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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

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 a PDA profile.

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 group.

These people fought to gain recognition of the strengths and difficulties of individuals for whom the PDA identifier was meaningful, so that they could be appropriately supported, understood and celebrated.

For a long time children identified as PDA were persistently squeezed through, what in most cases were, incompatible environments – simply because the available options were so limited.

Local authorities advised that it was only possible to gain “evidence” about whether or not a child could cope in school was to send them to traditional school settings that had no experience or training in meeting the needs of neurodivergent body-minds.

Repeated and irretrievable damage and trauma was often endured for said “proof” to be gained.

It took an unfathomable number of suspensions, exclusions, burnout, and further psychological distress and trauma before the required systemic changes were made. In some cases children’s unmet needs and distress became so acute that they were inappropriately placed in ATUs.

Before this, the majority of parents felt helpless and disempowered by the system, as their child was failed in mainstream settings.

Some ended up “electively” home educating with limited or no support.

Many fought tirelessly through costly tribunal processes to gain specialist or bespoke provision for their child.

In this incompatible and under resourced system, irretrievable harm to the mental health of these children and their families was caused.

PDA children became PDA adults with complex trauma and sometimes chronic health difficulties.

Parents of children with PDA also experienced a decline in their own emotional well being; due to 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 unmet SEND.)

PDA was not only unrecognised within crucial services though, it was also relatively unheard of within the general population. Understanding of the distinct set of needs and support needed, was very poor.

This meant that all too often these Autistic children were perceived as “naughty” and their parents as lacking discipline.

Thankfully, after years of advocacy, greater understanding of these distinct neurodivergent needs, led to a shift in services.

Now Local authorities meet their statutory duty to meet the needs of this group of children.

Bespoke plans are comprehensively made 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, radical acceptance and respect for diverse needs.

This progress has allowed all children 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 shaped nervous systems, make them such incredible leaders, entrepreneurs, and agents of change and progress.

PDA in 2039 presents us with many new and exciting prospects.

If you like this post, you may want to visit the Facebook page too:

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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