The highly sensitive family, how to thive in a toxic world

Sabbatical Report, Alexandra Bal

It has been a while since I have written anything in this blog. This is in big part due to the fact that I have been on sabbatical, withdrawing from daily activities to focus on my research.

Ahead of the sabbatical, I conducted the first round of interviews for the SHHRC project. Interviewing children between the ages of 4 and 8 on their use of media.  This lead to a series of presentations by our graduate students such as Performance and Participation: “Digital Space as Semi-Permeable Membranes” was presented at Internet Research 12.0 in October 2011. It also lead to the writing of one chapter derived from our initial findings, entitled “Mélange of Making: Bringing Children’s Informal Learning Cultures To The Classroom”, in the book DIY Citizenship: critical making and social media, edited Dr. Matt Ratto and Dr. Megan Boler. The book published by MIT press will be out very soon.

In my private life, my children were experiencing behavioral and emotional issues related to heightened sensory processing capacities and I found very little help from the medical community. I turned to the internet and sensory processing communities for answers. As a result I began this blog to collect material I found on the web.

What began as a literature review on media and autism morphed into research on sensory processing and highly sensitive people (HSP). The results of this work has initiated the writing of a book. This book is difficult for me to explain as it is both influenced by previous work with Dr. Jason Nolan on children and their use of media and by my own interest in sensory processing and HSP which emerged out of issues my family has been facing.

What I found out resulted in a journey into the world of sensory life that simultaneously brought me back to my first love, image making and to begin writing on the subject from the perspective of a parent. I undertook a new series of computer graphics images, focuses on the theme of sensorial perceptions, which can be seen at: http://imagearts.ryerson.ca/abal.  I also began writing a book, “the highly family, how to thrive in a toxic world”.

The highly sensitive family: how to thrive in a toxic world

My sabbatical was to focus on literature review on media and autism, but my focus shifted towards sensory processing issues instead of autism. Sensory processing disorder refers to different responses than normal to stimuli from the environment. It can affect people in only one sense–for example, just touch or just sight or movement–or affect multiple senses. Sensory processing disorder is key not only to autism but as I found out ADHD, giftedness and many learning disabilities.  Children with different sensory processing are often misdiagnosed as having ADHD or autism since their sensory overload or under-load can translate into behaviors that are difficult to manage in a variety of social settings such as the classroom, home or new environments. Children affected by sensory processing issues behave differently because they are experiencing sensory and social stress.

While few of us have heard of this phenomenon, it is wide spread. In the article “Breakthrough Study Reveals Biological Basis for Sensory Processing Disorders in Kids”, it is explained that:

“ Sensory processing disorders are more prevalent in children than autism and as common as attention deficit hyperactivity disorder, yet the condition receives far less attention partly because it’s never been recognized as a distinct disease.

Children with SPD struggle with how to process stimulation, which can cause a wide range of symptoms including hypersensitivity to sound, sight and touch, poor fine motor skills and easy distractibility. Some SPD children cannot tolerate the sound of a vacuum, while others can’t hold a pencil or struggle with social interaction. Furthermore, a sound that one day is an irritant can the next day be sought out.  The disease can be baffling for parents and has been a source of much controversy for clinicians, according to the researchers.”[i]

Sensory processing differences are very real, and as many other cultures have understood for millennia, represent a distinct form of intelligence.  It is important to understand that the differences in perceptions of these children do not stop at physical senses, they also understanding social life differently as they tend to possess heightened empathy.

But the world of children with heightened sensory processing abilities is difficult to deal with as we live in a time of great doubt in regards to SPD. First, the medical community denies its existence, researchers such as those from the University of California San Francisco, have recently confirmed that it is real but also began to pin point its affect on the brain (UCSF, 2013). In this process, they have established that it affects a different part of the brain than Autism and ADHD.

As MD Elysa Marco explains, most people don’t know how to support these kids because they don’t fall into a traditional clinical medical group:

“Sometimes they are called the ‘out of sync’ kids. Their language is good, but they seem to have trouble with just about everything else, especially emotional regulation and distraction. In the real world, they’re just less able to process information efficiently, and they get left out and bullied”.[ii]

 

Another difficulty is that there is always a lot of confusion surrounding sensory processing, and, as is explained in the article “Decoding Sensory Processing Disorder”, many different diagnoses fall under the phrase sensory processing disorder. Among them are three specific subcategories:

“Sensory Over-responsivity: In this category, children respond very strongly to minimal stimuli. They often avoid touching or being touched. They often react strongly to certain textures of clothing or food. In addition, they will get overexcited with too much to look at or with strong smells or sound.

