Interview with Porscia Lam, mother and author

Interview conducted by:

Erin Leif, PhD, BCBA-D
Monash University and the Association for Science in Autism Treatment

I was so pleased to have the opportunity to talk to Porscia Lam about her son Harry and her family’s experience with early intervention in Australia. What is unique about Porscia’s story is that it took place during the COVID-19 pandemic at the time of the Melbourne lockdowns. In the middle of lockdowns and all that uncertainty, they decided to give Applied Behaviour Analysis therapy a try—and the results were incredible: this wildly creative, smart, and hilarious little boy truly started to shine.

The article references Pathological Demand Avoidance (PDA), a clinical syndrome identified and commonly described in Australia. While the research on PDA is limited, and the interaction of behaviours associated with PDA and autism remains to be delineated, this story showcases how ABA intervention assisted with these behaviours.

It’s such an honest and moving story – so much so that Porscia decided to document her family’s journey in a new book!

Erin: Congratulations on your new book, The Unlocking: An Autism Story. What made you want to write the book?

Porscia and Harry, 2024

Porscia: Initially, I started writing to record my memories, so that I’d never forget what we lived through. As the word count started adding up, I realised I was writing the story that I had been so desperate to read when we first received my son’s autism diagnosis.

Harry was diagnosed ASD Level 2 at age two-and-a-half, during the pandemic. His behaviour deteriorated rapidly as Melbourne’s severe lockdowns wore on. He stopped wearing shoes, he began dropping one ‘safe’ food after another, and the supply chain disruptions threatened our ability to get those remaining foods he still ate. We were also parents to a daughter, just 14 months younger. It was the perfect storm.

The following year, I quit my job so that Harry could begin early intervention ABA. Harry suffered from crippling separation anxiety and was unable to engage with even familiar adults unless either my husband or I were in physical contact with him. For the next three years I sat through most of his ABA sessions. The result was life-changing, not only for Harry, but our entire family.

When we were first deciding whether to pursue ABA, we found plenty of information to support its effectiveness, but very few families had shared a personal account of what ABA looked like in their home. The constant question in my head was, “What are you going to do with my son for 20+ hours per week?” My book offers a glimpse of what best-practice ABA looks like, as if you were sitting in my home watching it unfold. We witnessed Harry go through a metamorphosis that we would never have achieved ourselves. I wanted to share this story to honour the work of Harry’s clinicians.

Erin: Sharing this account, particularly for parents of newly diagnosed children is a wonderful contribution to the autism community! Can you tell us a little more about your son, Harry?

Harry and his sister Tessa

Porscia: Until the age of four, Harry was utterly stricken by sensory aversions, separation anxiety, perfectionism and a pervasive drive to avoid the demands of daily life. He would need to change his pants straight away if a single drop of water fell from his drink bottle. He would become distressed by a small amount of sideways rain spotting his car seat; the longer we kept the car door open as he avoided sitting down, the wetter it got, until eventually a full meltdown ensued.

He fought our attempts to carry out the most basic tasks, like changing a nappy (“diaper”), washing his hair, or getting him dressed. Then, he resisted learning to do these things for himself. Harry didn’t seem to get a hunger cue from his body, so eating was an activity that relied completely on external prompting, which he also resisted. He avoided eating by pointing out imperfections in his foods, like chicken tenders that were not uniformly crumbed, or grapes that bore a blemish (in the days that he still ate grapes).

One of Harry’s psychologists mentioned Pathological Demand Avoidance (PDA). When I read the PDA profile of autism, that finally made his entire autism diagnosis make sense. He had all the classic markers of PDA, including language delay followed by a quick catch-up, a preference for novelty, an unbending need to be in control, and being more comfortable in role play than reality.

We harnessed this penchant for role play to teach him skills he otherwise refused to learn. Entire ABA sessions were spent pretending to be characters from The Avengers and Harry Potter – the therapists, too. In this way, he learned to do things like holding a pair of scissors, waiting his turn in a game, and taking instructions from a teacher. When he performed these tasks in character, it was less of an infringement upon his autonomy. Eventually, when the skill was mastered, he was able to do these things just as Harry.

I still see a lot of Harry’s demand avoidance today, but for the important functions, things like going to school and self-care, he has put in a tremendous amount of work and found comfort in the routines we have in place. These days, as a six-year-old, Harry is playful, imaginative, bossy, and a daredevil. He’s a happy kid.

Erin: Thanks for telling us a bit more about your early experiences and concerns, and how things changed for you and Harry following early intervention. We know that finding the right type of early intervention can be hard for families. What challenges did you experience when first trying to access early intervention for Harry?

Porscia: Initially, the pandemic presented the greatest challenge, because all appointments, if we were able to even get one, were online. That really didn’t work for a two-year-old PDA kid who needed to be in control of the device. Harry spent the entire appointment hanging up on our video calls!

Once we got into a face-to-face ABA program, things improved. The main challenge then became juggling ABA with our jobs. Harry had severe separation anxiety. He had a strict routine about when we could let go of his hand when other people were around, even grandparents. Whenever I took him out, I had to find ways to open doors and get my wallet out of my bag one-handed because I simply couldn’t let go of his hand.

It wasn’t an option to get a babysitter or grandparent to attend his 20+ hours of ABA. I ended up quitting my job to sit in on three years of ABA. Parents aren’t usually required to participate, but in our case, I had to. Harry demanded my full attention in the sessions, which is a common PDA trait, so I couldn’t be distractedly typing on my computer or looking at my phone. It impacted my career, but I ended up absorbing a lot of ABA principles, and I was able to contribute ideas and observations to the therapists. It ultimately magnified the effectiveness of the early intervention.

