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!

Concern: Skype Piano Lessons Will Never Work for My Autistic Child Because…

I only teach piano to nonspeaking and autistic students. All the lessons are online through Skype or FaceTime, even for families who live locally nearby. This helps me reach students all over the world and in underserviced areas. The format is a 1:1 personalized lesson, not a class taught to more than one student. Oftentime, parents will worry about the online format, given their child’s history of requiring hands-on support or in-person prompting. Other parents often remark that they are unsure if the iPad would be a distraction during the lesson. Lastly, many parents wonder how the lesson proceeds if the student runs off or steps away from the instrument. Please read: Why Piano Lessons for My Autistic Child? Top 10 Questions Answered by Autistic Piano Teacher. Here are some frequently asked questions to dispel some fears about the online structure.  

Sensory

  • Your child will also do better if I am in their learning space without being in their physical face.
  • Driving in rush hour traffic and reorienting to the teacher’s house and the smell of her dinner cooking may be too much for one day.
  • Having a lesson in the comfort of your home is optimal where the sensory accommodations are already established.
  • I am autistic too and I arrange my environment to accommodate my sensory needs. Once organized, I am able to be fully focused on the teaching. I can’t have people in my space while I teach.

Physical

  • Mother providing hand-over-hand support to nonverbal autistic piano student with dyspraxia

    Dogs and pets are welcome, if that’s what the student likes. I even teach turtles, cockatoos and Darth Vader.

  • It is important that the room be arranged with everything comforting. All efforts should be made to turn the piano lesson room into a safe space.
  • Some students require upper core support, so experimenting with lumbar-support chair or office chair may be helpful.
  • Arms should be like the capital letter L extending to the piano. However, many students spend the first year with elbow and shoulder support, rendering their hands in the T-Rex position. The awkward posture helps build proprioception in the fingers, which are the farthest point to receive motor signals. As the fine motor skills become reliable, the hands lower into the L posture and support is faded.
  • Some students sit with pretzel legs, one knee up to the chin, or on swiveling chairs. All postural adjustments are encouraged and discussed to enhance accuracy of the finger movement.
  • If the child utilizes larger sensory tools, keep (for example) their trampoline and bouncing balls nearby. The student may utilize anything they need to redirect their body to the piano during the lesson.
  • If the student runs off or rolls on the floor, I don’t consider that a “behavior problem”. Parents should never drag the child back to the piano, bribe them, or threaten with a punishment. Rather, I encourage the student to return to the piano using a variety of tools that I have taught them.

Visual

  • From my observation, almost every student so far has displayed a photographic memory. They will take a quick peripheral glance of the material and almost never refer back to the page for visual prompts. Instead, they are ‘reading’ from their heads.
  • The student is not required to “look” at me. This means that the device is set off to the side where I can see their profile while seated at the piano. I do not allow parents to prompt “look at the book!” or “look at Miss Henny!”
  • If I require the student to use their eyes in any way, I will instruct them on the best strategies to accommodate their visual depletion rates and perceptual differences.  
  • Students with visual impairment, cortical, TBI, or congenital, are encouraged to consider learning to play from written music. Accommodations are made to enlarge the music, use clamp-on magnifiers, colored overlay filters, and a referral to an Irlen diagnostician. At this time, I am not skilled to teach braille note-reading.

Auditory

  • Piano student wearing noise-cancelling headphones during lesson

    It’s quite alright if the student covers their ears or wears noise-cancelling headphones. These devices are designed to silence the disrupting surround sound and filter only the dominant sound they wish to hear, which is the piano.

  • Students may appear to be bothered by the sound distortions to my voice on the iPad. The volume may be lowered, we can try to call again with a better connection, or complete the lesson using a smaller device (cellphone).
  • I almost never play on my piano together with the student because our pianos are very likely in different tuning. I use the classical guitar to accompany the student. I slide my fingers to adjust to your tuning, rather than making the student adjust to mine. With the nylon strings, it is a warm and pleasing non-metal sound which is quickly an instant favorite for many.
  • You will notice that I NEVER repeat any instructions and speak in age appropriate language. I don’t require that the student appear to be actively listening in a manner that has been determined as appropriate by others. Rather, I keep teaching knowing that he can hear me from any point in the house.