Sensory Under-responsivity: In contrast to children who are over-responsive, children with this form of SPD often pay little or no attention to the sensory experiences around them. They are unaware of messy hands, face, or clothes. They will also fail to notice how things feel and will often drop them. When presented with new stimuli, they will ignore them – even if a food is extra spicy or a noise is particularly loud.

Sensory Seeking: Children who are sensory seeking are exactly that – always looking for new sensations. They dump toys and rummage purposelessly, chew on shirt cuffs, and rub against walls. They welcome loud noises, seek strong odors, and prefer spicy or hot foods.

While children who fall into the categories described above exhibit widely (and sometimes opposite characteristics), they are all classified as possessing a sensory processing disorder. It’s often confusing!”[iii]

 

These characteristics can correspond to behaviors often associated with Autism and/or ADHD, yet, if the sensory processing issues are addressed and the children learn to be aware of their differences, they can learn to self-regulate and stop behaving in peculiar ways.

Unfortunately, the confusion of health professionals regarding diagnosis leaves parents and educators at a loss in regards to how best help these children.   Many people understand different sensory processing capacities as a disease and/or as something that needs to be cured. As Dr. Gabor Maté  explain in his book When the Body Says No: The Cost of Hidden Stress, the use of drugs and often counterproductive learning strategies often can lead to more damage to these children who cannot properly understand the world without the use of their heightened senses. Such an approach often leads to a gradual decline in mental health of these children who eventually become dysfunctionning adults, unable to deal properly with their sensory reality who turn to unhealthy coping mechanism such as addictions in an attempt to cope and reduce the constant sensorial stress they are experiencing[iv].

As the parent of two children with special needs, one leaning towards autism and the second toward ADHD, I was very aware of the real challenges posed by sensory processing issues and it became clear that this is an area of investigation that needs to be addressed. It is clear to me that we need to develop sensory processing literacy  for both children and adults, and that digital media can help.

A second element began to influence my research. I became interested in the “ highly sensitive person” personality trait.  A highly sensitive person (HSP) is a person having the innate trait of high sensory processing sensitivity (or innate sensitiveness as Carl Jung originally coined it[v],[vi]). According to Elaine N. Aron and other researchers, highly sensitive people, who comprise about a fifth of the population, may process sensory data much more deeply and thoroughly due to a biological difference in their nervous systems.[vii] This is a specific trait, with key consequences for how we view people, that in the past has often been confused with innate shyness, social anxiety problems, inhibitedness, social phobia and innate fearfulness,[viii],[ix] and introversion.[x]

The discovery of this highly sensitive trait helped me to understand that heightened sensory processing is not necessarily a disorder but for some a heightened form of sensorial intelligence that allows them to perceive the world in much more nuanced details than most.  Such an ability is often seen in artists, innovators, scientists and artists. It became clear to me that this trait, is a strength in our adult world, but for some reason, in modern society, children with these abilities are becoming damaged.

Seeing sensory processing issues from this lens made me realize that sensory health depends on children and/or adults becoming self-aware of these specificities and to be able to self-regulate their own reaction without fear or feeling somehow inadequate. I began to understand that in order to help sensory sensitive children become healthy active participants in the world, we needed to guide them in a process of sensorial self-discovery.

The differences between highly sensitive people and the rest of the population is much more than skin deep. The deep sensing that HSP experience means that they define their senses of self differently and as a consequence think differently.

When we ignore these gifts and consider them as part of a disease, we are condemning sensory gifted people to a life of mental illness that can be avoided. In the book “when the body says no. The hidden cost of stress”, Dr. Gabor Maté makes the case for helping children through empathy and nurturing parenting:

“ In rhesus monkeys about 20% are “high reactors”,  who are more likely than others to exhibit depressive behaviours on separation from mother, along with greater and longer activation of the HPA axis, exaggerated sympathetic nervous system arousal and deeper suppression of immune activity. In human terms, we might call the high reactors temperamentally hypersensitive. Not unlike their human counter parts, they tend to end up at the bottom of the social hierarchy. Their offspring resemble them in behaviors, reactivity and social status.

Research has revealed that the “constitutional high-reactors destiny can be interrupted by changing the environment. “ The positive changes are passed on to future generations: “ When reared with especially nurturing mothers, such animals show no signs of the usual behavioral disorder. Instead they show signs of precocious behavioral development and rose to the top of the hierarchy as adults.”[xi]
Part of the nurturing of children’s senses is to become aware of what can be toxic to them. When I began this work, it was very difficult to find relevant information and help when dealing with how to ease symptoms caused by high level of toxicity, how to help a child (or adult) heal with traditional medicine is not an option, understanding the hidden codes of sensory languages, helping children decode their moods as tied to food sensitivities and reaction as much as to other people’s feelings, helping them to filter the negative energies and absorb the positives, learning to “sense” and use it to their advantage instead of being overwhelmed by it.

