Archive for the 'The press' Category

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A parent’s perspective on autism

Katherine Osnos Sanford, who blogs at KatherineSanford.com, published an article in the Washington Post 26 April 2016 under the headline, “Want to know what it’s really like to have a child with autism?” that provides an insightful glimpse into some of the thoughts of parents of young children with autism. In just over 1100 words, Ms. Sanford captures a lot. There’s Saturday morning errands, education issues, considerations about the future, and family visits with neighbors.

There’re also challenges. Dressing an eight-year old who uses diapers. Contending with a meltdown in a public place.

My husband and I are at our local garden store, running errands on a typical Saturday, when Mae, our 8-year-old, becomes agitated. She quickly goes from bunny-hopping down the Azalea aisle — smile on her face, dimples on display — to growing fidgety and vaguely cranky to screaming and hitting herself. The sound is horrifying. Heads turn toward us.

Mae is wearing a bathing suit under her leggings, not because we have plans to go to the pool but because she still wears diapers and recently developed a habit of removing them — spandex and complicated straps slow her down. In this moment, she’s got rock-star hair: What’s usually a neat black pageboy is sticking up four inches, thanks to the way she compulsively rotates her head back and forth in bed as she falls asleep. Her beautiful long eyelashes now are plastered together with inconsolable tears — trying to intervene only ever makes it worse.

I don’t want to foist this on other people, and I want to protect my daughter. So I scoop her up — for now, at 48 pounds, she’s still light enough to carry — and take her back to the car, where I can strap her into her car seat, keep her from hurting herself and limit the sensory assault on her brain.

It occurs to me that it’s Autism Awareness month, and we’ve just hosted our own autism awareness event at the store.

Go read the entire article.

Recommendations for ending discrimination


Book cover, courtesy NAP

The U.S. National Academy Press published a book 20 April 2016 entitled Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change that assembles and summarizes recommendations about how to reduce negative attitudes, beliefs, and behaviors directed toward individuals who have mental health or substance abuse disorders. Although the bulk of the document addresses stigma in a general way and primarily with reference to research on adults, one section focuses specifically on stigma against children and youths, calling it “a serious concern because of its short-term impacts, including decreased feelings of self-worth and willingness to enter treatment, and because of the deleterious long-term effects of untreated mental illness or substance use disorders” (p. 2-13).

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Depression, suicide, choice, and our kids

In a wrenching obituary and follow-up articles, Eleni Pinnow courageously recounts her sister’s suicide following bouts of depression. Ms. Pinnow wrote, “Aletha Meyer Pinnow, 31, of Duluth (formerly of Oswego and Chicago, IL) died from depression and suicide on February 20, 2016.”

I know that most readers of EBD Blog are looking for content regarding children and youths. At 31, Aletha Pinnow was not a child nor a youth, but she had been, and we can bet that her depression was not a recent development. The reports I’ve seen do not make clear that she had a life-long condition, but it would not surprise me.

The obituary does have a special twist, though:

Aletha found her true passion in fifth grade when she decided to become a special education teacher. She graduated high school a year early to enroll in her future alma mater, Northern Illinois University (NIU), in anticipation of that goal. It is the ultimate understatement to say that Aletha loved working with people with disabilities (especially people on the autism spectrum). She was a special education teacher for over a decade and she was, as she was happy to tell you, awesome at it. She saw the potential and value of every single one of her students and she loved them with a ferocity that would make a rabid mother bear quiver.

One can learn more about Aletha in what I think is the original obituary, and a follow-up from the Washington Post.

Is suicide a “choice?” I’m not so sure. I suspect environmental conditions compel people to kill themselves. We need to understand that phenomenon better. Because suicide is not a repeatable behavior, it is impossible to complete a behavioral analysis of it. This presents a substantial problem. That does not authorize us to go off willy-nilly, spouting untestable hypotheses. The topic needs to be examined systematically.

But, importantly, as Eleni Pinnow has done, it must come out of the shadows. We can’t hide this. Especially when we see depression in children and youths. The risk is too great that that subsequently there will be substantial problems.

