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As the mother of a highly autistic son, now 27, I have wished for a lot of miracles over the years: that Jonah was actually not as cognitively impaired as he appeared; Of the countless treatments we’ve tried, one will be transformative; That he or she will one day go to college, have a meaningful career, and do everything parents want their children to do. So I understand the allure of facilitated communication and similar methods that promise to satisfy those desires with a simple letter board or keyboard.<\/p>\n
Facilitated Communication, or FC, is an intervention in which highly autistic individuals write messages with the physical assistance of a non-disabled facilitator, who typically provides direct touch to the speller’s hand, wrist, elbow, or shoulder. There are several types of FC, such as the spelling and rapid prompting method for communication, in which the facilitator usually holds a letter board and gives prompts. Grouped together, these methods are often called “spells”.<\/p>\n
Proponents claim that such a facility uncovers hidden literacy in people who were previously considered severely cognitively impaired. In 2021, Robert F. Kennedy Jr. Interview<\/a> Father of a speller who wrote a book with his son. Discussing his findings from the book, Mr. Kennedy says that the son “learned to do calculus basically in a day.” According to “The Telepathy Tapes”, a popular podcast that first aired in 2024, there are spellers who can read their narrator’s mind.<\/p>\n However, the thing about FC is this: the science doesn’t support it.<\/p>\n There are augmentative and alternative communication methods that work for many non-verbal or minimally verbal individuals: simple forms of sign language, various digital applications, and picture exchange communication systems \u2013 which primarily use small cards with images or icons to convey requests. But the communication produced by FC and its counterparts is not autonomous; It is influenced by the facilitators.<\/p>\n<\/div>\n<\/div>\n FC came to the United States from Australia in 1989 and many parents and teachers adopted it as an almost miraculous tool that allowed them to access it. intact mind<\/a> Of their children and students. Rigorous testing was prompted by some cases in which spellers were incorrect. blamed your parents<\/a> Or abused caregivers. In some of these cases, innocent people were jailed and vulnerable children were placed in foster care. In a major case<\/a>In 1991, school officials reported that a 14-year-old girl had stated through FC that her father had repeatedly sexually assaulted her. It was this crisis, and judges’ demands that testimony given via FC be validated, that inspired researchers to conduct scientific tests of authorship \u2013 asking in effect, who was controlling the communication, the disabled speller or the non-disabled facilitator?<\/p>\n Over time, many such studies have shown essentially the same thing: spellers could not communicate unknown information to their facilitators. one 1995 Study<\/a> The Journal of Applied Behavior Analysis found among seven adults that spellers “typed the correct answer only when the facilitator had access to the same information, never typed the correct answer when the facilitator had no information or had incorrect information, and typed the picture or activity presented to the facilitator when it was different from the picture experienced by the client.” In other words, when spellers and their facilitators were shown the same picture\u2014for example, a telephone\u2014the spellers successfully spelled “telephone.” But when the speller was shown a telephone and the facilitator was shown a different picture\u2014for example, a hat\u2014the subject spelled “hat,” which is what the facilitator saw.<\/p>\n a 2014 finish Analysis<\/a> concluded that messages produced using FC “reveal massive facilitator influence on the content of the messages produced.” Review of this extensive literature Published in 2014<\/a> found “clear evidence for facilitator control: messages generated through FC are written by facilitators rather than individuals with disabilities.”<\/p>\n Virtually every relevant professional organization \u2013 including American Speech-Language-Hearing Association<\/a>The American Psychological Association<\/a>The American Academy of Child and Adolescent Psychiatry<\/a> and this American Association on Intellectual and Developmental Disabilities<\/a> – have issued position statements in opposition to the FC, some have even specifically issued statement<\/a> Recommending against the use of variants such as the rapid prompting method.<\/p>\n Evidence of facilitator control does not represent malicious intent. Rather, researchers believe that facilitators unconsciously guide communication in spelling through a number of cues, psychological biases, and ideomotor influences (small, unconscious movements we all exhibit that explain seemingly paranormal activity, like motions on Ouija boards).<\/p>\n<\/div>\n<\/div>\n Despite these consistent findings, support for spelling persists. in january 1st report<\/a>One spelling advocate estimated the number of trained spelling practitioners at about 1,000, up from only a handful a decade earlier.<\/p>\n Spelling supporters are pushing for government support: in the New York State Legislature, Discussion<\/a> The issue around the adoption of a communication bill of rights for people with severe intellectual disability has effectively come down to whether it will only apply to methods that are “valid”.<\/p>\n Sylvia Fogel was recently appointed head of the Interagency Autism Coordinating Committee, which advises the federal government on its five-year, $2 billion budget for autism services and research. In a March interview, he Said<\/a> Among other things, his committee will focus on “investigating or recommending further research regarding innovative communication methods such as typing and spelling for people with minimal verbal or non-verbal autism.”<\/p>\n All of this matters because the resources poured into pseudoscientific methods like facilitated communication clearly cannot be directed toward the most difficult problems facing autistic people, including self-injury, seizures, wandering, and yes, communication challenges.<\/p>\n upwards of 25 percent<\/a> Autistic children are nonverbal or minimally verbal, and while many successfully learn to use augmentative and alternative communication systems, not all do. Developing tools to enable all autistic people to communicate their needs and preferences authentically and freely is clearly a top research priority for the intensive autism community.<\/p>\n<\/div>\n<\/div>\n But it’s not all about money or opportunity cost. The most serious harm caused by FC is that it leaves severely cognitively impaired individuals with limited control over their lives.<\/p>\n In general, the pro-spelling approach seems to be that what is spelled prevails over what the speller communicates independently through speech (because yes, many spellers can say basic words or phrases) or behavior. You can find videos online that show agitated spellers pushing letters off the board while their spellers appear to ignore their protests.<\/p>\n I can’t imagine how frustrating it would be for severely autistic people to be deprived of the ability to communicate their true needs and preferences. I think about my son, who constantly asks to see “Sesame Street” and visit the water park, and how sad he would be if I told him to watch “60 Minutes” and instead took him to museums, based on a convenient response.<\/p>\n Many people are struggling. It is up to all stakeholders \u2013 including autistic people, their families, researchers, clinicians, policy makers, and the public holding governments accountable \u2013 to demand that resources be directed toward evidence-based interventions, not convenient communications that provide almost irresistible, but false hope.<\/p>\n<\/div>\n<\/div>\n Amy SF Lutz is Vice President of the National Council on Severe Autism. His books include “Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates that Affect Them Most.”<\/p>\n The Times is committed to publishing <\/em>variety of letters<\/em> to the Editor. We’d love to hear what you think about this or any of our articles. here are some <\/em>suggestions<\/em><\/a>. 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