Lisa Jo Rudy Does A Bettelheim, Demeans ABA Parents While Pushing Her New Autism Book

Lisa Jo Rudy and I seldom, if ever, agreed on autism issues while she was the host of the About Autism web page. Lisa Jo has a high functioning autistic son and leans towards a Neurodiversity perspective on most autistm issues while my son is severely autistic and I have NEVER been accused of buying into Neurodiversity ideology. I did, at one time,  actually praise Lisa Jo Rudy though for her courteous approach to me and others with whom she disagreed on autism issues:

"About.com Autism by Lisa Jo Rudy is a corporate blog written by a parent who shares a neurodiversity perspective but tries honestly to present all sides of autism issues objectively and with impeccable courtesy."

Now that Lisa is no longer the host of the About.com Autism page though she appears to be taking a new approach to discussing autism issues. She has done a  Full Bettleheim in order to promote her new book "Get Out, Explore, and Have Fun: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities."

In promoting her new autism book Lisa Jo demeans parents who employ evidence based ABA therapy to help their autistic children by actually stating that their resort to ABA therapy for their children is more about dumping their kids with the therapists and freeing themselves up to go shopping than in helping their autistic children. In a Wicked Local Cape Cod article linked by Autism Speaks "In the News" section the following segment appears:

“Rudy said although the most common form of autism therapy is Applied Behavior Analysis (ABA) she opted for another method.“The ABA recommendation is for 40 hours a week and it’s more about handing your child over to a therapist while you go to the grocery store,” she said. 

Rudy discovered the Greenspan Floortime Approach, developed by the late Stanley Greenspan, which focuses on parent and child interaction.”

Bettleheim's refrigerator mom's theory essentially blamed lack of parent child interaction for causing children to become autistic.  The theory was in fact a fantasy with no evidence in support but it was widely accepted by the psychiatric/psychological professionals for many years and caused great harm to both autistic children and their parents.  Although Bettleheim's fantasies have long been discredited it appears Lisa Jo is still reading his books when she suggests that parents seek ABA therapy not because it is the most evidence based effective intervention for autism but because, according to Lisa, it frees the parents up to go shopping.  Lisa of course prefers the 

Greenspan Floortime Approach because, according to her, it focuses on parent child interaction.

How Lisa Jo knows anything about ABA as someone who didn't "opt for" ABA for her child has always puzzled me.  What is most interesting though, apart from her new willingness to demean ABA oriented autism parents while promoting her book is her failure to mention the different evidence bases for the effectiveness of the two approaches as autism interventions.

Many credible authorities have recommended ABA as the most evidence based effective intervention for autistic children including the office of the US Surgeon General and the Association for Science in Autism Treatment.  The American Pediatric Association issued the following statements about ABA and Floortime therapies in December 2007 noting the abundant evidence over several decades in support of ABA as an autism intervention and the scarcity of quality evidence in support of Floortime and similar relationship/developmental models:

ABA

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations.

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

Floortime

"Relationship-focused early intervention models include Greenspan and Wieder's developmental, individual-difference, relationship-based (DIR) model,⁵⁵ Gutstein and Sheely's relationship-development intervention (RDI),⁵⁶ and the responsive-teaching (RT) curriculum developed by Mahoney et al.^57,58 The DIR approach focuses on (1) “floor-time” play sessions and other strategies that are purported to enhance relationships and emotional and social interactions to facilitate emotional and cognitive growth and development and (2) therapies to remediate “biologically based processing capacities,” such as auditory processing and language, motor planning and sequencing, sensory modulation, and visual-spatial processing. Published evidence of the efficacy of the DIR model is limited to an unblinded review of case records (with significant methodologic flaws, including inadequate documentation of the intervention, comparison to a suboptimal control group, and lack of documentation of treatment integrity and how outcomes were assessed by informal procedures⁵⁵) and a descriptive follow-up study of a small subset (8%) of the original group of patients.^59"

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, Published online October, 29, 2007, Reaffirmed by the APA, September 2010.  

Lisa Jo Rudy has chosen to depart from a previously courteous, objective approach to discussing autism issues, unfortunately for autistic children whose parents abandon ABA efforts based on Ms Rudy's personal prejudices.  Most parents demeaned by such comments will not take them too seriously because the Bettelheim cold mother's fantasy has been widely exposed as nonsense (outside of France anyway).  The autistic children  of parents who look to Ms. Rudy for guidance though may not be as fortunate.

