Research Trail Project  1
My Topic: Stimming aka stereotypy

• Self-stimulating behaviors (stimming), usually involves repetitive movements or sounds.
• This hits close to home because I am diagnosed with ADHD and have a variety of mechanisms to control it
• There’s a spectrum of stimming, everyone does it but it mostly goes unnoticed. Only when it’s disruptive should it be treated
• People with stimulation processing disorder exhibit stimming behaviors
• Managing the sensory and emotional environment while increasing the amount of daily exercise can increase the personal comfort levels of the person which may reduce the amount of time spent stimming. Things such as puzzles, fidget spinners, stress, and fidget toys can also be used to help instill safe stimming habits

• Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner.
• Psychiatrists call it stereotypy or self-stimulatory behavior
• For hyposensitive (under-sensitive) people, it may provide needed nervous system arousal, releasing beta-endorphins. For hypersensitive people, it may provide a "norming" effect, allowing the person to control a specific sense, and is thus a soothing behavior.
• It can also serve as a way to communicate, or to calm down.
• Stimming is a natural behavior that can improve emotional regulation and prevent meltdowns in stressful situations.
• Celebration of stimming is a common aspect of neurodiversity, acceptance, and autistic culture. Many argue that stimming is not only an important coping mechanism but an action as natural and beautiful as smiling or laughing.
• Stimming plays a noticeable role in autistic art with many Autistic artists drawing illustrations of diverse and often happy stimming people.
• Some therapists, especially in ABA, believe that stimming should be suppressed, so that autistic children will appear more normal. They use the words quiet hands to train autistic children not to stim. Frequently this involves physically restraining the child until the child complies automatically. This is considered abusive

Technical Materiality Examples:

Temple Grandin’s The Squeeze Machine


Research Supporting the Squeeze Machine: https://www.grandin.com/inc/squeeze.html

• Deep pressure is calming and relaxing, while light touch alerts the nervous system
• Research on autistic children indicates that they prefer proximal sensory stimulation such as touching, tasting, and smelling to distal sensory stimulation of hearing and seeing
• Autistic children will often seek out deep pressure sensations.
• The squeeze machine device developed by the author consists of two padded side boards which are hinged at the bottom to form a V shape. The user steps into the machine and lies down on the inside in the Vshaped crevicelike space. The inside surfaces of the device are completely lined with thick foam rubber. Deep touch pressure stimulation is applied along both sides of the person's body, with lateral pressure pushing inward onto the body (Fig. 1). The V-shaped space supports the body fully from head to toe, so that the users can completely relax. The contoured padding provides an even pressure across the entire lateral aspects of the body without generating specific pressure points. The foam-padded head rest and padded neck opening are covered with soft fake fur. When the neck opening closes around the neck, it enhances the feeling of being surrounded and contained by the embrace of the deep touch pressure squeeze.

The Ability Project:

This is an interdisciplinary research space dedicated to the intersection between disability and technology, with an aim to foster collaboration among individuals with disabilities, community organizations, and NYU students and faculty. A variety of students and professionals—engineers, designers, educators, speech and occupational therapists, and individuals with disabilities—work together to create opportunities for teaching, learning, and research. Students across three of NYU’s schools comprise the Ability Project whose majors range from occupational therapy and integrated digital media to interactive telecommunications. Project’s fundamental principles is that technology serves people best when they participate in its design. Participatory research ensures access to the critical knowledge of those living with disabilities while also offering opportunities for those without disabilities to better understand what life is like for their collaborators. Collaboration, rather than problem solving in silos, produces more creative results.

The Ability Project partnered with AT&T for ConnectAbility Challenge, a three-month technology challenge designed to spur innovation for people with physical, social, emotional, and cognitive disabilities. Here are some of the winners: 

• The Kinesic Mouse by Xcessity is an assistive technology based on the Microsoft Kinect for Windows™ 3D sensor. This software enables severely disabled people to access a computer completely hands–free. Head movements and facial expressions are used to control the mouse cursor and the mouse buttons.
  

