The Argument Over a Long-Standing Autism Intervention

Jessica Winter

The New Yorker

Originally posted 12 Feb 24

Here are excerpts:

A.B.A. is the only autism intervention that is approved by insurers and Medicaid in all fifty states. The practice is widely recommended for autistic kids who exhibit dangerous behaviors, such as self-injury or aggression toward others, or who need to acquire basic skills, such as dressing themselves or going to the bathroom. The mother of a boy with severe autism in New York City told me that her son’s current goals in A.B.A. include tolerating the shower for incrementally longer intervals, redirecting the urge to pull on other people’s hair, and using a speech tablet to say no. Another kid might be working on more complex language skills by drilling with flash cards or honing his ability to focus on academic work. Often, A.B.A. targets autistic traits that may be socially stigmatizing but are harmless unto themselves, such as fidgeting, avoiding eye contact, or stereotypic behaviors commonly known as stimming—rocking, hand-flapping, and so forth.

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In recent years, A.B.A. has come under increasingly vehement criticism from members of the neurodiversity movement, who believe that it cruelly pathologizes autistic behavior. They say that its rewards for compliance are dehumanizing; some compare A.B.A. to conversion therapy. Social-media posts condemning the practice often carry the hashtag #ABAIsAbuse. The message that A.B.A. sends is that “your instinctual way of being is incorrect,” Zoe Gross, the director of advocacy at the nonprofit Autistic Self Advocacy Network, told me. “The goals of A.B.A. therapy—from its inception, but still through today—tend to focus on teaching autistic people to behave like non-autistic people.” But others say this criticism obscures the good work that A.B.A. can do. Alicia Allgood, a board-certified behavior analyst who co-runs an A.B.A. agency in New York City, and who is herself autistic, told me, “The autistic community is up in arms. There is a very vocal part of the autistic population that is saying that A.B.A. is harmful or aversive or has potentially caused trauma.”

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In recent years, private equity has taken a voracious interest in A.B.A. services, partly because they are perceived as inexpensive. Private-equity firms have consolidated many small clinics into larger chains, where providers are often saddled with unrealistic billing quotas and cut-and-paste treatment plans. Last year, the Center for Economic and Policy Research published a startling report on the subject, which included an account of how Blackstone effectively bankrupted a successful A.B.A. provider and shut down more than a hundred of its treatment sites. Private-equity-owned A.B.A. chains have been accused of fraudulent billing and wage theft; message boards for A.B.A. providers overflow with horror stories about low pay, churn, and burnout. High rates of turnover are acutely damaging to a specialty that relies on familiarity between provider and client. “The idea that we could just franchise A.B.A. providers and anyone could do the work—that was misinformed,” Singer, of the Autism Science Foundation, said.

The info is here.

Divergent roles of autistic and alexithymic traits in utilitarian moral judgments in adults with autism

Indrajeet Patil, Jens Melsbach, Kristina Hennig-Fast & Giorgia Silani
Scientific Reports 6, Article number: 23637 (2016)
doi:10.1038/srep23637

Abstract

This study investigated hypothetical moral choices in adults with high-functioning autism and the role of empathy and alexithymia in such choices. We used a highly emotionally salient moral dilemma task to investigate autistics’ hypothetical moral evaluations about personally carrying out harmful utilitarian behaviours aimed at maximizing welfare. Results showed that they exhibited a normal pattern of moral judgments despite the deficits in social cognition and emotional processing. Further analyses revealed that this was due to mutually conflicting biases associated with autistic and alexithymic traits after accounting for shared variance: (a) autistic traits were associated with reduced utilitarian bias due to elevated personal distress of demanding social situations, while (b) alexithymic traits were associated with increased utilitarian bias on account of reduced empathic concern for the victim. Additionally, autistics relied on their non-verbal reasoning skills to rigidly abide by harm-norms. Thus, utilitarian moral judgments in autism were spared due to opposite influences of autistic and alexithymic traits and compensatory intellectual strategies. These findings demonstrate the importance of empathy and alexithymia in autistic moral cognition and have methodological implications for studying moral judgments in several other clinical populations.

