Pathological Demand Avoidance – Improving Outcomes

Last week The PDA society announced its focus for the year as ‘Improving Outcomes’. And that got my mind ticking about how much of my son’s difficulties could of been avoided with greater understanding and acceptance from schools, professionals and society as a whole.

I remember seeing a video clip once on Facebook representing how people from different financial and social backgrounds have different starting points and those from the lowest, poorest social groups have to work so much harder to get to reach the same point in life as those from more affluent and supportive ones. It showed runners on a track with people from these differing classes having their starting lines adjusted accordingly showing just how far back those from the least affluent social classes actually began the race to success and how much harder they had to work to get to the same finishing point.

This got me thinking, putting aside a PDAers social and economic background for a moment where on the track would they be placed? I came to the conclusion that most would start at the same point as anyone else.

This may surprise many but I do not see that my child had any greater disadvantages than any other child when he set off to school at 4 as he was bright, willing to learn and had supportive parents who loved him dearly and were there for him in all he did and, of course,we still do.

Now although my son came from this equal starting point he has not experienced the race in the same way. If I was to make a visual image similar to the one I have just described it would show a track littered with obstacles, and people on the sidelines throwing things at him and trying to trip him up. If he arrived at the finish line he would be seen to be cut bruised and broken and a long way behind the other competitors.

You see what I have witnessed and what my son has experienced every step of the way in our journey so far are obstacles put in his way by schools, by professionals and by ignorance and lack of understanding often by those same people.

He has been hampered constantly in his progress by the inflexibility of the system and of society that doesn’t except difference in learning style, or the way people communicate or relate. It has at times, left him damaged and almost broken.

I thought about the figures of 70% of PDA children not in full time education, 34% of autistic children saying the worse thing about school is ‘being picked on’ and only 16% of autistic adults in full time work. Then there are the frequent remarks on Twitter from autistic people who have all the qualifications and capabilities to fill a vacancy but are turned down in favour of someone less qualified but with better ‘social skills’ or ‘better suited to working in a team’ even where these things bare no relevance to the job in question. So this lead me to ask the question;

‘How much is being autistic/PDA a disability and how much is it being disadvantaged by society?’

The answer of course is it is both. It is a disability in this society, under these rules and these attitudes, the expectations to conform disable PDAers enormously big how do we change this. Greater understanding, acceptance and a supportive society for all is the short answer. This of course means changing the way we educate, changing attitudes in the work place, campaigns to change attitudes towards autistic people and a willingness to accept not all people function the same way.

If this could be achieved the benefits to PDA children and adults would be enormous and their contribution to society, I believe, would be huge.

I wrote more about what the world might look like if it became a more inclusive place in this blog post Switching On The Light. It is time to start working on removing those barriers, supporting instead of sabotaging PDAers chances of success by attitudes and interventions that damage their mental health and ability to function in the way that they need to in order to thrive.

Pathological Demand Avoidance (PDA) is part of the autism spectrum, find out more HERE.

Sources – Figures quoted regarding autistics from the The National Autistic Society and figures quoted on PDA are from the 2018 survey by The PDA Society

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