“I would advise teachers to treat their students humanely regardless of their beliefs about disabilities,” Diego Pena, Age 9
By Debra Muzikar
A couple months ago I became aware a Ventura County third grader, Diego Pena, nine years old, non-speaking with an autism diagnosis, who had written a book on the Amazon best seller list, Anatomy of Autism: A Pocket Guide for Educators, Parents and Students. In order to learn about Diego’s book and how it came to be, AoA interviewed Diego for an Art of Autism exclusive
Diego is fully included in a general education classroom with his communication partner, Amanda. Diego also participates in the Gifted and Talented Education (GATE) program in his district. He was awarded a $150 grant by the GATE program to develop a poster and class video with his peers to educate others about autism. Diego’s teacher, Mrs. Amy Wood, encouraged Diego to turn the project into a book, which we now know as one of Amazon’s bestselling books, Anatomy of Autism. Diego loves creative writing, telling sarcastic and witty jokes, and playing outdoors.
Here are my questions and Diego’s responses.
Q: How old are you?
A: I am the magical age of a young genius, which is 9.
Q: How old were you when you started writing the book Anatomy of Autism?
A: I was only 9. It was a piece of cake. And yes, that was sarcasm. It was a labor of love.
Q: Why did you write the book?
A: My teacher told me to write about my Gifted and Talented Education (GATE) project, “Anatomy of Autism.” After I was done she said to publish it which was the best advice.
Q: Can you tell me something about your education experience.
A: I attend public school and it’s mostly been awesome. The one negative experience I did have could have ruined my life because of lacking education. I would advise teachers to treat their students humanely regardless of their beliefs about disabilities.
Q: What is the biggest myth about autism you’d like people to know?
A: The biggest myth is that we aren’t smart, but we are.
Q: What do you want people to know about non-speaking autistic people?
A: Speak to us like everyone else. We understand you. We need time to respond. Our bodies aren’t always cooperative.
Q: Any advice for parents and educators?
A: Never give up.
Q: Are you going to be having any book signing events in the near future?
A: I need to hire an assistant first.
Some excerpts from Diego’s book which we will add to our autism favorite quotes page:
“Trust me, I want to talk to you. My inability to speak is confused for my intelligence. I do have a voice, I speak with a Talker (my iPad), and I get to share my ability as a thinker like everyone else.”
“Working on communication in a meaningful way should be a priority when working with us. There is nothing worse than being left out of the conversation. Talk to us please; we love to be included. You have the power to make a difference in how people judge a person with autism.”
“When you encounter someone like me, don’t stop teaching because we are capable of learning. We are capable of being motor superstars at our own pace. Just know we try hard every day.”
***
This year Diego was award the Autism Society of Ventura’s Awesome in Autism Individual of the Year award. Diego’s book Anatomy of Autism: A Pocket Guide for Educators, Parents and Students can be purchased on Amazon.
You have an amazing and powerful voice, Diego! You will be heard!
Just exactly how did this non-speaking boy who is only 9 years old write this book? If it was his use of Rapid Prompting (RP), then, unfortunately, we have to be skeptical because RP is simply a form of Facilitated Communication (FC), which has been totally scientifically debunked. Just for the record, there is no credible scientific evidence that either FC or RP do what their proponents claim. Just because you want to believe that these autistic individuals are literate and can speak for themselves doesn’t make it true. The result is that they exploit the very people their promoters claim to be advocating for and, worse, they are putting words in their mouths. Sadly, without some real intervention to teach independent communication, the ultimate result for kids like Diego will be the same: complete dependence on others for even their most basic needs.
David – There’s this magical thing called a “keyboard,” you might have heard of it? Modern keyboards attach to this device called a computer, with which you can do all sorts of extraordinary things, even an autistic person. I am autistic, very literate, and can communicate just fine. Look, I’m doing it now! Autistic people who are non-verbal can be just as literate and can communicate in a variety of fashions, like typing or AAC. Just because someone doesn’t produce glottal noises, doesn’t make them intellectually inferior or incapable.
Also, it’s a 36 page book. It’s not exactly War & Peace, dude.