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Return of the Bad Parents Cause Autism Nightmare Monster

"DR. GABOR MATÉ: Well, the situation with fathers is, is that increasingly—there was a study recently that showed an increasing number of men are having postpartum depression, as well. And the main role of the father, of course, would be to support the mother. But when people are—emotionally, because the cause of postpartum depression in the mother it is not intrinsic to the mother—not intrinsic to the mother.

What we have to understand here is that human beings are not discrete, individual entities, contrary to the free enterprise myth that people are competitive, individualistic, private entities. What people actually are are social creatures, very much dependent on one another and very much programmed to cooperate with one another when the circumstances are right. When that’s not available, if the support is not available for women, that’s when they get depressed. When the fathers are stressed, they’re not supporting the women in that really important, crucial bonding role in the beginning. In fact, they get stressed and depressed themselves.

The child’s brain development depends on the presence of non-stressed, emotionally available parents. In this country, that’s less and less available. Hence, you’ve got burgeoning rates of autism in this country. It’s going up like 20- or 30-fold in the last 30 or 40 years.

AMY GOODMAN: Say what you mean by autism.

DR. GABOR MATÉ: Well, autism is a whole spectrum of disorders, but the essential quality of it is an emotional disconnect. These children are living in a mind of their own. They don’t respond appropriately to emotional cues. They withdraw. They act out in an aggressive and sometimes just unpredictable fashion. They don’t know how to—there’s no sense—there’s no clear sense of a emotional connection and just peace inside them.

And there’s many, many more kids in this country now, several-fold increase, 20-fold increase in the last 30 years."

Dr. Gabor Maté, interviewed by Amy Goodman, December 24, 2010

Once upon a time there was a monster born in the darker pits of human imagination, that haunted parents of autistic children in their nightmares,  and burst into the bold sunlight of world wide acceptance wreaking havoc on families, particularly mothers, of autistic children. The refrigerator mothers theory of autism, with no evidence in support, blamed mothers of autistic children for their children's autism disorders.  The monster was received with a warm embrace for many years by mainstream media,  academics and public health authorities alike and caused great harm to autism mothers, families and their children.

Remember too that this was in the days  when the vast majority who suffered from what was then called autism suffered from intellectual disabilities and serious deficits in daily functioning, the days before autism was transformed by the DSM-IV, Hollywood and the mainstream media into today's Autism Lite brand of shy quirky personalities. Try to imagine the guilt those mothers must have felt upon being told that their allegedly cold, uncaring personalities caused their children's serious, life limiting disorders.  Now the family wrecking monster of the refrigerator mothers theory has stuck its head out of the darkest sewers of academia and threatens once again to slander and malign those who are on the real front lines of the battle to defeat autism: parents of autistic children.

The Autism Pundit, Dr. Sabrina Freeman, in Refrigerator Moms Obsolete When Hell Freezes Over  has called out the new generation of Bettelheim autism monsters and pointed specifically at the Canadian physician,  Dr. Gabor Maté, who has a "theory" that parental stress is responsible for autism and a variety of other developmental disorders.  Dr. Mate even confesses, in a Times Union article, that he has no data to support his whack-a-do version of Bettelheim's Refrigerator mom's theory in which he substitutes stress for lack of emotional nurturing: "He can't prove it, but nothing else makes sense, Maté said."

Dr. Freeman pulls no punches in challenging Maté and other Bettelheim Heirs to back up their theories with data:

"Second, a theory is useless without any data supporting it. Put simply, show us the data, or put a sock in it! Since these big thinkers seem happy to posit theories that they have no plans to test and are, therefore, perennially without data to support them, let me have a go, and posit one of my own. Doctors and researchers with little talent and less integrity, tend to gravitate to fields where there is no known cause and no known cure – like autism. That way, B.S. can be purveyed with impunity, since few folks actually expect rigorous scientific standards of conduct (i.e., proper theory construction, hypothesis development, experimental design, testing, data collection, statistical analyses, presentation of results, and interpretation). In other words, where autism is concerned, it’s still the wild west of science. However, the good news is that as we learn more about the true neurobiology of autism, these ignorant pretenders will be relegated to the Flat Earth Society where they belong." (Bold, underlining added -HLD)

US and Canadian Autism Societies, Autism Speaks, the Association for Science in Autism Treatment  and public health authorities should join Dr. Freeman in calling out purveyors of this reincarnation of the Refrigerator Mothers Autism Nightmare and tell them to back up their theories with data or ... as Dr. Freeman said far too politely and with far more respect than they deserve ... put a  sock in it. 

