We’ve all had experience, either personally or through hearsay, of people who still say “I don’t believe in Autism. In my day it was just called bad behaviour”.
It is frustrating, it is upsetting, it makes me personally want to scream in their faces until they accept that they have got it all wrong.
There is only one thing that heartens me in these situations: at least they have heard of Autism. I don’t know the exact statistics for how many people accross the world do or do not accept that Autism exists, I don’t even know if such a survey has ever been done. What I do believe is that most people in my part of the world have heard of Autism, and do accept that it is real. They might have a wildly inaccurate “Rainman” image of what Autism looks like, they might feel that some parents seek an “autism” label to cover up parenting and behaviour issues, they may have their own ideas about what “causes” autism – vaccination, diet, parenting, telephone masts…., but they accept that it exists.
Within the medical and educational institutions, Autism is accepted as real. Despite the battles that many people face to get diagnosis, and despite a widespread blinkered view about the ways in which Autism may present, especially in girls; assessment for and diagnosis of Autism IS an option on the table. Once diagnosis is made, support and interventions are available, even though these may be expensive, or inappropriate, or delivered with varying degrees of enthusiasm and consistency. I am fully aware that there are professionals out there, particularly within the teaching profession, who at a personal level feel that Autism is all baloney, and that parenting and social breakdown are the cause of the behaviours that they are observing. If, however, they attempted to voice this in an official capacity, or if a parent complained, those professionals would likely be reprimanded and potentially suspended from their post.
Now take a minute to consider PDA. Pathological Demand Avoidance. It is real. It is part of the Autism Spectrum. It is recognised by the National Autistic Society of the UK , who describe it as this:
“PDA, first described by Elizabeth Newson during the 1980s as a pervasive developmental disorder distinct from autism, is increasingly becoming recognised as part of the autism spectrum. It is a lifelong disability and, as with autism and Asperger syndrome, people with PDA will require different amounts of support depending on how their condition affects them.
The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. Hence the name of the syndrome: pathological demand avoidance.
It does not present in the way that other Autism Spectrum conditions do, but people who live with it share the sensory differences, and have extremely high anxiety levels which they seek to manage by trying to exert total control over their environment and relationships, sticking to routines, carrying out obsessive routines”
It is real. Yet many of people, even those of us within the Autism community have still not heard of it. The vast majority of Health Authoritites and Education Authorities in the UK will not offer assessment for PDA and would not offer it as a diagnosis, they may also refuse to accept PDA diagnoses which have been done privately, even by reputable and experienced Doctors. Parents who have approached services with their concerns report being passed from pillar to post, being offered parenting courses, having their parenting skills called into question and even being referred to social services as suspected Munchausens-by-proxy cases. Along with all this, they face the usual socially isolating effects of bringing up a child with complex emotional needs, potentially challenging behaviour and who “looks like there’s nothing wrong with them”.
Refusal of statutory services to offer a diagnosis, or to verify one done privately can have a huge impact. It means that the support and training offered to parents and individuals will vary wildly according to area, according to the ability of the families involved to negotiate with authorities, and possibly according to the financial ability to pay for support and intervention privately. If those basic interventions that could make daily life, transitions and education less stressful are denied, then families and others working with PDA children, such as teachers, will continue to flounder in the dark. What is worse, those around the child may not seek to understand the process behind the “problem behaviours”, they will seek to eliminate, judge and reprimand them.
Some of these battles remain part of the everyday experience of non-PDA Autism families, but the Autism community in the main has travelled far further down the road of awareness than are the PDA members of our family.
Please take the time to click on some of the links I provided that provide further information about and accounts of living with PDA,
Try to understand a little about PDA, tell someone else about what you learned. Tell two people. Post a link on your Facebook page, on your personal page or in an online forum.
We are good at spreading Autism awareness. Let’s make sure we are doing it for EVERYONE who lives on the spectrum.
PDA in focus – the crime of un acceptance