• LOLA a funny digital tool that sends the user reminders to train your brain with social and daily living skills. The concept for the app was developed by a kid (and his father) who is a student with Aspergers and is part of the Tech Kids Unlimited community. It is a digital tool that helps users train their brains, by using humor and personal challenges to strengthen their social and daily living skills. It utlizes push notifications to remind kids of the challenges they have set. It encourages more independence and personal space from caretakers.
• Drumpants (Taps) gives a voice to people who have limited mobility or difficulty speaking, including those with ALS, Cerebral Palsy or brain injuries. The user can simply tap wearable Bluetooth triggers to speak customizable phrases through an app on their phone. It could also be used as a hands-free phone interface: controlling lights & door locks, screen readers, and other apps like music players and the camera.
  
  

Tech Kids Unlimited:

The mission of TKU is to train the techies of tomorrow to get them gainfully employed in the field of technology. Students learn website creation, app development, video editing, stop motion animation, 3d printing, programming and more. Tech Kids Unlimited is the only technology program in the U.S. whose constituency is solely special needs students ages 7 to 18.

Adaptive Design Association:

The mission is to instigate a revolutionary shift, one where we reject barriers and segregation and choose instead to imagine and build custom adaptations; where we share designs and stories; and where we respond to difference and disability, not with fear or neglect, but with solidarity and love. They envision a world where adaptive design centers exist across the world and all people with a disability have access to assistive devices are are valued by family and society.  

• Children with autism is the correct term
• Jill started as the fundraising director, then she became the executive director
• At REED, there’s an emphasis on decreasing or eliminate stereotypy since it often either interferes with learning, is socially unacceptable in many cases or both
• REED uses something called Applied Behavior Analysis, which means you break everything down into manageable steps, you take data on what a child has learned something, then you analyze whether the child is ready to move on to the next task/ challenge
  • “we use behavior analytic strategies to reduce/eliminate these behaviors which always involved figuring out the function or the “why.” By figuring out why it’s happening, it helps us determine the “how,” as in how to decrease it and replace with something else that is more appropriate.”
  • REED only does things to that’s proven
  • REED wants people to be a part of society
  • REED asks this question in relation to stimming: How can the child be a part of society so it doesn’t get in the way of learning or affect social interactions?
• Of 40 students, about one student returns to their public schools a year.
• “Falling off a cliff” in autism- when they go from a school setting to adulthood. There is often dread regarding this transition
  • Federal law requires states to provide special services for autistic children to prepare them for adulthood but once the child graduates high school, the legal mandate ends
  • There is no federal requirement for providing supportive services in adulthood. Many services for adults with disabilities use different eligibility rules than in special education.
  • Many autistic adults “fall off a cliff” and can’t find the help they need for the rest of their lives
• Stimming is a way for someone to express themselves
• Jill told the story of a girl who wore a yellow bracelet when she came to school. This was her indication that this was her time to work and focus, but when she took it off she has the freedom to stim. This is a common mechanism to reduce stimming
• If you can’t manage stimming, the behaviors interfere with learning.
• If a child learns to manage stimming, REED will allow the child to stim more freely.
• “You can never change a parent’s opinion”- REED often comes against stubborn parents who want a quick fix to stimming
• Pro lo quo to go- customizable communication program. It allows for communication if someone finds it hard to find the words?
• Some children are aware of their stimming. It really depends on the child, some students are able to express themselves, many are not

• People seek ways to limit stimming because of self-injurious behaviors, though usually referring to a violation of social norms as a pretext to stigmatize this harmless behavior
• Autistic individuals have a different perspective: stimming comes from stress coping and pure joy
  • Those with disability are overloaded by the stimulation from their environment and stimming allows them to put space between them and their issues
  • Stimming can even be a social behavior for autistic individuals. It’s not uncommon to see autistics forming “stim circles” proving that they have their own social wavelength that “neurotypicals” don’t have access to
• There’s no reason stimming should carry a social stigma