Erin: In your book, you talked about reading the many criticisms of applied behaviour analysis (ABA) on social media. What made you decide to try an ABA-based therapy program with Harry?

Porscia: By the time we heard about ABA, Harry had already seen a number of psychologists, dieticians, and occupational therapists; we had started these appointments before the official diagnosis. Our experiences there showed us that a 45-minute appointment once a week was not going to make a dint in any of the challenges we were facing with Harry.

One of Harry’s PDA traits is to procrastinate to avoid demands. He was taking up to an hour just to get into or out of a car for appointments. We were desperate for someone to come to us, to witness what unfolded in our home, including the very physical dynamics with his little sister, the trauma of mealtimes, and all the other things that you cannot recreate in a clinician’s office. Most of all, we needed a lot more time than 45 minutes once a week.

We read the criticisms and regarded ABA warily for some time, but we had tried all the first line approaches, with no success. In the end, we reasoned that if we were watchful and involved parents, we would be able to tell whether the therapy was the right fit for Harry. I was buoyed by the recommendations from respected autism experts about modern ABA, and the body of evidence supporting it. Although there weren’t many detailed accounts from parents about ABA (and I’m hoping my book can help fill this void), I was surprised by the number of ABA professionals I came across who had joined the profession after experiencing success with their own child. I took that as the ultimate endorsement.

Erin: Thanks for sharing your experiences with ABA. It can really help other parents. In your book, you wrote so openly and honestly about the challenges and successes of your journey with Harry. Can you tell us more about Harry’s successes, and what Harry is doing these days?

Harry on the ropes course

Porscia: We had our first big success four months after starting ABA. Harry had stopped wearing shoes nine months earlier. In the middle of Melbourne’s lockdowns, when playgrounds were shut and we were allowed out of the house for one hour of exercise each day, Harry couldn’t even do that. We had to carry him on our walks around the neighbourhood.

Our therapists implemented a clever “shoe program.” They broke down the steps involved in wearing shoes to the smallest parts possible, so small that even Harry couldn’t believe he was going to be rewarded for performing the task. It started with him touching the shoe, putting his foot in for a second, five second, ten seconds. Taking a step, two steps, and so on. We prepared some very high-value rewards that were used only for that program, and it worked! It immediately improved Harry’s quality of life. Suddenly he could chase magpies and climb trees, a luxury during the pandemic. Last year we took the kids to the snow and Harry patiently got fitted for ski boots, the most uncomfortable piece of footwear in the world and then he learned to ski!

An even bigger success was starting school. Everything about Harry, from the time he was five months until he was five years old, suggested that he would be a case of “school can’t.” Last year, following two years of attending kindergarten part time with an ABA therapist present the entire time, Harry started mainstream school, without an aide. His kindergarten teachers worked with his ABA therapists and us. Every few months he gained a little more independence, and we pushed him a little further.

Harry was really into Harry Potter at this time, so we motivated him with rewards like a broomstick or a wand, so he could fly through the gates of his kinder pretending he was going to Hogwarts School. We had exceptional kinder teachers who were open minded and flexible. On our paediatrician’s advice, we also started a low dose of anti-anxiety medication and that saw his school-readiness really skyrocket.

Last year, school was a 10/10 experience. He loved his teacher, he was engaged in class, he had a lot of friends, and sometimes he took the role of class clown. There were still things about school that were tricky, like trying to find enough things to pack in Harry’s lunchbox, or getting him to do his homework (he’s less compliant at home), but overall, Harry’s journey to school-readiness is triumphant one.

Erin: It is great to hear about Harry’s journey! I’m so glad he loves school. Based on your experience, what advice would you give to other parents of newly diagnosed children with autism or PDA?

Porscia: For parents who see PDA traits in their autistic child, my advice is not to limit yourself to the view that the strategies used to help children with autism generally, can never work for PDA. That is the prevailing commentary that is on the PDA forums, but adopting it without testing it yourself, is unnecessarily limiting. In the absence of clinical literature on PDA, the forums are a good way to learn of other people’s observations and ideas, but a handful of contributors have some very strong views, so try to stay open-minded.

For parents of newly diagnosed ASD children, the most important lesson that I have learnt is that success is all about trial and error, and regularly re-assessing what is right for your child. It’s really disheartening when you try one therapy, or one clinician, and it’s not the right fit. I remember feeling a lot of angst about the time “lost” in trying an unsuccessful therapy, but I now understand that is just part of the autism journey. We’re now on the flipside of that and have decided to wind down Harry’s ABA. That has prompted us to reconsider other supports that were unsuccessful years ago. Psychology wasn’t useful for Harry as a two-year-old, but now that he’s approaching seven, we are reassessing.

The first year or two after receiving the diagnosis can be tough. You are unlikely to hit the bullseye straight away, but when you find the things that work for your child there is a lot to look forward to.

Erin: Thank you so much for sharing your story with us, Porscia. Your openness, resilience, and advocacy shine through every part of your journey, and I have no doubt The Unlocking: An Autism Story will inspire and empower countless families. I look forward to staying connected and following Harry’s continued adventures.

The Unlocking: An Autism Story, published by Kind Press, will be released in February 2025. You can read a free extract on the Kind Press website.

Reference for this article:

Leif, E. (2025). Interview with Porscia Lam: Mother and author. Science in Autism Treatment, 22(3).

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Interview with Porscia Lam, Mother and Author