PDA through a parent’s eyes
My daughter has Pathological Demand Avoidance!
My daughter was diagnosed with Autism spectrum disorder (ASD) when
she was just 3, but her behavior didn’t fit a typical ASD kid so I started
looking for answers.
Why did she have this need for control!
I started researching Pathological Demand Avoidance (PDA) and came
across a book called Pathological Demand Avoidance: My Daughter is Not
Naughty and everything just fell into place.
A diagnosis was important because I want her to grow up knowing why
she is different. I know people say it doesn’t matter but it mattered to me.
Unfortunately, it comes down to cost, and I couldn’t get funding for
£3,000. The NHS in Staffordshire does not recognise PDA; it’s a postcode
lottery! But luckily it is recognised by education.
I later found out that if she had been diagnosed with ASD, with a demand
avoidance profile that would be as good as a PDA diagnosis but again, I
was unable to fund another diagnosis. Luckily, the special school accepts
she has PDA and teaches her accordingly.
PDA is still not recognised and there is a total lack of
awareness.
It’s an anxiety-based condition
Which means that control reduces anxiety. My daughter wanted to control
every aspect of her life and when she got anxious, she would get quite
violent and hit out.
The whole family felt helpless and isolated.
​I knew she was missing out on childhood experiences and there were
things she wanted to do but wouldn’t allow herself because of the demand
I had made on her. I needed to manage her behaviour better and found
that it helped to give her choices, so she feels like she is in control all the
time. This has helped with her anxiety and behaviour over the years.
I started looking into how to help
I started looking at medication at 5, it is not a decision I made lightly. But I
knew she needed help. This has calmed her down, she still has meltdowns
but her outbursts are not as violent. I have to say, this has been a
lifesaver for all of us.
We concentrate on managing her impulse for control
We do this by giving her lots of choices. ASD and PDA can conflict, the
autistic side of her likes repetition and routine but the PDA side thinks this
is demands on herself, so she battles with herself constantly!
When she was about 3 I started to struggle, going through the stages of
diagnosis is daunting and I felt lonely. No one can prepare you for how
much you have to fight to get help for your child and it takes too long.
Nobody tells you what you have to do so you have to learn quickly. But I
know one thing, I wasn’t going to stop fighting.
I was constantly fighting for my child even ringing the school myself to
fight for a place for her. It takes its toll on you as a mum. Battling to help
your child and battling your child at home. At about the age of 5, her
behaviour was extreme, it got to the point where I felt I couldn’t cope. No-
one understands what you are going through unless they are on the same
journey!
I remember one health visitor advising me to use reverse psychology even
though she was going through a diagnosis. I just couldn’t believe what I
was hearing. Nobody, not even so-called professionals have any idea what
you go through! They tell you that once you get the diagnosis, there will
be loads of help available. But it’s not true (in my case) you have to find it
for yourself.
My daughter is now older, and things are starting
to get better!
Since she has been at the Special School life has changed for the better.
not only for her but for me too! Talking to other parents that are in a
similar boat has helped enormously. There is no judgment, everyone
understands because everyone has been there or is still there.
Parents think putting your child into a special school is like giving up the
fight and yet it’s different. They still learn the curriculum they are just
learning differently.
The one bit of advice I would give other parents going through this is to go
and look at a Special school it’s the best thing I ever did! I am still figuring
out how to cope but surrounding yourself with other parents who
understand is great.
​We all need support and let’s face it our families try to help but just don’t
understand! They always want to see the positive, but you cannot ignore
the negative either. And if I hear one more person say they will grow out
of it I may scream!
Thank you to my good friend for sharing your story with me.
Created by
Clare Bailey
2020