Author Archives

Henny Kupferstein, M.A.http://www.hennyk.comMusic, Art, Research.

Perception of Recovery Causes Autism Parent to Choose ABA Therapy

July 27, 2019 by Henny Kupferstein, M.A.

An autism parent’s stress level correlates with the perception of recovery. When a parent believes that their child looks normal, and therefore can be made to behave normally, then they are imagining a recovery. A parent of a child who looks developmentally different, will be more likely to expect normalization, and then focus the intervention on skills acquisition.

What does this say about Applied behavior Analysis (ABA) and the explicit focus on normalizing autistics by force, because of a parent’s shame?

The parents who have children diagnosed with autism are statistically significantly more stressed out than the parents who have a child with down syndrome. So there is something extra there. It’s not just the fact that they have developmental disability, it’s even more when you have a child with autism. And I think we can guess why: you can’t recover a child with down syndrome. You can’t, but you might be able to for a child with autism, if you do 40 hours of work a week, through a Lovaas program or some other type of applied behavior analysis approach. That exacerbates a lot folks’ stress.

Daniel J. Moran (Author), (2012). Acceptance & Commitment Therapy: Immediate, Effective Clinical Interventions – That Really Work!. PESI Inc.. [Streaming Video].

Presenting While Autistic – Top 10 Red Flags of Tokenism and Exploitation of Autistic Professionals

April 21, 2019 by Henny Kupferstein, M.A.

Henny Kupferstein presenting her most recent research at CalState Chico Autism Conference, 2018

You were invited to present at your local community college event. This feels like a high moment for you. Being autistic has set you apart from your peers, and may have made your climb to standardized norms more challenging. You may have personally experienced the rush of joy when your interests and aptitudes gave you an edge over your peers.

Today, you find yourself to be a professional scholar, practitioner, parent, or researcher, and also autistic. That invitation feels nice. So what could possibly go wrong? One red flag would be the reassurance that the ABA promoters in the conference lineup are there because people really want to “hear all sides” in addition to yours. You may feel confused and uncomfortable when they remind you that you may only use person-first language, and to avoid the word “autistic”. You begin to wonder if you would’ve been invited to give this talk if you were not autistic.

“Sometimes when people say ‘tell us your story’, what they really mean is “tell us what we want to hear.” ~ Jim Sinclair

If the talk is specifically about the autistic experience, any speakers who aren’t autistic themselves would be a questionable choice for the organizers. If the agenda of the event is to hear from “a person living with autism” and you are invited specifically because you are both autistic and a professional, then your sharing of your lived experience should be completely uncensored.

If the conference is about people showcasing their professional accomplishments and making recommendations to the field of autism, then this is how you’d recognize when your autisticness might be the only reason you were invited to this speaking engagement:

You are not treated as your professional colleagues are—you are addressed as an autistic individual rather than a professional, or without referencing your academic credentials.
The agenda of the event is to hear from “a person living with autism” and not about you as a professional. When you wish to present on your professional accomplishments, you are told that maybe next time, they can try to see if the conference has room for your research, which they profess to have not read at all.
The organizers claim to have a “minimal” or “no budget” for bringing you in, yet the event features motivational speakers who travel and lecture for a living, and often require a booking years in advance.
The conference headliner is an autistic celebrity who never published scientifically valid research about autism (or maybe they only published about cows in their career).
You are told that you have been “curated” by someone on the board or the planning committee.
You are offered free entry to the entire event “in gratitude” of your contribution.
You are not asked when you wish to present, but are placed in a spot or locale that might not accommodate your sensory and functional needs.
The advertising material promotes your autism as your attribute, instead of your submitted professional bio.
You are listed as a footnote, while the person who “found” you is in the title of the event. Meaning, they are taking the credit for the content you will speak about.
The event is about autism and employment, but autistic presenters are not paid.

Why These Autism Employment Issues are Problematic

They are asking you to present because you have “personal, lived experience” and not because they want to hear how your experience has informed your practice as a professional. They don’t want to hear about your comorbidities, all the ways you are masking and exposing yourself to sensory violations to deliver your presentation. The work you identify with is irrelevant, because you are primarily brought in as the diversity token on their agenda.

They want to hear about the shiny ways you overcame obvious stereotypes. The therapists in the audience are hungry to congratulate themselves for the work they are doing with people like you, and the parents are hoping that their children will acquire a semblance of presentability, the way you have. Overall, they are hoping you will make them feel more inspired just because they made the effort to listen to one autistic person.

“I don’t tell my story to teach. That would be free emotional labor.

If anyone learns from my words, that’s because they choose to listen.” ~ Amy Sequenzia, Author

They’re not looking for #ActuallyAutistic professionals. They are not #AskingAutistics to share their work. They just want to fill their quota and earn their benevolence brownie points. As for you, know that the IRS declaration for speaker honorarium should also include travel, lodging, and meal reimbursement, reported as “non employee compensation”. Do you have examples of how you may have been taken advantage of? Please share your experience with tokenism and exploitation on the basis of your diagnosis.

Meet Nico: The Autistic Teen Who Talks with Piano Fingers

December 16, 2018 by Henny Kupferstein, M.A.

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…

October 27, 2018 by Henny Kupferstein, M.A.

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.

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

October 6, 2018 by Henny Kupferstein, M.A.

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.

Got Perfect Pitch? Carol, Please Delete This Group: One FaceBook Group’s Cultural Evolution

January 15, 2018 by Henny Kupferstein, M.A.

I first joined the “Got Perfect Pitch?” FaceBook group because I wanted to be in a supportive environment where I wasn’t the only wacky and misunderstood person in the world. Soon enough, I was able to share anecdotes and relish in the stories others shared too. One day I posted about my delight as I was driving on the freeway—I was able to adjust my cruise control so the lines on the road were pulsing in the exact rhythm as the symphony on the radio. Everyone in the group understood me. The other day I shared how tickled I was to be driving in between two mountainous regions which made me hear two neighboring radio stations simultaneously. Imagine, one was a chorus in Latin and the other was a trumpet concerto and both were in the same key—what were the odds? More importantly, what are the odds that anyone outside of this group would care or even understand why this was delightful to me?

The group started out for people to first find out what pitch abilities they shared with other members: “Can you do also do that?” Along the way, we discovered that some leading researchers were lurking in the group, especially the ones responsible for secretly editing the Wikipedia definitions in the dark of night. At some point, synesthetes began arguing about what color C was, leading to endless battles comparing harmonic hues and textures.

When savant Matt Savage graduated from Berklee and joined the group, he sometimes ‘liked’ posts while traveling to perform around the world. Then, the movie Pitch Perfect 2 came out, and membership surged. New members were highly disappointed that the group had nothing to do with the movie. Remarkably, the existing members responded with a cohesiveness to the imposters trolling the group. Puns were not spared, “name this note” tests were posted, and all kinds of antagonizing tests were initiated to provoke and scare off the posers.

And then, Carol joined. Judging by her profile photo, Carol seemed like a polite retiree who enjoys a glass of red wine with her dinner every night. According to her about-page, she is from Green Bay, Wisconsin and went to Green Bay East High School, and she currently lives in Durham, North Carolina. She also studied to be a Prevention Specialist at the University of North Carolina at Chapel Hill and worked at Eno River Unitarian as a Universalist Fellow.

Oy, oy, oy!

Carol never participated in any group discussion, but on January 11, 2016, she posted, “Please delete this group.” The brazen discussion-starter yielded 34 likes in response to the first WTF comment within the first few hours. One very polite member tried to ask, “Carol, are you trying to leave this group? Or do you first want to hear the lamentations of its members?” Next came this comment, “Between this and the weirdo who thought the group was about the Pitch Perfect series, I’d say we really need a screening process for future comments” and finally, someone polished off the thread with the grumpy cat “No” meme.

After fifty-nine comments with varying degrees of not-so-niceties like “Y’all, she’s like 800 years old, she doesn’t understand the e-net and inter-mails,” it was determined that Carol may have been tipsy, was jealous of those with perfect pitch, or this accusation, “Your ‘g-string’ must be a bit tight because you’re not really ‘in tune’ with what’s going on.” Yes, perfect pitchers do have an addiction to puns. In the end, the moderator wrote “I just deleted her as per her request (I think) but this thread is too epic to delete.”

For screening new members, people proposed a captcha code of pitch identification. Members argued it would be cruel and the moderators opposed it, reiterating that this group is free and open to anyone who identifies with having perfect pitch. The territorial nature of this reaction is what taught the group members so much about each other. What started as a group for people to find commonalities with others who possess the same gift, turned into a safe space for sharing their vast weirdness, comorbid with perfect pitch.

Turns out, the epic thread engaged so many people that previously-silent members got to make friends and reunite with people from a previous life: “We were in band together, remember?” The love was alive and kicking from all corners of the world: “Sheesh, I leave this thread for a few hours to go to orchestra rehearsal and I come back to more of this! You people are crazy.” And to polish off Carol’s epic thread, was this last comment: “GET OUTTA HERE!!! IN G# DIMINISHED OR MINOR CHORD!!! BYE!!!”, with an immediate response: “Wait, you mean you want to leave things unresolved?” finished off with, “But this is such a sharp group and life would just be flat if it were deleted!”

Today, most posts include the Carol treatment, which is an insider joke that newbies learn to quickly study or die trying to adapt. People will either be sent to their room if they create dissonance or get Carol’d and be threatened with deletion, please. As a trigger warning, people are known to add “and stay out of this, Carol,” or “Carol was here.” When the average person posts a cat meme with the tagline “please delete this group,” it can be expected to earn at least one comment of “OMFG WE NEED T- SHIRTS.” My favorite posts are the ones by members who already anticipate an avalanche when they share a video of a fart concerto, fully notated. Thus they self-flagellate by adding the tagline “Carol, I already went to my room, please.”

Today, January 15, 2018, is the second Caroliversary. It’s good to see her drinking in solidarity. L’chaim!

The Perfect Perch – US Patent 9775734 Hand support method and device for somatosensory input to the palm

November 9, 2017 by Henny Kupferstein, M.A.

I am very excited about the U.S. Patent which was issued for the Perfect Perch device. It is U.S. Patent Patent No. 9,775,734 B1, named “A Hand Support Method And Device For Somatosensory Input To The Palm”.

Learn more at DoogriIntsitute.com.
Read the complete patent claims and drawings here.

If you have a piano student who has a documented diagnosis of dyspraxia, please contact me for clinical trial recruitment. Please make sure to read all the information at DoogriIntsitute.com first.

Perfect Perch hand support device for piano students with dyspraxia

Henny Kupferstein