To be PDA or not to be PDA? (Pathological Demand Avoidance)

My son is autistic and has been described by Camhs (Child and Adolescent Mental Health Services) as having “entrenched demand avoidance”. In a local authority that does not recognise the autism presentation Pathological Demand Avoidance I felt very excited to have met a professional who seemingly understood my child. Her analysis continued along the lines of “permenant demand avoidance” – he manages his anxiety by avoiding the triggers that make him anxious.

Multi agency meetings logged this, with everyone in agreement that we continue to enforce the non negotiable boundaries (just have to’s) and use the holy grail of “PDA techniques”.

I began to see hope in our journey. Hope that the world would understand my son and what he needed from those around him to have a happy and healthy childhood.

Small interventions were agreed upon and began… Key adults hoping to make a connection and engage with my son. This pressure pierced his happy bubble and meltdowns of nuclear proportions once again appeared from nowhere.

For the first time, thoughts of suicide were vocalised and he fell back into episodes of crisis. Paramedics were called and resulting medical consultations deemed that “all demands must be removed” to allow him to calm.

Individually, professionals were recognising that my son needed to remain in his home environment in order to protect his mental health. Education professionals were recognising that he would need a bespoke, in the home education and the focus should be on “widening his experiences” rather than accessing a school placement.

Now back to Camhs. The mental health “experts” now furiously back pedalling their nearly PDA recognition. Treatment of PDA includes a reduction in all demands. This is just not practical, so they say. The local authority does not recognise PDA (meaning there is absolutely no service provision for the very specific needs of an autistic child with a PDA presentation).

Mum was wrong to call an ambulance when faced with suicidal idolation in meltdown. Mum should tolerate the distress, it is part of the treatment process – to elicit the anxiety provoking responses and tolerate these. All treatment carries risk.

But calling an ambulance because my son was attempting to throw himself down the stairs is surely an unacceptable level of distress and risk?

Children, apparently, voice ideas of suicide so regularly that Camhs must choose which children are most likely to follow through. Apparently, a child of 10 would not know how to kill themselves. (Hang on, he tried to throw himself down a flight of stairs. I had to cling to the bannister with one arm and wrap him with the other.)

Mum must follow through with interventions otherwise child will just manipulate her by having yet more meltdowns in order to avoid the trigger. (Hang on, this is autism. The “trigger” was complete sensory and social overload following a Halloween where we went to one house to very quietly whisper “trick or treat – at his request.)

I asked Camhs for an agreement, that if the frequency of meltdowns continued to increase that we would all re-evaluate the treatment plan.

I argued that during his time in “official home education” my son had very nearly no meltdowns, and if he did they were not significant. He engaged with our learning tasks and he experimented with different social activities.

I had created an idealistic, autistic world. (Camhs say.) The real world is not as accommodating and my son has to learn to live in it. (Camhs say.)

And so this, I feel, is the crux of the issue. Autistic children have to engage, to some degree, in neurotypical expectations. According to Camhs. So we shouldn’t be attempting to meet the needs of the child, we should be expecting autistic children to meet the expectations of others – that may be impossible due to the specifics of their presentation?

I had successfully met the specific needs of my autistic son via creating him a bespoke environment. Evidenced by minimal meltdowns.

Apparently this is wrong. I have indulged him. What I should be doing is forcing him to be a non true version of himself, which causes him much distress, in order to fit with the unrealistic expectations of others…

I am truly terrified for my child.

#autism #PDA #anxiety #Camhs #mentalhealth #neurodiverse #SEN