Autism Interview #171 Part 2: Emma Reardon on Sensory Trauma and Validation

Emma Reardon is a wildlife enthusiast and social care professional from the United Kingdom. She is a Director of Autism Well-Being, a not-for-profit organization providing a variety of support and wellbeing services, training and consultancy. Last week, Emma shared her long road to diagnosis as well as some specific sensory challenges personal to her daily experience. In Part Two of this series, she discusses her position paper on Sensory Trauma and the significance of validating sensory challenges.

Using the language “sensory trauma” is a bold but accurate way of describing how many Autistic people perceive the world. In your introductory video to your paper, you explain that people might live in constant fear, constantly vigilant because the world doesn’t appear very safe to them. In your paper, do you address the long-term effects of regular sensory trauma?

Yes, we do. Each of us experiences the world through our senses – those of us who are autistic often find that our sense receptors are working perfectly fine, but our brains process this sensory information differently. There is often too little or too much information to process and/or the sensory info is distorted and/or unfiltered.

It may be helpful to consider the Polyvagal theory of emotion regulation, social connection and fear response, to understand the long-term effects of Sensory Trauma. Like I described in my example of the supermarket last week, an autistic person’s brain may perceive a physical threat from sensory input that activates a survival response in their body – this can result in fight or flight behaviours like shouting, hitting, or running away – or freeze responses like collapse, disconnection and being unable to move. These physical responses can happen throughout the day and in response to sensory stimuli that other people may not even be aware of. This can make the environments that autistic people live in feel unpredictable, unreliable, and unsafe.

From a developmental point of view, when children are forming relationships and attachment with their care givers, they may not be able to feel safe with them – this may or may not have anything to do with the care giver’s intent. Imagine a very loved and wanted autistic baby that finds the sensation of cuddles and being gently rocked to sleep distressing. Their care giver may feel rejected by them and not offer alternative comfort; or they may try even harder and give extra cuddles – or they may do a mixture of both. All perfectly understandable responses to a baby that is acting differently from the way we are told babies should behave. However consistent or inconsistent this care giver is, the baby remains distressed and isn’t able to regulate or coregulate.  

When an infant or child is exposed to persistent high levels of stress, this can lead to toxic stress. This highlights why meaningful collaboration with autistic people is so important, and in particular with autistic children. We need to work together to create environments and relationships where the autistic person is regulated and feels safe. And as Polyvagal Theory emphasises, safety is defined by feeling safe, not by removing threat.

Toxic stress means that cortisol levels remain elevated for extended periods of time in our bodies, and this can suppress the immune response and may modify brain architecture in regions that are involved in learning and memory.

In addition, toxic stress in infancy and childhood can lead to increased vulnerability to a range of mental and physical health conditions and health-harming behaviours over the course of our lives, including depression, anxiety, cardiovascular disease, diabetes, stroke, alcoholism and drug abuse. And as we know, these kinds of mental and physical health conditions and health-harming behaviours are frequently reported for autistic people at considerably higher rates than for the general population. In fact, the greatest cause of premature mortality for these autistic adults is suicide.

We cover this in more depth in our training Sensory Trauma: autism, sensory differences and the daily experience of fear | Autism Wellbeing

I think using the word “trauma” helps people identify that the problem is significant and worthy of attention (rather than something people should be encouraged to ‘get over’ on their own). Have your sensory challenges ever been dismissed or downplayed? Explain.

One of the five core characteristics of Sensory Trauma is that an event causing sensory trauma to an autistic person may be perceived as inconsequential by non-autistic people in the same environment – if perceived by them at all. The autistic person’s reaction may be viewed as “challenging behaviour,” over-emotional, or maybe not even accepted or believed – simply because the event may not be recognised as traumatising by the non-autistic person.

This is definitely true of my experience. I am fortunate in being articulate, and I’m a professional in the field of mental health and social care; however, this gave me no advantage whatsoever when explaining my genuine lived experience to clinicians responsible for my own support. I have been viewed as lacking resilience, which I find offensive. I believe that autistic people are amongst the most resilient people on the planet. The challenges of being in a neuro-minority that is discriminated against, misunderstood, and invalidated on a daily basis cannot be over stated. I have insight and am able to explain how I experience the world, yet I have been perceived as overreacting, attention seeking, awkward and selfish, simply for stating my needs and asking for them to be accommodated. Seeking psychiatric help for the way I perceive the world resulted in missed and misdiagnosis and all manner of medications and treatments for disorders I simply didn’t have.

When autistic people describe their sensory experiences, they tend to use language that is very different to that used by autism professionals. We explore this in our Sensory Trauma paper and will be using examples in our accompanying book. Autistic people describe their sensory experiences in blogs, books, autistic-led training, artwork, spoken word and many other mediums. It may be reflective, powerful, graphic, shocking and full of sensory details. Whereas the language used in the majority of academic, clinical and popular autism literature focuses on scientific sensory processing language – words like disorder, deficit, hyper/hypo-responsive, unusual and dysfunction. It implies there is an existence of an average or typical operation of human sensory processing.

There’s no denying that autistic people may have challenging sensory experiences, and there is likely a neurological explanation for these difficulties. But it’s important to consider the way in which non-autistic autism professionals tend to assume that the sense systems of autistic people operate in a similar way to their own.

The different ways in which non-autistic and autistic people experience the world through their senses, and the different ways they describe these experiences are often at odds – and is it any wonder? If my “normal” and your “normal” are so very different – and if you believe your normal is the “correct” one against which my experiences should be measured, there’s no surprise that my experiences are so often misunderstood.

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