The response to the last BLOG in the My Story series was overwhelming. Thank-you to everyone who read the blog post and comment or shared my story. I must say it was a liberating feeling to know that other people could reflect on their own vulnerability and resilience too. It was powerful to know that my experiences resonated with people in my life.
This BLOG is an opportunity to share more of my story. This BLOG is about explaining the current research on Sensory Processing Difficulties and sharing more of my daily experiences from living with sensory defensiveness. I hope to give you an insight into the complexity of daily life when your sensory system is sending mixed up signals to your brain.
My Story - In 2012, I was sitting in a lecture theatre learning about Sensory Processing and Defensiveness. At this point I had no idea, I would actually learn more about myself in this weekend than I thought possible. Patricia Willbargar and Tracey Stackhouse has spoken about neuroscience and their research into behavour and the sensory system, and I was sitting there thinking “wow, I’ve learnt more about neuroscience in 1 day than I did in 2 semesters in Uni”. But the best (and worst) was yet to come. I remember it so clearly. I still have the piece of paper I wrote my list on. It was a list of all the flight/fight triggers I experienced each day. The still remember sitting there trying to hold back the tears welling in my eyes. Not sad tears. Not happy tears, But tears of relief. There was a name for it, there was a reason why and there was something I could do about it. I’d written over 50 things on this list; everything from the demanding to be first student bell-ringer in primary school (normally the office lady did it), to becoming frustrated at a clock ticking or having these wild emotional outbursts that really only my family had seen. The hardest part came when we had to demonstrate the therapy techniques on each other. We had been told that these techniques would have dramatic and rapid effects on our clients. We were told they may become emotional because we were calming a sensory system which had been in high alert for years… nothing could have prepared me for that feeling, that rush of emotions, that overwhelming feeling of relief or the elation that comes from understand. I did cry, I did feel overwhelmed and I did nearly whack the colleague who didn’t do the technique correctly. Not on purpose, but as a reaction... as when these techniques are not done properly they have the opposite effect, and that’s not pleasant.
My Story is a journal, filled with personal experiences and education to help you understand the actions and reaction within my story.
So, what is Sensory Processing?
Sensory Processing is the mechanism the human brain uses to identify, organise and react to sensory information. This information is collected through the sensory organ, transferred to the brain by the nerves and sent to different areas of the brain which plan the required responses.
A sensory processing disorder is different to having injured or damaged the organs for sensation, as in blindness or deafness. Rather, it is an error in how this information is treated once it passes from the sensory organs. Dr Jean Aryes, first wrote about sensory integration and processing in the 1960’s. Dr Ayres defined sensory integration as, “the neurological process that organizes sensations from one’s own body and from the environment and makes it possible to use the body effectively within the environment” (1). She proposed several types of errors in the sensory processing system. which remain accepted theories today. Her theories relate to -
Sensory Modulation Disorder - The inability or inaccuracy of automatic neurological responses to sensory information with accurate referencing for intensity, significance and risk for each situation.
Sensory Discrimination Disorder - The inability to accurately apply meaning or organise sensory information to assist in understanding the sensory information within each situation.
Sensory-based Motor Disorders - The inability to create ideas, design movement plans or perform coordinated activities for each situation.
So why am I giving you all these definitions? In every aspect of my life, I have worked hard to understand why something happens the way it does; why I experience the world the way I do. I’m sharing this information with you as a way to begin to explain the power of the sensory system to change, for the better, the way you explore your environment and your ability to be highly productive in each situation.
What is Self-regulation?
Self-regulation is our way to participate in the activities we choose to each day. Activities like getting dressed, performing at work or school and even maintaining friendships. There are three important stages within self-regulation -
The ability to perceive the required level of alertness of the situation/activity
The ability to recognise your own internal level of alertness in that moment
The ability to shift your level of internal alertness to match the situation/activity
A self-regulation disorder occurs when one or more of these stages is not functioning accurately, automatically or effortlessly. Overall it’s the inability to change/adapt the brain’s internal filters to match the different levels of sensory information from the environment required for each situation.
