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Neurodivergent Body-minds Deserve Better Than The Current Status Quo

Many of us will have heard similar phrases in relation to how our neurodivergent 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, when they’re not getting used to it, and when the conventional wisdom of popular consciousness occludes others from seeing how not-at-all-fine some of our children are.

After years of trying many different mainstream group settings, our son’s overwhelm from being in complex environments was clear.

The absence of systems and educational provisions designed to meet the needs of differently shaped nervous systems, meant that our son could only ‘cope’ in them, in survival mode.  The sensory, social and everyday demands inherent in mainstream provisions, would repeatedly trigger him into a defensive state.


When we, as parents, became proactive in making the changes our son needed, when we shared our intention to opt for smaller groups and settings, sensitive to our son’s nervous system needs, we were met with many curious responses.


One such example was from a health professional.  After listening to me describe how positively William had responded to being in a neurodivergent friendly setting, she argued:

“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!”



Desensitization is a term that is used quite liberally in everyday discourse, especially around this topic.

Very often it is clear that the meaning of desensitization gets lost in translation.  To become desensitized, certain conditions need to be in place.


Systematic desensitization, a behavioral technique commonly used to treat fear, anxiety disorders and phobias, seeks to ensure such appropriate conditions are in place.

However this outdated, and in this context highly inappropriate intervention, fundamentally overlooks the individual needs of the neurodivergent mind and body.


In order for systematic desensitization to be ‘effective’; the person needs to feel comfortable and empowered; as opposed to flooded and overwhelmed.


For many neurodivergent individuals, when repeatedly exposed to environments that dishonor our individual needs, the latter is true.  As such we end up spending much, or most of the time in, or vascilating between, flight- fight and freeze.


For a child, whose nervous system is screaming “get me out of here”, they may fight or take flight.  If they are unable to their nervous systems may shift them into a freeze state. This survival mechanism is the brain and body’s way 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 because they are unable to escape the pain and distress any other way.
 

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 in this context really means.

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 an intervention or just through forced everyday attendance in inappropriate settings.

Those who repeat mantras such as ‘they’ll get used to it in the end’, often do so with the mistaken belief that if something is OK for them, it must be OK for another.


The idea that we all get used to the same things, over time, can be explored by thinking about the concept 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 leads us to assume that there is a naturally occurring, positive effect of being in the same situation over a period of time. 


Whilst many do habituate to a given situation over time, we cannot limit our thinking to the responses of the majority.  When we look beyond this, we can begin to reimagine a broader, more inclusive reality.

We can consider how the naturally occurring differences that arise from having differently shaped nervous systems, means that for some of us, the same process of ‘habituation’ may not only be unsuccessful, it may also be harmful. 

Vivanti and Dissanayake carried out a research study which examined attention to novelty versus repetition and found that Autistic people have different 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” (Vivanti and Dissanayake, 2018).


So rather than habituating; some Autistic people will have ongoing levels of high anxiety and distress.  Repeated exposure to aversive conditions which threaten one’s sense of safety and which create an “unresolved autonomic nervous system response” (Levine, 2019) is the very definition of trauma.
  

Only considering the predominant response to being in an intense and chaotic setting, such as a classroom, is deeply irresponsible.  And yet our society’s and system’s conventional wisdom about what children need, is largely based on neuronorms and the experiences of the majority.

It is not until we question this conventional wisdom and become deeply invested in the needs of all children, that we can begin to comprehend how to support the needs of neurodivergent bodyminds too. 

The world is not yet set up for, or designed to cater for the experiences of neurodivergent children or adults.  Neurodivergent folx with individually shaped nervous systems are frequently invalidated. 

Invalidation trauma adds further wounding to the nervous system.  Invalidating individual differences, thereby obscuring an inclusive range of needs, let’s our systems off the hook.  This keeps our educational and therapeutic provisions stuck in an outdated paradigm, where meaningful accommodations required to meet the needs of individual nervous systems, are left unaccounted for.

All too often, our society and systems insist that with enough exposure and enough time, ‘desensitization’ will occur.  All the while those with nervous systems that respond differently to the majority, and who struggle greatly in complex sensory environments such as school or non-accomodating workplaces, are repeatedly distressed, dysregulated and excluded!


When Neurodivergent bodyminds experience burnout, when our nervous system’s protectively shift into shutdown, exhausted and overwhelmed, the full force of this lack of equity hits home.

The call for an investment in a new paradigm is clear.  Individually and collectively we all have a responsibility to lean into our power and to keep challenging the conventional wisdom of outdated approaches.

Our amazing children have so much potential and so many talents that the world needs to benefit from.  It is not ok for them to keep being expected to ‘cope’ in settings that in the end cause them to collapse.  Or for us as adults to remain trapped in this burnout cycle.

As a late identified Autistic individual, I ‘coped’ at school.  ‘Coping’ with the status quo for me included fatigue, sensory overwhelm, shutdown, dysregulation and having unmet needs.  ‘Coping’ for me also meant being a child who did OK at academic work, when I should have been doing really well, when I should have been thriving. 

‘Coping’ as an adult meant all sorts of things for me, including a restrictive relationship with food, a gradual disconnection from my body and in my most profound burnout a call to make significant changes to my life.

Too many unidentified neurodivergent adults grow up with unmet needs.  Just as we did, just as all children do, the children of this generation deserve so much more than ‘coping’ and ‘surviving’. 


Together we can challenge the outdated premises upon which our current systems are based.  The need to move beyond the conformity and compliance based paradigm is immense.  Now more than ever, we need an inclusive and compassionate paradigm that prioritises what safety and connection looks like for every child’s nervous system. 

We need to stop forcing children to endure environments that result in distress, unmet needs and trauma.  Our families need real alternatives, that are not limited to home education if school cannot meet need!

Meaningful systemic changes to our systems need to include new investment in creating environments collaboratively designed with the knowledge and wisdom inherent in the neurodivergent community. 

Every child has a right to have their individual needs met and their differences radically accepted and respected.  Currently there is no  commitment yo do so, rather families are left unsupported, or barely supported in theworld of home education.

This gets officially and incorrectly referred to as ‘elective’ home education.  Whilst we have found that we love home educating our boy and we do so with our whole hearts, and to the best of our ability, we did not elect to do so.  Elective means optional and implies that a choice was made in favour of other available options that could meet need.  We do not ‘elect’ from a ‘list’ of one! 


For more you can find me on Facebook at :

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

By Jessica Matthews

Writer, home educator and Autistic advocate, with specialisations in psychology, polyvagal theory, Autistic / neurodivergent wellbeing.
BACP Integrative therapist, Post Grad training in Clinical Psychology , BSC Psychology Hons degree.

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