If you’re typing independently without anyone to help you then fine. If you, or anyone else, needs someone to hold your hand, touch you, sit with you, hold the keyboard in the air, etc, then it’s not fine. And, as I replied to someone else, I’ve worked with people diagnosed with autism for more than 40 years and when I started there was no autism spectrum in which everyone can now be diagnosed with autism. I worked with kids (mostly) with classic autism who had no functional language, speaking or writing. Then, in the early 90s FC comes along (then later RP) and all of a sudden, and miraculously, non-verbal kids can now produce sophisticated language without any of the teaching and experiences that typically developing people have. When these methods are scientifically tested, they failed as any rational, logical person expected them to. So, again, if someone communicates independently, great! If not, I’m not convinced and the FC and RP promoters (and anyone else who pushes this pseudoscience) are baldly exploiting these autistic individuals. Oh, and by the way, “non-verbal” means non-verbal.
There is a distinction between non-verbal and non-speaking. http://autisticadvocacy.tumblr.com/post/85040095544/about-nonverbal-and-nonspeaking
My son was in a program for 19 to 21 years old with Autism. She was non-verbal , but she communicated by texting him with her phone by herself/facebook by herself, and she had a pad she used by herself. There is more than one form of communication.
The results of “facilitated communication” may well rely hugely on rapport between the autistic person and the assistant, so the method could not necessarily be scientifically tested with random subjects. However, with a dishonest or incompetent assistant, the results could indeed be questionable.
There are other neurological conditions like Parkinson’s where the person may be unable to *initiate* an action such as taking a step (or striking a keyboard!), but can then complete it on their own if someone helps them get started. That does not mean they have no intentionality; they just have trouble initiating action without assistance.
Sounds like you may have spent 40 years underestimating some of your clients due to your own preconceptions.
Why must you be so negative? Based on your comments I’m not sure you’ve even read the book. Had you read it, you wouldn’t have embarrassed yourself with your response. You have no idea how much this mother has advocated for her son. She recognized his ability. Didn’t allow any “studies” to determine her sons quality of life. What he can and cannot do.
So yeah, we autistics are FAR more capable than you seem to WANT to believe. Technology has come a long way towards giving us a voice. If someone is using a talking pad like Diego is using, we’re usually typing, touching pictures that have sound bites attached to them, or drawing in some cases (ME)!
Wow put down a 9 year old autistic non verbal. This is an opening for this child. Why not praise him for his work? If you really care about autistic children you wouldn’t be saying this about this child. This is a book for other children to learn how to communicate with kids like himself. Way to go Diego!
I am so sorry for the kids with autism who had to work with you.
seriously? Take a breath David. This is an extremely intelligent and gifted 9 year old getting out his message. I love Jeni’s comments. War and Peace, lol. He has a large vocabulary and the tools to use it. He has feelings and thoughts and the tools to express them. What are you jealous that a disabled 9 year old beat you to your first publication? Children are here to teach us. Diego is here to help us understand how to be kind in the face of differences. I have a son who is mostly nonverbal. He is also extremely intelligent and has a huge vocabulary and is capable of any things that I can’t do. Let go of fear and learn to love.
Jeni Grant..you’re awesome for putting David in his place..thank you from a mom of a nonverbal boy with autism.
Well said, Jeni! XO
What about us articulate formerly called Aspies?
Are you a specialist?
I’ve been working directly and indirectly with people diagnosed with autism both in applied settings and as a university professor form than 40 years. You?
David Max,
All this experience and you still don’t understand the sensory-motor difficulties faced by non-speaking autistic people? I direct you to the work of Elizabeth Torres. Your rules for communication include that the autistic person cannot have someone sitting with them? As in, they must be in a separate room from others?
My son learned through the rapid prompting method (which you falsely say has been tested). Now, my son sits at a keyboard or iPad and types his own thoughts without prompting of any kind. Tragic that you have worked with people for 40 years, and haven’t figured out how to help people communicate, not how to demonstrate their intelligence.
Sir, if you’re still working in this field, please retire. You are incredibly disrespectful — not b/c of your beliefs, which are yours to have — but b/c you felt the need to hijack the comments section of a little Q & A with a 9-year-old who wrote a pamphlet about his experience with autism. Seriously. What’s the deal?
I made a film when I was 8 years-old. Did I have help from adults? Of course! I didn’t go rent the camera, learn how to use it, make up a shooting schedule, and be sure the cast was fed everyday. But I *did* write the “script” (a very deep plot about a lion accidentally scaring a little girl at the circus), ask all my friends to be in it, gather “costumes” from my dress-up box, set up my baby dolls to be the circus-goers, march everyone through their parts, operated the camera, and even learned how to edit super-8 film on an editing box. (Shockingly, a *grown-up* taught me how to use it.)
