Tag Archives: stimming

How is OCD different from autism?

Is it OCD or Autistic Perseveration? Setting the Record Straight

by

People are very quick to assign labels to behaviors. When an autistic person insists on correcting your grammar, it may feel like they are shaming you. When an autistic person insists that you have taken the wrong road to get to the ice cream store, you may feel like they are calling you stupid. Knowing the source of these expressions helps the bystander coexist with the autistic person. For autistics, knowing that the world is becoming less hostile and safer for them to express their thoughts, is necessary for healthy identity.

Negative perceptions of the self are formed when people tell you to stop. Stop talking. Stop lecturing. Stop flapping. Stop covering your ears. Stop reciting pi. Stop, stop, stop. These are weapons used by neurotypicals to enforce societal norms by oppressing the autistic way of being. When the autistic persists, they call it a mental illness. They must label it because any other explanation is inconceivable.

We are told that we are rude. We are annoying. We persistently set the record straight. We should not correct others. We should not tell them that the plural of syllabus is syllabi. We should simply sit with all that information and hold it in. Like a sneeze that is threatened to exist. If you hold your nostrils, maybe it won’t escape. If you stuff your mouth with a sock and also hold your nostrils, there is a chance that you can bring on just the exact amount of internalized oppression to make this sneeze implode inside.

When you do sneeze anything, you are perceived as a social misfits. Bloggers call us fussy brats. Authors refer to us as having ADD/ADHD because we live in the tangent of our own creations, to the exclusion of the input of those around us. Being referred to as annoying, uncaring of the input of others, or persistently insisting on our ways of being, takes a toll on the mental health of the autistic person.

 

How OCD is different from Autism

OCD is an obsessive compulsion to repeat a task, or to be involved with a matter.  It becomes a disorder when the person is unable to withhold from completing the task. The lead-up to the task (checking the stove, locking the door) is rife with a pre-sneeze panic. It must come out. You must sneeze. Involuntary functions are aroused rather than paralyzed. It simply bursts forth like the sneeze that popped after you smelled a bunch of lillies. The person becomes more and more anxious as they repeat the task.  Trying to ignore or stop your obsessions increases your distress and anxiety, and despite efforts to ignore the urges, they keep coming back. This leads to more ritualistic behavior, and the vicious cycle of OCD.

Autistic people operate with a radically different neurological setup. The structural anatomy of autistic brains are nearly indistinguishable from typical brains. However, the neurons fire up and move through pathways that result in a dramatically different worldview. A person with synesthesia is not mentally ill if they hear a number as a color. They are not having hallucinations, but rather, experiencing a multisensory perception to a single stimulus. These perceptions are very exciting for autistic people, and quite pleasing. The autistic person is happier the more they engage in their perseverations. The person who has OCD becomes more anxious as they try to resolve their compulsions.

Engaging in the party in my head is my choice. I maintain the right to speak of the unicorns and the cats dressed in tuxedos. I maintain the right to recite pi until my pet gecko’s stares at me judgingly. You are looking at my happy place as the primary source of annoyance to you. It is not an obsessive compulsion to annoy you. I am simply enjoying the happiness that exists within my personal and private consciousness reality. When I am kind enough to share and hope to bring you into my party, you fail to grasp it. You don’t see the beautiful patterns, the philosophical ponderings, the way the undiscovered colors dazzle my mind. You are struggling, and that is okay. But please don’t put the burden onto me for carrying your challenges.

Generalizing Standards for Autism Sensory Rooms

by

Not all sensory rooms are alike. When autistic people think of sensory rooms, they imagine a room designed for sensory deprivation for calming effects. When designers imagine sensory rooms, they try to cram in as much sensory information to satisfy all assumed criteria. Autistic people have preferences that vary so much, that sensory integration disorder was removed from the DSM-5. The reasoning was that if a there is no way to standardize an assessment for these differences, then there is no way to make a diagnosis, and then treat it.

