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- Preface -
teenager with severe autism and best-selling writers seem to be two nouns that are too far apart. However, Naoki Higashida, a 13-year-old boy with severe autism in Japan, "written" a best-selling book without language and difficulty in understanding every day. The book depicts the rich inner world of people with severe autism, which arouses a craze of discussion among parents of children with severe autism.
However, Naoki Higashida's "writing" may be done through a method called Facilitated Communication (assisted communication, FC). "Assisted communication" is a communication method that has long been considered unfounded by the scientific community, but it has been controversial and litigation. Many doctors, social workers and legal workers have their own positions. But the core question is, is the content expressed by autistic people using "Assisted Communication" their inner world, or is the thoughts attached to them by those enthusiastic or ulterior motives? Is “Assisted Communication” a science or a deceptive psychic?
This article sorts out the development history and major controversial events of "assisted communication", trying to let readers understand more comprehensive "assisted communication", a process that has been completely denied by the scientific community, and why some people still want to use "assisted communication".
Written by | Yaya Dad
Editor | Cui Zheng
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01 Everyone wants the answer
With a "bang", a box of toothpicks fell on the ground. 82, 82, 82... 246 in total. In the 1988 movie "Rain Man", a severely autistic patient with almost no communication ability counted a whole box of toothpicks within a few seconds. Everyone was amazed, how did he do it?
In the autism-themed movie "Ocean Paradise" starring Jet Li and Wen Zhang, Dafu, played by Wen Zhang, suddenly clapped happily when he looked at the sunny sky. Reiko next to him kept asking him, "Dafu, why do you applaud?" Dafu still looked at the sky, clapped without answering.
In the movie " Xihe " adapted from a live-action story, Xihe, who had autism, angrily overturned the table at school, and the thing fell all over the floor. Classmate Ding Ding came over to help him pick it up. Xihe instead bit Ding Ding, a deep tooth mark. Most viewers will be surprised at this time. Why did this child bit people?
Not only do the audience hope that Yuren, Dafu and Xihe can tell everyone a reason, in life, relatives, friends and researchers of autistic people are also constantly asking "why". Why do they always shaking their fingers? Why do you always repeat what others say? Why do you always have to line up toys?
If people with autism spectrum, especially those with severe autism who do not have language communication skills, can help the society understand their needs and provide better help and support.
Higashida Naoki answered many such questions.
As a severely autistic teenager, Naoki Higashida has no language, poor understanding ability, and various stereotyped behaviors. However, he also seems to have rich desire for thought and expression. Autism is like a cage, locking him up firmly and unable to communicate with the outside world.
In 2005, with the help of his mother and teacher, 13-year-old Naoki Higashida answered 58 questions related to autism and gathered them into a book to publish. In 2013, the father of autistic children, Irish writer David Mitchell, translated the book into English, titled "Why do I want to jump - the Voice of a 13-year-old autistic boy" ( The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism ) .
The English version of this book quickly became a bestseller and was translated into more than 30 languages.In 2016, with the support of One Foundation, the book was translated into Chinese and named " I Want to Fly into the Sky ". The self-description of the severely autistic teenager in the book really made everyone understand the inner world of people with severe autism and began to understand why they have so many seemingly weird behaviors.
"I Want to Fly into the Sky" touched millions of people and made thousands of desperate parents see hope.
The famous American autistic person, Tianbao Grantine, also highly recommended this book. As a person with high function, her growth process has also been written as a best-selling autobiography and made into a movie, which has caused a huge response worldwide. She believes that Naoki Higashida's description is very similar to her own feelings, so she believes that this book is indeed his expression of his heart.
However, some people have raised questions: Can people with severe autism who cannot complete basic communication really write books? This issue is discussed among autism researchers and other parents of children with autism. Some people believe that Naoki Higashida's so-called writing is nothing more than a kind of Facilitated Communication (hereinafter referred to as FC, auxiliary communication) . The so-called voice is nothing more than the will of the auxiliary (facilitator) .