Accommodation

  • Some students are bothered by seeing themselves on the screen. For the first few weeks, they find it helpful to cover my face onscreen with a post-it note.
  • A post-it note can also be used to hide the notification bar and charge percentage, which distracts many students.
  • Sensory stim toys are encouraged, so please do keep your string and straw collection nearby! I’ll show the student my collection and encourage the use of all available tools to organize the physical body.
  • When there is a siren or airplane on my end, I will press mute on my computer.
  • Students who wear hearing aids or cochlear implants may remove them if the sound is distorted or overwhelming. We learn to feel our way around the instrument and listen for vibrations to correct the notes when playing.
  • Vocal stimming and all stimming is ignored. It doesn’t bother me and I continue to teach.
  • Crying or screaming is a non-issue for me, but it is discussed to learn more about the triggers. These triggers are resolved with an agreed upon accommodation, and the lesson continues.
  • Students may be dressed, in their underwear, or wearing anything that is comforting to them. I am not perturbed by students who suddenly strip.

Literacy

  • Parents sometimes insist that their child “can’t” or “doesn’t” read yet. A student does not have to prove that he can read in order to be able to read. Many students are hyperlexic and have an early ability to read without ever being taught. I presume competence until otherwise proven.
  • During the lesson, I will sing the lyrics of the song rather than the note names. This encourages the student’s eyes to hunt for the next note to play based on where he’s up to in the song. The parent may observe that he is reading and finding his way through the book.
  • I also ask students to sing the lyrics of a song. I prompt by speaking the lyrics first, and then have them play and sing. This offers the learning opportunity for pre-readers to learn phonetic skills on the fly, and piece reading concepts together almost instantly. Within 3-4 weeks, students are often literate above their age level.

Communication

  • Student is spelling on a RPM laminated letterboard to communicate during the lesson

    All types of communication is welcome. However, I have a strong preference for families to already be experienced in the Rapid Prompting Method (RPM) and/or Facilitated Communication (FC).

  • Please have the AAC device on hand for communication during the lesson.  
  • I never ask a question and demand an answer, spelled, spoken, or signed. I presume competence and ask instead: “Which one is that starting note? Show me on piano”.
  • The piano becomes the instrument to demonstrate knowledge much like the letterboard is a tool to spell a response.
  • I am knowledgeable in basic American Sign Language and do try to sign while I speak to build fluency.

Social

  • Parent often request an assignment to play for grandma, or family Thanksgiving party, or for a school talent show. These requests are challenging to the student’s progress. They are a tease to what the student may want to do but may not be technically ready to do at that point in time. Playing piano publicly as a form of socialization is truly the highest compliment to your child’s training. However, please allow me to direct the pace and type of socialization.
  • Oftentimes during the second year of instruction, I will recommend that a family visit their local church and obtain permission to sit in the back while the choir rehearses. At that point, the student is ready to not only follow along on the sheet music, but they are skilled in solfege and sight-singing. It is delightful when the perfect pitch musician from the back of the room begins to sing without a pitch prompt, while most choristers are waiting for the note from the pianist.
  • Other socialization options are offered as time goes by and connections are made in your local and broader musical community.
  • The student and their family are informed when they are ready to join a band, orchestra, choir, or audition for colleges.

Learning

  • Your child’s learning style will be actively assessed in the first year. How they take in information, how they process and produce may be very different.
  • After the assessment, I will ask the student to rearrange their learning and productivity around their strengths. Sometimes a parent will insist “but my child needs a visual aid” or “can you just play it for them so they know what it sounds like?” I don’t teach in the traditional manner where supplemental supports are offered. Rather, the student is encouraged to use strengths from within to flourish.
  • It is my goal to build an independent musician who can demonstrate their talents on any piano from anyone’s music, without colored stickers, highlighters, and adaptive tools.

