Our journey to my son's autism and PDA diagnosis
A Scottish parent shares their family's experience navigating NHS assessments and eventually a private diagnosis of autism and PDA
Our journey towards a diagnosis for my five-year-old son has certainly not been an easy one. There have been many times throughout this process where we have felt dismissed, unheard, and passed between services without the support we needed.
I first raised concerns when he was around three years old, but I often felt reassured that there was nothing significant to worry about. Looking back now, I understand that he was highly skilled at masking his difficulties, meaning that many of his challenges were only visible at home. To others, he appeared to be managing well, but behind closed doors we were seeing a very different picture.
I reached out to several private providers and arranged private screening, which indicated that autism was a possibility. During his first NHS appointment, however, I was told that he could not be autistic because he had good eye contact and was able to give a high five at the end of the appointment. This assessment did not reflect the full picture of what was happening in that moment, he was standing barefoot after removing his socks and shoes in the waiting room and repeatedly attempting to run away.
I was also told that the challenges we were experiencing were likely due to his communication difficulties. I explained that this did not fit with what we were seeing, as the more his communication developed, the more noticeable his difficulties became. Unfortunately, I did not feel that my concerns were being fully listened to.
I requested a second opinion assessment, which was accepted, and we attended another appointment six months later. This appointment was cancelled just two days before it was due to take place, with little explanation provided, and I was advised that a further appointment would be arranged within approximately six to eight weeks. This was incredibly frustrating. I knew that nothing would change within those weeks, and I also knew that my son was continuing to struggle.
At this point, I contacted my local MP, who supported us by contacting the NHS service. Following this, I received a phone call from the head consultant, who apologised and arranged an appointment for us two weeks later. We attended this appointment, but once again we were told that he did not meet the criteria for autism. I strongly felt that he was masking throughout the assessment, and that this did not represent his everyday experiences.
Ultimately, we were moved to the bottom of another waiting list for a further assessment with another clinic. During this time, things were becoming increasingly challenging for my son. His difficulties were becoming more apparent both at school and outside of school, and they were having a significant impact on his daily life.
As parents, we naturally search for answers and hope for a solution that will help our children. We want to understand their needs and support them in the best way possible, but navigating services can often make this process incredibly difficult.
Eventually, I decided to pursue a private assessment for my son. The outcome was that he received an autism diagnosis, alongside a PDA (Pathological Demand Avoidance) profile. Hearing this diagnosis brought me back to one of my very first conversations with our health visitor, where I had asked about PDA. To have that validated after years of questioning and uncertainty was a feeling that is difficult to describe.
Waiting for an NHS assessment had, at times, left me feeling overwhelmed and as though I was constantly questioning myself. As a parent, you often know your child better than anyone, but there is also a need for professional recognition and validation of what you are experiencing.
Our private assessment experience could not have gone better. The two professionals involved were incredibly supportive and made us feel listened to and understood for the first time throughout this journey. If accessing a private assessment is something that is possible for your family, it can provide answers and support much sooner; however, I also recognise the financial barriers that many families face when considering this option.
We have already faced many challenges within the school environment, and we have only just completed Primary One. I feel both hopeful and apprehensive about the years ahead and the support my son may need as he continues through his education.
To any parent navigating life with a neurodivergent child, my message would be this: keep advocating for your child, keep showing up, and trust your instincts. There will be difficult days, and it is okay to feel overwhelmed, but please remember that you are not alone in this journey.
What is PDA? Pathological Demand Avoidance (PDA) is a profile sometimes identified within autism, characterised by an extreme resistance to everyday demands and expectations, which is often understood as anxiety-driven. It isn't currently a stand-alone diagnosis in major diagnostic manuals (such as ICD-11 or DSM-5), and not all clinicians or services formally recognise or assess for it, which means experiences of getting a PDA profile identified can vary depending on where you're assessed.