The article is here.

The Autism Paradox

Kathleen K. Miller
AMA Journal of Ethics. April 2015, Volume 17, Number 4: 297-298

Through the process of researching this issue, I became fascinated with recent research on neurodiversity as it applies to autism. To oversimplify vastly, neurodiversity is the idea that neurological differences (including autism) are the result of normal variation. In other words, we may be creating pathology where there is none. Should we consider autism a disease? Or is it a variation of normal? This question has been the source of heated debate, with many autism advocates arguing that autism should not be considered a disease or disorder.

As a pediatrician, this is a question I struggle with. I support autism advocacy and the rights of people with autism. I believe we need to adjust our mental framework and see people with autism as more than their diagnoses.

The entire article is here.

The Myth of the Normal Brain: Embracing Neurodiversity

By Thomas Armstrong
AMA Journal of Ethics. April 2015, Volume 17, Number 4: 348-352

Here is an excerpt:

Such strengths may suggest an evolutionary explanation for why these disorders are still in the gene pool. A growing number of scientists are suggesting that psychopathologies may have conferred specific evolutionary advantages in the past as well as in the present. The systemizing abilities of individuals with autism spectrum disorder might have been highly adaptive for the survival of prehistoric humans. As autism activist Temple Grandin, who herself has autism, surmised: “Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by the social ones yakking around the campfire”.

Similarly, the three-dimensional thinking seen in some people with dyslexia may have been highly adaptive in preliterate cultures for designing tools, plotting out hunting routes, and constructing shelters, and would not have been regarded as a barrier to learning.

The entire article is here.

'Love Hormone' May Play Wider Role in Social Interaction Than Previously Thought

Science Daily
Originally published September 11, 2013

Researchers at the Stanford University School of Medicine have shown that oxytocin -- often referred to as "the love hormone" because of its importance in the formation and maintenance of strong mother-child and sexual attachments -- is involved in a broader range of social interactions than previously understood.

The discovery may have implications for neurological disorders such as autism, as well as for scientific conceptions of our evolutionary heritage.

Scientists estimate that the advent of social living preceded the emergence of pair living by 35 million years. The new study suggests that oxytocin's role in one-on-one bonding probably evolved from an existing, broader affinity for group living.

The entire article is here.

Andrew Wakefield: autism inc

Andrew Wakefield's 'dishonest and irresponsible' research into the causes of autism led to his being struck off by the General Medical Council. That would have ended most doctors' careers. Instead, the MMR 'martyr' moved to the US – and into reality TV

By Alex Hannaford
The Guardian
Originally published April 5, 2013

For three days at the end of January, the Renaissance hotel in Washington DC fills up with television executives from around the world. The Realscreen Summit is where the makers of reality TV gather to discuss ideas, negotiate deals and discover the next Apprentice or I'm A Celebrity. Among the estimated 2,200 people who had paid up to $1,600 (£1,050) this year to try to snag face time with an exec from Freemantle, TLC, Discovery or National Geographic was an Englishman in his mid-50s wearing jeans, a crisp, white shirt and loafers, and carrying a MacBook. On his badge were the words "Autism Team".

This man's pitch was a reality TV series about autism, and he had a short trailer on his laptop: an autistic child screams; another bites his mother's hand; another repeatedly and violently slams a book against his head. Then a narrator tells us that "every day across the world, medical symptoms of hundreds of thousands of people with autism are being ignored". Cue piano music and the titles, The Autism Team: Changing Lives.

The premise is that the autism symptoms suffered by the children in the promo (Jon, 14, who is "wasting away"; six-year-old twins "still not potty trained"; and 15-year-old Jack, who is "non-verbal and very self-injurious") have left their parents feeling helpless and alone — until, that is, the Autism Team steps in to save the day.