Emotional

  • I no longer teach students who have been exposed to Applied Behavior Analysis (ABA) interventions. The forced compliance and normalization takes a heavy toll on the child’s psyche. They become prompt dependent and wait for instructions to complete a task. I don’t offer ABA styled instruction in the lesson, nor do I allow parents to use ABA language during the lesson, such as “After piano, you will get MineCraft time”.
  • The lessons will be most successful if a healthy student-teacher relationship has occurred in the past. If every student-teacher encounter has resulted in trauma, I will be perceived as a threat. This would require the lessons to be hijacked by the emotional needs and relationship building, and little learning will take place.
  • Students who are homeschooled or unschooled may not consider me to have anything to offer to them, as they are accustomed to pace their learning based on their strengths rather than a class schedule. This is a positive and I work to build that learning relationship, but there may be lots of resistance at first.
  • Sometimes a student is having a rough day. We pause the learning and discuss it. It is not conducive for anyone to be forced to learn when there are other things going on. Sometimes a mere acknowledgement of their disposition is enough to get back on track without derailing the entire lesson.

Music Teachers — Learn the evidence-based method and teach piano to autistic students. Qualified piano teachers and senior-year music majors are eligible to enroll in the Doogri Institute training program. Click to learn more and inquire about your own professional training, and how to become a licensed Developmental Music Educator™ (LDME).

Please read: Why Piano Lessons for My Autistic Child? Top 10 Questions Answered by Autistic Piano Teacher.

 

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.

“The Right to an Education”, Article Typed by Non-Verbal Autistic Piano Student with Dyspraxia

NICOLAS JONCOUR

NICOLAS JONCOUR

Article typed by Nicolas Joncour, Piano Student

[First appeared in ZOOM Autism Through Many Lenses magazine, Issue 9, p. 20]

A decent life in France is practically impossible for an autistic student, especially if you are nonverbal like me. In special schools there is no real education, and the psychiatric hospital remains the norm. As my mother encounters more and more difficulties to enroll me in a normal school, the only solution to an equal opportunity is maybe to leave France. I want to go to university to study the Holocaust as people with disabilities are still destined to horrific fates.

My hope is to study history and the Holocaust, a subject that has intrigued me for almost six years. Specifically, Operation T4, which is the eradication of the people with disabilities by the Nazis. Perhaps the Holocaust interests me because I feel the discrimination in relation to my disability. The eyes of others are like deportation camps without return for me.

Without my mother I would likely be in a psychiatric hospital. The right to education definitely remains the domain of utopia. The more I grow, the more I realize I do not have my place in society. I have to fight to deserve to dream. My disability, autism and dyspraxia, makes me look like a mentally-challenged person. People talk to me as if I am a small child, and they watch my gestures as if I am a monster.

The reality is that all their looks are like the slam of a cattle wagon door. My connections towards the victims of Operation T4 are very strong, and my reality joins their fatal destiny. I have faith that helps me, and God gives me so much love that I do not feel alone. I think I have the right to denounce my condition and my social discrimination as long as I would suffer of it. The right to a dignified life is my fight, and I recently joined the ENIL Youth Network to create change. Nonverbal autistic people demand recognition of their right to a real education.

My life would be rather simple if people would consider me as a person rather than a thing to eradicate. I want my intelligence to be recognized without having to meet the low expectations of people who doubt me. The peculiarity of my disability is that I understand very well what kind of people I have to deal with. The inability to defend myself makes me vulnerable to all attacks. Not being able to express oneself orally is a very hard way to live.

People do not consider my written prose without doubt. Not even my relatives who do not understand autism. To be recognized, mentalities must change, and the way we move, having no eye contact and no speech, shouldn’t exclude us from living a fulfilled life. For this to happen, we need the right to education, an education which mustn’t be negotiable and should be accessible to all.


Nicolas Joncour is a 16-year-old nonverbal autis­tic student who types. He lives in France and is homeschooled and in mainstream school for a few hours per week.

Follow him on Facebook and visit his blog.