Change the title of PDA to Extreme Demand Avoidance to get our children the help they need

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Autism PDA .. a different style of parenting


Parenting any child has its difficulties, but parenting a child on the spectrum can be even more challenging.

But parenting a child on an Autistic PDA profile can be a complete nightmare.

Many people are unaware of PDA.

I believe PDA to be part of the spectrum in Autistic children. The term stands for Pathological Demand Avoidance, which has the psychiatric world not willing to diagnose. It it a postcode lottery.  Nobody wants to label a child pathological. Pathological although true in a PDA case is completely correct in its physiological sense but just sounds so dangerous in a child.

Now our children with PDA can be dangerous but usually to their own parents or themselves.   

Since discovering this co morbid of Autism by random chance when I googled ‘why does my child blame everything and anything on someone else, and never take the blame even when caught red handed.?’

PDA came up as an option and It was like reading my sons biography.

Finally something that fit.

After reading about it I realised that I was PDA too.

PDA is about an inability to follow demands made of you. For many parents things at home become the norm for PDA parents they have no choice than to put up with the behaviours as they are accused of being bad parents, by schools, councils even the mental health system , basically by anybody who does not see the behaviours.

Secondary school can be the catalyst when the demands upon the child are too extreme and their anxiety becomes too severe. Most PDA children are extremely clever. So they know when a demand placed on them is too much to bear. The fight or flight mechanism kicks in and they go into fight or flight mode. Some children will fight (seen by the behaviours of lashing out. Uncontrollable fits, hurting others (even though they don’t mean to. They believe they are fighting for their lives. Or some children will run, seen by the behaviours of ‘runners’ (autistic children who will run away whatever the circumstances.)

A lot of Autistic PDA children who mask it well can hold it together, until they are in a safe space ie usually home. This is why many schools do not see the evidence in the school setting. How many of parents of these children have heard the saying ‘well he/she is perfect at school, we do not see these behaviours. Just because you do not see them doesn’t mean they are not there.

For long enough now parents have been begging in desperation to get help for our children who have a PDA profile. The term ‘extreme demand avoidance’ would be a much better fit for the psychiatrist community to be able to give this diagnosis, so why cant they change it ? 

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