- Porscia Lam, 43, was relieved when her son Harry was finally diagnosed with pathological demand avoidance (PDA) , a type of autism
- He’d struggled for years with food avoidance, socialisation and sensory issues
- Now she’s written a book about her experience to help other parents
Here Porscia tells her story in her own words.
Arching his back, my son Harry let out a big scream.
‘It’s okay, Mum. I’ll take him,’ I sighed.
At five months old, Harry had developed crippling separation anxiety.
He’d have a meltdown if my husband, Paul, then 40, or I weren’t in the room, even with his grandparents.
This was even though my parents, Peter and Jenny, and Paul’s dad and mum, Gilbert and Glenda, had babysat him often since he was two weeks old.
He’d rejected breastmilk a month earlier, instead preferring a bottle.
At eight months, we started him on solid foods such as banana and yoghurt, but getting him to eat was a huge battle.
We resorted to feeding him when he was distracted, such as during bath time or in the car.
And he wouldn’t play with other kids – he’d just hang on to me.
‘Go on, buddy,’ I’d encourage, but he refused to leave me.
When he was 14 months old, we had a daughter, Tessa.
Harry started lashing out at her with his hands, scratching her or pushing her off my lap, so we had to keep them separated.
Harry wouldn’t brush his teeth, get into the car, or eat anything but a handful of foods, such as grapes or mac and cheese.
He refused to wear shoes and, at two, wasn’t talking.
Changing Harry’s nappy or crossing the road were full-blown battles.
Worried about his development, we took him to a paediatrician.
In August 2020, at two and a half, after months of testing, Harry was diagnosed with autism spectrum disorder (ASD), a developmental disability that affects a person’s social communication and interaction skills.
He had a little-known type called pathological demand avoidance (PDA), characterised by an anxiety-driven need for control.
It was a relief to know, but a surprise too, as he always made good eye contact with us, which wasn’t usually linked with autism.
Harry started occupational therapy, but it took two hours to dress him and get him in the car to go, as he’d procrastinate because he hated relinquishing control.
By then, he’d even stopped eating most of the 20 foods he used to, and only ate chicken tenders.
Pathological demand avoidance (PDA) is a behavioural profile of autism spectrum disorder (ASD).
It’s characterised by an intense need to avoid demands, even when the person actually wants to comply.
PDA is driven by anxiety and a fear of losing control.
What is Pathological demand avoidance (PDA)?
HIs pathological demand avoidance meant I couldn’t even take a phone call without him demanding my attention.
His behaviour impacted our marriage as well as our mental health, and I felt I was failing as a mum.
Then we read about Applied Behaviour Analysis (ABA), a scientific approach to teaching kids with ASD.
It involved breaking down complex tasks into smaller steps, and rewarding progress with positive reinforcement.
Desperate, we found an ABA clinic who sent therapists to our home three hours a day, five days a week, funded partially by the NDIS.
To get him comfortable wearing shoes again, the therapist started by having him touch the shoes, rewarding him by letting him play with his favourite action figures.
I felt I was failing as a mum
Eventually, he put his feet in the shoes and walked in them.
She also worked on other skills, such as holding a pencil and how to eat from a lunch box, all with me in the room.
By age three, Harry was confident enough to start kindy with his therapist.
He progressed quickly and, after three years of ABA therapy, along with anti-anxiety medication, Harry started school just before he turned six, without a therapist.
It felt like a miracle.
• Resisting ordinary demands, such as brushing teeth or packing a school bag
• Using social strategies to avoid demands, such as making excuses, distracting, or delaying
• Experiencing sensory overwhelm, which can lead to meltdowns and violent outbursts
What are the characteristics of Pathological demand avoidance (PDA)?
A multi-faceted approach is suggested when it comes to treating PDA that often includes therapy, education and support.
How is Pathological demand avoidance (PDA) treated?
Today Harry is almost seven, loves school and has friends.
He still only eats chicken tenders for dinner and rice cakes for lunch, so he’s on meal replacement formulas, and he still wants his baby bottle of milk when he’s upset.
But he’s funny, plays well with Tessa, now five, and wants to be an optometrist when he grows up, as he’s fascinated by glasses!
We can even now leave Harry with his grandparents or a babysitter when we need a night out.
We couldn’t be happier.
Wanting to share our story, I wrote a book about our experience.
I hope it helps others grasp this misunderstood condition, so kids like Harry can get the help they need.