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Blaming Parents: Autism Families Torn Apart by Ignorance

Families with autistic children, parents who love their autistic children dearly,  must endure much in order to live a normal life with their children, to be happy with their children to see them grow and develop to the best of their abilities notwithstanding their disabilities.  The concerns and challenges of parents of autistic children are often dismissed contemptuously by scientists, health care professionals, educators, social workers ... and some involved with the justice system. 

Last week the world learned that a caring British Columbia single father lost his autistic daughter to that province's children's authorities, at least temporarily, because she had left the home unattended and wandered to a nearby home where she stayed for a couple of hours. The father had taken precautions to prevent such incidents and had run to look for her when he realized she had left the home. He called police and she was found safe and sound but still the government took his child apparently because they doubted his ability to provide her with secure care.   

The Detroit Free Press has been reporting extensively (1, 2, 3, 4, 5, 6 ) on the havoc wreaked upon a Michigan family, the Wendrow family,  when the parents were charged with sexually abusing their severely autistic and mute daughter. The evidence was provided by a social worker who purportedly communicated with the daughter via facilitated communication a process which in this case involved the worker guiding the child's hand as part of the "communication" process. The case imploded when the child could not answer ANY questions, in any format, unassisted. It became obvious that the information purportedly communicated by the daughter was simply the beliefs of the social worker not the allegedly abused daughter. The parents did spend time in jail and the family, including the daughter, were separated. What I find most bizarre and disturbing  in this case though is how far the prosecution continued without any apparent legal foundation:

"Julian and Thal Wendrow were criminally charged in late 2007 after their 14-year-old autistic and mute daughter alleged, through facilitated communication, that her father had been sexually abusing her. They were separated from their children for 106 days, until prosecutors dropped the case because of lack of evidence.


...


The ordeal didn't end when it was clear that the girl wasn't communicating, after all. It didn't end when a sexual assault exam found no proof of abuse. And it didn't end when a prosecution witness insisted the abuse never happened."

TIME has reported on the six part investigative series by the Detroit Free Press and noted in its own commentary about facilitated communication generally, and the horrendous impact on a family of its use in this criminal prosecution of the father for allegedly raping his autistic daughter, that:

"the technique, in which the aide's hand is supposedly guided by the child to type what she wants to say, has been proved ineffective. It has been shown to rely on the aide's projections rather than to reflect the child's thoughts. Although some autistic children can learn to communicate genuinely via a keyboard with only initial guidance, facilitated communication, in which an aide always does the typing has repeatedly failed to demonstrate that the words are written or thought by the child. For example, when the facilitator is not allowed to hear the questions being asked of the child, the resulting answers are wrong or nonsensical.

When the Wendrow's daughter's aide typed allegations of sexual abuse against the girl's father and brother — and claimed that the child's mother had been ignoring her complaints — a prosecution of the family was set into motion that became nearly unstoppable. The aide refused to believe she was not typing her own ideas, even though the child was clearly not capable of the complex language being attributed to her. Once prosecutors and the aide became convinced of the truth of the allegations, even overwhelming evidence of their falsehood was ignored."

Parents of autistic children face many challenges trying to raise and care for their autistic children. Most of us  face some of those challenges .. the stares and looks from strangers who do not understand the screaming of the "obviously spoiled" child in the grocery store, the educators and doctors who ignore the input of parents.  Some face the grief a father is going through right now in British Columbia.  Few of us face the horror of a wrongful criminal prosecution as the Wendrow family has had to endure; or the after effects they will probably have to continue to face.  Behind it all though is a common thread, a thread that goes back to the "refrigerator mothers" theory of autism causation that was embraced so willingly by the psychology and psychiatry establishments, to that theory's politically correct replacement - the "it's gotta be genetic" theory of autism causation. It is easy to find fault, to blame parents, for the challenges faced by their autistic children who suffer from serious neurological disorders ... who suffer from autism spectrum disorders. 

As a father with a severely autistic son,  who happens to also be a lawyer,  I commend the defense team that represented the Wendrows throughout the criminal prosecution.  I commend the Detroit Free Press for bringing this story to the forefront when so many in the mainstream media refuse to comment on the harsher realities of autism disorders and their impacts on families.  Most of all I commend the Wendrow family for staying strong, for fighting the good fight.  I wish them well.

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