Summary of workshop on measuring SED in children

On 1 February 2016, the US National Academy of Sciences published a booklet that summarized the presentations and discussion at a workshop on measuring serious emotional disturbance in children. Some readers of EBD Blog probably will want to secure a (free) copy. The accompanying image, which is a 2013 infographic from the US Centers for Disease Control, appears on page 19 of the report. The following is the recommend citation for the report:

National Academies of Sciences, Engineering, and Medicine. (2016). Measuring Serious Emotional Disturbance in Children: Workshop Summary. K. Marton, Rapporteur. Committee on National Statistics and Board on Behavioral, Cognitive, and Sensory Sciences, Division of Behavioral and Social Sciences and Education. Board on Health Sciences Policy, Institute of Medicine. Washington, DC: The National Academies Press.

http://www.nap.edu/catalog/21865/measuring-serious-emotional-disturbance-in-children-workshop-summary

Matt Brodhead on halting the spread of FC

While we’re on the topic of facilitated communication (FC or “supported typing” or “rapid prompting”), readers might want to watch a TEDx presentation by Professor Matt Brodhead. As though familiar with TED talks know, this is brief presentation and in it Professor Brodhead focuses squarely on a clear presentation about FC: “We must stop this now.”

Criminalizing mental health problems

Police officers sometimes must use extreme force to protect the population (us!) and themselves from harm. I get that. I am fretful, however, about their use of force in situations with people who have EBD.

As loyal readers know, I have remarked repeatedly about the potential dangers that emerge when individuals schooled in demanding immediate compliance (e.g., “Put that down right now”) issue such commands in very very domineering language to people who have learned to resist or flee in the presence of forceful commands— i.e., many individuals such as kids with Autism, oppositional disorders, and other EBDs.

So, what does an ill-trained officer do in such a situation (which she or he shouldn’t have initiated in the first place)? Well, escalate it: “I told you to put that f’ing thing down. NOW DO IT OR I’LL LIGHT YOU UP!” Then the officer might move toward the individual with EBD in a take-control sort of way. The individual with EBD, predictably, either makes a threatening movement, dives, or gets the hell out of Dodge City. The officer responds accordingly, still in domination mode.

Next? Taser…gun…? In “This is Crazy,” Brave New Media asks important questions about encounters between people with mental illness and the police. Warning some scenes may be wrenching. Please watch this film. Please share it with others.

Georgia students with EBD unnecessarily segregated and denied equal services

On 15 July 2015, The Civil Rights Division of the U.S. Department of Justice declared that the U.S. state of Georgia had been illegally segregating students with behavior disorders from their peers and failing to provide them with appropriate educational services. The case arises because of a public system in Georgia called the Georgia Network for Educational and Therapeutic Support (GNETS) Program, a statewide system of services designed for students with emotional or behavioral health needs that began in the 1970s and today serves approximately 5000 students.

According to a letter sent to Georgia Gov. Nathan Deal and Attorney Gen. Sam Olens, Georgia

in its operation and administration of the GNETS Program, violates Title II of the ADA by unnecessarily segregating students with disabilities from their peers. In addition, the GNETS Program provides opportunities to its students that are unequal to those provided to students throughout the State who are not in the GNETS Program.

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National Academies EBP guidelines

The US National Academies Press published a a booklet recommending a framework for promoting evidence-based practices in the areas of mental health and substance abuse. The focus is not expressly on children and youths or on education, which are key concerns for EBD Blog, but the emphases on evidence-based practices (EBP) in mental health and substance abuse certainly overlap sufficiently to make this report of potential interest to readers.

Because the guidelines come from the National Academies, they will carry substantial weight. For the purposes of many who work with students who have EBD, there is similar useful guidance about EBP from a work group composed of leaders from the Division for Research—Bryan Cook (chair), Viriginia Buysse, the late Janette Klingner, Tim Landrum, Robin McWilliam, Melody Tankersley, and Dave Test— of the Council for Exceptional Children (CEC). In January of 2014, the CEC group presented guidance to help consumers determine whether a practice should be considered as (a) evidence-based, (b) potentially evidence-based, (c) having mixed evidence, (d) having insufficient evidence, or (e) having negative evidence. Readers can download their own copy of the standards from the CEC Website and read the CEC press release about the standards.

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