From the book, the 13-year-old Naoki Toda's mature language use, clear logical thinking, and mastery, understanding and thinking of a lot of knowledge, even far exceeding the level of normal peers. The description of the supernatural sensation of death at the end of the book is even more amazing. In his book, this boy with severe autism behaves like an extraordinary teenager.
There are also more and more doubts appearing on social media, and many people think that "I Want to Fly into the Sky" should be related to "Assisted Communication". In fact, as early as 2014, two autism experts, Deborah Fein and Yoko Kamio, compared the Japanese and English versions and confirmed that the translation was accurate, and they also strongly questioned that the real author of the book was not Naoki Higashida, but a work that "assisted communication". Although Naoki Higashida and his family believed in documentaries and other interviews that he was using "facilitated finger writing under auxiliary conditions" (facilitated finger writing) , the data shows that Naoki Higashida's writing speed is very slow, and it takes two days to write 800 words. When he was writing, his mother was always next to him, either holding his hands or stroking his back, which really looked like "assisted communication".
02 "Assisted Communication" that makes children with severe autism "become a talent"
At present, the mainstream scientific community believes that the effectiveness of "Assisted Communication" has no scientific basis. Authoritative organizations such as the American Children and Adolescent Spiritual Association, the American Pediatrics Association, and the American Language and Listening Association have expressed doubts about this method, believing that this method is more about expressing the helper (Facilitator) , rather than the user's wishes. The emergence of
"Assisted Communication" is a product of a special historical period.
In the 1970s, in Western countries, disabled children were still discriminated against and abused. They were often sent to so-called centralized rehabilitation hospitals, isolated from the world, unable to receive any education, and living conditions were very bad, and they were even treated inhumanely (see Refrigerator Mom Theory and Bill and Barry) . At that time, at St. Nicholas Hospital in Australia, there was a disabled child named Anne McDonald who suffered from severe cerebral palsy, could not walk independently, could not speak, and could not eat on his own, and was diagnosed with severe intellectual disability. Anne was sent to this hospital when she was 3 years old and had not received education or care for more than ten years, and she couldn't even have enough food. In 1977, 16-year-old Anne was skinny and weighed only 12 kilograms.
At this time, special education teacher Rosemary Crossley came to St. Nicholas Hospital.She claimed that 12 disabled children, including Anne, not only have no intellectual disabilities, some are extraordinary, but also have strong communication skills - but their communication methods are not in language or sign language, but use a new auxiliary communication method, namely FC (Facilitated Communication) . This method was created by Teacher Crossley's comprehensive auxiliary communication methods that appeared in several countries since the 1960s. The specific operation form is that people with disabilities who do not have language communication, with the help of the assistant, either hold hands or hold shoulders by the assistant, and use writing tools such as "letter grid" to tap what they want to say.
Anne, with the help of teacher Crossley, expressed his strong desire to leave St. Nicholas Hospital. Although the hospital and parents did not think that Anne had this ability to express himself, Teacher Crossley won the lawsuit. Anne left the hospital and lived with Crossley, and finally completed her college studies with the helper.
Children with severe disabilities show extraordinary intelligence and strong communication skills. This story itself is inspiring enough. Coupled with the hospital's abuse of disabled children and the love miracle of Crossley's teacher, the fresh communication method "assisted communication" has become famous. Teacher Crossley has also become the pioneer of "assisted communication".
In 1989, educator Doug Biklen studied "Assisted Communication" at the Center in Crossley, and then introduced the technology to the United States, conducted a series of research, and established the "Assisted Communication" Institute at Syracuse University in New York in 1992 to train the "Assisted Communication" assistant (Facilitator) on a large scale. At the same time, Biklen updated his understanding of autism. He believes that autism is a "motor disorder", like a cage traps autistic people, making them unable to speak, point their hands, and fail to complete the movements and behaviors they want to complete. But through "assisted communication" typing, with the help of assistants, most of them have good IQ and are able to express profound ideas.
