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.
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).
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.”
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.
Have you ever fretted about what would happen if someone who has not learned to comply with commands encounters someone who expects immediate compliance? Suppose further that the person who relies on immediate compliance might escalate his or her demands for compliance when the other person, say a child who has behavior problems, does not immediately comply.
In a family or a classroom we might call this a “power struggle.” In the language of Patterson and his colleagues (Patterson, 1982; Patterson & Reid, 1970; Patterson, Reid, & Dishon, 1992), it’s the reciprocal escalation that forms the coercion cycle. When it occurs between an officer of the law and a child with Autism, I’d call it a recipe for disaster, even a nightmare scenario. It’s one about which I’ve written previously, more than once.
Diagnosed as autistic, the sixth-grader was being scolded for misbehavior one day and kicked a trash can at Linkhorne Middle School in Lynchburg, Virginia, in the Blue Ridge Mountains. A police officer assigned to the school witnessed the tantrum, and filed a disorderly conduct charge against the sixth grader in juvenile court.
Just weeks later, in November, Kayleb, who is African-American, disobeyed a new rule — this one just for him — that he wait while other kids left class. The principal sent the same school officer to get him.
“He grabbed me and tried to take me to the office,” said Kayleb, a small, bespectacled boy who enjoys science. “I started pushing him away. He slammed me down, and then he handcuffed me.”
In Katie Couric Apologizes for Anti-Vax Episode, but It’s Not Enough, Phil Plait (DBA “Bad Astronomer”) explains why Ms. Couric’s mea culpa for her giving excessive credibility to the incredible, post-hoc-ergo-propter-hoc stories of parents claiming vaccinations caused problems for their children. Mr. Plait, who branches out beyond astronomy to cover scientific matters in general from time to time, comes to essentially the same conclusion as Michael Hiltzik: No matter how strong her disclaimer, and Ms. Couric’s falls a bit short of being an abject retraction, she can’t take back the effect of having provided the highly visible stage for the anti-vaccination advocates.
It’s coverage like this, the embrace of facilitated communication, and even the pervasive endorsement of learning styles that makes it hard for reason and evidence to make headway in providing services for individuals with disabilities. Those of us who champion evidence-based approaches sometimes feel like were swimming upstream in sewer.
In “Katie Couric backs off from her anti-vaccine show–but not enough,” Michael Hiltzik provided a sensible and nuanced analysis of Ms. Couric’s recant of her recent mistaken grant of airtime to anti-vaccination advocates. Mr. Hiltzik gives Ms. Couric credit for “fessing up” to many of the mistakes in the show but he very simply noted, “You should read [her entire Huffington Post article]. But you should know that Couric didn’t go far enough.”
After cataloging the many appropriate retractions in Ms. Couric’s mea culpa, Mr. Hiltzik explains the basic problem: People are going to remember the heart-wrenching scenes from the original broadcast, not the cool, rational explanation of the print retraction. I recommend readers review his well-reasoned and -written column.
Phil Plait, who is known for his “Bad Astronomy” Web presence (and let’s not confuse that with astrology, which is bad, forsooth!), hit the Internet with a critique of Jennifer “Jenny” McCarthy’s appointment to host a television show. Over on his Slate blog, Mr. Plait (he has a Ph.D. from the university where I teach, so I could say “Dr.” but we refer to each other as “Ms.” or “Mr.” in this neighborhood) provides what I might describe as something close to a blistering indictment of the appointment:
EBD Blog provides news and commentary about Emotional and Behavioral Disorders in children and youths. These problems have sometimes been called "emotional disturbance" or even "serious emotional disturbance." Whatever they are called, these problems are real, painful, and important. They often affect other people as well as having deleterious effects on school, social relations, and other aspects of the individuals' lives.