Meet Nico: The Autistic Teen Who Talks with Piano Fingers

This video was directed by Nicolas Joncour, a pianist and university student in France. Nico spells to communicate. He shared his message about nonspeaking autistics and what he wants the world to understand. Click for captions, or full transcript below:

I was born in October 1999 in France, a country that was not ready for me. I resembled my maternal grandpa, and my personality was like my father. I don’t remember much from when I was a baby, but I remember books. I read books in my bedroom. By reading, I learned a lot.  I had musical notes in my head since I was born. I think I have antennas on my head for music!

“GUITAR” was my first word, but I had to wait until my third birthday until I got my first guitar. When my family sings Happy Birthday, it feels like a jackhammer to my head. But the electric candle from the cake had a pleasant happy birthday song, which was more exciting.

In school, when I was 3, the teacher understood that something was different about me about me, even though the family doctor did not notice anything.  I was 9 years old when I realized that I was not like everyone else everyone else around me. I felt different and knew I was autistic. From that age on, people called me out for being autistic.

The Shoah Holocaust Memorial in Paris was of great interest to me. Most people were surprised that I was the one asking to attend. “How could this 10-year-old understand the story?”–they wondered.  

I was 12 when we adopted a dog from the shelter in Fougères and brought her home to Rennes. I chose the name Fourenne for her to combine the names of both towns. She knows that I love her but I can’t play with her–it’s hard.

Today at the university, it is different than my schooldays. This is because I am recognized as a student, just like all my peers. I describe my personality as reliable, you can count on me, honest, and a high defender of justice. But when strangers first see me, they usually think I am stupid, deaf, and can’t understand what they are saying.

I can’t control the sounds that I make. I do try to control it and to make less noise. It is very difficult for me to learn to play the piano, but when I play an instrument, I decide what gesture I want to make. I am in control. I calculate in my brain to successfully move from one key to another. When I do math, I can feel my body. Playing piano gives me the ability to be the master of my spirit.

Henny: Nico,  if science fiction would make it possible for autistic people to use math in their heads to control speech, do you think we should ask people to do math to feel their mouth?

It would be great to realize that, to make it possible. I would like to speak. I love Math. I wish language would be as easy as mathematics.

And do you think that we should push autistic people to use speech?

I want to talk, to speak, but not by way of force or pressure. It would be like forcing my mom to speak with a lot of people and being social in a large crowd.  Mom: “It’s horrible, it’s a torture”.

A really bad key or a wrong note played is like a knife on the brain! It is very painful. But when people see me playing a wrong key, they think I cannot read the notes.

They must understand that I have no capacity to control my gestures and movement. They should have a different opinion, but the problem is, that I can’t force them! Teachers of young autistic children must understand that we are clever, we can learn. Parents should understand that we are real people on the inside.

In ten years from now, my dream is to be the pope! I want to be the pope for people who are oppressed–people who have no education. In ten months from now, I just want to pass my exams.

I want the world to look like you, Henny.

Thank you, Nico!

Evaluating Behaviorists’ Claims of ABA as Evidence-Based and Best for your Autistic Child

Hi, I’m Henny Kupferstein, and this video is a short response to the self-confirmatory tactics employed by behaviorists, to justify their practice. In my recent paper (PDF), it is discussed that (1) an autism diagnosis comes from a parent who fills out a questionnaire about their child’s behavior and (2) the evidence for effectiveness of ABA comes from the behaviorists themselves. So—if the parent can purchase or create an autism diagnosis, (and I know this as a parent myself) and the behaviorist can fabricate an effectiveness, then I can use the survey as instrument to check for symptoms and to check for effectiveness, and to check for parent satisfaction. Behaviorists use the exact same instruments to prove their worthiness, but they are challenging my use of the same instruments to test for ineffectiveness.

It is well documented that the tobacco industry funded and used scientific studies to undermine evidence linking secondhand smoke to cardiovascular disease. Tobacco-company-funded studies have been conducted specifically to support the development of so-called “reduced-harm” cigarettes. Back in 1971, president Nixon appointed a special committee to push the increase for corn farming to sustain an income to farmers who were influential in the voting and representing their dying industry. Burgers became bigger, fries were cooked in corn oil, and corn syrup was used to sweeten cereals and 90% of foods eaten by Americans. The government initiative sponsored research to insist that corn does not contribute to obesity and to refute the effectiveness of low-carb high fat diets. Some studies even suggested that such diets were directly linked to the increase of heart disease!

Autistic people and autistic parents should be advised to keep the faith alive. You are not going to be hurt for much longer. Trust your intuition, follow your heart, and do right by your child. When you stand up to a so-called professional who says you must listen to them to prevent lifelong disability and dependency, check with yourself if those are outcomes that you are aligned with. Do you wish for your child to be normalized and be made “indistinguishable from his peers” by subjecting him to an intervention that was used for conversion therapy, and to support the practice of pray the gay away?