In the early 1990s, autistic families in the United States had just been freed from the absurd accusations of the "refrigerator mom" theory, and now they have become the application behavior analysis of educational methods that have been scientifically proven to be effective. (ABA) has not yet become the mainstream (it was not until 1993 when Catherine Maurice's "Let Me Listen to Your Voice" was published, and the ABA method began to spread in the United States) . At that time, various interventions and treatment methods were blooming, and in a daze, Dr. Biklen appeared in the parents' vision with "assisted communication". The assistants told parents that children not only had no intellectual disabilities or disabilities, but were able to communicate, which was really exciting. Many parents cried bitterly because they "saw" their children for the first time saying, "I love you, mom."
A TED speech in Melbourne, Australia. The form of the speech is that a child with autism is assisted in typing, and then read it by others. In name, autism is a child with autism who gives a speech, but in fact, the mother uses "assisted communication" to manipulate the child to type. Source: https://youtu.be/Woy-XzC-UVs
"Assisted Communication" method has brought shock and expectations to autistic children, especially parents of children with severe autism. They began to believe in their children's potential and expect miracles to happen. With the help of their assistants, children break the shackles of autism, learn normally, and become top talents.
For a while, "assisted communication" was popular all over the United States, and its effectiveness has not yet been concluded, but some parents are in trouble because their children communicate through "assisted communication" and "opening" words.
1993 documentary, "Prisoners of Silence" (Quiet Prisoners) records the troubles several autistic families encountered after they started using FC. One of them is Gherardi family. At that time, 817-year-old Matthew Gherardi, North Carolina, was a severely autistic young man. The school has provided him with "assisted communication" services since 1991.Overnight, Matthew leaps from only knowing 15 words to "reading" Shakespeare's 's work, and the homework brought home from school changed from 1 plus 1 equal to 2 to a one-way quadratic equation. A few months later, the Gherardi family was suddenly surrounded by police and social workers. It turned out that Matthew accused his father of sexually assaulting himself through "assisted communication". Mr. Gherardi was forced to keep a distance from his son during the investigation and stayed at a friend's house for 6 months.
And the other, Maine Betsy Wheaton's story has attracted widespread attention and media reports. In 1992, 16-year-old severe autism girl Betsy started communicating with the help of Janyce Boynton, a speech therapist who was arranged by the school and an assistant to "assisted communication". However, the good times did not last long. Betsy began to attack Janyce, which made Janyce feel that something must have happened at Betsy's family. A few months later, Janyce called the police and said Betsy told her through "assisted communication" that everyone in the family, including mom, dad, brother and grandparents, had sexually assaulted Betsy. So the police immediately took Betsy away from home. Although no abnormalities were found during the physical examination, Betsy's parents were still prosecuted by the court.
In court, Howard Shane, a language barrier expert at Boston Children's Hospital who was invited by Betsy's parents to make the testimony, designed a simple double-blind experiment: show Betsy a picture, show Janyce another picture of the same or different picture, and then let Betsy speak out the content of the picture through "assisted communication". As expected, when the pictures that Betsy and Janyce looked the same, Betsy's answer was correct, and when the pictures that the two looked different, Betsy's answer was the pictures that Janyce saw. The court therefore decided that Betsy was not able to express his thoughts, and that all the thoughts were from Janyce, and that all the allegations of Betsy being sexually assaulted by his family were false.
The documentary mentioned that Doug Biklen, who introduced "assisted communication" to the United States, showed that up to 30% of people with severe autism accused them of sexual assault by their parents, siblings or other caregivers through "assisted communication". The only thing they have not accused is the assistant.
More and more scientists have also raised questions and accused FC on the basis of research, including Dr. Bernard Rimland (1928-2006) . Dr. Rimland has been working to uncover the pseudoscience in the field of autism. He was also the first scientist to stand up to challenge the "refrigerator mom" theory in the 1960s. The popular theory at that time said that autism was caused by mothers' indifference, and Dr. Rimland and others eventually broke this statement and proposed the biological basis of autism, which was a big leap in the scientific community's understanding of autism. Rimland once believed in its effectiveness for "assisted communication", but in an interview with the New York Times in 1993, he also raised doubts and mentioned that at least 25 families were "assisted communication" for sexually assaulting their children.