Autistic people still have these sensory issues, even if the DSM no longer recognizes it. Sensory issues are prevalent in every type of neurodevelopmental disorder, such as ADHD, Angelman syndrome, Fragile X syndrome, Down syndrome, traumatic brain injury (TBI), and Cerebral Palsy. All around the world, schools, retail chains, and airport, are all trying hard to accommodate these sensory issues. The most important thing for these designers to know is that even when they consult with one or two autistic people, they still are probably lacking on specific fundamentals based on a generalized whole.

Sensory “issues” stem from a neurological processing difference. Some autistics have heightened sensory perceptions, where the world is more vivid and noisy than to a neurotypical person. Other autistics have low perceptions, and can seem indifferent to the world around them. Professionals working with autistics must know about sensory variations.

There can be hyper-responsive (sensory seeking), hypo-responsive (avoiding), and rapid cycling between both variations. It’s critical to know that these exist, because otherwise, autistics might find themselves being led to a sensory room with blaring lava lamps and strobe lights in the name of accommodation, and find themselves triggered to the point of subclinical seizures. Yet again, some autistics will find such arrangements delightful, and it may be hard to wrestle them away from these stimuli.

It is imperative that designs should incorporate the actual need of autistics, and not per the idea of the funders of the project. When designs are ill-fitted to the need, we have industrial faux pas where toilet paper rolls are hung inside a shower door, or a 5-point harness is designed for a carseat by someone who has never had to put a child into a vehicle. These lived experiences are essential for avoiding awkward and injurious innovations that are counterintuitive and termed “design fails”.

 

When evaluating a sensory profile of an autistic person, check for the following:

  1. Look at their food choices. Do they prefer crispy-crunchy, or mushy-smooth? Do they prefer their foods to touch, or be strictly separated?
  2. Check their sleeping quarters. Do they like to have a popup tent, pillow fort, and weighted blankets? Do they sleep with their feet exposed, or undressed? Do they have trouble sleeping and toss/turn all night and wake up tired?
  3. Do they cover their ears to shield themselves from all sounds, some sounds, or human language sounds?
  4. Do they enjoy events in large venues, such as concerts? Do they take great effort to avoid gatherings of any kind?
  5. Can their eyes track on a screen when watching a movie or playing a video game? Are they using peripheral vision and muscle memory when writing, typing, or watching a ballgame?

The first is a sensory profile built on olfactory and tactile systems, since the mouth may feel assaulted by food stimuli which are not amenable to its schema. The second is an indication of arousal state, and how the individual prefers to wind down. The third is how the individual interacts with sound—less/silence is enough, or louder is heard better? The fourth is how the multisensory stimuli of sight and sound create a vortex around the person based on the acoustics of an outside space. Much like a room gets warmer when there are more people, the sound and lights will amplify in amplitude toward the autistic in the room. The fifth is how visual information is perceived with the least amount of fragmentation, as the central vision may take on too much information, or in bits, in conflict with a figure-ground extraction from a gestalt.

Once the sensory profile of the individual is identified, a sensory room can be planned to serve a particular set of needs. No single room should be organized to meet all types of sensory profiles, and rather, areas should be cordoned off for different needs. There may be a dark roo, with sound-reduction panels, and weighted items to use while adjusting the glow and color of the recessed lighting through remote control. There may be a lava lamp garden with customizable colors, since neon colors may cause a strobe effect on those who are sensitive to fluorescent rays. There might be a tactile room with nubby textured toys, stimmy balls, plastic grass mats, and rock or string collections. There should certainly be a room with acoustic music instruments, and an invitation to interact with others using this artistic medium. Start speaking to #actuallyautistic people, so your efforts don’t get lost in translation. All humans have a right to sensory safety and to prevent sensory violations.

 

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

by

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 Futures, 72(7-8), 390-405. [PDF]

Stop Banning Autistic Stimming Because of Fidget Spinners

by

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.

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

Teaching piano student to stim as overwhelm prevention

by

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

by

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.