The entire story is here.

Recovery from autism spectrum disorder (ASD) and the science of hope

Editorial in The Journal of Child Psychology and Psychiatry
Sally Ozonoff JCPP Joint Editor
Originally published January 16, 2013
DOI: 10.1111/jcpp.12045


The Journal of Child Psychology and Psychiatry, and the field of developmental psychopathology in general, is keenly interested in stability and change, continuities and discontinuities, and prediction of outcome. This issue of the journal presents several articles that examine influences and predictors of child difficulties, such as avoidant behavior (Aktar et al., 2012†) and antisocial behavior (Rhee et al., 2012). The effects of maternal depression and parental anxiety on child outcomes are also explored in this issue (Aktar et al., 2012; Hughes et al., 2012), as are the stability of symptoms in autism spectrum disorders (Corsello et al., 2012; Simonoff et al., 2012). All add to our understanding of the basic mechanisms and developmental pathways that underlie atypical child development. I call your attention to one article in particular that explores these concepts from a different angle and brings solid science to an understudied topic with a very controversial and contentious history, namely recovery from autism spectrum disorder (ASD).

Fein et al. (2012) recruited 34 children with clearly documented early histories of ASD who no longer met criteria for any autism spectrum diagnosis and, even further, had lost all symptoms of ASD. They compared these children to a group of typically developing participants and found no differences on multiple measures independent of the group classification process. They conclude, rather modestly, that these results “substantiate the possibility of optimal outcome,” demonstrating that some children with a clear early history and accurate diagnosis of ASD do indeed move into the entirely normal range of social and communication development later in childhood. Fein et al. use the word “recovery” only once in their paper, in reference to the findings and claims of another study. Their avoidance of the word is likely intentional. In fact, scientific papers have largely steered clear of this word, although it is alive and well on the Web. Why has recovery been such a provocative concept?

Lovaas (1987) was the first to use the term “recovery” in relation to ASD, describing the outcomes of children he had treated using the methods of applied behavior analysis. He did not provide an explicit definition of recovery, but described this group of children as having normal educational and intellectual functioning. His interpretation of this outcome as “recovery” was embraced wholeheartedly by some and scrutinized skeptically by others. It was pointed out that many children who meet criteria for ASD attain this level of functioning, but continue to display significant symptoms. Whether they had achieved “recovery” that fit with the Merriam-Webster definition of “regaining or returning to a normal or healthy state” was disputed. Researchers have generally avoided the term for fear of being viewed as naïve, idealistic, political, or simply just not good scientists. But recovery has remained a very powerful construct, one that many parents talk about and that has been the subject of much media and internet attention.

The entire article and issue can be found here.

Autism Criteria Critics Blasted by DSM-5 Leader

By John Gever, Senior Editor
MedPage Today
Origianlly Published May 8, 2012

The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel's critics here, accusing them of bad science.

Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services.

Swedo spoke at the American Psychiatric Association's (APA) annual meeting, in her role as chairperson of the work group developing new diagnostic criteria for neurodevelopmental disorders in DSM-5, the forthcoming fifth edition of the APA's Diagnostic and Statistical Manual of Mental Disorders.

She was especially incensed by reports in consumer media about the Yale group's study, led by a New York Times article with a "blaring" headline that read, "New Definition of Autism May Exclude Many, Study Suggests." The Yale study, according to the Times article, found that most patients with Asperger's syndrome and about 25% of those with overt autism would not qualify for those diagnoses under DSM-5.

The entire story is here.

The Autism Wars

By Amy Harmon
The New York Times - News Analysis
Originally published April 7, 2012

THE report by the Centers for Disease Control and Prevention that one in 88 American children have an autism spectrum disorder has stoked a debate about why the condition’s prevalence continues to rise. The C.D.C. said it was possible that the increase could be entirely attributed to better detection by teachers and doctors, while holding out the possibility of unknown environmental factors.