There is an entry on the Wikipedia website that lists various sexual assault cases accused by "assisted communication" assistants over the years. Of course, most of these sexual assault cases were cancelled after a double-blind experiment similar to Dr. Shane. Sexual assault on a child is one of the most serious crimes in the United States. Once charged with sexual assault on a minor, the parties may receive a heavy sentence and will bear the bad reputation of a sexual assaulter for the rest of their lives. From this we can imagine how sad and terrible it would be if it was wrongly accused, especially by a disabled child I loved deeply.
In 1993 and 1994, many researchers in the academic community designed similar double-blind experiments. All results show that what is expressed through "assisted communication" is not the real idea of people with severe autism, but the auxiliary deprived people of severe autism from communication opportunities and replaced the false communication they conducted.
However, Dr. Biklen and his followers of "Assisted Communication" do not agree with the results of these experiments. They believe that people with severe autism can communicate quietly and comfortably only when they are with their assistants.The conditions of the double-blind experiment put pressure on people with severe autism, hitting their confidence and preventing them from communicating “normal”. Moreover, double-blind experiments are generally just experiments on naming objects, which is not something that people with severe autism are good at. Dr. Biklen insists that severe autism has the ability to describe objects, but it may not be able to be named. Dr. Biklen and his followers of "Assisted Communication" further accused Dr. Shane and others who designed the double-blind experiment, believing that they oppressed and discriminated against people with disabilities and denied the special abilities of people with disabilities by their narrow-mindedness, old-fashionedness, badness and jealousy.
03 Conclusion of "Assisted Communication" and "Ineffective"
's experimental results on the authenticity of "Assisted Communication" have shattered the hopes that many parents and teachers, and even the entire autism community have just ignited. However, the most desperate one may be the "Assisted Communication" practitioners like Janyce Boynton and the documentary "Quiet Prisoner". With good intentions, they were trained to help these severe autistic people in despair, and at one point believed that their efforts had rescued these severe autistic people from the cage. They discovered the abilities of people with severe autism, even geniuses. However, in the face of powerful facts, they have to admit that all communication through "assisted communication" is actually subconscious content and has nothing to do with the wishes of people with severe autism.
In addition to the content of the communication itself, researchers also raised more questions about the typing communication used by people with severe autism: If people with severe autism can have such good communication skills, why can't they type by themselves? Why is a special, trained assistant needed? Why do most people with severe autism not look at the keyboard at all when typing?
Supporters and doubters also debated this. Dr. Biklen believes that the disorder of autism is first of all, and therefore requires auxiliary typing. However, Dr. Rimland pointed out that many people with severe autism who are exposed to "assisted communication" have good fine motor skills. "A person with autism who can pick up a small piece of potato chips from the ground cannot type by himself, which is obviously unbelievable."
supporters also believe that trained auxiliary is also the key to "assisted communication". They can make people with severe autism feel comfortable, slow down, and organize their own thinking; opponents believe that the parents and family that can make people with autism feel most comfortable? If they can type and communicate at an advanced level, the best assistant should be the parents, not the ones they just met.
Controversy about the controversy of people with autism not looking at the keyboard when using "assisted communication". Supporters believe that normal people also have the ability to not look at the keyboard, but questioners say that the blind keyboard of normal people is achieved by coordinating the mutual position of multiple fingers by referring to the keys. No one, including people with severe autism, can not look at the keyboard and type with one finger.
So, are the assistants of "assisted communication" lying? It's not exactly the case. Research by Dr. Shane and others believes that the communication method of FC is actually an idea of movement response (Ideomotor response) , and those typeboards are equivalent to psychic board (Ouija board) , or traditional Chinese "Bixian" game.
