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Sensory in Autism Training Untangling the Senses for Community Diversity and Acceptance

A Spectrum Idea Lab White Paper


Executive Summary Sensory experiences are often said to be different for many on the autism spectrum. They can be more intense, under-whelming or even painful.

Table of Contents

This area of autism is misunderstood and overlooked by many, but leading researchers and advocates are calling for better understanding of sensory as it relates to autism.

2 Executive Summary 2 The Misunderstood Side of Autism 3 The Challenges of Teaching Sensory Awareness 5 Community Initiatives to Become Autism-Friendly 6 Autism Discovery Tool: A Sensory Awareness App 8 Scaling Sensory Awareness: A Look Ahead 9 Summary 9 About Spectrum Idea Lab 10 Sources

Businesses, organizations and schools are starting to better accommodate people on the autism spectrum, but many face challenges finding the right solutions. Sensory awareness training can be costly to implement, difficult to access due to geographic location or may be taught ineffectively. But technology is paving the way for more accessible, scalable and cost-effective methods to effectively share diversity, foster empathy and promote acceptance in communities globally.

The Misunderstood Side of Autism In 1950, Eustacia Cutler’s daughter was diagnosed as autistic. Guided by her heart and her instincts in a time when little was known about autism, she was ahead of her time in navigating the scarce autism landscape. She empowered her daughter to persevere, and persevere she did. Ms. Cutler’s daughter is Dr. Temple Grandin, a world-renowned autism advocate, a revolutionary force in the cattle industry and one of Time Magazine’s 100 Most Influential People for 2010. Many marvel at Ms. Cutler’s fight and the perseverance it took to raise her daughter during the 1950s, when little scientific research about autism was available and


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misunderstanding and stigma about the disorder prevailed. Parents today still face many of those same hurdles, and one of the biggest is the misunderstood and often undetected sensory difficulties that many on the autism spectrum experience.

While sensory issues are now being acknowledged more by professionals, many intervention methods and training resources still address only the autism-based “triad” symptoms. Focusing solely on the impairments used for diagnosis does not allow for the understanding of why these symptoms are being displayed or how the person with autism is experiencing the world. Bogdashina points out “One of the difficulties in interpreting … behaviour caused by sensory processing differences is our own “non-autistic” sensory function. We have to train ourselves to perceive and understand the world from the individual’s perspective.”2 She brings to light the importance of putting oneself in the shoes of another person before being fully able to understand and support that person.

It is frequently reported by autistic individuals that their sensory processing issues are as, or more, impactful on daily functioning than the “triad” of autistic impairments used to diagnose autism (communication, social interaction, and restrictive/ repetitive behaviours, interests and activities). They often learn to use compensatory methods of coping that can be interpreted as “meaningless” (i.e., self-injury, rigidity, aggression, tantrums, withdrawal) or obsessions. But as prominent autism researcher Dr. Olga Bogdashina explains: “What has not been taken into account by the experts in the field … is the opinion of the ‘native experts’ – autistic individuals themselves. Despite the fact that many people with autism have tried to communicate their views and insights, these attempts have mostly passed without much professional notice… .”1

She goes on to cite “We call on more research to be done on sensory processing in autism to improve our understanding and to actually be able to help individuals with autism correctly.”3

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The Challenges of Teaching Sensory Awareness The biggest challenge of addressing sensory issues in autism is that every person is unique in their experiences. It is impossible to provide a single strategy that would accommodate every person on the spectrum. Additionally, strategies that once worked for an individual will change from day-to-day, as well as over time.

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Compounding these issues are the diverse and often conflicting range of theoretical perspectives attempting to explain the sensory differences seen in autism. Recent research has identified a lack of consistency amongst fields of study, researchers, interventions, and assessment tools, which creates an obvious challenge when faced with trying to make sense of it all.

The current ability to acquire a basic understanding of autism’s sensory side is a complex process within a fragmented, underdeveloped market of solutions. These obstacles leave parents, educators, business owners and people on the autism spectrum in a difficult position trying to learn, understand, or educate others about autism’s sensory issues and its effect on daily functioning. Also, effective, low-cost sensory awareness training is often difficult to access, as it often involves in-person facilitated sessions using a form of simulation-based exercises (such as being blindfolded and asked to perform a task, or wearing earplugs and being asked to follow verbal instructions). Research indicates that most educators who employ simulation-based awareness training do not question the effectiveness of using disability simulations; rather, they are focused on ensuring the participants have “fun” in their learning about disability.4 However, it has been reported that when focused solely on the problems and difficulties encountered by a disability, simulation exercises can provide false and misleading information and help from negative attitudes towards people with disabilities.5 Many of the new insights White Paper | 4