In my 54 years on this planet, I’ve met many children, both on and off the autism spectrum, who are perfectly able to take on such creative endeavors. Good grief.
Lastly, to *assume* that this child uses RP, or any other method of communication, without asking or researching it first, is both ignorant and arrogant on its face. To go farther and accuse he and his family and teachers of perpetrating a scam is just bad form. And, you are seriously mistaken if you think that all disabled people who don’t use speaking as their main form of communication are intellectually disabled. Just ask Stephen Hawking (may he RIP).
You should seriously reconsider your “expert” status — regarding both autism and the abilities of young people, disabled or not — a take that golden handshake ASAP.
I don’t believe you actually, Asperger’s as a diagnosis was only published in the mid-90s and was slow to travel around the world. Since then knowledge of Asperger’s (High level functioning autism)has slowly become understood. University professor- no wonder you are so entitled. You are among the worst we autistics have to put up with! LISTEN to the people who actually know stuff-the real autistics! If you identify as one(you probably are), you actually don’t know all kinds of things that have developed in the last 10 or so years.
Sounds like you are in the wrong field. Clearly in all that time you learned nothing about the individuals you worked with.
So…you’re literally one of the people who helped build the stigma you are displaying so eloquently.
You’re too young to be the specialist who encouraged my parents to consider a residential program…but you reek of the same lack of awareness of anything beyond your clinical prejudices.
I’m a specialist, and I agree with David. This has nothing whatsoever to do with his mother’s advocacy or anything else other than did this child generate the content of the book without the help, intentional or not, of anyone else, particularly his communication assistant. Noneof what I read rings true to a 9 year-old genius or a child on the spectrum or a savant or a combination of all three. I speak to this from almost forty years of parenting and professional experience with persons on the spectrum. In those four decades I have yet to see one example of facilitated communication that could be duplicated with a neutral facilitator, even one who established a relationship with the subject prior to testing. So if Diego didn’t independently type this then I don’t believe it.
Agreed
I’m glad someone else is skeptical here. I think this kid had substantial help with this book, not even because he’s autistic, but simply because he’s only nine. His vocabulary and syntax are extraordinarily advanced for his age. There are a lot of examples of kids being exploited for money, and I think skepticism in this case is healthy. It’s fine to be happy that this kid has support and is advocating for a cause near and dear to him, but taking this at face value requires a lot of gullibility.
An excerpt:
“I am strangled by my motor system and experience raw impulsivity.”
Nine-year-olds don’t talk like that.
This book is also advertised as a pocket guide. It provides insights into autism for sure, but it doesn’t guide anyone to do anything. It’s just a blog post being sold for $5 or $10.
*MOST nine-year-olds don’t talk like that.
Fixed. I realize this may be difficult for people to grasp, but sometimes individuals have a language comprehension far beyond what is expected for their age. By age nine, I had read Jane Eyre, Wuthering Heights, and The Count of Monte Cristo. It’s all right to express some doubt, but the basis for your argument should not be what is typical when you already know the child is atypical.
By diagnostic definition persons on the spectrum are speech and language deficit. Period. If not, then he’s aphasic, not autistic.
I like how there is always people that will dish out negativity. But before you do, I suggest you read the book. It was different that what I thought. And just because he has Autism, doesn’t mean he can’t be gifted in otherwise. He’s non-verbal, doesn’t mean he doesn’t have thoughts that can’t be expressed. . . Rude!
Not pleased with cluelessness. Delusion is always a choice.
My Aspergers kid talked like that at 9 and even before. In elementary school they were shocked that he knew the word consequences and understood its meaning – could use it correctly. Among hundreds of other words and phrases. By age 9 there were very few ancient cultures that he could not tell you about extensively. As to the excerpt you used, adults use those phrases with the kids sitting there. The kids then ask what that meant. And from then on, they know and can use the phrase you object to. I read children’s science books to my kids – quality accurate ones. Several times in elementary school teacher/parent conferences, teachers expressed surprise at their knowledge. One teacher went on and on about how much my kids knew about genes, chromosomes, and dna. There were specialists that worked with my kids who were like you – and some, thankfully, that were not. We were fortunate to have teachers who ignored the ideas about what limitations there were on what my children could do and accomplish.