But the report, released last month, also appears to be serving as a lightning rod for those who question the legitimacy of a diagnosis whose estimated prevalence has nearly doubled since 2007.

As one person commenting on The New York Times’s online article about it put it, parents “want an ‘out’ for why little Johnny is a little hard to control.” Or, as another skeptic posted on a different Web site, “Just like how all of a sudden everyone had A.D.H.D. in the ’90s, now everyone has autism.”

The entire story is here.

Meadowlands hospital neuroscientist fired over controversial autism treatment

By Susan K. Livio
The Star Ledger
Originally published January 10, 2012

Philip DeFina, PhD

The neuroscientist who would have overseen a controversial therapy for children with autism has been fired by Meadowlands Hospital Medical Center in Secaucus and, in a separate action, his nomination to a state commission on brain research has been delayed.

Philip DeFina was part of an ambitious plan by Meadowlands to offer hyperbaric oxygen therapy to children diagnosed with autism. The therapy, typically used to treat burns and other wounds by energizing dying tissue, required approval from the state Department of Health and Senior Services. Meadowlands would have been the first hospital in the state to offer the experimental treatment.

But the application ran into strong opposition, and questions were raised in a Nov. 27 Star-Ledger article in which traditional medical and psychological experts said the treatment offers families false hope while draining bank accounts because the experimental therapy is not covered by insurance. Some families say it has helped their children, and argued that if a method is safe and seems to be effective, it should be given a chance even if it hasn’t been thoroughly vetted through research.

The article also described DeFina’s doctorate in clinical psychology from Fielding Graduate University. The school, a mainly online university with monthly in-person sessions, is the only one to receive national accreditation from the American Psychological Association. DeFina’s experimental treatments with neurologist Jonathan Fellus for coma and brain injury have fetched as much as $100,000 from the families of patients who have not improved using traditional means. Fellus remains at Meadowlands.

There rest of the article is here.

W.Va. board withdraws autism rule after lawsuit

By Lawrence Messina
Associated Press
Published September 27, 2011

The West Virginia board that regulates psychologists voted Tuesday to withdraw an emergency rule that claimed jurisdiction over specialists who treat children with autism, after the new policy spurred a lawsuit and an outcry among parents of these children and their supporters.

The rule issued in July by the state Board of Examiners of Psychologists has been misinterpreted and misunderstood, board Executive Director Jeffrey Harlow said in a statement emailed to the media late Tuesday.

"The parents are calling the board and expressing fear and anger," the statement said, adding that "The last thing the Board would want to do is obstruct the provision of vitally needed services to these vulnerable children."

The rule had barred applied behavioral analysis, a therapy considered crucial for many children diagnosed with an autism spectrum disorder, unless a licensed psychologist supervised the ABA analyst. When it applied for the rule, the board called the providing of this therapy outside its jurisdiction "an immediate threat to public safety."

"There is a relatively small, but most likely soon to increase, group of individuals engaging in the practice of psychology who are not licensed and who do not meet the minimum education and training requirements for licensure," the board wrote when it sought the rule. "They are not prepared to practice independently, lack oversight and constitute a serious and immediate concern to public safety."

A certified ABA analyst, Jill Scarbro-McLaury, sued the board last week, asking a judge to scuttle the rule. Her Kanawha Circuit lawsuit alleged that ABA therapy is separate and distinct from psychology, and has been practiced in West Virginia for years without the board's interference.

"We are encouraged that the board recognized that the rule should be pulled since it was in violation of the law, and we hope no more road blocks are placed in front of our families who just want to help their children," Scarbro-McLaury said in an email.

The board pursued the rule over a new law that will eventually require both public and private insurers to cover ABA therapy. Parents of children with these neurological ailments and their supporters had lobbied the Legislature for several years for the measure. Acting Gov. Earl Ray Tomblin signed the regular session bill into law in April.

The entire story can be read here.