acquired through this type of simulation training can include displeasure with self, embarrassment, frustration, and reliance on others.6 When conducted properly, well designed simulations can successfully improve knowledge, and encourage positive attitudes and behaviour toward persons with disabilities.7 By focusing on the positive experiences as well, simulations can be used as an opportunity to share information, to help people understand the stigmatization of people with disabilities rather than just trying to understand the disability itself. Successful examples of simulation-based training include computer-based simulations for developing surgical techniques and airplane pilots who train using simulator machines before attempting maneuvers in the sky. Research shows that by including several different learning components into awareness training, (i.e., social interaction with someone on the spectrum, additional reading material, or watching films or documentaries), perspectives can be changed to increase empathy, self-awareness, and tolerance. Furthermore, appropriate use of simulations can help demonstrate the importance of the environment for each individual’s sensory differences, showing others that empathy and appropriate accommodations can enable and empower individuals on the spectrum. Whether delivered face-to-face or via a computer, simulations can be part of an engaging learning strategy within academic, organizational and business settings. The importance of including clinicians, educators,

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and children with disabilities in the development of disability awareness programs has also been raised, helping eliminate some of the negative aspects of simulation-based training.8

Community Initiatives to Become AutismFriendly A 2014 National Health Statistics Report estimates that over 2% of the childhood population are on the autism spectrum, with approximately 1 in 45 U.S. children said to be diagnosed9, and these staggering numbers are only expected to grow. But so is awareness, partly thanks to initiatives such as World Autism Awareness Day, designated by the United Nations in 2007 to help bring organizations together all over the world to help advance research, interventions, and awareness for autism through unique fundraising and awarenessraising events. Additionally, countries all over the world have started their own initiatives to help promote global autism awareness. These campaigns have helped spread awareness and acceptance of autism throughout the world, which is now even seeping into pop culture. Newsy, an online news network, reports various TV shows and celebrities are now helping to destigmatize autism10, including Sesame Street, NBC’s Parenthood and CBS’s The Big Bang Theory. Another encouraging trend is the “autismfriendly city”, where communities are coming together to help businesses, organizations,

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schools, and events become more accommodating to the needs of the autism community. Being autism-friendly generally entails accommodating sensory, communication, and social needs, as well as training staff to be aware of a diversity of needs and know how to offer assistance and support. Today, there are a host of cities and communities worldwide who have vowed to become sensory-friendly or autism-friendly, including Denver, Colorado and Tampa, Florida in the United States, Liverpool and Leominster in the United Kingdom, Aberdeen, Scotland, and Laval, Quebec in Canada.

Not only are whole cities striving to become autism-friendly, but smaller efforts are sprouting up throughout communities worldwide, offering sensory-friendly events, movies, performances, services, and venues. Dublin City University in Ireland has become the first autism-friendly campus in Europe, while Southside Beach in South Carolina has termed itself an autism-friendly tourist destination, ensuring that families can enjoy

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vacations with events specifically designed for people on the spectrum in a nonjudgmental environment. Companies worldwide are also starting to engage in autism initiatives to further advance the inclusion and acceptance of autistic individuals. Many large movie theatre chains, including AMC and Cineplex, offer sensory-friendly movies where lights are raised a bit, sound is lowered, families can bring their own snacks, and moving around is encouraged. Some airports are being designated autism-friendly, such as UK’s London Gatwick Airport, while other airports offer practice runs through the Wings for Autism program which allows families to go through the process of check-in, boarding, and even a flight simulation. In 2014, Royal Caribbean was certified as an Autism-Friendly Cruise Line by the Autism on the Seas Foundation, the first of the major cruise lines. In addition to autism awareness training for staff, they include a toy-lending program, sensory-friendly activities and movies, expedited check-in, boarding, and departure, dietary accommodations, and a cruising social story. And some Wyndham hotels are starting to offer “autism-friendly toolboxes” to guests checking in, in addition to providing staff training. With a proliferation of localized programs, community initiatives, and companies working towards creating sensory-friendly and autism-friendly community venues, events, and environments, there is a wide landscape to navigate in accessing the right tools to help communities become more sensory aware. But challenges arise when

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communities — often faced with limited budgets — are bound to using local resources which may be cost prohibitive, may not adequately address sensory, or may not offer an effective means of teaching it.

In every business, school, and community venue touched by autism, there need to be autistic-driven, practical tools that transcend these barriers to facilitate an easier conversation about autism, and more specifically, the impact of sensory issues.

