5K For PDA

Countless young people and families across the country are impacted by PDA (Pathological Demand Avoidance.) This is despite PDA having its place on the autism spectrum. Though there is a growing awareness of the struggles faced by those with ASD, those with PDA tend to slip under the radar.
This is because they often present challenging behaviours, not in line with classical autism. Which has contributed to an already limited understanding and willingness to understand the condition.
Thus, these individuals and their families tend to go unsupported, on what is a seemingly impossible journey. The true trials and tribulations of which are knowable to only those on the "PDA Path." A treacherous path not helped by an already struggling and often unkind SEND system.
Individual parents, beset by seemingly insurmountable odds came together under a PDA Contact Group in 1997. Later they formed the PDA society in 2015, which acts as a bastion to families seeking strongly needed assistance.
Since its founding, the PDA Society, run entirely by volunteers with families of their own has demonstrated immense generosity in their tireless work for the recognition of PDA and support of other families in need.
They have created an ever-increasing amount of resources and run an incredible helpline for those in crisis. Despite these excellent achievements and countless others, there is always more to be done. In 2018, the PDA Society conducted what I believe to be one of the only surveys for individuals with PDA. (Sometimes, affectionately referred to as PDAers.)
Some of the most frightening results of this survey uncovered are:
"70% of 969 young people were not able to tolerate their school environment or were home educated.
71% of 79 adults and 70% of 1194 parents reported that they had found a lack of acceptance or understanding of PDA a barrier to getting relevant support
67% of 675 parents reported that they were dissatisfied with the help received from their Child and Adolescent Mental Health Service (CAMHS); only 20 individuals reported that a CBT-type approach had helped.
49% of 768 young people with diagnoses had been given one that included PDA or a demand avoidant profile or used similar terminology."
As someone with firsthand experience of this lack of acceptance and in some cases prejudice. I find these results troubling. Furthermore, I question how many more people are living with the condition, given the difficulty to identify it. This notion is not helped by how few and far between these surveys are.
The unfortunate reality is, the numbers of those affected by PDA and commonly by extension, ASD are ever-growing. One of my greatest fears is the creation of a resentful generation. By leaving this problem unaddressed we are allowing the epitome of boiling frog syndrome. So, I decided to put the time I spend training to even better use, with a 5k run.
By fundraising for the PDA Society, it is my hope they can continue to support those with nowhere else to turn to. And hopefully, in good time this support can increase in both quantity and quality. It might seem like a drop in the ocean. But working together we can make a difference in the life of a family.
And that feeling, that reward, is what will make my inevitable breathlessness worth it in the end.
(If you wish to learn more about PDA and the work conducted by the PDA Society you may do so here at their website: pdasociety.org.uk/)