Behaviorism is no longer allowed for animals and it is unethical to train animals with rewards and punishment for scientific exploration. Know the facts, and stick to your guns. It’s your life. You should be in the driver’s seat when deciding on what your needs are. How you coexist in the world is of nobody’s concern except yours. YOU MATTER!

To all other ethical researchers out there—here is a call for you to propose research to demonstrate effectiveness of your work. However, when using the voice of the people you claim to help, you need to justify why you are excluding the voice of the people who you regard as incapable of providing informed consent or owning their narrative, in whichever way they relay it.

As an autistic researcher, mother of autistic children, and practitioner to nonspeaking autistics who rely on radically different means for communicating, a counterstudy must be able to account for the bias that is glaringly obvious. Thank you for sharing. Please subscribe to my channel to stay up-to-date on my research.

Executive Function Brainfarts of Adult Professional Autistic Women

As I was getting dressed this morning, I found myself running around my bedroom naked like a crazyhead. I was looking for my bra, only to realize I had already put it on. Undefeated, I continued to silently talk myself down from the emotional ledge my mind puts me on when I become aware of executive function fails. There may be a pink blush spreading across my cheeks. That is the private showings of shame which I have the power to talk myself out of. “You are smart. You are beautiful. You are accomplished. Einstein couldn’t tie his own shoelaces. Now get yourself together, because that conference presentation won’t wait for you.”

Neurotypicals often joke about feeling stupid when they are searching for their eyeglasses, only to find them perched atop their heads. It’s usually me fumbling in my purse, patting the small front pocket where I keep my phone, just to “check” if my phone is there because opening the zipper to check with my eyes if the phone was inside, would require my brain to compute an inaccessible level of sensory-integrated instruction. All the while, the pocket-patting is making me feel muscle memory of what the purse always feels like with the phone in there, so it’s not registering the “lack of phone”, causing the frantic patting to increase. It takes more than an agonizing minute to realize that I already put the phone into my purse. “You are gifted. Your hair is stunning today. Mozart had no friends and died penniless and alone. Now get it together and go to that concert hall to perform.”

I sat at a panel with leading experts in my field at a lavish San Francisco hotel. The event was historic, especially for its inclusion of autistic scholars in the lineup. While I was able to hold my own throughout the intellectual discourse, I needed several days to recover from the sensory assault on my system. A week later, I went through my camera roll to find a photograph of a slide from a presentation I attended. I wanted to check the citation of the study which the presenter had referenced. That’s when I saw the photograph of myself wearing two different colored sandals. Staring at my phone, my eyes filled with angry tears. Did I really spend an en entire weekend with colleagues who thought it best not to say anything?

Granted, I wear the same brand and own several pairs in different colors. In California, anything goes and eccentricity is the norm. I wondered if I pushed myself too hard or if I had became a successful product of my environment’s overlooking acceptance powers. Has society really grown this much, or have people just become more silent of their intolerance? After Nikola Tesla’s wireless electricity project was shut down and he was silenced by the government about the Hindenburg airship disaster, Tesla said, “Our virtues and our failings are inseparable, like force and matter. When they separate, man is no more”. I yam what I yam.

Teaching autistic piano students to self-talk and regulate the mind-body disconnect

How does the autism mind-body disconnect interfere with piano lessons?

In this video, the student is in his 20th week of instruction. He is playing his assigned piece which he has practiced and knows well. Suddenly, his body fails to comply and he appears to “fail” at the task. In my work, teaching the students about the science of movement is key to help them organize their chaotic bodies and take control of sensory dysregulation, dyspraxia, dystonia, and other motor movement issues. It is critical to help the students learn self awareness. I strive to build their self esteem as they advance in their music education but their hands cannot prove that they know how to play the material placed on front of them. Remind them that you will keep teaching, if they will stick with the plan of “talking” to their bodies. Make a “deal” and watch them flourish.

Why ABA Piano Students Struggle to Believe in Themselves, Despite Musical Gifts

I teach piano to non-verbal and autistic students every day. Most have perfect pitch and a very high degree of musical aptitude. Along with their diagnosis comes a trail of baggage from earlier teacher-student relationships. Students as young as five may display behaviors that can be interpreted as aggressive and harmful to themselves and others, behaviors that make them seem like they aren’t paying attention, or behaviors that make them appear as if they don’t understand the instructions of the task at hand. I experience ignorance and intolerance of sensory accommodations from ABA therapists and behaviorally-trained educators observing my work with the Rancer Method. Their focus is on the ABA-type treatment interventions. It is the majority and sadly not unusual.

