Autism

Pseudoscience, Autism & Facilitated Communication

| by Val

Recently some attempts at celebrating Matt Hobson's success with utilizing typing in order to communicate, have resulted in name calling from professionals. This is because the initial impetus behind Matt's overall success was interest in facilitated communication (FC) - and so FC information was part of the article. While both sides of the FC mantra were presented, it wasn't good enough for one reader in particular. (Matt Hobson's Success)

Truth is, typing is being utilized by many autistic individuals in order to improve communication. Even Temple Grandin says it is a good thing for some in the autism spectrum. There are too many success stories to count with regard to utilization of typing for those in the autism spectrum. My own autistic daughter thrives with pen and paper, and actually does not prefer use of the keyboard - but she has really good motor skills. She does love to text though. So the typing isn't going to be for every person in the spectrum, but for those that it benefits - it has been a life altering experience.

An older report about facilitated communication gives a little insight into professional misgivings, and mighty strong reaction when facilitated communication is implicated as a partial impetus behind success...

More than 50 allegations of sexual abuse have risen out of facilitated communication, and this flurry has prompted urgent questions about a method that just five years ago was widely greeted as a shining breakthrough. The method has been adopted by scores of public and private schools in New York, California, Massachusetts and other states, with proponents claiming that people once believed to be retarded are analyzing literature and doing algebra. (link)

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This judge looked an inmate square in the eyes and did something that left the entire courtroom in tears:

 

So, facilitated communication, a method that probably initially only hoped to provide some form of communication to those who have very little options for successful communication - is in a type of professional ruin according to many circles; due to the fact that facilitators have fabricated results. Not only have fabrications been at play, profound damage from false accusations, has been done.

From Skeptic's Dictionary is a presentation of what facilitated communication should attempt to provide in a perfect world - and the quandary presented by a type of malpractice engaged upon in many reported cases of facilitated communication instruction.  One should read the entire page to gain complete understanding.

...Nevertheless, there are many testimonials supporting FC, namely, letters from clients who are grateful to FC for allowing them to show to the world that they are not retarded or stupid. Some of them may be from people who have been genuinely helped by FC. It seems that the FCI treats the retarded, autistic and those with cerebral palsy. I have had several students with cerebral palsy. As students, they have been no better and no worse than most of my other students. They have used assistants who helped translate their communication for me. Usually, the student had a card (with letters or words or pictures) on his or her lap. The student would point to letters or words and sometimes speak; the assistant would translate for me. Anyone familiar with Helen Keller, Stephen Hawking or Christy Brown knows that blindness, deafness, cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis (ALS), or physical or neurological disorders, do not necessarily affect the intellect. There is no necessary connection between a physical handicap and a mental handicap. We also know that such people often require an assistant to facilitate their communication. But what facilitators do to help the likes of a Hawking or a Brown is a far cry from what those in the facilitated communication business are doing.

 

Is offering a story about facilitated communication, and a simple report on some success experienced by utilizing typing, the practice of pseudoscience? Pseudoscience is a methodology, belief, or practice that is claimed to be scientific, or that is made to appear to be scientific, but which does not adhere to an appropriate scientific methodology, lacks supporting evidence or plausibility, or otherwise lacks scientific status. (link)

Based on the definition of pseudoscience, the very label of autism - from a scientific standpoint, is a kind of pseudoscience...and every single intervention embarked upon on behalf of those with autism, is a kind of pseudoscience - including ABA type therapy, since all the data is not in as far as prolonged benefit from such programming. In every way, autism represents ongoing and emerging understandings, that have yet to reach definitive conclusion.

For families that spark long awaited success, from an initial endeavor in any pseudoscience - the pseudoscience term that intends to inflict derision, lacks any type of sting whatsoever. Especially for me.

I have zero education. I am not a Phd. I am simply a mom who has had to watch her now seventeen year old daughter persevere through every type of emerging (pseudo) scientific attempt to help her - because of a profound condition that so little is known about, autism. In every case, the interventions lacked a true preponderance of supportive data (peer reviewed) and were mostly based on anecdotal evidence, scant support and theory. I become incredulous at the reality of being lectured about practicing pseudoscience simply because I report on Matt Hobson's success. Pseudoscience had been the best that any professional had to offer my daughter throughout her life. It was pseudoscience, or nothing. If I had tried nothing when she entered into worsening psychosis at ten years of age, she would no longer be living with us, and probably in an institution.

I read a comment from a mom (who was actually taking me to task on another issue) who can't even find a professional who will help in her endeavors to find a form of communication for her son who is nonverbal, but high functioning. She said it as only a mother can - it seems as if every person afflicted with autism is screwed. I guess she is right, because it should have been as easy as asking her if her son might want to become acquainted with a device such as the keyboard (since he is high functioning), but that would be practicing pseudoscience according to some...wouldn't it? Even with the multitude of differing types of assistive communication devices being provided to a vast array of those without the ability to talk, I guess the keyboard or anything that alludes to the hint of facilitated communication is off limits. Even if those who use the keyboard, learn to use it independently.