• Autistic adults argue stimming serves as a useful coping mechanism and self-regulatory mechanisms which acted to create a calming feedback loop
• This piece is the only known survey of autistic adults who share their experiences and perceptions (reasons why they stim, the value of it)
• People stim to modulate inconsistent sensory input and provides familiar self-regulated feedback in response to unpredictable stimuli
• Two major themes were identified from this study: ‘Stimming as a self-regulatory mechanism’ (see Figure 1) and ‘(De) stigmatization of stimming’ (see Figure 2), each comprising several subthemes (themes and subthemes were robust to both interviews and focus groups).
• The results:
  • Many recount that stimming is involuntary and unconscious at the beginning of the behavior.
  • No participant disliked their stims, rather describing it as comfortable or claiming suggesting a self-regulatory behavior
  • “The accounts of our participants suggested that stimming created a feedback loop that regulated excess emotion and was self-perpetuated because of the soothing comfort or control afforded by the behavior.”
  • An overwhelming environment leads produce sensory overload that leads to noisy thoughts which can cause excessive uncontainable emotions
  • Stimming is a way to focus on one thing over which someone has control of, to block or reduce excessive input. It either comes externally (sensory bombardment) or internally (flooding of thoughts)
  • Participants described stimming in response to both positive and negative states but the potency of internal emotion that emerged from both is a constituent pattern with stimming calming a state of hyperarousal
    • ‘[s]timming is just a release of any high emotion, so really anxious, really agitated, really happy, really excited, just any high emotion, that’s when I stim’. Stimming appeared to function to calm.
  • Many report that certain stims can correspond to a different emotion.
  • One participant said she intentionally stims more because it helps
  • Many participants reported negative attention and feeling marginalized.
    • Many attempts to suppress their stims in public and try to stim while alone
    • Many attempts to transmute them into more socially acceptable forms that provide similar feedback like chess or sports
  • social acceptability of stimming was perceived to depend on a number of cultural factors including age, familiarity, and understanding of autism

• A study of hyperactivity in children with ADHD. They wore a device that tracks the rate of activity in association with cognitive control
  • The more intense movement, the better cognitive performance for those with ADHD

• Neurodiversity is “the understanding of neurological variation as a natural form of human diversity, subject to the same societal dynamics as other forms of diversity, such as race, gender, and sexual orientation.”
  • We need to frame those with autism in these terms, which contributes to the adoption of the neurodiversity paradigm where variation in functioning of human brains is regarded as a “natural, healthy, and valuable form of human diversity.”
  • This is in contrast with the “pathology paradigm” which yields to the “there’s something wrong with you” mindset
• This piece places stimming as a manifestation of autistic neurodiversity rather than as a symptom
• Artism Music Project-  has been conceptualized with the intent of taking applied ethnomusicological work with Autistic people in a new direction. It is a band of children with autism who go out in public and play concerts, and promote autism acceptance by giving people an opportunity to see kids who are on the spectrum not as disabled individuals or tragic figures, but rather as the caring, creative, socially engaged, resourceful, and fun-loving people they are.
  • Artism is about music and community and ability, not therapy and isolation and disability. It is about letting people be who they are, not trying to measure their aptitudes, and change them in ways that will make them more “normal” or “acceptable” in the eyes of others.
  • It’s an experiment in forming a band that celebrates neurodiversity
• Stimming is presented in Bagatell’s work as a valuable mode of self-expression, a powerful vehicle for deep and meaningful communication, and a bridge to forming friendships and establishing communities.
  • “interactive stimming” is a key dimension of “autistic socializing”

• Interactive stimming- "a kind of spontaneous sharing of pleasure in fixations and stimming.”
  • According to interviews, autistic individuals don’t have to socialize to feel a bond. They can “share energy to be social.” 

• iStim- app developed to support parents of children with autism spectrum disorders (ASD) in reducing common repetitive vocal and motor behavior (stereotypy)
• Reasons for the app:
  • Stereotypy is perceived is negative by others causing prejudice and reducing positive socialization opportunities
  • Stereotypy is associated with poorer expression of thoughts and speech comprehension, more limited abilities in self-caring, and lower levels of engagement in functional activities
  • Stereotypy may interfere with learning

• Interventions that have received support for reduction of stereotypy:
  • Noncontingent access to preferred stimuli (differential reinforcement)
    • Designed to reduce engagement in problem havior by providing continuous or regular access to preferred items that substitute or compete with targeted behavior
      • Access to visual stimulation to reduce motor stereotypy
      • Music in the background to reduce vocal stereotypy
      • Reduced engagement in vocal stereotypy during television watching by providing edible items for the absence of vocal stereotypy
    • Minimizes interference with ongoing activities but it’s difficult because it requires constant attention form parents who deliver the reinforcer
  • Noncontingent access has the advantage of ease in implementation because it doesn’t require continues attention from a parent
• This app solves the problem of parents not being around enough or families not having access to behavioral treatment bc of limited train professional, high costs, location, etc..
• iStim- app designed to support parents in reducing stereotypy
• iStim conducts baseline assessments then suggesting to parents whether to use noncontingent access or differential reinforcement
• The result was mixed: for some children it reduced stereotypy, for others, it increased functional engagement