You are ignorant. Do You have a child with autism? Are you in a classroom with them every single day? No? Then shut up and don’t troll on things that you completely don’t understand.
I love it. Technology is an AWESOME equalizing tool. Throw any of us autistics (who are capable of learning and information retention) in front of a computer and just watch us GO. We can self edit when we type, which is something that we cannot do when we are speaking. Even I have trouble with speaking vocally at times. It’s FRUSTRATING. But with a computer, I can type what I am thinking AS I think it whereas when I am dealing with speaking, it can come out as a massive freaking jumble that nobody can understand, not even me.
Not even writing with a pen or a pencil can compare to the computer. That’s because when writing by hand, we have similar issues as we do when speaking. That’s assuming our motor functions are working well enough to even hold the dang pen/pencil! Words get jumbled, sometimes two or more words are written down as just one. It’s maddening. I actually end up resorting to pictograms when doing fast notes because of it. I can look at the picture and understand what Iam saying, and I can then take my time to write it out. People love my slow writing notes, but don’t know (or realize?) that that process takes up a TON of time.
It doesn’t say non-verbal, it says non-speaking. I hope you would never work with Autistic children if you would limit them like you are saying here.
David Max – agreed.
There is a youtube video interview with him. His mother asks him questions and his answers are complex and complete sentences (via an AAC device such as proloquo2go) but they have been pre-constructed so he is only pushing one button to produce the entire complex sentence.
This could be OK but it also looks like there is some prompting going on–not just to get the child to stay and answer questions and attend to the screen but which buttons to push on the screen.
I am not saying that this is a hoax but evidence to the contrary would have to show him using the AAC device without any prompting at all. If he is only able to select relevant sentences that have been written by someone else: this is OK if he can communicate his needs effectively, but again, evidence of him composing would have to show footage of him constructing sentences himself, even if someone had to edit them later.
Please do not be offended by honest critique: it is an even more offensive to consider the possibility that one might persuade a child to plagiarize their words while pretending that he is speaking his own mind. Especially if this charade is replacing what could be an effective program to teach him to communicate his real preferences. Again I am not saying that this is the case, but the claim is suspicious and the evidence is not there.
Jylah,
Thank you for at questioning with respect. I see that you want to see the process Diego uses to craft his sentences–that he must be completely unprompted. I know you understand prompting—the prompt to initiate an action in an apraxic person is often needed. Prompting to begin, or to stay on task does not mean that the communicator doesn’t understand, but rather, they need help to control their bodies. I hope, if you’re actually curious, you will look at the work of Elizabeth Torres. She describes the sensory-motor challenges on non-speaking autistic individuals. My son learned to type, without prompting, holding his own iPad. He had 13 years of ABA. Is that enough of the “effective program” that didn’t teach him to communicate beyond humiliating scripts that were someone else’s idea of what my son wanted/needed to say? Thanks
This interview video is from Feb 10 2015 https://www.youtube.com/watch?v=8D-2U3GF-TQ
4 years ago? I suspect you are implying that Diego isn’t independent. Having a speech prepared does not actually take anything away. Imagine presenting information without a power point, or notes. Having a prompt to press the start button does not imply a lack of understanding, either.
People often learn (or are taught) in increments. Particularly in ABA, for example, prompts are given in earlier stages, and faded as the student gains the skill. So, to suggest that one must be able to perform without a person beside them, or a point prompt to press a button….it is placing standards that are not attainable at that particular stage of practice. Further, having movement difficulties should not be confused with lack of understanding.
Same David Max?
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LOL. “He’s only a child”. Have you read “the Spark”? the true story of the little boy who became a fully qualified astro-physicist, teaching adult students when technically, he wasnt old enough to be at University.
