PDA Stories - A series of case studies

PDA is a relatively unusual form of ASD and so professionals generally haven't seen very many cases. Parents also often don't meet very many others who have children with the same issues. This series of individual stories is intended to highlight a range of experiences and illustrate what has been particularly helpful or unhelpful for families.

While every case is different, a key theme is the way in which adopting the right strategies can have such a dramatic impact on the well-being and behaviour of these young people. There is a common problem of initial diagnoses being either too general or insufficiently accurate and the pressures on parents when the problems are misunderstood are enormous. It is hoped these examples will help schools and professionals undertaking assessments to have a better understanding of this form of Autism and how the correct management can help.
 

Please use these case studies and share them with others. This resource will continue to be developed over time, and is intended to help raise awareness so that diagnoses and strategies are put into effect more quickly than has been the case for some of these children.

 
Read our stories...
 
Katie: First excluded from school at the age of 3, Katie was initially thought to have ADHD, but the routine, rewards and consequences approaches only made her behaviour worse. The family and school recognised that PDA approaches were much more effective and she was later diagnosed with ASD. School strategies such as avoiding over-preparation, and flexible uniform policies are described. Read more...
 
Dan: Initial struggles were exacerbated by use of strategies for Asperger children and a focus on attendance at school, to the extent that Dan was signed off by his GP for Year 6 because of his anxiety. A CAMHS parent trainer recommended a more accurate diagnosis, and now in secondary school, with a specialist unit who understands his needs, Dan is flourishing. His mum also recognises that over time they have had to completely change their idea of parent. Read more...
 
Will: Will's mum found out about PDA through her work as a school inclusion manager, and the description fitted her son exactly. The strategies made such a difference that she has spent time helping professionals and school staff to understand his behaviour and now feels they are all working together as a team. She is delighted that school staff were happy to work with her, rather than waiting for formal assessments that could be months away. Read more...
 
Jack: Key aspects of Jack's autism are needing to be in control, extreme demand avoidance and emotional volatility. Although he has a diagnosis of High-Functioning Autism, understanding the more differentiated diagnosis of PDA has helped develop strategies to that have worked and these are now built into his Education, Health and Care Plan (EHCP). Will is currently finding it difficult to attend school, showing how challenging it can be for these children even when their needs are understood. Read more...
 
Francisco: Initially, poor parenting was blamed for Francisco's behaviour, leaving his parents feeling guilty and stressed. In their search for answers they visited a clinician who identified PDA and gave them clear guidance and strategies. Having already missed a year of school, Francisco is now back and doing well, and his parents feel they are able to accompany him through life with greater calmness, confidence and love because of their understanding. Read more...
 
Michael: A diagnosis of Asperger's was a relief to Michael's parents, as it explained so much, but it was only when watching the TV programme 'Born Naughty' that they entirely understood what was underlying his behaviour. From age 11 they have chosen to home-school Michael so haven't sought a further diagnosis, but their understanding has validated the techniques they were using naturally. Read more..
 
John: At the age of 6 John was asking “what’s wrong with my brain, why doesn’t it work properly”. The differentiated diagnosis came at the age of 12 and has meant that he is now able to attend a special school where he is understood and helped in the right ways. Read more...

Joe: Until around the age of 8, Joe seemed to be doing well, so it was a shock when he was suddenly unable to cope and was then given an Autism diagnosis. A speech and language therapist and educational psychologist both felt that a PDA diagnosis would help, and he now manages extremely well. There has been a big impact on the family, but being in tune with Joe and having great school support. Read more...
 
Stan: Stan’s older brother has Asperger’s, and his parents recognised that he had a developmental disorder, but it was the paediatrician who identified PDA while he was still at pre-school. His Mum thought no one would believe her so argued for a formal diagnosis and that has enabled everyone involved to support Stan better, with flexibility at school and a demand-free zone at home. Read more...

Milly: After years of increasingly challenging behaviour and battling the system, Milly’s family was in complete crisis. Milly’s Mum heard about PDA on TV and immediately recognised how closely her daughter matched the symptoms described. By consistently applying PDA strategies and continually fine-tuning the adaptions Milly needs, daily family life has been largely transformed though PDA continues to present many challenges as Milly moves into adolescence. Read more... 

Zara: The moment Zara started school her previously calm demeanour vanished and her behaviour suddenly became very aggressive. Her parents knew this wasn’t naughtiness but had no idea how to move forward until PDA was mentioned. Her family has found PDA strategies to be highly effective but that PDA completely dominates traditional family life and parents/carers need coping strategies of their own to stay strong, calm and organised enough to keep things on an even keel. Read more... 

With huge thanks to all the families involved, and to writer Vikki Threlfall
 

About the case studies

These case studies were developed in response to our survey of professionals (2016) which highlighted the fact that many have little personal experience of working with individuals with PDA. Members of the PDA Society were invited to describe their experiences and parents were interviewed over the phone, their stories were written up and approved by the parent. Some names have been changed. We do hope to add more case studies over time, so please do visit again to check for updates. 
 

'This is Our PDA Story' - A series of blog articles 

Steph Curtis has featured a series of articles with real life stories of people living with PDA on her blog 'Stephs Two Girls'. This series include contributions from parents and carers, and people with PDA.  To read these please visit Steph's blog using the link here