Sam and Michael's Story

In their own words, Michael’s parents explain what it is like living with a child with PDA.

Before diagnosis, nine year old Michael Parsons came across as a naughty, spoilt boy; out of control and with a lack of parenting. Michael had been excluded from his Primary school on countless occasions.

Pre-diagnosis Michael Parsons was deeply unhappy, trying to hurt himself and others.

Today, Michael’s behavioural, emotional, and social well being are vastly improved. He is very competent at a number of sports, is interested in art and obsessed with gaming. With a lot of support in place, Michael, and his family, are thriving. 

 “We know now, that in our desperation to help Michael and our lack of knowledge of Pathological Demand Avoidance (PDA), we used the wrong strategies and made matters worse, making our son feel humiliated, angry and isolated.”

The parent child relationship was breaking down, and the family didn’t know where to turn.

Sam Parsons, Michael’s Mum, continues; “Michael’s behaviour at his primary school rapidly became a cause for concern for the school and for the family.  The school asked for help from outside agencies but this made little difference. Michael’s behaviour, self-esteem and well-being quickly deteriorated. Although Michael was referred for assessment, we were desperate for answers and didn’t feel we could wait for 6 months. With help, we paid for a private assessment and Michael was diagnosed at age 6 – a critical turning point in all our lives.”

A little known diagnosis, relief wasn’t immediate for the family.

“We had never heard of PDA and couldn’t find any post-diagnostic support, either for Michael or ourselves. There is still little understanding of PDA in schools, the health service and social welfare services. Thankfully there is a lot of work being done to raise awareness of PDA and there are specialists who are working hard to increase the understanding of the condition.”

Following diagnosis and Michael’s Statement of Special Educational Needs he now attends a special school which focuses on experiential learning which has rebuilt his confidence in the education system and he is now a keen learner, accessing the curriculum and making good academic progress. There is also a lot of support for Michael’s social and emotional development in place and he has changed beyond recognition in this area.

“We are on a lifelong journey with Michael to help him learn what sort of behaviour is appropriate and how to express himself so other people can understand and help him. Like autism, PDA is an invisible condition, and often presents even greater complexities than many other disabilities. Life is demanding and unpredictable, but we are an incredibly close family and have developed a deep understanding of Michael’s PDA.”

Using techniques and strategies that are PDA friendly have shown us how big an impact this has had on Michael’s outcomes in life. Having the right support has had such a positive impact on Michael’s well-being, our ability to function as a family and Michael’s potential to become all he can be in life.

Sam continues; “Our dreams and hopes are that Michael will be able to live a fully independent life and make his own choices about work, relationships, home life and free time. These are things we all take for granted but which children with PDA find phenomenally challenging. We are adamant that Michael will not be another statistic of those on the spectrum that suffer from mental health problems. Everything we do is about enabling Michael to be fully functioning and independent with as much to offer the world as he has already given us.”

Sam Parsons will be presenting at the Wessex Autistic Society’s Pathalogical Demand Avoidance Conference, being held on 16 May 2012 at AFC Bournemouth. 

With Professionals, Phil Christie and Ruth Fidler, and Parent, Sam Parsons. Hear the latest research, achieve a greater understanding of PDA, learn strategies and techniques that will help you support people with the disorder, both in school and at home and learn what it is like to live with a child with PDA. For more information Click Here