sick of the negativity in the comments here. Autistic people are not a monolith. Someone being nonverbal does not mean they cannot communicate, and I’ve definitely met autistic kids who have very adult-sounding syntax. Y’all are just projecting your own issues, assumptions, and stereotypes onto this kid because you can’t accept the idea of autistic people as competent human beings worthy of self-determination. You may call yourself an expert because you’ve been in a position of authority over autistic people in the past (which doesn’t make you an expert; the mental health industry is notoriously abuse towards autistic children and all other kinds of neurodivergent children. You wouldn’t believe the amount of nurses who work with neurodivergent kids I’ve spoken to who genuinely believe kids with adhd just need to be hit more). Just because someone doesn’t communicate in YOUR favored method, that doesn’t mean they can’t communicate. And if you’re claiming to be an “expert” in autism but are denying the established fact that autism is a spectrum, then you’re just a liar too. Because you can’t be an expert while claiming that. At the end of the day, the only TRUE experts on autism are actual autistic people, who have lived it. And it’s quite telling when you look at just how threatened people behave when faced with that. They get so angry at the mere suggestion that an autistic person should be able to speak or otherwise communicate for themself. If you’re nonverbal then it must be fake. If you’re verbal then you’re “not autistic enough” and don’t count. There’s no winning with these people, they just want their narrative to be the only narrative, because being in that position relative to autistic people makes them feel big
Thank you Corbin Hall, my sentiments exactly!
Here is a link to the “interview” with Diego. https://youtu.be/8D-2U3GF-TQ
4 years ago? I suspect you are implying that Diego isn’t independent. Having a speech prepared does not actually take anything away. Imagine presenting information without a power point, or notes. Having a prompt to press the start button does not imply a lack of understanding, either.
People often learn (or are taught) in increments. Particularly in ABA, for example, prompts are given in earlier stages, and faded as the student gains the skill. So, to suggest that one must be able to perform without a person beside them, or a point prompt to press a button….it is placing standards that are not attainable at that particular stage of practice. Further, having movement difficulties should not be confused with lack of understanding.
Let’s just pretend for a second that I’m not a monster and that I have a little bit of understanding about autism. Let’s pretend for a second that Diego didn’t write that book as a 9 year old. We’re just pretending here. Just a thought exercise.
If we pretend that he didn’t write the book, how does that affect things? Is it good for people to believe a 9 year old autistic child wrote such a book if he did not?
As an aside, my skepticism could be completely destroyed with a video that showed Diego doing his creative thing. Showing him pushing a button on an iPad so that a pre-written response plays is lovely but unconvincing. I’ve seen lots of video of nonverbal/nonspeaking autistic people having amazing things to say after they’ve pushed buttons on iPads. What I haven’t seen much of is the work that likely would have needed to go into the response on Diego’s part. That is evidence that could easily be gathered and would silence the skeptical.
Claiming a 9 year old nonverbal/nonspeaking autistic child authored a book that used very high level language (way above that of a typical 9 year old) is an extraordinary claim. I think that extraordinary claim deserves some extraordinary evidence.
I don’t say this to be cruel. I say it because it’s important. If Diego didn’t write this book but people around him claim that he did it’s a problem. I don’t think it is OK to exploit the narrative that nonverbal/nonspeaking autistic people are secretly geniuses that would amaze us with their talents if only we could truly understand them.
I think it’s OK for someone to be a nonverbal/nonspeaking autistic and NOT be a superhero. I think it’s awesome for them to be just who they are. If Diego truly had this much mastery of the language at age 9, that’s an amazing story worth telling. The evidence presented doesn’t really show that. I think the narrative requires it.
The reason you probably aren’t seeing such videos of kids trying–and failing and overcoming–is because most people aren’t comfortable sharing that raw side of learning with other people.
Failure isn’t comfortable for anyone. Many people experience failure as a source of great humiliation and embarrassment. For kids dealing with disability, it can be the stuff of nightmares and debilitation. My nephew refuses to use a communicator at all even though he needs it and knows how to use it. He’d rather have a family member do the talking for him. He tells them what he wants discussed, and they tell us an expanded version.
I actually understand him more than a little–but when he’s refusing to talk at all–sigh.
Trying to explain to a child that failure is okay and part of the learning process can be the stuff of epic frustration for a parent or an educator (I spent a great deal of time dealing with one of my own children on this very subject).
I am always super cautious about these kinds of things. I am the mother of a very similar boy on the spectrum- I have seen parents “facilitate” work like this and it’s more from the family then the child, especially nonverbal children. I’d be very curious to see how he wrote the book, which wasn’t mentioned in the article. I am also an occupational therapist, and I have yet to see a nonverbal child who was able to use a talker or type fluently or at such a high level independently. The article says he has a “communication partner” named Amanda. I am sad to say sometimes families and teams are so eager to believe a child is producing work like this that they don’t even realize how was fully facilitated/ came from others. We all want to believe our kids are capable of anything, and I think the interview proves this wasn’t the child’s work but a highly facilitated expression of what the parents/ family are projecting.