The ALERT Program, developed by Williams and Shellinburger, applies a model of thinking to self-regulation which allows children and adults to find a common language to discuss self-regulation and make the necessary changes in learning to overcome self-regulation difficulties.
Too high – over active and disruptive
Just Right – focused and learning
Too Low – inattentive and distracted
What is the research saying about Sensory Processing Disorders? (SPD)
Sensory processing, and the disorders/difficulties associated with SPD, have been researched and published widely by Dr Jean Aryes, Dr Lucy Miller and Winnie Dunn over the last 50 years. In 2014, the DSM-V listed sensory under-responsivity and over-responsivity as criteria in Autism Spectrum Disorders, however SPD was not included as a stand-alone neurological disorder, despite significant advocacy from Dr Lucy Miller and her colleagues.
Research from 2013, completed by Pratik Mukherjee and seven colleagues (2) found biological similarities between people with behavioural symptoms of SPD. Previously, there had only been behaviour and physiological observation studies. The 2013 study suggests there is a link between SPD and reduced conductivity in brain white matter, mostly in posterior tracts which carries specific sensory information.
To better understand how a sensory processing disorder presents , we need to understand the organising mechanisms that take sensory information from the organs to the brain. When these mechanisms are dysfunctional they distort the perception of sensory information, and it is the disorganisation which can prompt the 'fear / danger' aspect in the Flight | Fight | Fright. The disorganisation of sensory information in the brain puts the body/brain into a state of high-alert and this will disrupt the person's ability to perform their normal movements / learning / thinking. (3)
Inhibition: The mechanism which acts to block out unnecessary sensory information.
EG. Blocking out the other conversations on the train to read your book.
When this mechanism is dysfunctional behaviours may include: distractibility or poor judgement/ problem solving skills in situations with varying sensory inputs.
Habituation: The mechanism which automatically switches off awareness of sensory information.
EG. When first you put on your socks, you notice the seam at the toes, once your shoe is on, you don't. When this mechanism is dysfunctional behaviours may include: fidgeting with clothing, repeated attention to noises or sights to reassure their origins.
Facilitation: The mechanism responsible for storing patterns of sensory information / practiced actions. EG. A particular food tastes bitter, next time you see the food you recall it's bitterness and you don't eat
When this mechanism is dysfunctional behaviours may include: needing to think about the action required before acting, ie. Hearing a school bell, thinking what it means then packing up rather then an automatic response to pack up.
What is Sensory Defensiveness?
Sensory Defensiveness is described as a tendency to react negatively or with alarm to sensory input which is generally considered harmless or non-irritating by a neurologically normal system. Sensory Defensiveness is a neurological condition with sensory symptoms.
While it is common to have sensory preferences of 'dislike' towards some sensory information such as loud noise, or bitter taste characterised by distinct behavioural responses, people with sensory defensiveness will elicit the Flight|Fight|Fright response automatically on a neurological level to these same ‘disliked’ sensory information. (4). The body will initiate the Flight | Fight | Fright response in situations of perceived fear/danger. This primal response ensures the body is ready to act. The neurological features of this response include: raised adrenaline levels, increased blood flow to the limbs and sustained endurance/alertness. If this system is placed under repeated stress/activation, it will fatigue and become less effective. This over-active state can result in sickness, depression, anxiety and an inability to react appropriately when the Flight | Fight | Fright system is called upon. (5)
Secondary issues associated with Sensory Defensiveness
Anxiety, stress, distractibility
Sensory overload / shut-down
Postural and Physiological problems
Social and Emotional disruptions
Coping strategies often used to manage daily life
Sensory seeking behaviours
How do we treat Sensory Defensiveness?
There are three stages to treating Sensory Defensiveness. All three are key to managing this disorder and maintaining a high level of happiness in life, when life feels complicated enough already. The first, enhances the existing coping strategies. The second, minimises the secondary symptoms for that next reaction. While the third, begins to change the neurological structures which trigger the sensory defensiveness.
Awareness, Planning and Recovery - Knowing what triggers sensory defensiveness, which is different for each person, helps to minimise the stress in anticipation and increases the ability to remain in challenging (important everyday) situations longer.
