Many of us will have heard similar phrases in relation to how our neurodiverse children cope with playgroups, school and other complex multisensory environments.
“He’ll soon get used to it!”
“He’ll be alright once he’s settled in!”
“She’s fine once she’s here!”
But what happens when they’re not fine and when they’re really not getting used to it?
William becomes so overwhelmed after being in a complex environment and the inherent sensory, social and everyday demands ultimately push him into survival mode.
After years of trying many different groups from Mother and Toddler and Music and Movement to different Stay and Play groups and Forest Schools; William’s tolerance has not increased.
Once we started to understand William’s needs more fully and recognised a clear pattern in his behaviour and communication, we decided to try reducing the group sizes that William was expected to manage in.
I explained this recently to a health professional and described how positive William’s response to this has been. I explained that by reducing group sizes we have seen a reduction in his anxiety levels and the duration of his meltdowns.
The professional argued that:
“The trouble with this kind of approach is that if we don’t keep putting him in busy environments; he won’t become desensitized to them!”
This is not an uncommon view and I’m sure many of you will know this from your own experiences.
Is it possible that daily exposure to complex multi sensory environments can lead a child with a hypersensitive and fragile nervous system to become; less hypersensitive?
It might be useful to start by deconstructing what is meant by the term desensitization. Desensitization is a term that gets used quite liberally in everyday discourse, especially around this topic. Sometimes it is clear that the meaning of desensitization gets lost in translation.
Desensitization is not a naturally occurring process; to become desensitized certain conditions need to be in place. This is known as systematic desensitization. Systematic desensitization is a behavioral technique commonly used to treat fear, anxiety disorders and phobias. Using this method, the person is engaged in a form of relaxation and gradually exposed to the anxiety-producing stimulus, like an object or place.
In order for systematic desensitization to be effective; the person needs to feel comfortable and empowered; as opposed to flooded and overwhelmed. Effective systematic desensitization is a controlled process. This is very different to the common misconception that desensitization occurs by repeatedly placing a person in a given situation.
What actually happens when neurodiverse children with fragile nervous systems are repeatedly exposed to environments that overwhelm them, is that their survival mode is activated; they fight, flee or freeze.
The latter is the least recognised response and one that often renders children’s pain and anxiety invisible. A child whose nervous system has been screaming “get me out of here”, but who also feels unable to fight or take flight, will most likely freeze instead. This survival mechanism is the brains ways of protecting itself from further trauma. It is a way of shutting down, or dissociating from the traumatic stimuli in the hope that it will stop!
When a person repeatedly freezes in response to traumatic stimuli it is usually because they feel they cannot escape the pain and distress any other way. One example of this would be in a nursery or school environment where a child does not have the power to leave and feels trapped. When a person believes that they have no way of changing what is happening to them, no matter what they do; learned helplessness can occur.
Learned helplessness arises when a person endures repeatedly painful or otherwise aversive stimuli which they are unable to escape from or avoid. After such experiences, the person learns to accept that they cannot escape from perceived threats and so they continue to freeze, shutdown or dissociate each time they feel this way. This makes children particularly vulnerable.
In response to the opening quotes and the notion that “they will get used to it in the end”, we need to consider carefully, what getting used to something might really mean for children who have these kinds of fragile nervous systems. We need to ask; what are the consequences of getting used to something that is repeatedly experienced as traumatic and overwhelming?
“Forcing autistic people to experience painful or aversive stimuli is harmful, whether it is done as behavior modification, or out of disbelief that something that is not painful to you could be painful to us, or even for therapeutic purposes such as desensitization.” https://www.spdstar.org/node/1137
The idea that we can all get used to something over time, can also be explored by thinking about the process of habituation. Habituation is the diminishing of an innate response to a frequently repeated stimulus, leading to a marked drop in arousal levels. So in other words, over time arousing sensory input becomes less arousing.
The notion of habituation would lead us to assume that, there is a naturally occurring, positive effect of being in the same situation over a period of time. Typically, and in terms of neurotypical operating systems this is often true. Many people do habituate to many given situations, over time. However, when we consider neurodiverse operating systems we cannot assume that the same process of habituation occurs. What if neurodiverse individuals do not have a typical habituation response?
Vivanti and Dissanayake (2018) carried out a research study which examined Attention to novelty versus repetition and found that people with ASD have less effective habituation systems.
“This lack of habituation results in an exaggerated perception of changes in the environment which in turn leads to sensory overstimulation, distress and the perception of the environment as highly unpredictable.
So rather than habituating; some Autistic children will have ongoing levels of extreme anxiety, where they function primarily in survival mode. Repeated exposure to these aversive conditions can, over time, lead to the development of PTSD and other mental health difficulties.
Because more typical responses to busy environments dominate; the world is not set up or designed to cater for neurodiversity. Neurodiverse people with hypersensitive sensory systems do not have their experiences of sensory pain, discomfort and overwhelm understood or validated. We are a long way off making actual accommodations; real changes that neurodiverse children and adults need. What our society does instead is insist that enough exposure to the available systems will, in time, lead to desensitization. It is not viable practically or financially to acknowledge that this is not true for all.
In the meantime; children with fragile nervous systems who do not cope in complex sensory environments such as school continue to experience distress, dysregulation, higher levels of anxiety, exclusions and very real and worrying mental health issues.
When we sit with our children back home after they have struggled in busy environments and whilst they behave in a way that is best understood as a panic attack, or when they completely shutdown and have barely enough energy left in their little bodies to function, we may often feel incredibly helpless. I have absolutely felt helpless at times and unsure of what we should do for the best.
But we are not helpless, we are parents of amazing children who have so much potential and many talents. We have a fight ahead for sure, one that many before us have had and many after us will still sadly need to have too. But we all have personal power and as parents we have more strength within us to fight for our children, than we would ever have for ourselves.
Outside of these individual battles and fights for our childrens rights, their well being and their right to a fair and equal education, it is also time for us to keep challenging more widely; the deeply ingrained beliefs and misconceptions about such things as desensitization and the things all children “must do” and “must be”. We must stop forcing our most vulnerable children to endure environments that do not meet their needs. Very real accommodations to existing environments need to be made and where such changes are not sufficient for the individual child; new and bespoke environments must be created. We cannot continue to damage children by making them endure traumatic settings; just because that is all there is available. Every child has a right to have their individual needs met and their differences respected.
As our family travels through our EHCP journey with William, I will write more on this subject and I will come back to share details about our fight, our specialist professionals and the individual and bespoke Education plan we are hoping to secure for our boy.
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