Improving Outcomes PDA Day 15 May 2019

I wrote this short fantasy/reflective piece before setting up on wordpress, so it just sat as an early post on my Facebook page. I decided to tweak it and put it into blog format as my focus piece for PDA Day. It is about what things could look like once provision; committed to Improving Outcomes is made available to our children. It uses this slightly quirky/ historical lens to help bring the changes that are needed into sharp focus:

PDA Day 15 May 2039

Pathological Demand Avoidance: The Power of Progress

The powerful lens that history and hindsight provides, allows us to see the full magnitude of historical failures. When we look back and reflect on the shocking conditions in which people have lived or situations where human rights have been abused, it often seems incomprehensible. We might ask how such treatment of people was ever permissible and why those in power were not held accountable? When we look back at our Education and Health Care systems for example, we feel appalled at the way in which too many children and adults were neglected or failed. We perhaps even take great comfort from knowing we don’t have to raise our children through such times.

This kind of clarity can be seen throughout history when we reflect on the experiences of many vulnerable groups. One strong example of this relates to Autistic children and adults with PDA; Pathological Demand Avoidance. Whilst this profile of Autism is widely recognised and understood in 2039, 20 years ago this was not the case. PDA was still being discredited altogether, or re formulated as a by-product of poor parenting, attachment difficulties or other similarly uninformed explanations.

Adult PDAers, the PDA Society and other committed professionals and parents, tirelessly fought for the rights of this marginalised Autistic group. These people fought to gain recognition of the strengths and difficulties of individuals with PDA so that they could be appropriately supported, understood and celebrated.

For a long time children with PDA were persistently squeezed through, what in the majority of cases was, the incompatible environment of mainstream school – simply because this was the only available option. Local authorities advised that this was the only way to gain “evidence” about whether or not the child would be “fine in school”. Repeated and irretrievable damage and trauma was inflicted on this vulnerable group so that said “proof” could be gained. It took an unfathomable number of exclusions, mental health breakdowns, incarcerations in ATUs and childhood suicides before systemic changes were made.

Before this, the majority of parents felt helpless and disempowered by the system as their child was failed and flailing in mainstream settings, had to “elect” to home educate without support, or fight tirelessly through costly tribunal processes to gain an appropriate and more specialist or bespoke provision for their child. This incompatible and under resourced system resulted in irretrievable harm to the mental health of these children.

Consequently, children with PDA became adults with PDA with complex and preventable mental health difficulties. Parents of children with PDA also experienced a decline in their own emotional well being; as a result of the pressure and unrelenting stress of fighting for their child’s basic right to a fair and equal Education (a fight not exclusive to parents of children with PDA, but shared by many parents of children with SEND.)

PDA was not only unrecognised within crucial services though, it was also relatively unheard of within the general population. Understanding of the very different set of needs and support required for people with PDA was very poor. This meant that all too often children with PDA were perceived as “naughty” and parents considered to be either lacking in discipline or “anxious”

Thankfully, after years of fighting, greater understanding of Neurodiversity led to a shift in services. Local authorities now meet the needs of this group of children by providing bespoke plans for each child based on their individual strengths and difficulties. And whilst limited funding will always be a challenge for services, at least we now live in a time where there is equal recognition and respect for the full range of diverse needs our children present. This progress has allowed children with PDA to learn and develop in environments that naturally allow them to flourish and thrive.

With this change we have also seen an exciting shift in the focus of our research into PDA, with an increased interest in how the PDAers differently wired brain; makes them such great leaders, entrepreneurs, and agents of change and progress. PDA in 2039 presents us with many new and exciting prospects.

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By Jessica Matthews

Neurodivergent Mother, Independent Researcher, and Writer. Background in Psychology and Counselling with postgraduate training in Clinical Psychology (BSc Hons Psychology and Trained Integrative Counsellor). Passionate about Neurodivergent Identity, Non-neuronormative Narratives and Polyvagal Informed Parenting.

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