This year the PDA society’s Action day’s theme on 15 May is ‘Positivity’ so I thought I would write a little piece with this in mind.
PDA (or pathological demand avoidance) is an autism spectrum profile the key elements of which is a high level of anxiety and a need for control. It is becoming better known but it is still not recognised as a diagnoses in many areas of the UK including my own. PDAers need very specific accommodations and approaches in order to thrive. My son is diagnosed as ASD (autism spectrum disorder) but the fits the PDA criteria and was diagnosed with this in mind.
While I understand how much an autistic/PDA person can suffer in a neurotypical world I refuse to see my child as victim or somehow less. I have thought about this a lot. The fact is around 700,000 people in the Uk are autistic that is just over 1 percent, this makes them very much in the minority. Being a minority means you are often at a disadvantage because the world is geared so much to majorities, just ask any disabled person and they will tell you that despite changes in law to give equal rights for things like access, many places are still in inaccessible or only accessible with difficulty or in an inferior way, so they are in many senses disadvantaged.
I can’t help wondering how much of a disability autism would be considered if autistic people were actually the majority and the world was designed to meet their needs and not needs of neurotypicals?
To give an example of my thinking on this I will tell you a story…I remember some years ago I was travelling to Toronto and in the airport lounge I met a fantastic lady and we started chatting. After a few minutes of small talk she asked me if I could show her where the departure gate was as it was difficult for her to work out which gate as she was blind. Well, as it turned out the flight was cancelled so we had to stay in a hotel overnight and myself, my companion and this lady agreed to meet for drinks later.
I said I would pop by her room and walk down to the bar with her around 7pm but I was early. When I knocked on the door she said it was open and as I entered the door closed behind me and I found myself in total darkness. She continued chatting away while I stumbled about looking for the light switch when I eventually found and turned on. She was revealed standing in the corner pouring boiling water into cups. So there was I stumbling about helpless and meanwhile she was oblivious and calmly making a cup of tea, in that situation I was the one who was disadvantaged. because i could not function efficiently in the dark while she could.
Now Imagine if that metaphorical light was turned on in society for autistic people? If the world was geared in such a way to take advantage of autistic’s strengths? My brother, who is diagnosed with Asperger syndrome, posted on Facebook the other day about how studies have shown that genius have those same autistic qualities and that it is likely that a high percentage of them are actually autistic. All of our modern technology has an autistic hand in it somewhere. He highlighted the strange paradox that in the world with large elements designed by autistic people it has not been designed for autistic people.
There is currently a strong autistic rights movement challenging perceptions and also questioning self-identity and whether autistic people wish to be considered to be disabled or not.
My personal feeling as an outsider looking in through the eyes of my son is that in large part our current society effectively disables autistic people by the way it is structured, by the culture of judgement around differences, by the insistence of a one size fits all attitude for everything from communication to education, work to fashion. However as far as any labelling goes that I feel is up to #actuallyautistic people to decide.
Many autistic people contribute massively to society because of their focus and eye for detail through art, music, design, science and multitude of other areas. This is despite living in a world which is not taking their needs into account the majority of the time. In fact that 71% of autistic children already suffer from mental health issues as a result before they have even reached adulthood so it is a miracle really that so many go on to achieve so much.
What would happen if autistic people’s need were met from day one?
Not only would there be another group of people free to reach their full potential for themselves, as everyone should be able to do, but the world could benefit enormously from that. The same can be said for so many ‘disabilities’ and ‘differences’, making a world that meets the needs and values the worth of everyone in it could mean the brightest of futures for us all.
Becoming a truly inclusive society is not about giving up something or giving to someone, it is about creating an environment that is getting the best out of every citizen to the benefit of all.