Case Studies - Adults

Many of our adult cases studies are from adults who were often not aware of being on the autism spectrum until later in life. Many may have tried to cope with their difficulties, very often beginning in early adolescence, by self-medicating or engaging in risky behaviours. This is common for individuals who are not diagnosed and are therefore unsupported and misunderstood. We hope that our case studies illustrate the benefits of their understanding of their Pathological Demand Avoidance.

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Helen’s story – PDA in families and deciding to home educate

Helen self-identifies with a PDA profile and sees the same traits in other family members including her daughter and her Mum, with mutual understanding across the generations having led to an instinctively collaborative and compassionate approach to both parenting and education. Passionately believing that our education system is not fit for purpose, despite being a highly qualified education professional, Helen has chosen to home-educate her daughter and describes the process as a ‘dance that goes back and forth and a journey of trust’. This is their story … I discovered PDA at around age 40 and initially dismissed it as yet another attempt to pathologise what I deemed to be pretty ordinary behaviour. I’ve always strongly wanted to avoid every day demands, found other people very confusing, had periods of intense focus, struggled with mood and been really good at playing various roles to get by in the environments I found myself in – I just assumed this was everyone’s experience! At age 41, I came back to it – by now my daughter had reached compulsory school age and, just as planned since she was 18-months old, she is home-educated. The decision to home educate had nothing to do with [...]

Jim’s story

Jim is a 33 year old PDAer and has worked at Waitrose for 7 years. He likes to raise awareness of PDA and share his story so that parents know that things can turn out well for their child despite how challenging circumstances may be along the way. Jim also shares details of his time at school, masking, developing the skills to live independently and his love of writing and driving. I’ve been working at Waitrose for seven years. It was my Mum who suggested I apply for the job originally because Waitrose is known for being inclusive and taking care of its staff, and because the store where I work is local to me. I worked my way up, starting with a few hours on a Saturday, then taking on some evening shifts. When a full-time worker left, my manager was delighted for me to take over the role. To feel valued and be called a ‘key player’ at work is really special. People wonder how I cope with being told what to do. I do still have a bit of a feeling inside when I’m told to do things, but I’m very meticulous and pre-prepare things to make sure [...]

Tim’s story

Tim hadn’t heard of PDA until his youngest son was diagnosed with this profile of autism two years ago. During his son’s assessment Tim realised there were parallels with his own life. He was referred to adult mental health services by his GP where he was told that despite displaying clear autism traits, he would need to be assessed privately in order to receive a diagnosis that included PDA. After undergoing assessment at Help for Psychology in early 2019, Tim was diagnosed with autism with a PDA profile at the age of 59. Tim has a successful career within the stainless steels industry and is currently the Secretary-General of the International Stainless Steel Forum. He is sharing his story in the hope it will help young adults with PDA who are navigating their way through the education system or beginning their careers. Being diagnosed with PDA came as a relief to me as it helped me to make sense of some of the difficulties I’d faced growing up. I’d always been aware that I struggled more than my siblings and peers in certain situations and learning about PDA has helped me to understand why that was. I grew up in Sheffield [...]

Ben’s Story

Years of being misunderstood led to one failed placement after another before Ben was eventually sectioned age 29 and spent 3 years in an ATU. His first supported living placement was too unstructured with serious repercussions for Ben’s health and wellbeing. Under the Care Act 2014, Ben’s family now manages his community care package. Their commitment, combined with new understanding of what approaches would be helpful following Ben’s PDA diagnosis, has resulted in an amazing quality of life that no one would previously have thought possible. Ben’s sister shares his story … After years of struggling with being labelled as a naughty child and poor parenting being to blame, Ben was diagnosed with Asperger’s aged 21. Over the next eight years all local education, supported employment and day placements, along with all relevant learning disability and mental health respite, residential and support living settings in the vicinity, were tried and failed. Every placement was set up to fail because inappropriate strategies were being used that inflamed the situation, escalated Ben’s anxiety and exacerbated his ‘challenging behaviours’. His spikey profile meant that he seemed very capable on the surface, but he didn’t have the skills to keep up with people’s expectations. Services showed [...]

Tony’s Story

Tony is 40 and lives in the U.S. He has a diagnosis of ASD with co-morbid Generalized Anxiety Disorder and Complex PTSD. He identifies strongly with PDA and has been reducing demands in his life so that he can lower his anxiety levels. His long-term goal in life is to be a moto-vlogger and plans to use this platform to discuss the PDA profile and highlight mental health issues. Here is his story… To give some family background, I am the oldest in a family of five boys. Though my father contributed financially, he traveled extensively for work and was therefore largely absent from the daily grind of family life. My mother, insisting that she have a large family, was consequently left with the burden of raising us more or less on her own. Though she may fall on the autism spectrum herself, she was from a family where the concept of “mental health issues” were considered a weakness, something to be kept to oneself, something to be ashamed of, so she never sought a diagnosis for herself, or her children. Two of my brothers may fall on the autism spectrum as well, but they carry the same view [...]