I love this. It’s true that we are quick to judge by verbal skills. For the majority of us the path from thought to communication is the same. We are the ones who are being ignorant of other paths. Imagine what else we may be blinding ourselves to?
Just some things to think about:
*Everyone hates looking stupid. You do, I do, normal kids do, autistic kids do, kids with learning challenges other than autism do…
*That child may have insisted on the wording created by pressing that pictogram. Setting up pictograms that facilitate communication for the nonverbal is a collaborative effort between the non-verbal person and the people around them that they trust.
*It is entirely possible that until the wording was exactly the way he wanted it, the child was agitated and distressed. (I have close friends and family dealing with autism: I have repeatedly witnessed this agitation and distress when communication wasn’t just exactly the way a child desired).
*He probably didn’t want to sound like a normal 9 year old child since that isn’t who he is. He wanted to use words and concepts that are advanced to make himself sound better, but also because he understood them and was/is hyper-focused on the need to express exact concepts. It is also quite likely that he used those concepts because he has heard adults around him discuss his issues using those concepts, and has asked for explanations and made a real effort to understand them.
*I have a child who, around age 11-12, tested at a graduate level in vocabulary and reading and comprehension. He also has learning challenges, but isn’t autistic. His vocabulary skills were highly advanced from a young age, but getting him to write anything at all was a serious challenge. Keyboarding really helped.
*I have another child, very gifted but also with some learning challenges, who wrote and illustrated her own book in 9th grade and I helped her publish it. Before that, she had written and had published several poems and rhymes in collections for various school projects. She also wrote a 21 page story for a teacher in 6th grade that her classmates really loved, but threw the teacher for a loop. He only wanted six pages of story. She has won awards for her writing.
*I have a friend on the autism spectrum who was nonverbal for much of her childhood, but isn’t now–and has become a gifted and highly prolific ghostwriter. It’s really amazing what was hiding in her head for all of those years when she couldn’t talk.
*Lots of people who have published books never wrote a word of them. Many famous people whose books you’ve probably read have had ghostwriters. They may have told the ghostwriter a general outline or a theme, or given them access to their personal letters and other documents, but–they didn’t write that book. It still has their name on it. Even some famous writers use ghostwriters–
*There are also whole series of books that are completely ghostwritten. The author is a complete fiction. A famous series this is true for: Nancy Drew. Carol A. Keene doesn’t exist as a real person. She is a legal fiction.
*This child is a real child, and did more of his work than Carol A. Keene or famous people with ghostwriters–even with a technological assist and the assistance of a companion.
*Is the issue here for you really whether or not he actually wrote the book or whether or not children should be published, or whether or not differently abled children should be published? Please consider where this bias is coming from and if it is reasonable or not.
Response mostly to David and Diaval5050,
I might as well write what I am thinking: you are an embarrassment to the field of working with people w/special capabilities. I, too have worked many (34) years in this field and
I NEVER SAY NEVER
I have had innumerable experiences with people dx as autistic, from preschool to middle age. Was this young boy successful in writing what he had to say? Apparently, yes. Is this book a true reflection of his thought processes? Apparently, yes. Could a 9 y.o. come up with the vocab example? Apparently yes. No one can be definitive about what/how any other person can feel, learn, express, produce or be interested in. Even though retired, I am still in touch w/several former students and families. I NEVER put limits on what I believe they can do. My former accomplished students range from working in sheltered workshops, to working independently, to a 41 y.o. artist who did not talk until 7 y.o. but is now an artist who earns thousands for one of his originals. Did I have any idea where these people were headed? No, I did not. And I’m CERTAIN they are not done achieving yet.
Facilitated communication (FC), supported typing, or hand over hand, is a scientifically discredited technique that attempts to aid communication by people with autism or other communication disabilities (Vyse, Stuart (7 August 2018). “Autism Wars: Science Strikes Back”. Skeptical Inquirer Online. Skeptical Inquirer. Retrieved 28 November 2018).
The facilitator holds the disabled person’s arm or hand during this process and attempts to help them move to type on a keyboard or other device (Auerbach, David (12 November 2015). “Facilitated Communication Is a Cult That Won’t Die”. Slate. Retrieved 30 November 2015).
