A whistle stop tour through my life with my PDA boy and what I have learnt along the way

Let me tell you about my PDAer…at 17 years old he dances, sings, thinks up jokes, is affectionate, punches me, is super smart, upends furniture, makes up gaming and TV show characters on the double, throws urine, sleeps like a dream and tells me to go ‘kill myself’. I love him more than I can express in words.

If you didn’t already know, a PDAer is someone with PDA, Pathological Demand Avoidance, a diagnosis that lives on the Autism Spectrum and yes, my son really has punched me, thrown his urine at me and told me to go kill myself. 

But he can’t help it.

I’m not sure whether I wrote the below myself or I have picked it up from an online resource (I collect sooo much of it!), but I found this very clear and helpful.

“PDA generally speaking means that the child in question has trouble following instruction, and instead comes up with every excuse under the sun to NOT do what is demanded of him. He does not do this because he wants to be annoying, naughty or attract attention, he does this because a direct demand comes with expectation, and it’s these expectations that shuts down or disables the brain he is literally unable to comply.”

My PDAer once explained it like this, “I think I'm dreaming that I'm a kid but I’m actually a grown up and I need to die suddenly in my dream so that I can wake up and I can be a grown-up again, this is all just a bad dream!”

You could look at PDA in children as a very simple mechanic in the brain. The need to be in control, you are no better than me and you have no power over me. They are your equal. A grown up in a child’s body, but without the independent skills of a grown up, until they are a grown up of course.

It is of course more complex, an anxiety driven need to be in control where any demand, however small, can feel like someone or something else has an invisible power over you, and they, or it, are winning, and that is just a No No for anyone with PDA.

What were the first signs of PDA?

Well, if school refusal, wrecking the deputy head’s office and smashing the gym teacher over the head with his lunch box weren’t already concerning, on his first day at a new mainstream school, (because we relocated due to my marriage breaking down), he bit a teacher, he was five. After a few more incidences like this, he started to get assessed, first by the Educational Psychologist, and finally after three years of more biting, hitting, kicking and throwing paint, by CAMHS. This is the summary in the CAMHS report (Nov 2015) that came with our son’s diagnosis of ASD, PDA and ADHD.

“This is an eight-year-old boy who is functioning at a very high level intellectually. However he is not meeting his potential academically due to significant behaviour difficulties at school, which have led to him being permanently excluded. His parents are also having considerable difficulties managing his behaviour at home”

When he was very young he said some things that from the beginning caused great concern, but we didn’t understand where they were coming from, like “I wish God hadn’t made me”, “Mum I feel all frizzly”, “Mum there's something wrong with me...but I don't know what. Cos I don't want to tidy my room.”, “I feel empty in my belly when I don't want to do something”.

Trying to get him to do his school homework was a losing battle, and I eventually stopped doing it with him (after getting permission from school) when he got creative and made a placard with what he could find lying around the home. It said…

NO to HOME WORK!

School is for work

Home is for relaxing

And he paraded it around the living room

Taking my son out of school

By Feb 2020 his father and I (although separated we tried to be a united front and continued parenting apart) found that his specialist secondary school (he was in year 7) was failing him as they were just traumatising everyone concerned by their lack of understanding of PDA, and after 11 exclusions we took him out. 

We were tired, spinning on the spot, pulling our hair out and wondering, where did it all go so wrong? And mostly, how can we help our boy, and where is the school for our son?

Since then in the last five years he has been out of education, not for want of trying off course, but that story is for another time…

Since he’s been ‘unschooled’, often people say to me, “So you’ve been homeschooling him all this time?”, and I say, “Well I wouldn’t call it homeschooling”, because in those five years he has been on a diet of YouTube and Gaming. 

Perhaps if you are new to all of this you are thinking, “You are a terrible mother!” And my friend just asked me, ‘But how did he learn to read and write?’

Self-directed learning by default I would say. He is actually completely literate, in writing and reading, extraordinaire eloquent and can function independently managing his own bank account, washing, brushing his teeth twice a day, getting dressed, helping around the house (but only if it’s of his own volition) and enjoys public transport on his own.

Introducing medication to support my son

Very early on when medication was brought up as an aid for helping him behaving at school I asked him if he would like to be able to take a pill that took his PDA away… he responded with “I like My PDA…it’s like my own special pet”.

It is a worry to start messing with a young brain while it is still developing. I myself have been on Anti-depressants for more than 10 years and they were a game changer for me, so putting my son on medication perhaps wasn’t as difficult a decision for me as it might be for some.

And ultimately it has helped, but it has been trial and error and only recently while on a non-amphetamine based ADHD medication he became so aggressive and vile that he punched me in the face, was arrested and…..well lessons were learnt all round, and we are actually all in a better place because of it. I did not press charges.

Managing my finances

The impact on our lives has been mostly emotional but let's not forget finances. They have been hugely affected because of not being able to work full time, and relocating to a council where there is more support, while trying to ‘homeschool’ my son. I work part time, employ a part time carer, and luckily get top up from benefits, helping us scrape through. I am a problem solver though and have had to do a lot of thinking outside of the box, in terms of a new career that fits around the needs of my son. I am now in education and work with SEN teens, which is bit of a busman’s holiday to say the least, but although it can be brutal it is also is hugely rewarding and for want of another word, educational.

It just dawned on me that with all the literature and online resources and support groups and well-meaning professional that I have engaged with, I have just kind of given my son time and space to figure himself out, and with the help of medication that allows his brain to function better, I do believe that a new window of opportunity seems to be slowly opening and hope hangs around the house a little longer every day.

Written by an anonymous parent member of the network