Struggling behind the smiles
When I look at this photo, I have mixed emotions. We took this picture on a holiday in the Scottish Highlands, but behind the smiles, my husband and I were struggling.
Our beautiful little boy had to be in control of everything or he would have huge and violent outbursts of anger. ‘It’s just the terrible twos’, people kept saying, but we knew it was more than that. This wasn’t a tantrum; this was like a wild animal fighting for his life. We could see his distress, but felt completely helpless and lost. We didn’t know what was going on or how to help him.
He doesn’t seem autistic…
My husband wondered if our son was autistic, but as an Occupational Therapist working with autistic children, I thought I knew the signs. And our son defied every stereotype. He was articulate, imaginative, and sociable, nothing like how I thought autism presented.
Meanwhile, experts inundated us with well-meaning advice and parenting strategies, but setting stricter boundaries only made things worse. Our relationship with our son was fraught, and we just longed to understand him and how his brain worked.
Discovering Pathological Demand Avoidance (PDA)
A couple of years later, a friend told us about Pathological Demand Avoidance (PDA) and everything clicked into place. As we read through information on the PDA Society’s website, everything they were saying described our son. Finally, things started making sense. After years of feeling like terrible parents and being gas-lit we realised that we weren’t alone and we weren’t crazy.
Armed with this information, we began the slow (and continuous) process of changing our parenting style — negotiating, compromising, using humour and making fewer demands. As we forged a more equal relationship with our son, our connection with him improved and he started showing us more affection and less aggression.
A diagnosis and problems at school
We started the painstakingly slow journey of getting an autism assessment[1] and just before our daughter was born, our son received a diagnosis of Autism Spectrum Disorder (ASD). The diagnosis didn’t provide us with any additional support, but it did provide validation and gave us leverage to advocate for him.
Services, and schools, shouldn’t need a diagnosis to meet children’s needs, but the reality is that they often do. Having the diagnosis made it easier to ask for and get adaptations at school, but sadly despite everything his teachers put in place; they weren’t willing or able to reduce the demands enough.
The Education Health Care Plan (EHCP) process was underway, but it was a case of too little too late. After a term of emotional based school avoidance (EBSA) and trauma for the whole family, he stopped being able to attend school[2].
Life continues to be very challenging, but we are so grateful that we have the knowledge, understanding, and community that we do. We have been able to make significant changes to our family life to accommodate our son, and he is much happier than he used to be.
We are seeking an Education Other Than At School (EOTAS) package for our son and are beginning the long journey of getting assessments for our daughter.
A professional in your corner
My experience as a parent has completely changed how I practice occupational therapy. Over the years we have met some fantastic professionals who validated us, encouraged us, and shared nuggets of wisdom with us. We have also dealt with many who gas-lit us, blamed us and were really unhelpful.
I’m passionate about doing what I can to use my skills in helping other families to get the diagnosis, educational support or adaptations they need. Just as we had professionals who validated and encouraged us, I want to be that professional for others.
If you are looking for an Occupational Therapist to be an ally in getting the support you and your family need, please get in touch. I’d love to see if I can help.
[1] Most health services in the UK currently do not recognize PDA.
[2] His case is far from rare – 70% of children with a PDA profile of autism are not in school or regularly struggle to attend according the PDA Society’s ‘Being Misunderstood’ report.