There is widespread agreement within the scientific community and multiple disability advocacy organizations that FC is not a valid technique for communicating with those with autism spectrum disorder (Hemsley, Bronwyn; Bryant, Lucy; Schlosser, Ralf; Shane, Howard; Lang, Russell; Paul, Diane; Benajee, Meher; Ireland, Marie (2018). “Systematic review of facilitated communication 2014-2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with the disability”. Autism and Developmental Language Impairments. 3: 1–8. doi:10.1177/2396941518821570. Retrieved 22 May 2019.).
Research indicates that the facilitator is the source of the messages obtained through FC (involving ideomotor effect guidance of the arm of the patient by the facilitator)(Lilienfeld; et al. (26 February 2015). “Why debunked autism treatment fads persist”. Science Daily. Emory University. Retrieved 10 November 2015.).
Studies have consistently found that FC is unable to provide the correct response to even simple questions when the facilitator does not know the answers to the questions (e.g., showing the patient but not the facilitator an object) (Montee, B B; Miltenberger, R G; Wittrock, D; Watkins, N; Rheinberger, A; Stackhaus, J (1995). “An experimental analysis of facilitated communication”. Journal of Applied Behavior Analysis. 28 (2): 189–200. doi:10.1901/jaba.1995.28-189).
In addition, in numerous cases disabled persons have been assumed by facilitators to be typing a coherent message while the patient’s eyes were closed or while they were looking away from or showing no particular interest in the letter board (Goldacre, Ben (5 December 2009). “Making contact with a helping hand”. The Guardian. Retrieved 10 November 2015).
Facilitated communication has been called “the single most scientifically discredited intervention in all of developmental disabilities”(Wichert, Bill. “Professor found guilty of sexually assaulting disabled man”. NJ.com. Retrieved 4 October 2015.).
There is a scientific consensus that facilitated communication is invalid and a pseudoscience, and its use is strongly discouraged by most speech and language disability professional organizations (Hemsley, Bronwyn; Bryant, Lucy; Schlosser, Ralf; Shane, Howard; Lang, Russell; Paul, Diane; Benajee, Meher; Ireland, Marie (2018). “Systematic review of facilitated communication 2014-2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with the disability”. Autism and Developmental Language Impairments. 3: 1–8. doi:10.1177/2396941518821570. Retrieved 22 May 2019.).
Just because someone struggles with verbal communication has no bearing on their intellectual capacity. In other words, nonverbal doesn’t equal stupid. If you live with autism, then you know this. The rest of you “skeptics” need to stop insisting you know best. Because in my experience, you don’t.
If you haven’t seen RPM (and David Max, it’s RPM, not RP, which given your so-called expertise, you should know) in person, then you really shouldn’t be commenting on it at all. Critiquing a therapy you’ve never witnessed in person is like critiquing art you never saw. I know a 15 year old with autism, barely verbal, who has written 5 books. Five!! First one when he was 12. He spells everything one letter at a time. No one writes (or spells) anything for him. His mom records what he spells. He’s submitted poems to a Teen Poet contest and won, competing against non-disabled teens. He does calculus too. In his head. Always gets the correct answer. Those of you who insist on being skeptical need to ask yourself why you find it so hard to believe that an autistic individual could do these things. Because you are the people holding these kids back.
If you can’t embrace non-traditional methods of communication, then do the autism community a favor and keep quiet. No one needs your skepticism and doubt, least of all the nonverbal individuals trying to make their voices heard over your negative racket.
Trish,
Thank you so much for your scholarly references. Research can further knowledge using rational thought, keeping the emotional responses (which we all have) in perspective.
Seems we have crossed a line, where equal is not enough — quite like feminism or homosexuality. Were the war is won now they seek better than equal. And I am curious about autism in a victim driven culture. it seems autism has become fashionable. Everybody wants to be one, own one or know one. Everybody wants to be a victim.
There is a growing and unqualified arrogance within autistic communities. Not all autistics are geniuses and not all autistic are that intelligent. Most are dummies…I say that without predjudice, but I am sure some flake will get offended.
Remarkable how emotions arevirtued to such importance — important, when really they are only symtoims of a body in flux…about its environment or whitehre it is in danger.
Again the base state become a polarizing event.
Consensus and group ideology will always clash with the individualism.
Personally I think David Max has a point, would be an interesting read if could flesh out his argument and extrapolate a bit more. Free of speech and all. Whats to fear — knowlege and the truth. I did not find his comment at all negative, whatever that means.
