Bump Dots, So Flappy!

My bump dots arrived and I’m jazzed that my confidence around my independent living skills have soared. Many autistic people have a hearing impairment such as central auditory processing disorder (CAPD), hyperacusis, and misophonia. Autistic people also have vision impairments ranging from cortical vision impairment (CVI), simultanagnosia, double vision, and distortions. Lastly, the autistic motor movement impairments are neurological, but not every autistic person is properly assessed for dyspraxia or dystonia. Rather, they end up with a diagnosis of low muscle tone, poor fine motor skills, and motor planning problems. I am one of the rare lucky ones to also have Balint Syndrome, and I know the odds. I’m a spectacular zebra unicorn to western medicine practitioners. 

 

Mixed Bump Dots, Mixed Sizes and Colors - 80 Count

Mixed Bump Dots, Mixed Sizes and Colors – 80 Count

Bump Dots, Yay!

Mixed Bump Dots are ideal for low vision, and autistic sensory deprivation and processing disorders. These Bump Dots allow a variety of uses from tactile marking of everyday items such as computer keyboards, telephone keypads, multiple switches, and kitchenware. Low vision labelers are perfect for homes or offices with both blind and sighted people. Use the clear dots so the view of keypad displays are not obscured. I got my Mixed Bump Dots, Mixed Sizes and Colors – 80 Count all the way from the Amazon.

bump dots on my microwave keypad

bump dots on my microwave keypad – click to enlarge and zoom in

Matching Bump Dot Selections to Tasks Requirements

  • I used a clear medium sized dot to place on the Power button on the microwave so others can also find it. The dot is not only clear and shows the text it sits on, but it also somehow magnifies!
  • I used a small red dot on the Start button on the bottom right. This was tricky because I didn’t want to cover the text on the button, but the button requires the dot to be squarely in the center in order to word as a pressing function.
  • I used a medium clear dot on the number 2 of the number pad. It magnifies and is perfect for sharing the microwave with sighted people.

Motor Planning

In this arrangement, I first find the power dot with my index finger, and then find the #2 dot with my middle finger. I can then imagine the rest of the numbers relative to the 2. Finally, I scoot down to the start button with my pinkie, and my job is done. My hand stays in the exact position on the keyboard throughout the task, and builds motor memory for the future.

What are you using bump dots for? Please share!

My Autistic Fractals in the 4th Dimension of Consciousness

In UNIPAZ, Brasilia, I had the honor of presenting my lived experience to a class of transpersonal psychology students. In my presentation, I demonstrate how my eyes sees objects as conceptual fractals from within the 4th dimension of consciousness. You may notice some gaps in the talking. This video has been edited to remove the Portuguese translation provided in realtime by Alfredo. 

English transcription of presentation at UNIPAZ, Brazil:

Being in the United States diagnosed as autistic, provided me a really nice fancy package to understand my differences. But the more I understood myself, the more I was witnessing the trauma of those who did not have the privilege of this identity. As you are going through transformation in your education, you are experiencing an evolution of your own identity. That is a privilege that you now have, because you can choose this process. 

The autistic child is under identity threat all the time. They enter the world with genetic memory and skills that cannot be explained. I can explain it in language that is accessible to the mainstream. I made it my mission to become an academic student and to use theories of transpersonal psychology to explain what people cannot observe. When we say, “autistic people are deficient” in this, that, or that, we are using traditional metrics to put people into a box of comprehension. 

Hypothetically, if my eyeballs work differently than your eyeballs, this is what the world looks like to me. I’m looking outside the window at the tree. 

The nautilus is a mathematical shape. Where does it begin, and where does it end? So, just for aesthetic purposes, I will begin from the center, because I like my lines to be clean. 

So this is the traditional nautilus shape that you see if you’re interested in this stuff. The more you stare at it, the more distortions begin to take shape. Perhaps in the first second that you looked at it, it appeared one dimensional. I believe that the brain has a 3-second time-lapse of perception, and after 3 seconds, you may start noticing a second dimension. So after three seconds, you may notice a 2-dimensional shape.

The moment you have a third dimension, it becomes obvious because you now have to have a negotiation in your brain, if the nautilus shape begins at the tip, or the center. This negotiation is your fourth dimension. 

My eyes give me a perceptual sphere that begins in the 4th dimension, and then I have to do a negotiation to dissect the components. Here is my fourth dimension. My eyes see a grid on an axis, but I don’t see all of the boxes simultaneously.

Every three seconds, the boxes change—and I will show you. 

So perhaps in the first three seconds, I receive A3, A4, C3. Inside A3, A4, C3, I have to make a picture-puzzle, which is this. 

But I wait three seconds, and now I have this. 