Domestic Knowledge Community "Zhihu" ID named Vosch believes that "people who believe in psychic boards think that this is a spiritual effect, which belongs to the category of supernatural phenomena or supernatural, but the scientific community generally believes that this is an unconscious activity that cannot be explained by those who control psychic boards. It is a psychological phenomenon called conceptual movement effect (Ideomotor effect) ." And the auxiliary people in "Assisted Communication" command the so-called communication of people with severe autism in this state of mind, but they do not know it.
Dr Shane and others further believe that in the cases of abuse reported by severe autistic people reported through "assisted communication", almost all sexual abuse, and the abuser is all parents, brothers and caregivers, but they are also close contacts, and no auxiliary has been accused of being abusive. This is most likely because the assistants have a preconceived feeling when they are trained, and it seems that people with severe autism will be abused and mainly sexually assaulted.
In the face of facts, Janyce Boynton, the assistant who previously accused autistic girl Betsy of being sexually assaulted, could not deny Dr. Shane's result. She gave up "assisted communication" herself, persuaded the school to give up this method, and contacted Dr. Shane for a long time to publicize the harm of "assisted communication" and oppose "assisted communication".
According to the American Atlantic Monthly ( The Atlantic tml5 The Atlantic tml8) , by 1994, the American Psychological Society (APA) first announced that there is no scientific evidence for "assisted communication" - and "assisted communication" has "human rights violations" to the assisted persons. Many other professional associations, including the American Society of Languages and Audiology (ASLHA) , the American Academy of Pediatrics (AAP) , the American AAC Association, the American Society of Children and Adolescent Psychiatry (AACAP) , and even the Federal Trade Agency declared "assisted communication" invalid. "Assisted Communication" strips people of severe autism from the opportunity to develop their ability to communicate independently, and at the same time, falsely exaggerates their abilities and allows them to receive education that is not suitable for their abilities. For them, it is more of a harm than a help.
Therefore, "assisted communication" is not a scientific and effective communication method, and it was basically concluded in 1994.
04 "Assisted Communication" The tenacious survival ability
After "Assisted Communication", the efforts to find severe autism to communicate with the world did not stop.
For example, the widely used image exchange system (PECS) can encourage individuals with insufficient language communication skills, especially children with autism, to communicate through intuitive pictures, thereby helping them develop language and communication skills. Based on the development of touch screen technology, physical pictures have been transferred to computers, tablets or smartphones. PECS stores more pictures, is easier to operate, and is widely used.
At the beginning, children also need assistance to use PECS, but then the assistance will be slowly removed to achieve independent communication. As the ability develops, many people with autism can also type directly on their tablets and communicate in a more intuitive way than simple speaking. Of course, the application of this touch screen technology must also be matched with their communication skills. Supporters of
"Assisted Communication", including Dr. Biklen, were also the original intention of improving the independent communication skills of people with autism. Although they have been criticized, they have not completely given up their efforts. The FC Institute, founded by Dr. Biklen at Syracuse University, still exists, but it has been renamed as the Communication and Integration Institute (ICI) . On their website, there is also information about "assisted communication". In 2006, Dr. Biklen was promoted to the dean of the School of Education at Syracuse University until his retirement in 2014.
The scientific community's discussion on "assisted communication" has not stopped. APA and other associations will invite scholars to publish FC review articles every few years to evaluate its scientific nature. Google Scholar found that in 1995, 2001, 2010, 2014 and 2018, scholars made review articles on "assisted communication". Of course, these review articles have proved without exception that "assisted communication" has no scientific evidence, it is not an effective intervention method for children with autism, nor an effective communication method.
But "assisted communication" has not completely disappeared, and many of the supporters are parents of people with autism. They want to communicate with their children so much, and the beautiful fantasy of "assisted communication" is so real to them.