Negative is usually the reply of someone who feelings got hurt.
Bravo for the nine year old who writes — he needs to gain some control on ‘his’ arrogance and bravado, it is a matter of ignorance rather than malice as far as his teachers are concerned I would suspect. He has labeled himself disabled, and so will reap that reward.
Humble would be a quality he might nourish in himself as a afront to megalmania. To many Aspergians who think they are super heroes. Greta Thunberg comes to mind — she sees an invisible gas don’t ya know.
Why is such shock that a nine year old might write. I would not cross the paywall, but from what I have read, it is not the work of a Galton or a Blake. He has been assisted. And this could be another dangerous rise of helicopter parent who might ride yet another of our tribe (sic) to fame.
Itr is good that autistic have hobbies, but for gods sakes they not all precious or special.
Seems we have crossed a line, where equal is not enough — quite like feminism or homosexuality. Were the war is won now they seek better than equal. And I am curious about autism in a victim driven culture. it seems autism has become fashionable. Everybody wants to be one, own one or know one.
There is a growing and unqualified arrogance within autistic communities. Not all autistics are geniuses and not all autistic are that intelligent. Most are dummies…I say that without predjudice, but I am sure someone will get offended.
Remarkable how emotions are important when really they are only symptoms of a body in flux…
Again the base state become polarizing.
Consensus and group ideology will always destroy individualism.
Personally I think David Max has a point, would be an interesting read if could flesh that out and extrapolate a bit more. Freedom of speech and all. I did not find his comment at all negative, whatever that means. when ever I hear a comment labeled negative, it seems more like an emotional response rather than an intellectual on…
Bravo for the nine year old who writes — he needs to gain some control on ‘his’ arrogance and bravado, it is a matter of ignorance moreso than malice as far as his teachers are concerned I would suspect. And care to presume.
Humble would be a quality he might nourish in himself as a afront to megalmania which seems more vagal. To many Aspergians who think they are super heroes.
Why is such shock that a nine year old might write. I would not cross the paywall, but from what I have read, it is not the work of Galton or a Blake. He has been assisted — and this could be another dangerous rise of helicopter parent who might ride yet another of our tribe (sic) to autistic fame.
Nowadays its like winning the lottery to have an autist as a child.
There are valid questions here. To ask questions of how a non-speaking child generated the language to participate in writing a book and a printed interview is a very reasonable thing to ask and wonder. To ask this question does not imply that you think the child is not smart or not capable. But it is a legitimate thing to ask given that it is stated that he is non-speaking. It is stated that he communicates with an ipad AAC device – so why not tell what app he uses? Yes, it’s true that children on the spectrum of the sort that used to be called Aspergers can have very technical and adult sounding vocabulary and syntax – but these children are also not typically non-speaking – and they don’t always use the vocabulary appropriately – it can have a delayed echolalic character – the comprehension does not always match the vocabulary. So there are legitimate questions here. Yes, facilitated communication is a discredited technique – but we don’t know if that is what was used here – that was an assumption – albeit not a ridiculous one, given that it states he has a communication aide, but still an assumption. It also states he uses a communication device. Perhaps he generated the language with the AAC device all on his own – but if so, why not say so? Why not tell what app he used? Why not provide evidence or footage of the child communicating with the device in daily activities? What makes this suspicious is that these are not unreasonable questions, but there is absolutely no good faith effort to answer them with any depth. If a you tube video where the child only uses pre-programmed complete sentences is the only evidence presented – then that remains suspicious.
Again, I am not doubting that the child could have the intelligence to generate such a work. I am asking for specific information on his process in generating the language – was it an AAC app – if so which one? The reluctance to be transparent about the process is going to continue to cast doubt on this child’s accomplishment. So if the people who know, care about the child, why not be clear about it so he can get proper credit. Wouldn’t seeing him communicate with his device meaningfully in daily activities boost the general public’s understanding of how non-speaking autistic people can communicate meaningfully through alternative methods. It is just odd that nobody is willing to clarify. That is what makes this suspicious.
Maybe they do use facilitated communication but really believe it is legitimate but are reluctant to say so because of the push back that will bring. That is the thing about facilitated communication – those facilitating do not realize that the messages are not coming from the child. They will think it is legitimate.
So these are valid questions.