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. Emma is currently undertaking PhD research into perceptions of autism. Her work has been published in the BILD Good Autism Practice Journal, and her writing about autism is shared internationally through blogs and social media. When she’s not writing, she can be found outdoors – usually stopping to marvel at whatever has excited her senses in the natural world. In the first part of this special three-week series, Emma shared her winding path to diagnosis as well as some specific sensory challenges personal to her daily experience.
When did you receive a diagnosis and what prompted you to pursue one?
I was aware that I was different to my peers from a young age, and I attributed this to various things – as did my teachers, parents, peers and clinicians. Maybe I was too clever? Too lazy, rude and distractable? Personality disordered, psychotic or experiencing a mood disorder? Weird? Evil? An alien dumped on the wrong planet, perhaps? Whatever it was, I was a huge bunch of contradictions – brilliant at things that others find difficult, yet rubbish at things that others find easy.
I had input from services over the decades and received a variety of diagnoses. I hated myself for how I was and repeatedly sought help. But underneath that self-hatred and despair was the same bright Emma, the same passionate lover of the natural world (read my other blog www.offdowntherabbithole.org). The same desire to do good and make a difference.
In some areas of my life I consistently thrived, my work within social care for instance; whereas in other areas, I consistently struggled.
And then my son was diagnosed as autistic. I had never considered he was because he’s just like me, and it’s no big deal in our house. And there we have it – the reason why I am like I am staring me in the face.
Once my son’s diagnosis was made, it became obvious to me that I am autistic – I’ve always known I am like this, I just didn’t know that it was autism. I spent a huge amount of time reflecting on my life, and there is not a single thing that would indicate that I was anything other than autistic. Even my hospital notes from when I was born describe a baby that didn’t like being cuddled and wouldn’t feed. Whilst I hate labelling people, I had already been wrongly labelled so many times – including by myself, I needed to right this wrong and get diagnosed correctly.
So, two years ago, at the age of 45, I began the process of being assessed for autism. The effect of being diagnosed has been incredibly positive for me. Not everyone wants or can seek a diagnosis, not everyone will find a diagnosis useful. But for me it has brought me relief, understanding and validation.
Your new position paper Sensory Trauma: autism, sensory difference and the daily experience of fear addresses the idea that sensory trauma can arise from the many ordinary activities of everyday life (e.g. brushing your hair, showering, or meeting family). If you’re comfortable sharing, explain what types of sensory challenges you experience on a daily basis.
That’s right. The events experienced by autistic people as physically or emotionally harmful or life threatening may not necessarily be the extreme events typically associated with trauma. We need to believe that when an autistic person is experiencing Sensory Trauma, their response to that event is proportional to their genuine lived experience.
Proactively regulating my senses is key to me thriving – and essential for me to cope day to day. As an independent adult I am able to adapt my home to have soft furnishings that calm me just by touching them; I can control the lighting and have lamps rather than overhead lights which I find too bright. I regularly use my active noise-cancelling headphones because I find that unpredictable noise can be distracting at best, and painfully terrifying at worst. And like all of us, autistic or not – when our nervous systems are activated, we resort to responses like flight or fright, and become hypervigilant and on the lookout for further threats, which causes our sensory processing to become even more intense or, conversely, even more muted.
An example where I would undoubtedly experience Sensory Trauma is on supermarket shopping trips, because the combination of bright lights; the smell of people and food; the noise of the tannoy announcements and the echoey acoustics, plus the visual distress of so many products in all their different colours, shapes and sizes would overwhelm me. No matter how well I understand this or try and make myself cope, I always become overwhelmed, I have no choice. It’s not that I can’t cope or couldn’t somehow become more resilient – my brain is genuinely processing those sensory experiences as dangerous and telling my body that I am under threat, and I either need to fight, get out, or shut down completely to keep myself safe. The aftereffects of an experience like that are lasting and need me to really focus on my self-care, a situation like that can’t simply be “gotten over” once it has ended.
Similarly, social interactions can challenge me. I’m articulate, I’m pretty good at building rapport with people, and I certainly like lots of people and find them interesting. However, social interactions involve many sensory challenges for me: eye contact and getting it right – or at least right enough to not be noticed as an issue; the smell of the other person – their perfume, breath, clothes washing and personal care products that linger around them; interpreting their tone of voice, accent, and body language and multitasking all of this to make sense of what their words actually mean. Not just what their words literally mean, but any hidden meanings or subtle uses of metaphor, humour and sarcasm too. This is a huge amount of different sensory information to process. No wonder I get tired and appear unsociable at times!
When I was a child, having my hair brushed was incredibly distressing. Not just the tactile sensation, which is unsurprising – our heads are covered in sense receptors. But the noise of the hairbrush moving through my hair – I wasn’t overreacting, my brain genuinely processes that noise as loud and threatening. And standing still to have my hair brushed when my vestibular and proprioceptive senses were desperate for some input to let my body know where it was and what was happening, was almost impossible too. My survival response of fear and wanting to run away was proportional to my experience. These days hair brushing is not traumatic for me, but it certainly is for many people. I sit down, I brush slowly and mindfully, and I keep my hair conditioned so it is easier to brush – and I brush it myself which is far more predictable from a tactile point of view. It’s unpleasant and not my favourite task, but I don’t experience Sensory Trauma from it anymore.