Unfortunately information on the subject was limited to a few books so I began to search the Internet for all material that seemed related to sensory processing and HSP health.

As a parent who has struggled to find ways to help my own children, I knew that there are ways to help these children thrive, but that it requires us to understand and address these children’s sensorial needs as positive and fundamental traits that are part of a healthy life. Unfortunately, it meant to go against the mainstream ideas of health, given that the senses are not recognized as essential to health in our western disembodied culture that worships the mind at the expenses of the senses in how we perceive the world.  Key to helping children with sensory processing issues is also understanding media as a way for them to learn about social life without sensory overload, again going against a majority of literature on the use of media with children which is often negative.

I began to create an auto-ethnographic framework around sensory processing and the potential use of digital media in sensory processing literacy as well as an alternate learning tool for children who cannot cope with the classroom and have problems with self-regulation.

Having two children with sensory processing issue, I took my family to a small fishing village in Nicaragua, to change their sensory settings and to observe the impact on their life.

The result of this work is becoming a book entitled: The highly sensitive family: How to thrive in a toxic world.  It is aimed to be a theory hybrid which examines cultural roots of our disembodied culture and some of its consequences on our health and explores educational solutions to re-introduce sensory literacy in our culture. But it is also aimed at parents who are struggling to find answers for their children’s sensorial problems. Most of the book is in draft form, chapters 8 to 10 needing to be finished.

Book Structure

This book represents a continuation of my research on digital natives but now focused on sensory health. It is based on the premise that we live in a new media society. New media represents practices where individuals appropriate standards technologies to their own multiple social/cultural domains. New media began as an approach to media making based on problem solving, tinkering, experimenting and thinking on the margins of the norms, which has now infiltrated many of out social and cultural processes. I hypothesize that we are entering new media society where the public uses social media and soon 3d printing to learn and experiment with alternate forms of social and cultural lives. A second hypothesis is that these changes affect all areas of life, and that we are entering an era of DIY health and health hackers. Both the body and health are now new media fields of enquiry and redefinition and slowly, sensory health is becoming a new media.

The book is structured around three distinct parts.

 

Part 1: 21^st century new media society: The senses as new media

The first part of this book, retraces the historical and conceptual framework of sensorial health in our society. In this section we retrace the body, space and nature have been colonized via many of our cultural meta-narratives. This in order to understand and outline some of the fundamental problems facing people with heightened sensory perception and why their capacities have been understood as illnesses instead of strengths.  As seen in the field of disabilities, via informal networks the dominant culture of disembodied selves is being redefined by the public. Activists communities are reclaiming their uniqueness and beginning to distribute messages of hope by reversing the negative into positive approaches to their needs.  Children are growing up with these new narratives as well as with direct access to scientifical research  that can be used to redefine health.

 

Chapter 1: A Sensorial Being Struggling in a Disembodied Culture  

In this chapter, we explore how the senses have been eliminated from western thoughts and culture. Retracing where within our culture the separation between man and nature began. We then examine how the disembodied culture of the last few millennia is being redefined by the public within informal networks. We are entering a new media society within which the public is redefining our notion of selves and identities.

 

Chapter 2: The Aesthetics of Space
In this second chapter, we explore how from a sensorial perspective, the body and our sense of self is grounded in and not separate from the environment and space. This is why the impact of western cultural colonization on the Body and space has been an oppressive force on HSP. A disembodied self and the elimination of the senses and space from our thinking has rendered the sensory gifted mute and their way of “being” marginalized.

 Chapter 3: Sensory abilities are not disabilities
In this chapter we focus on how our disembodied thinking is turning sensory giftedness into a disability, understanding heightened sensory processing as a dysfunction. This is having dramatic consequences on our children who often get diagnosed with pathologies simply because the medical and educational professions do not recognize that children behavioral issues can signal overloaded or under-loaded senses.

Part 2: Sensorial Health

The second part focuses on environmental, social and cultural issues that influence our senses and also explores alternate health models that include the senses in their definition of health. This section ends with a redefinition of health that includes space and social life as a fundamental element to well-being.

Chapter 4 Making Sense of a Toxic World

When we consider the senses as central to health, it becomes evident that our environment can be toxic, in Chapter 4 we examine what contributes to toxicity of  the senses.
Chapter 5: In Search of a Sensory Health Model

Given how little knowledge there seems to be about sensorial health in the western world, I began to explore whether sensory based health models exist in other cultures, subject of chapter 5.