• Response-contingent aversive procedures have been used to reduce stimming including electric shock slaps to the hand and physical restraint
• Non-aversive interventions have also been used including differential reinforcement of behavior and differential reinforcement of incompatible behavior
  • These have been generally successful
• Studies show allowing individuals to engage in stereotypy behaviors is reinforcing and procedures in eliminating the sensory feedback provided by the behavior have resulted in dramatic reductions in stereotyped behavior
• This investigation demonstrates stereotypy serves social functions
• The experiments point to the role of negative reinforcement in the maintenance of stereotypy behavior
• Social environments serve to negatively reinforce stereotypy by removing aversive demands contingent on the performance of that behavior

• Its important to measure someone’s raw social engagement, the degree to which they move in synchrony with others
  • This is called interpersonal synchrony and is less prevalent in ASC
  • Interpersonal synchrony measures the dynamics of interaction between people rather than the specific nature of their behaviors. It is more concerned with the temporal coordination and shared rhythm between interactants, rather than how they mirror or imitate, one another
  • In ASD, correlations were found between the ability to synchronize movement with others and sentence production [8]. The same work showed that ASD children are both less able to synchronize socially with others and that their manner of movement when imitating is different.
  • Understanding  interpersonal synchrony is important

• Wearable sensing provides an opportunity to take research on interpersonal synchrony and autism out of the lab and into the wild
  • Body-worn accelerometers can be used to track ASC children as they go about their everyday lives but this comes at the cost of privacy
  • This article, instead, uses wearables to study synchrony in autism during an interactive theatrical performance
    • Theatre can provide a snapshot of real-life with many social situations and interactions built-in
• Flute Theatre works with ASC children helping them learn how to synchronize their and engage socially through a series of theatrical games that make use of Shakespearean language and rhythm
  • Many children, who are severely autistic, learn to perform in front of audiences
  • We don’t know why this is so effective so they use wearables to record movements
• There is also much potential for wearable applications that support and diagnose people with autism [6].
• Google Glass has been explored as a tool to help ASC children with facial expression recognition [26].
• Machine learning methods have been applied to wearable sensor data to automatically recognize stereotypical stimming behavior in autistic participants [2, 28].

• Disproportionate amount of research when it comes to adults with autism
• One reason is it reflects the goal of early treatment and identification in the hopes of improving long-term outcome. Improvements in care for children make it more likely for adults to be independent and self-sufficient
• Vast majority goes to researching genetics to find causes and cures
• Another reason is funding
• After high school adults with ASD have low rates of employment, independent living, and lifelong friendships (see numbers on page 42)
• Graduating high school is seen as a “rite of passage” but for ASD individuals continue to be dependent on their families providing basic needs, financial support, and companionship.
• One of the problems is schools are committed to teaching academic skills but schools should focus more teaching ASD children on how to be a successful employee, friend, and active community member
• Important skills ASD children should learn before adulthood:
• Self-determinationt
• Self-management
• Independence
• Career development

• Children are entitled to a range of educational, health care, and social services. Public schools are required by federal law to provide free and appropriate education to children with special needs
• Adults with ASD are eligible for housing, health care, and employment. Eligibility rather than entitlement is a major difference that requires the guardian to initiate a long process that determines eligibility. There’s no guarantee access to or acceptance in a progrom for services
• Another key difference is the guardian are the decision makers for children but for adults, they can legally make their own decisions
• Health care transition is critical.
• Increasing employment opportunities for adults with ASD can alleviate the financial burden on adults. There is an increase in integrated care that provides both health and employment services

• Those who don’t know adults have autism could easily misinterpreted their actions which could lead to challenges in holding on to jobs
• The new environments, new people and expectations for independence that come with entering adulthood can be tricky for any young person. For someone with impaired abilities to communicate and manage relationships, to solve problems flexibly and to regulate emotions, this period can be harrowing. And the end of adolescence means the end of federally mandated special education services — just when the need for support may be greatest.
• A study of 250 teens found that autism stimming has improved during adolescence but often after leaving high school these behavior progressions often slows or even gets worse