prevalence studies that the Center for Disease Control conducts, brain research funded by the National Institute of Health or by private foundations, university centers on developmental disabilities, and even autism programs funded through Medicaid. There are so many research projects and programs that, without coordination, there's a real danger of ending up with huge gaps in research or services, or unnecessary duplication of research and services.

That said, the IACC's job isn't just to keep track of what everyone's doing - it also makes recommendations and helps to promote the research that it thinks is most important. That's why it really matters to have the right people at the table. A little more than half of the members are from government agencies that fund research or services -- such as the NIH, CDC, and the Centers for Medicare and Medicaid Services. It also includes a lot of members of the public, such as representatives from autism advocacy groups, universities, and private foundations. At least two of the members of the public have to be autistic self-advocates, another two have to be family members, and two have to be representatives of autism research, advocacy, or service organizations. In practice, there are a lot more family members and organizational representatives than self-advocates, but I'll get to that in more detail later.

TPGA: This is your first time serving on the IACC. What motivated you to apply? What are your goals for being on the IACC?

SC: I've got a background in psychology research and was very interested in being part of that work again. I wrote my undergraduate thesis on language learning and worked for a year in a language development lab before deciding to go into advocacy instead. I also wanted to make sure that there was adequate representation on the committee by self-advocates, and particularly by members of self-advocacy organizations. Right now I'm the only representative of an autistic self-advocacy organization on the IACC. Before I joined, Ari Ne'eman and Scott Robertson, both co-founders of ASAN, took turns being the only representatives from a self-advocacy organization on the IACC.

My main goal on the IACC is to try and push for more research that responds to felt needs in the community: things like communication needs, access to quality health care, trauma-informed care, and the needs of transitioning youth and adults. I'm particularly interested in addressing how underlying values guide choices about what to research and what conclusions people draw from the results of research. Sometimes when researchers don't talk enough to the people they're studying, they can pick the wrong topics and interpretations -- this is true not only in the autism world but across a wide spectrum of academic research. In the autism world, we see over-spending on research about therapies to increase eye contact and reduce stimming, or about autism causation, and under-spending on research about things that really improve quality of life like augmentative communication. 

TPGA: You work for ASAN, the Autistic Self-Advocacy Network. Are you serving as an ASAN representative, as an individual, or as both?

SC: It's a complicated question. The law says that there need to be at least two autistic individuals on the IACC and at least two representatives of autism research, advocacy, or service organizations. Right now there are three autistic people on the IACC, and all of us are also representatives of either a services or advocacy organization, or a university. So I'm really wearing two hats: I'm there as an autistic individual and as a representative of ASAN. When I sit on the IACC, the Autistic Self Advocacy Network is written right under my name.

TPGA: How representative is the current makeup and membership of the IACC, compared to the real-world autism and autistic communities?

SC: It's not really representative at all. More than half of the members are federal agency representatives -- some have a personal connection to autism, and others don't. Of the fourteen public members, only three of us are actually autistic. There are many, many more people on the IACC who are family members, representatives of autism-related organizations, or both, than there are self-advocates. There are few people of color among the public membership and no autistic people of color. All of the public members are "professionals," meaning that there's little class or income diversity.

That's something that we need to change. When the Autism CARES Act was being passed in 2014, we lobbied to make sure that at least one of the autistic members of the IACC would be a person who used Medicaid home and community-based services -- which means they'd have to be someone who needed significant supports in order to live in the community. Otherwise even the self-advocates are trying to talk about services and programs that they don't personally use. In the meantime, I'm going to do my best to make sure that my work on the IACC is informed by a wide range of experiences, and that's where my work with ASAN is going to be very helpful. We have a very diverse community base.

TPGA: Do you think this IACC has more potential to effect positive, useful change than previous committees? Do you think the committee has a reasonable grasp on the matters of most immediate concern to autistic people, and/or their families?

SC: We try to make every year better than the ones that go before it, but this year we have some added advantages. In the last Autism CARES Act reauthorization, we strengthened the IACC's responsibility to talk not only about research but also about federal programs. That means that the committee can't simply ignore long-term services and focus mainly on causation, screening, and prevention like it has in the past.

There's still skepticism among some people on the Committee, though, about whether people with very significant needs can benefit from quality communication interventions and integrated long-term supports. These Committee members are very committed to biomedical and causation research. We have to work on that.

TPGA: You recently participated in your first official IACC meeting. Were there any surprises, good or bad?

SC: I was very well prepared by people who've served on the IACC before me. Even then, I was surprised by how hostile some Committee members were to the self-advocates in the room. They went out of their way to say that self-advocates are not representative of people with the most significant needs, who supposedly can't self-advocate. It was insulting, partly because of the three self-advocates on the IACC, two of us are brand new members. I'd never met these other committee members before, they know absolutely nothing about my personal history or about my support and medical needs.

It also assumes that all self-advocates are only representing ourselves, which again just isn't true and is deeply unfair to self-advocates on the panel. Many of the people representing autism organizations or research groups are also parents, but nobody's accusing them of looking out only for their own children. Why should people make similar accusations of self-advocates who've also made a career out of advocacy? I spend most of my day working to secure access to long-term supports and services, communication supports, self-determination, and health care -- including and especially for people who have complicated medical needs, communication barriers, and support needs. ASAN chose to focus on those issues because they affect the whole community. 

TPGA: Was the IACC meeting space aware of, and able to provide, sufficient accommodations for autistic members, or speakers?

SC: I have a pretty hard time sitting still throughout day-long meetings, and I know that others have it even harder. I think a lot of autistic members of the public who came to speak weren't able to stay the whole time. There is a webcast for people who can't be there in person, but of course it's not quite the same.

TPGA: What advice would you give to people who are not on the IACC but still want to contribute to IACC proceedings and help direct policy?


SC: Every time we meet as a full committee, there's a window for sending in comments. You can send them in writing, and also sign up to deliver comments in person. Information on how to do that is here: https://iacc.hhs.gov/public-comment/index.shtml. Comments about research and services priorities are helpful. It also helps to tell us about particular research studies or services programs that you think are particularly important or particularly flawed. There's a very pressing need for comments from self-advocates, especially self-advocates who have personal experiences particular interventions, services, and supports. It really helps to see people sharing their personal stories about being underestimated and/or segregated, and what kinds of interventions and services helped them reach their goals.

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Sam Crane is the Legal Director and Director of Public Policy at the Autistic Self Advocacy Network, where she spends most of her time working on access to services, health care, communication supports, and the broader community. She is also one of three autistic members of the Interagency Autism Coordinating Committee.