So, this might look like abstract art, but my work is very deep and very meaningful. Because not only do I have the privilege of doing these negotiations, I also have the privilege of taking every cube, and going into the fractal of its meaning. So although you see the nautilus as a potential fractal, I perceive my world primarily as existing perceptually in the negotiation space of creativity, where I can hold the multitudes simultaneously and it becomes irrelevant on that material dimension. I say material because that is my baseline, because that is my normal, and in that beautiful place, it becomes irrelevant to me whether the nautilus begins in the middle or at the end. 

Therefore I challenge the traditional explanation of moving up or coming down, because I believe that autistic people have access to the potential of thoughts and concepts from the interstitial space, the space between the one and the one. It’s the space that is the beginning of everything in the future. 

So if you’re asking an autistic child in the classroom to do reading comprehension and he says “oh look it’s a beautiful bird,” then in the United States we say “you’re stupid, you have to go to the special class” and we rob the child of the opportunity to gather information in a setting that is considered normal. So the autistic child learns to derive pleasure from the paranormal.

I call this the party in my head and I only share it with people that feel safe to me because my worldview exists of objects which are also fractals which are also fractals, and fractal objects that have infinite possibilities of perception. I can do that with observing children in a classroom and knowing immediately the depth and breadth of their existence. I can do this by reading multiple research papers and finding a connection. When I do data analysis it feels to me like a synthesis of deeply meaningful symbols.

Many researchers like to share their work but they don’t derive pleasure from doing the mundane mathematical work. So I want more people to be envious of the pleasurable experiences that I have and to eliminate the stigma of difference by recognizing that the child who has a revelation in his creativity, this is the child who is not having deficiencies that can be defined by the non-autistic person. It’s only the autistic child himself who can describe how he perceives his deficiencies.

The privilege I have with transpersonal psychology is to use scientific terms to provide meaning and to make meaning of my existence. But I don’t intend for my work or my research, I don’t intend to colonize the experience of other autistic people with my worldview. If there’s somebody who wants to identify with deficiency, I can accept that. if you want to say that you have a sister who suffers from lesbianism, that’s okay. If you want to say this is a person living with autism, that’s okay. 

For me to have an identity to feel like something normal, I have to be allowed to say I am autistic. I have been able to feel like my experience is indigenous to me, so all my work that I do takes the position of liberating my experience from the medical pathology paradigm and moving through it, not up or down to it, so that other people can make meaning of my experience. 

So I want to invite you as you are encountering people who are severely other than you, remember that they come at you from the fourth dimension and in  your social encounter you have an opportunity to play creatively and create something new together. And that is called transcendence.

Thank you so much.


You may notice some gaps in the talking. This video has been edited to remove the Portuguese translation provided in realtime by Alfredo. 

 

 

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 piano lessons videos. 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  

Recommended reading:

Kupferstein, H. (2018) Evidence of Increased PTSD Symptoms in Autistics Exposed to Applied Behavior Analysis. Advances in Autism, 1(1), 19-29. DOI :10.1108/AIA-08-2017-0016 [PDF]

Kupferstein, H., & Walsh, B. J. (2016). Non-Verbal Paradigm for Assessing Individuals for Absolute Pitch. World Futures72(7-8), 390-405. [PDF]

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.

Teaching piano student to stim as overwhelm prevention

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.

Reframing Autistic Behavior Problems as Self Preservation: A Freudian View

Autistic disruptive and injurious behaviors are often seen as problematic. Sensory overload significantly distresses the autistic brain and triggers a halt in all cognitive abilities. Oftentimes, such ‘shutdowns’ might even be undetected sub-clinical seizures. Physiologically, the abrupt onset of sensory overload shutdowns are characterized by eye twitching, headaches, rage, and episodes of staring blankly into space.   

Freud observing autistic girl case study. Artwork by HennyK.com

Freud observing autistic girl case study. Artwork by HennyK.com

The overloaded system will attack with a fight-adrenaline for the purpose of staying alive. The threat of the fire alarm assaulting the autistic nervous system is greater than a herd of wolves chewing away your camping tent. We cannot measure a panic response that is driven by a system made hyperresponsive by extreme perceptual distortions, which are highly individualized. We also cannot judge a behavior as abnormal or a problem, when the survival and sanity of the autistic person is dependent on the behavior’s execution.

Sigmund Freud argues that man learned to survive by making use of all utilities and resources accessible to him. For the continuity of the species, “with every tool, man is perfecting his own organs, whether motor or sensory…[enhancing or] removing the limits to their functioning (Freud, 1989, p. 43)”. For example, early humans extinguished fire with the stream of their urine. The extinguishing of fire is not a problematic behavior when understood as a purposeful act with an intention to advance the needs and functioning of the individual.

For autistic people, stimming and flapping are tools for self regulation. The more they do it, the more they are listening to you, or concentrating on the task at hand. The more sensory information you force them to integrate simultaneously, the more you are forcing them to revert to their primal need to just survive. When the mammalian brain goes into survival mode, you no longer reserve the right to pathologize the response as a behavior problem.

Source: Freud, S., Strachey, J., & Gay, P. (1989). Civilization and its discontents. New York: W.W. Norton.