Autism Discovery Tool: A Sensory Awareness App One such tool is the Autism Discovery Tool: Sensory From Within, an app created by Spectrum Idea Lab to help effectively teach sensory awareness. With the sole purpose of automating the sharing and learning of how people with autism experience the world from a sensory perspective, this first-of-its-kind iOS app blends many voices of autism together, delivering an immersive, play-based exploration of the sensory side to autism.

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The app’s main objectives are to promote: • self-discovery and learning in individuals on the autism spectrum

amount of research, expert opinion (including from those on the spectrum), experience and insight has been aggregated and organized into a concise learning tool.

• increased awareness and empathy in others (families, schools, businesses, etc.), and • easier communication between individuals on the spectrum and others Built specifically for use with the iPad’s rich interactive features, the Autism Discovery Tool app uses first-person simulation to create an ideal learning environment for sensory awareness training, essentially replacing words to communicate a volume of understanding with few learning barriers. It employs a simulation-based learning style that bridges the gap between passive learning and direct personal experience, a concept discussed in James Herbert’s research on simulating disability training.11

By focusing not only on the challenges of sensory differences, but highlighting the positive experiences as well, the Autism Discovery Tool uniquely presents a large spectrum of sensory differences that are intended to help stimulate empathy, selfawareness, tolerance, and changed perspectives. Through its open-ended, exploratory game design, a powerful learning tool has been created, embedded with layers of knowledge so that many ages and abilities can successfully participate and learn. By consolidating knowledge into a unique “sensory experience matrix”, an extensive White Paper | 7

As Dr. Bogdashina states: “I think, the first step in establishing bridges between the ‘worlds’ is to learn (imagine) what it is like to experience the reality of those with whom we live/work; only then we’ll be able to introduce communication tools with shared meaning and show real empathy and appreciation of their abilities while providing means to cope with weaknesses.”12 This app does just that: it provides effective sensory awareness training through engaging simulation-based gaming for businesses, organizations, and schools to easily incorporate into their initiatives to become autism-friendly. Blending Dr. Bogdashina’s SensoryPerspective Theory with others’ including Dr. Jean Ayre’s Sensory Integration Theory and Dr. Winnie Dunn’s own model of sensory processing, this app is based on a framework of principles that focus on the actual experiences of those on the autism spectrum. Spectrum Idea Lab


Broken down into the seven senses (vision, hearing, touch, smell, taste, balance and body position), sensory differences can be explored through five buttons at the bottom of each scene (typical, over-sensitive, undersensitive, distorted, and enhanced). This matrix framework allows structure and simplicity to be applied to an otherwise deep and confusing area of autism.

Additional learning and gaming opportunities can be found through hidden “sensory tools� in each of the seven senses, offering over 65 sensory tips and strategies throughout the entire game. Although the full diversity of sensory experiences and strategies can never be captured in one app alone, the aim is to open the conversation about sensory differences and help establish a few key strategies that will work in times of distress, while encouraging being open to trying new strategies. For minimal cost, people have access to consolidated, research-based and autisticdriven information about a complex topic that often goes misunderstood or overlooked. This easy-to-implement educational app is making it easier for communities to implement comprehensive autism training; incorporating automated immersive sensory simulations allows users to experience

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sensory differences in a safe environment with little risk to themselves or others.

Scaling Sensory Awareness: A Look Ahead The abundance of technology and gadgets emerging on the market today aimed to help teach, train, and connect users with autism paints a bright picture for the changing autism landscape. Augmentative and alternative communication (AAC) devices, facial recognition software, robotics, wearables, computer-aided instruction and intervention and virtual reality all offer exciting prospects for technology’s evolving role in the globalization of autism awareness. Another exciting application of technology that is helping spread knowledge and acceptance about autism is the Autism Village app, created by a father of a child on the spectrum and supported by a successful Kickstarter campaign. This app displays, rates, and reviews autism-friendly spaces in a Yelp or TripAdvisor format, helping people find autism-friendly places while traveling or in their own communities, including playgrounds, restaurants, movie theatres, and medical offices. Moving past barriers to deliver solutions that will make individual lives and communities better, exciting technology is emerging that helps foster understanding and empathy amongst its members.

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Communities are acknowledging that autistic individuals have tremendous potential when given the right tools and conditions. The need to incorporate awareness training into businesses, organizations, and schools has been established for some time now; however, it is only recently that we have begun to see the interweaving of innovative technology with autistic-led research to offer solutions that are both accessible and cost-effective. Decades after Eustacia Cutler paved the way through hard barriers and hurdles, Temple Grandin and so many other influential voices of autism are coming together to collectively empower those on the spectrum, as well as those not on the spectrum, to become more aware of special needs and differences within autism.