Sensory Diet - Initially developed by Patricia Willbargar, a collection of powerful activities to assist the nervous system to process sensory information correctly by providing recurring positive and calming sensory input. This Sensory Diet, not only assists in recovery (Valance shifts) but also to minimise the size of future reactions (Phasic shifts).
Intensive Protocols - The amygdala is a small part of the brain responsible to deciding if sensory information adds up to ‘dangerous’ or ‘positive’ situations. This brain-switch should be mostly applying positive meaning to information, however in sensory defensiveness, it applies mostly negative coding, which raises the baseline level of alertness (Tonic levels). Intensive Protocols, such as Willbargar Therapressure Brushing or Therapeutic Listening from Vital Sounds have a targeted neurological approach which is closely monitored by Occupational Therapists for both behavioural and neurological changes in response to challenging sensation.
Over the last 2 weeks, I have been completing my own Sensory Defensiveness Intensive Protocol and I’m almost ready to start scaling back this program. As with most treatment programs or sensory defensiveness, there is a certain level of maintanence that needs to become part of everyday life in order to reduce the elevation of baseline alertness and limit the impact of secondary symptoms. You wouldn’t expect to exercise a couple of times and be fit for life so the same is true with sensory processing/defensiveness program
My sensory diet has included -
Two (2) hours of intense exercise each morning
Showering twice a day
Avoiding noisy situations
Twice daily Therapuetic Listening - Grape Jamz and Collective Focus Q.S.
Mediation before bed
It’s certainly boosted my productivity levels and this BLOG post is tribute to that boost in attention and concentration. I was planning to have it completed weeks ago, before I started my Intensive Treatment but each time I sat down to write, or work, or focus… there were too many distractions. The clock ticking, the dogs barking, the glare from the windows, the slight hunger I felt, the tag on my clothing. I realise that reading this list may sound familiar to you, when you’re procrastinating over beginning work or study, the thing is, that list is about 10% of the things that grab and hold my attention. The main difference I believe between this feeling of anxiety/discomfort/fear and ADHD, is that I am not distracted by the sensation, my brain is asking me to focus on +100 things at once to make sure I’m safe. These last two weeks have been wonderfully challenging to maintain the social connections around me, when all I wanted to do was hide away because my nervous system was changing so fast that it felt new, weird and different each moment, so unpredictable. Then, today, 10 days into the program, I’ve needed that space. Today, my brain finally switched over and has allowed that tonic level to begin to down-shift towards normal levels of alertness. It’s a strange feeling, not having the buzz, not feeling the random sensations or being pulled in many directions all at once. Tomorrow, there will be a calm focus and from there, an opportunity to maintain these changes for another 6-9 months through daily habits.
Children diagnosed with Defensive SPD have the opportunity to access early intervetion. They receive the support and interventions to enable them to overcome their Defensiveness and properly manage their sensory processing disorder so they don't miss out on vital opportunities to develop and experience everything the world has to offer. These children often had marked behavioral challenges as a younger child that were disruptive or challenging for their parents or teachers on a regular basis. Adults with Defensive SPD have been those children who, through intelligence or conditioning from an early age have controlled their symptoms, hid their discomfort from those closest to them and found a solution to any challenge presented to them, even if that meant missing out! These were the kids who bottled up their emotion until they overflowed, melted down or throw a tantrum. These were the kids who couldn't explain why they reacted so strongly to a tap on the shoulder...except to know that it was much more than the tap on the shoulder they were reacting to at the time. It was in fact every piece of sensory information their body was presented with that day, it was the 20 time every hours they were bombarded with sensory information their brain could not organise, it was the regret and shame they felt when they made an excuse for avoiding participation. It was everything about the world that scared them exploding in one magnificent moment of relief that was so quickly followed by a feeling of embarrassment and remorse.
My Story - A Personal Experience
Back in 2014, I wrote this text on my phone as a way to focus myself, rather than going into a full melt-down.
