For those who are in the throes of trying to figure out if your child fits a PDA profile. I really feel for you. I know how unbelievably hard it is to access the right professionals and the right support, especially when PDA has little recognition in Australia. I thought it might be helpful to share some of the early signs that lead to us figuring out that our son fit a PDA profile. Obviously, this is just our experience, not every child with PDA will display the same set of characteristics.
Sensory sensitivities
Ever since our son was a baby, I always knew he had sensory sensitivities. He would cry if the person holding him had a loud booming laugh, or at the sound of packing tape being ripped off a delivery box. He disliked walking on grass or playing in the sand. He was sensitive inside and out, he had sensitive skin, eczema and food intolerances.
Shy temperament and social anxiety
As a toddler, our son tended to be on the shy side, he would avoid kids who had a tendency to be loud, boisterous or rough. However, he had a lovely group of close friends that he enjoyed interacting with and was motivated to see. At 2 years old, covid struck and our PDAer absolutely loved lockdown. He loved having Mummy and Daddy home all the time and nowhere that he had to be. Post-covid once the world started to open up again, he presented with severe social anxiety. I remember many times at the park where he would want to leave, or run away, just at the sight of another child.
Resistant to completing self-care tasks.
Self-care has always been a challenge. As a baby, getting out of the bath and dried off was traumatic. We always had to utilise distraction methods (singing, reading, screens, food) for putting on sunscreen, applying skin creams, cutting nails and having his hair cut. He had to be in control of brushing his teeth. As a toddler, getting dressed or changed into pyjamas would be tedious. These were all things that I put down to sensory processing differences.
Unable to consistently participate in structured activities.
There were many activities that we signed up for that would initially be ok but over time became too challenging to attend. Getting in and out of the car has always been a tricky transition too. These things became particularly challenging at 2.5years, after his little sister arrived, I was no longer able to co-regulate with him 100% of the time. Things that used to be tricky but manageable, switched to being traumatic and eliciting meltdowns. Initially, we put this down to adjusting to a new sibling.
Meltdowns
When meltdowns started to become a daily occurrence, and we encountered safety issues, like running away, we stopped being able to manage getting places safely. That was the point when I knew that there was more to it than just sensory sensitivities and social anxiety.
Autism diagnosis
We could foresee that our son was going to need more support at Kindy and School. At 3.5 years we saw a paediatrician who formally diagnosed him as Autistic. The diagnosis never quite sat right with me, but I knew that it might open doors for support. At his ADOS assessment, he presented as ‘situationally mute’ our little boy who can have amazing conversations at home, became completely unable to communicate with an unfamiliar person who was the wrong personality type. When I explained what he was capable of at home, she didn’t believe me.
So, like many families of a newly diagnosed child, we diligently booked in for therapies and put in place visual schedules and stricter routines but ultimately, they just ended up making things worse.
Severe separation anxiety leading to being unable to continue at Daycare
Our son masked his way through his first year of Daycare. He had a really responsive educator and a beautiful little friend who we now realise was paramount in co-regulating with him. At Daycare, once his best friend moved and a new child started that he clashed with, he became completely overwhelmed with anxiety. He would meltdown the night before, the morning of, transitioning into the car, out of the car, and when it came time for us to leave. Even just at the mention of Davcare, we could see a wave on anxiety wash over him. If he did manage to attend, he would only stay for a short day and afterwards he would completely shutdown at home. There came a day where he couldn’t continue, and we couldn’t continue pushing. The emotional toll was way too high. This was the point that our son hit burnout.
Discovering PDA
This was also the point, in my desperate search for answers, that I discovered PDA. I found a booklet on the PDA society website that matched up with what I was seeing at home. Resisting daily demands, a need for control driven by anxiety, using social skills to avoid such as feigning physical incapacitation, making excuses, withdrawing into fantasy, reasonable eye contact and conversation skills, comfortable in role play… This was my son.
Having a professional validate PDA
Around the same time, we had been having parent consultations with a beautiful child psychologist, who also reached the same conclusion. One day she said to me, do you think he fits a PDA profile? It was so incredibly validating to have a professional agree with us! This gave us the confidence to fully embrace radically changing our way of life to suit our son’s neurotype. Over a year on, we have the tools to in place that allow our house to be calm, and our son to thrive.
If you find yourself researching, questioning if a diagnosis sits right, questioning if therapy and school are causing more harm than good, not feeling heard, not knowing what to do or where to go for help. I see you. I know how challenging it can be. Surround yourself with mums who get it. Let me help you move out of crisis and into a place of stability.