Chapter 6: A HSC Health Fluid Framework

Indeed, in Asia, Africa and aboriginal north America all include in their cultures a DIY, location and individual based health model much ore apt to understand and foster difference instead of oppressing it. Core to these models is self-awareness, self-regulation and the inclusion of social, economic and emotional as well as sensory and physical aspects of the person as vital to their well-being. Chapter 6 explores how these models can be helpful to a health model that includes sensory processing, thus the need to develop sensory literacy in children and adults.

Chapter 7: Highly Sensitive People Health: A spiral of communication systems
Chapter 7 explores how within DIY informal networks people are finding solutions to sensory issues often by reintroducing traditional health methods to their lives and redefining sensory health.

The prevailing idea of the last few centuries has been to let the outside world shape who we are. The rise in ADHD, autism and other child related mental “disorders” represents a dangerous testimony to the long-term damage this logic is having on some of our children who are helpless in front of this toxic world we have participated in perpetuating.

Another approach, which is growing in popularity, is to help children grow from the inside out. To let their being slowly adjust to the world they are in, accepting that their development will take time and does not necessarily follow a standard path. This means redefining many ways of looking at parenting, care giving, social life and schooling to insure long-term self-esteem and self-reliance.

Part 3: alternative sensory diet

This section examines ways to help children cope with sensory over or under-load by using not just traditional health solutions but also incorporating 21^st century technologies.

Sensory over or underload produces behaviors that seen out of synch with the rest of society. These children are simply coping with extra or painful energy generated by their senses that must exist their bodies. This energy is the life force that Rousseau considered need to be tamed. Yet, in this context, intense emotions and reactions are an important part of deeper understanding of our humanity. They are the source of extraordinary performances and insights, those of our most brilliant artists, inventors, thinkers and spiritual leaders.

While westerners look upon intensity and its behaviors as impolite and a sign of disrespect, denying it just pushes inward this natural intensity and eventually it will damage a person. The key is not to eliminate this intensity but to learn to work with it. To be aware of what we are trying to say to ourselves through our intense reactions. The intensity is a message that we cannot ignore what is going on and also a sign of strength and powerful energy.

Chapter 8: 21^st Century Sensory Based Life Diet

Like many other parents, over the years I have come up with my own protocols to deal with my children’s sensory health crisis. Children need to learn their own symptoms and know what they mean as doctors always assume that something other then what affects them is happening.  There are many short-term strategies to deal with immediate crisis. But once the crisis is over, it is important to long-term sustainable strategies and introduce slow easy changes that can be incorporated gently in our routines. This is a slow process, including a lot of experimentation, a willingness to observe and listen to children and ourselves, and an understanding for each child’s needs.
1- Chapter 9: A Media Diet for the Senses

This chapter examines the role media can play in children’s health culture and literacies. Media are now essential components of modern lives, yet many researchers and the public tend to focus on the negative impact they have on children and understand media as something children should be steered away from.  And indeed, in many instances that should be the case.

Yet, a growing number of health researchers are discussing how gaming and other media based therapies can help with physical activity, developing healthier behaviors and coping with chronic illnesses. This chapter questions whether gaming and other digital media activities can have positive therapeutic potential for sensory processing issues.

Part 4: sensory literacy

The final section of the book, explores how heightened sensory processing abilities translate into an alternate form of intelligence that a different approach to learning.

Chapter 10: HSP A Broad Attention Learner in a Narrow Focused World

This chapter explores how heighted sensory processing represents a unique form of intelligence, sometime referred to as ecological thinking, a form of holistic and environmental intelligence that corresponds to a different approach to life and learning based on response to very intense sensory and emotional reaction to space.

Chapter 11: HSC and informal Learning

In this chapter, we examine why DIY sensory literacy must be developed via informal learning. Many writers have explored how success doesn’t come from tutors and well-rounded extra-curriculars, but starts at home. Feeling connected is the foundation of a child’s intelligence.

Given how unique each individuals’ heightened sensory processing abilities are, fostering these gifts requires a different approach to learning. It is not something that can be taught in school and often, the act of evaluation will eliminate in children the desire for self-determination.

As we will see, self-regulation and self-awareness are essential to developing sensory well being, and as such, it is important to develop a DIY informal forms of sensory pedagogy that fosters in children the construction of strategies towards self-determination and autonomous, self-regulated health Practices.

Conclusion: Sensory health literacy informal framework

To conclude, we will examine how virtual informal learning can be used to create informal DIY sensory health community centers.

 

As each chapter is finalized, I will post it to this blog. Stay tuned…..

 

 

 

 

Footnotes: