Tag Archives: autism

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

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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

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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

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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

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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

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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

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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.

Teaching piano student to stim as overwhelm prevention

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me showing off my stim toys while student learned to use his sensory need as a overwhelm-preventative instead of a crash-erase.

Me showing off my stim toys while student learned to use his sensory need as a overwhelm-preventative instead of a crash-erase.

Two nonverbal preteens played the piano yesterday. They are my tough fighters, but also spell using RPM (Rapid Prompting Method) letterboards. They frequently type their complaints about their brain-body disconnect and how embarrassing it is that they can’t show through their fingers that they know the music.

Me: “Who else sees your body like this? In what other situation?” WHEN IM OVERWHELMED

“Do you know the difference between physical, emotional, and sensory overwhelm?” NO

And then the Henny-lecture began:

“Play one line, and then go back to the sink and play with the water. That’s what your body needs in order to erase the overwhelm. I don’t want you to wait until your body crashes and then you look like a person who is embaressed of yourself. Go back to the sink to prevent overwhelm. Do we have a deal?” YES

Perfect Pitch in the Key of Autism A Guide for Educators, Parents and the Musically Gifted

READ: Perfect Pitch in the Key of Autism
A Guide for Educators, Parents and the Musically Gifted

He then played three lines instead of 1, went to the sink. Returned. Played two more lines. Sink. Returned. Thanked me….

I teach awareness of self, so they can make choices. With other autism interventions (such as ABA), they are conditioned to be so prompt dependent, they they lose touch with internal functions. They forget to read their own body signals. In my work teaching piano to nonverbal and autistic students, I undo that damage. Each time they stim, I announce like a translator “you just did that with your fingers near your eyes because you wanted to erase the work of reading treble and bass clef together for the first time”.

As an autistic person, I live inside their sensory experience and can read them instantly. By offering these nuggets, they can learn to connect what they do with why they do it. Eventually, they can reach for those stims as preventative tools. For a list of stimming ideas, see my resources page.