In addition to Syracuse University, the University of Northern Iowa has organized two days of "assisted exchange" training courses every year since 2014, until it was cancelled amid opposition in 2018. In December 2019, there were still parents in Pennsylvania, USA, who took the school to court because their children did not receive "assisted communication" services.
In 2015, "Assisted Communication" caused a sensation in the entire autistic community because of a sexual assault case. Unlike the previous "assisted communication" assistants who accused people of severe autism of sexual assault by their families, this time, the assisted disabled person's family sued the assistant - 41-year-old Anna Stubblefield, a philosophical professor at Rutgers University Newark, is also an assistant to "assisted communication". Her auxiliary target is D.J., a 30-year-old person with severe cerebral palsy. But one day, Anna suddenly announced that she was in love with D.J. and had had sex many times. She wants to abandon her husband and two children and marry D.J. After the incident was exposed, Anna was sentenced to 15 years in prison and was given a lighter retribution in 2018.
In 2018, Steven Salzberg, professor of computing biology at Johns Hopkins University, posted a post on (Forbes ) , bluntly criticizing "assisted communication" for violating human rights, which is a dangerous pseudoscience. At the same time, he believes that the reason why "assisted communication" still existed after it was abandoned by the academic community in 1994 is a beautiful hope for people with severe autism.
, while David Auerbach, a software engineer and popular science author in New York, was even more acute. He published an article in "Slate " in 2015, directly pointing out that "Facilitated Communication Is a Cult That Won’t Die" ("Assisted Communication" is a fanatical religion that will not disappear) .
Professor Jason C. Travers of the University of Kansas is worried that "assisted communication" may be replaced and repackaged. For example, some institutions rename “assisted communication” to “supported typing” (supported typing) or the rapid boot method (Rapid Prompting Method) .
In view of this, a neuroscientist from Yale University School of Medicine criticized the famous Science-based Medicine website, Steven Novella, pointed out that it has been a quarter of a century since "assisted communication" was denied by the academic community in the early 1990s. A new generation of parents of autistic children have forgotten or not known the debate that year, so he has to write an article every year to prevent that parent and teacher from being misled by the magic of "assisted communication" publicity.
05 Afterwards, remember
Back to the original question, who wrote "I Want to Fly into the Sky"? There is no more evidence at the moment that Naoki Higashida is using "assisted communication", although many signs look very similar.
This article by the author is not to question the content of the book. In any case, a lot of the information in the book will be of great help to parents, educators and the general public to understand people with autism. The book describes many behaviors, they shake their hands, yell, repeat the same topic over and over again, they pick on food, parrot, keep spinning around, and are reluctant to fall asleep at night... and try to tell everyone that they are not intentional, but they just can't control themselves. Accusations, discrimination, and even punishment do not help improve their behavior. What they need is more respect, understanding, support, patience and tolerance for them.
Therefore, the author does not completely deny the content of this book, nor does he hope that everyone will lose their confidence, expectations and good expectations for their children. As this book advocates, everyone has their own future, "Never give up on them."
The author hopes that every child suffering from autism can receive scientific intervention and parents will not be deceived by all kinds of fancy "magic therapy". We must believe that every child can grow at his own pace, but not every child will become Naoki Higashida, with intelligence and communication skills beyond ordinary people.For parents of autistic people, we don’t need to be upset because we haven’t trained our children to become geniuses. As long as we work hard to help our children reach the heights they can reach and try our best to be self-care and independent, it is the best education.
As for who this book is, it may not matter.
This article was jointly published by "Intellectuals" and the WeChat public account "Xiaoyaya Autism" (ID: Xiaoyaya-autism).
Author profile
Yaya dad (Li Wensheng), Beijing Normal University undergraduate and graduated, doctor of chemistry from Michigan State University in the United States, a parent of autistic children. In 2015, it launched the "Little Yaya Autism Project" based in Missouri, the non-profit organization, focusing on popular science of autism, introducing the latest views and scientific research trends in the field of autism, aiming to improve and correct the understanding of autism, advocate scientific intervention methods, and help autistic children reach the heights they can achieve.
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