VIDEO: Why ABA Piano Students Struggle to Believe in Themselves, Despite Musical Gifts

The distinct differences in the success of my students are directly linked to their early exposure to esteem-building teacher-student relationships, and whether ABA was a big part of their early intervention. It becomes apparent when a student has been exposed to ABA for more than 10% of their lifetime (e.g. 6 months for a five-year-old child). They become prompt dependent for minor tasks. They lose track of their inner awareness and become unable to take clues from their inside-body to self regulate. Dysregulations turn into complete brain-fry. These system shutdowns are neurological and not in their control anymore.

When a student is in a verbal loop, repeating the same word over and over, and their body is shaking, it becomes time to physically redirect the body into a different setting. I will advise the parent to turn their child on the piano bench so their back is to the piano. The loop instantly stops because he is now in a different environmental state. The student will automatically turn his body back to the piano, completely regulated, and ready to resume. It is a shame that we allow people to grow up with a mindset that they have to allow others to tell them how to function, how to be, what to work for, and when to take a break. We owe it to our students to teach them how to prevent overwhelm without physically prompting them into an environmental redirect. See this article for strategies: Teaching piano student to stim as overwhelm prevention  

“Can perfect pitch be a problem when teaching note-reading to piano students?” Interview with Dima Tahboub

In this interview with Dima Tahboub of DoReMeStudio.com, we discuss how the Rancer Method builds neurological pathways to have magnify the gift of perfect pitch. Instead of the gift being a problem, there are surprising byproducts of the neuroplastic changes and visual motor cohesion, changes in eye tracking, and explosions in speech and vocalization.

Henny Kupferstein is the co-author of Perfect Pitch in the Key of Autism, the book on the Rancer Method designed to teach note-reading for gifted students.

Stop Banning Autistic Stimming Because of Fidget Spinners

Are the new fidget spinners driving you crazy? Autistic stimming and fidget toys differ in purpose. An informed perspective offers an attitude shift for educators who want to become aware of the differences.

Fidgets are marketing as a toy to keep the fingers busy, specifically for a kid who has focusing issues. Focusing issues are consistent with a diagnosis of Attention Deficit Disorder (ADD) or ADHD. Focus-seeking fidgeting is a very different purpose than the need to stim in order to prevent sensory overwhelm. The two should not be confused. During sensory overload, an autistic person’s body will uncontrollably move in ways that will try to reboot their brain back to its original functional state. When you react to their reactions to their sensory world, you are irresponsibly causing more harm with your judgement.

Imagine you have a tuning wrench because you are piano technician. The wrench serves a very specific function, and you need your wrench to help keep pianos in tune for your educated clients. Piano teacher, Lili Koblentz in Colts Neck, New Jersey offers this analogy: Your friends see that you have a wrench. They think it is “cool” that you get to carry a tool with you everywhere. They want a wrench too, even though they don’t really need to tighten things as much as you do. Suddenly, you can find wrenches everywhere. Some are cheap, some are expensive, some are bright flashy colors, and some are more subdued colors. Your friends carry them everywhere and are constantly showing them off, and aren’t using them for their intended purpose.

Suddenly, no one is allowed to bring wrenches to class with them, because they are distracting people and keeping them from doing their work. You tell people that you need yours to do your work, because if the nuts and bolts around you are too loose, you won’t be able to do your work. You are told that your tool is just a toy, that you just need to focus on what you are doing and it’ll be easy to complete your work. Besides, when you had your wrench, you were such a distraction to everyone else—it was rude of you to keep your friends from learning.

You are now left with an angry client base, and hundreds of pianos that yowl like dying puppies and feverish kittens every time they are played. You can’t focus on your work because you’re too busy worrying about your livelihood and people’s judgement of your craft, and you aren’t allowed to fix anything because your tool is a toy to everyone else.

Discriminating against a person who legitimately needs a tool to function in their highest capacity is a human rights violation. Autistic people are gifted in many ways. Research showed that 97% of autistic people have perfect pitch1, and sure enough, all of my piano students have it. I would want them to be as skilled in their trade as the piano tuner wants to be. I need to make sure they have all their tools when I am hired to teach them. Therefore, I recognize that the autistic body must constantly be in motion in order to concentrate best. Please rethink your attitudes before you judge a child or adult who reaches for a tool that makes them be more attentive to what you are teaching them.

  1. Next, please read: Teaching piano student to stim as overwhelm prevention
  2. Also, please make use of stimming resources page with directions for use.

Sources:

Kupferstein, H., & Walsh, B. J. (2016). Non-Verbal Paradigm for Assessing Individuals for Absolute Pitch. World Futures, 72(7-8), 390-405.