About Spectrum Idea Lab Spectrum Idea Lab is a Canadian-based company with a mission to retool learning

Summary

through innovation and

With up to 90% of autistic individuals experiencing sensory differences13, there is a need for technology to help provide knowledge, build empathy and understanding and facilitate easier communication for the sharing of sensory experiences and needs of those on the autism spectrum.

Ictinus Inc., an award-winning

Spectrum Idea Lab has retooled learning in the Autism Discovery Tool, a powerful training tool that highlights the beauty and difficulties found within autism, encouraging users to embrace the diversity of the spectrum and respect each other’s differences and ways of experiencing the world. Effectively delivering simple and accessible education about sensory differences in autism, this lowbarrier, easy-to-implement solution is made for people of all ages, all over the world. Empowering children and adults on the autism spectrum to express themselves and communicate with family and friends about their sensory differences is a novel, yet welcomed approach in the innovation of global autism training. Autistic individuals continue to speak up about the importance of sensory in their lives, research is emerging shedding light that it is an important issue, and now technology is being used to create tools to spread awareness globally, while giving a collective voice to autistic individuals worldwide. 

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technology. In partnership with

software and graphic design lab in Ottawa, the teams collaborate on projects using industry-leading design principles and processes. A group passionate about lifelong learning and the evolution of sharable technology, Spectrum Idea Lab is helping transform the learning experience for homes, schools and communities touched by

For more information, visit www.spectrumidealab.com or go to the iTunes App Store to learn more about the Autism Discovery Tool.

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Sources 1 Bogdashina, O. (2001). A reconstruction of the sensory world of autism. Sheffield: Sheffield Hallam University Press. 2 Bogdashina, O. (2003). Sensory perceptual issues in autism and Asperger Syndrome: Different sensory experiences, different perceptual worlds. London: Jessica Kingsley. 3 Bogdashina O. (2003). Sensory theory in autism makes sense: A brief review of the past and present research. OA Autism, 1(1). Retrieved from http://www.oapublishinglondon.com/article/ 391 4 Burgstahler, S. & Doe, T. (2004). Disability-related simulations: If, when, and how to use them in professional development. Review of Disability Studies, 1(2). Retrieved from http:// www.rds.hawaii.edu/ojs/index.php/journal/article/view/385/1182 5 French, S. (1992). Simulation exercises in disability awareness training: A critique [Abstract]. Disability, Handicap & Society, 7(3). Retrieved from http://www.tandfonline.com/doi/abs/ 10.1080/02674649266780261?journalCode=cdso19 6 Herbert, J. (2000). Simulation as a learning method to facilitate disability awareness. Journal of Experiential Education, 23(1). Retrieved from http://journals.sagepub.com/doi/pdf/ 10.1177/105382590002300102 7 Burgstahler, S. & Doe, T. (2004). Disability-related simulations: If, when, and how to use them in professional development. Review of Disability Studies,1(2). Retrieved from http:// www.rds.hawaii.edu/ojs/index.php/journal/article/view/385/1182 8 Lindsay, S. & Edwards, A. (2013). A systematic review of disability awareness interventions for children and youth [Abstract]. Disability And Rehabilitation, 35(8). Retrieved from http:// www.tandfonline.com/doi/abs/10.3109/09638288.2012.702850?journalCode=idre20 9 Zablotsky, B., Black, L., Maenner, M., et al. (2005). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. National Health Statistics Reports, 87. Retrieved from https://www.cdc.gov/nchs/data/ nhsr/nhsr087.pdf 10 Hammesfahr, L. (2015, October 26). How pop culture is helping destigmatize autism. Newsy. Retrieved from http://www.newsy.com/videos/how-pop-culture-is-helping-destigmatize-autism/ 11 Herbert, J. (2000). Simulation as a learning method to facilitate disability awareness. Journal of Experiential Education, 23(1). Retrieved from http://journals.sagepub.com/doi/pdf/ 10.1177/105382590002300102 12 Bogdashina, O. (2010, July 22). Olga Bogdashina explores autism and the edges of the known world. Jessica Kingsley Publishers Blog. Retrieved from http://www.jkp.com/jkpblog/ 2010/07/olga-bogdashinaexplores-autism-and-the-edges-of-the-known-world/ 13 Leekam, S., Nieto, C., Libby, S. et al. (2007). Describing the sensory abnormalities of children and adults with autism [Abstract]. Journal of Autism and Developmental Disorders, 37(5). Retrieved from http://link.springer.com/article/10.1007/s10803-006-0218-7

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A Spectrum Idea Lab White Paper • 2017 Janie Pearson, MSc.OT, OT Reg. (Ont.) www.spectrumidealab.com White Paper | 11

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