Friday, June 17, 2011

The danger of quack therapies and rushing to judgement.

A friend of mine shared an article with me today - it's a truly tragic story of a family that was nearly destroyed because of false allegations, shoddy investigation, a completely discredited autism "therapy" and a nearly criminal lack of understanding of the communication problems of a severely autistic child.

The story is about the Wendrow family of Michigan, and you can read the full 5 part Detroit Free Press piece here. It's the story of a family nearly destroyed because of allegations that the father raped and sexually abused his severely autistic daughter. These allegations were made based on the use of facilitated communication.

For those of you that don't know what facilitated communication (FC for short) is, it's the use of a keyboard and a facilitator (person) to help someone with severe autism who is non-verbal communicate. The facilitator supports the users wrist and helps guide their hand to the keys that they want to hit, so that the user can type and communicate.

FC is different from assistive communication devices. An assistive communication device is a keyboard or screen with whole words or pictures on it that the user can press buttons for to communicate what they want. It's what Kanzi the Bonobo Chimp uses to communicate. My own son used one when he was a toddler, along with a picture exchange communication system and sign language to communicate with me. An assistive communication device is operated entirely by the user, with no other assistance than to make sure the user is able to reach the device. With assistive communication devices, the user has to be able to recognize that a picture or word is representative of what they want to communicate. Communication requires the ability to attach meaning to symbols, gestures, expressions, words or images, and to use those to transmit information.

The problem with FC, is that every time the technology has been subjected to testing it has failed miserably. When an FC user (someone with severe autism, or in whats' classified as a persistent vegetative state)is asked a question with the facilitator in the room, the user is able to give a correct answer. When the facilitator is required to leave the room, not hear the question that's asked, and then come in and support the users hand to answer the question, the answer is incorrect. In other words, whether it's conscious or not on the part of the facilitator, they are guiding the users hand and answering FOR them. FC was considered for a time to be a major breakthrough for people with communication disorders, but it was proven in multiple studies over the past 15 years to be nothing more than junk science. In the case of this particular family, the daughter who was alleged to have made accusations of sexual abuse against her father and brother was not even able to answer yes/no questions by pointing to the words on large cards laid out in front of her. In later testing, her communication skills, both receptive and expressive, were found to be at the level of a 1 year old infant.

The American Academy of Pediatrics, American Psychiatric Association, American Association on Mental Retardation, and American Association of Child and Adolescent Psychiatry have all issued policies stating that the technology is not valid, and that it should never be used to confirm or deny allegations of abuse, nor should FC be used as a diagnostic tool under ANY circumstances.

There were several cases in the 1990's where allegations of physical and sexual abuse were made, based on information obtained through the use of FC, and with NO other evidence of any kind to support the allegations. Families were split up, children were put into foster care, parents put in jail until the FC was proven to be false.

In the case of the Wendrow family their 13 year old son, who has Aspergers syndrome was questioned for 2 hours, without his parents, court appointed guardian or an attorney present, was subjected to graphic descriptions of the abuse his father supposedly committed, was accused of being a participant in the sexual abuse of his sister, was lied to by the police (told they had DNA evidence of the abuse and video tape of him abusing his sister), and ended up being placed in a facility for juvenile delinquents for several months.

The thing you have to understand is that this was all based on statements that were supposedly made by the daughter through the use of facilitated communication, when she was assisted by the SAME FACILITATOR EACH TIME. There was NO physical evidence of sexual abuse, there were no video tapes, no DNA, the girls hymen was still intact!

Reading this article reminded me of the McMartin preschoolabuse allegations, and all of the other day care center abuse allegations in the 1980's. What bothers me so much about this particular case though, is the fact that the technology used to make the accusation had been debunked for well over a decade. Why is it that NOBODY in the prosecutors office bothered to check into that? Why is it that when they were told repeatedly by the sexual assault nurse examiner who examined the child that there was no evidence of abuse, they still continued to pursue the investigation? Why, even though they had an alleged victim with severe autism, did they let an investigator who had never handled a sexual abuse case before take the lead on the investigation.

Why now, after the case has been found to be completely without merit, and all charges have been dropped, has nobody from the prosecutors office ever once acknowledged ANY wrongdoing, or apologized to the family that is still healing from what was done to them.

It's appalling.

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