Mark’s Story

Mark ‘built masks*’ and ‘faked neuro-typical behaviour’ all his life whilst struggling under the surface with social interaction and unable to find a settled home or work life. Mark was diagnosed with autism aged 50 and self-identifies with a PDA profile. But lack of recognition of this more atypical form of autism leaves him feeling misunderstood with no services and support that can meet his needs. Mark writes poetry to convey his feelings of isolation. *Mark’s story includes several mentions of masking. Masking is when a person suppresses their natural behaviours in order to conform to perceived social norms. It is a coping strategy that some individuals on the autism spectrum adopt, be it consciously or subconsciously. I built my first mask at the age of sixteen. I adopted roleplay scenarios where my spontaneity would be construed as planned humour. I never excelled at sport but participated in every sport that I could and learnt the rules of the ones that I couldn’t. All this in order to get rid of excess adrenalin and fit in. I knew the rules of every sport and game but could never get the intricacies of being social right. I was never bullied because I [...]

Julia’s Story

Julia was diagnosed with PDA by Elizabeth Newson aged 12 after her increasingly challenging behaviour resulted in school exclusion and social isolation. Now in her early 30s, Julia recounts the impact PDA (and her co-morbid ADHD) has had from childhood onwards and how increased self-awareness and connecting with other adults with PDA has helped her make sense of her life. When I read my old school reports now it was blatantly obvious I had PDA – they’re full of descriptions of me wanting to negotiate, be in charge, not having any boundaries. One head teacher’s comment was that ‘the tail continues to wag the dog’. I went to a Montessori nursery because Mum realised playgroup wouldn’t work for me, and whilst I had a few difficulties there it was nothing exceptional, especially given my age. However two weeks into reception class at school, I caused a real rumpus because I refused to colour Billy Blue Hat’s hat blue! Things went downhill from that point onwards. I had regular meltdowns, trashed classrooms, got into fights. A school nurse described me as a ‘very disturbed and disturbing child’ aged 7 or 8. I got fewer and fewer invitations to tea or to parties [...]

Sally’s Story

Sally was diagnosed with autism in her 40s and through her own research self-identified as having a PDA profile. She felt empowered by the self-awareness that her diagnoses enabled and eloquently describes how this has helped transform her life whilst also explaining how PDA impacts her every moment. Sally also movingly recounts her struggles as a child and young woman and how she always felt like ‘a squiggle-shaped peg that fits none of society’s round holes’. I’m a PDA Mum with a five-year-old daughter who is also autistic. I was diagnosed with autism just over three years ago when I was in my 40s. I found out about PDA after my diagnosis and joined a Facebook group for adults with PDA to learn more about it, as all the published information seemed to describe children, and aggressive volatile ones at that. I wasn’t like that as a child. I learned from the Facebook group that many others weren’t like this as children either but that I fit the PDA profile. I was the middle child. My younger brother was born when I was seven, so I was the youngest child until this point and my older brother used to show me [...]

Peter’s Story

Peter’s primary school years were a nightmare and his behaviour at home took a toll on his whole family. Lack of support and fighting the authorities added to the burden. Eventually his parents made the heart-breaking decision to request a residential placement for Peter. With experienced support staff who all have PDA training and make appropriate adjustments, Peter went on to thrive in this environment and now aged 22 is leading a happy and fulfilling life. Post-18 provision has been a further minefield for the family to negotiate. Peter is our third child, and from the moment he was born I knew there were underlying difficulties. He never slept for more than 20 minutes at a time, day or night, until he was three and his development was delayed across the board. My sons were both diagnosed on the same day by a community paediatrician – Peter aged 4 with autism and his big brother aged 7 with Asperger’s. Whilst I was relieved to have some explanation for their challenges, I wasn’t given any information, support or advice. I also queried Peter’s diagnosis since I had understood that children with autism had difficulties with imagination, whereas Peter thought he was [...]

Riko’s Story

Riko was diagnosed with Asperger’s aged 27, and through her own research realised that PDA was the best fit for her profile. Looking back, Riko realises how much she masked her difficulties and found her own ways to accommodate for them, though she also experienced periods of deep depression due to not understanding the underlying reason for these difficulties. With the insight that has come from an accurate diagnosis and embracing the positives of PDA, Riko has found effective coping strategies and writes a blog to help others living with PDA. I never knew I was different as a child. From a young age I did get the impression that people were scared of me, but I didn't know why. I also got the sense that I'd done something wrong at some point but struggled to remember what. I was the second eldest child of five to a mostly single mother and life was pretty hectic. We moved many times during my childhood and men came and went from the house regularly. Throughout childhood I was closest to my second brother, with only a year between us. We would fight and play with equal intensity. What I didn't realise until [...]