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.

Will World Autism Awareness Day Raise Autism Awareness or Create Autism Confusion?

April 2 is World Autism Awareness Day. Hopefully the UN declaration will have the effect of creating real awareness of Autism Disorder and the related Pervasive Developmental Disorders. The prospects of that happening are slim though. It is much more likely that more confusion about autism will be created by the large media organizations such as CNN that dominate world protrayal of autism.

The biggest obstacle to generating real autism awareness will be big business, the big business of maintaining ratings for a large news organization like CNN. To generate media attention CNN will provide feel good stories. CNN will, yet again, interview Amanda Baggs, a "voice of autism" largely created by past CNN promotion. Ms Baggs is a very intellligent and articulate person in her late 20's diagnosed with a pervasive developmental disorder as an adult. She was able to speak throughout her youth and adolescence, had friends and even attended Simon's Rock College for gifted young people. Ms Baggs was previously diagnosed with a variety of other disorders and, prior to meeting an autistic person, and subsequently obtaining her own autism diagnosis, she wrote elequently on topics like schizophrenia, TLE, elves and fairies.

Now, CNN hangs on her every typewritten word, as a true "voice of autism". Ms Baggs story bears no resemblance to that of my son who has very little oral communication ability or to the many autistic people I have met in 10 years of autism advocacy. I am not saying Ms Baggs is not autistic, she has a medical diagnosis, but her autism is the only one I have ever heard of where a person who can communicate orally thoughout her life becomes unable to communicate orally as an adult.

CNN will show other remarkable stories of autistic persons who, thought to be "retarded" ,have become able to communciate through typewriters, technology and Facilitated Communication. What they will probably not do is visit the autistic persons living in residential care facilities because they can not live on their own or visit those autistic people who can not, and, unlike Ms Baggs, never could communicate orally or by any other means. The middle aged lady in the New York residential care facility who could not tell the world that she was being abused by staff because she could not communicate at all, the children and adults who hurt themselves seriously.

CNN will probably not tell the world that the Facilitated Communication they help promote with their feel good stories has been discredited by serious responsibile agencies which have reviewed FC and found that the "communication" is often a reflection of the facilitator's thoughts not the autistic person. (When an autistic person uses technology without a facilitator it is properly described as Augmented Communication not Facilitated Communication). Nor will CNN be likely to mention the recent case in Michigan that saw false sex abuse charges dropped after a family had been ripped asunder and suffered as a result of communications, purportedly from their autistic daughter, which appeared to have been influenced by the "Facilitator."

Will CNN help bust autism myths and raise real autism awareness or will it simply continue to create new myths and create more confusion? We should have a better idea on April 3, 2008.

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Autism and The Dangers of Facilitated Communication

In Part two: Sex abuse case against Oakland couple was legal horror show Brian Dickerson of the Detroit Free Press reports on the dropping of sex abuse charges against a Michigan couple accused of sexually abusing their teenage autistic daughter. The case was based on allegations allegedly typed by the daughter with the assistance of an aide. Ultimately professionals who became involved with the case testified that there were signs that the girl was being subtly directed or influenced by the aide in typing her allegations. Charges were dropped. Before that point arrived however the mother had been placed on an electronic tether, the father had been jailed and the girl and her brother were sent to live in foster homes for over 100 days.

During the trial the girl was unable to type responsive answers to 17 question asked of her during the trial as shown in these questions and answers:

Q: What color is your sweater?

A: JIBHJIH

Q: What are you holding in your hand right now?

A: I AM 14

As the Free Press article reports Facilitated Communication had been rejected by researchers and in court proceedings:

Spurred by a flurry of cases in which autistic children using FC accused seemingly trustworthy adults of sexually molesting them, researchers began conducting double-blind experiments. In trial after trial, experimenters demonstrated that typed messages were actually being directed -- albeit unconsciously -- by the facilitators themselves.

Alan Zwiebel is a New York civil rights lawyer whose legal crusade against FC culminated in a celebrated 1997 case in which a federal jury awarded $750,000 to a New York couple who'd lost custody of their retarded daughter. Jurors concluded officials knew or should have known the girl's facilitated allegations of abuse were bogus.

Zwiebel professed astonishment when I told him that Oakland County prosecutors had relied on FC evidence to bring criminal charges against the West Bloomfield girl's parents.

"Facilitated communication? My God -- I though we stuck a stake through its heart in 1997," he said.

Since his 11-year-old federal case, Zwiebel said, "there's been a bright-line rule that facilitated communication is unreliable, period."

Mr. Zweibel's assessment of Facilitated Communication was consistent with the MADSEC Autism Task Force Report 1999-2000 which concluded that:

Accumulated peer-reviewed, empirically-based research studies have not supported the
effectiveness of facilitated communication. Equally important, the research has substantiated
the potential for great harm (Foxx, 1995; Margolin, 1994, Myers, 1994). Researchers may
consider further investigation using research protocols, with particular care to protect subjects and their families against harm. It is not recommended that professionals consider the use of facilitated communication.

In Oakland County Michigan a family has suffered from the ignorance of local officials about the unreliability and dangers of facilitated communication. The Detroit Free Press, in reporting this story, is doing a service to all persons with autism, their families and carers who might be harmed by this unreliable and dangerous autism intervention.

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