“While walking across the Harbour Bridge in Sydney my logical brain said "Slow down, stop, look at the beauty Sydney harbour has to offer, enjoy the moment, you have earnt after working so hard." BUT my protective brain, the part affected by Defensive SPD said "Get me out of here! The breeze stings my skin, the flashing lights of the car headlights is grabbing my attention with each flash, the sound of my shoes on the footpath is ringing in my ears and if I slow down I will feel more overwhelmed because movement is about the only thing that makes sense in my body. My eyes are welling up with tears but I feel the need to push away the fears and ask myself to be calm, it’s not working and the tears are flowing, making it difficult to type, I’m not sad, I’m not unhappy, I’m just not happy.” Reading this text back to myself now, brings back the memory of that evening and the sensations that were so intense I really just wanted to scream out loud, but at the same time I remember just wanting to get out of that situation without falling apart. It is this conflict that adults with Defensive SPD live with nearly every second of every day.
Part of the reason why I am writing this BLOG is to draw attention to the need for more conversation about sensory defensiveness and sensory processing disorders amongst the health professionals who treat adults with anxiety and depression. Also to highlight the need to open up the conversation with more adults who may feel that many of the explanations I have given above in this BLOG apply to their life experience too. Here’s the place to have that discussion, to open that conversation…
Many of the children who are referred to Occupational Therapy or Child Psychology for behavioural difficulties have some form of sensory processing disorder or sensory defensiveness. The most common difficulty parents and teachers report is “uncontrollable tantrums”, I’d suggest that in most cases, these are actually sensory melt-downs. Children (and adults) with Sensory Defensiveness develop coping strategies to assist them to manage day-to-day activities that pose significant sensory challenges. With prolonged exposure to challenging situations coping strategies may become ineffective, this is known as a 'melt-down'. Children are remarkably clever and some will recognise that when they are at school there are certain expectations and social requirements, whilst at home they feel free to relax and allow their parents to help with managing melt-downs. This is often frustrating for parents who do not yet understand why their child “chooses” to be “better behaved” at school. Behaviours exhibited during a 'melt-down' are a result of a 'threatened nervous system' and do not reflect the individual's true nature. Signs of a 'melt-down' may include -
Strong emotional responses
Retreat to a 'safe' location
Regret or remorse following a period of self-regulation to calm the nervous system and regain control over thought processing and behaviour
Sensory Processing Disorders affect children and adults. Most children are referred for behavioural issues surrounding skill development or learning difficulties. While most adults are referred for high stress levels or as part of the search for better social skills. Often, these adults have extremely good coping strategies in place and have come to view these strategies as 'personality traits'. It is not until we consider childhood behaviours and current likes/dislikes that sensory processing disorders are diagnosed and baseline levels of alertness can be addressed which lowers the overall need to consciously control each situation with coping strategies.
My story is a craving for silence, silence within my own brain, to smooth out the ups & downs, Most importantly, this story is about finding the pockets of silence that surround sensory processing disorder to breaking it down, break down the lack of knowledge about treatment and identification of coping strategies which often hide the effort required to maintain abilities in daily skills and social situations.
Remember that each person has their own sensory preferences and a ‘dislike’ is vastly different to ‘defensiveness’. Myself and our Team of Occupational Therapists are always standing by for a “Quick Chat” with you about any gut-instinct this BLOG post may have triggered for you. Reach out and ask that question… either below in the comments, on Facebook or with me at 1300 933 552. You can always request a time by visiting http://earlylinks.youcanbook.me
Ayres; 1989, Sensory Integration and Learning Disorders, p11
Mukherjee. P, et al. Abnormal white matter microstructures in children with sensory processing disorders. NeuroImage: Clinical. 2013 (2) 844-853.
Williams, Mary Sue and Sherry Shellenberger. "How Does Your Engine Run?" A Leader's Guide to The Alert Program for Self-Regulation. Albuquerque, NM: TherapyWorks, Inc., 1996.
Wilbarger, Patricia and Wilbarger, Julia. (1991). Sensory Defensiveness in Children Aged 2-12: An Intervention Guide for Parents and Other Caretakers. Presented in Penrith, Sydney – August 2011