Case Studies - Older Children & Teens

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Surviving A-Levels – Jo’s story

Personal Reflection: Surviving A-Levels by Jo. Jo is a PDA young adult. He studied A-Level Philosophy, Maths and English at a mainstream school and shares his personal experience here, offering valuable insights for both young people and adults. Jo reflects on some of the challenges he faced and the approaches he found helpful to overcome these challenges. He also talks about the benefits of self-awareness and how meditating helped him with this. When I was 16, I started at a new school to study for my A-Levels. It was the first time I had attended a regular mainstream school since I quit early in Year 7. My schooling for the 6 years in between had been the complete opposite to a mainstream environment, so there was no reason to believe I would do any better this time than I had previously, except for the fact that I had accepted it would happen and that it was my will. And that tends to be the struggle with PDA I think - starting. It’s probably unhelpful to hear then that in this case it wasn’t a struggle and indeed it doesn’t strike me as an example of my own struggles with PDA, but it [...]

Keira’s story

Keira is 17 and currently doing very well after a 10 year struggle with an eating disorder and difficulties related to her PDA profile not being understood or supported by health and social care. Her story illustrates the life-changing impact when professionals adapt their practice to be person-centred and PDA-friendly. Sharon Donaldson, director of the specialist eating disorder unit where Keira was an in-patient, also shares how she and her team worked with Keira and her family to develop the personalised, holistic approach which was so key to achieving a successful outcome, and is now being shared with others as an example of best practice. TRIGGER WARNING: this case study contains information about eating disorders and distressed behaviours (including self-harm) and mention of suicidal intent. Please note that Keira’s name has been changed to protect her identity. Keira was first seen by CAMHS age 5 because of the distressed behaviours she was exhibiting, including self-harm and meltdowns. Her behaviour was attributed to ‘naughtiness’ and her parents were sent on a parenting course. However, two years later Keira was diagnosed with autism and ODD - a diagnosis that was subsequently revised to a PDA profile of autism. She was excluded from school aged [...]

Winning a Blue Peter competition – Naomi’s story

Hi, I’m Naomi (age 12), I have PDA and I recently won a Blue Peter (BP) competition! The whole filming experience was pretty overwhelming but also gave me some amazing and life-long memories. I think PDAers find it really difficult to experience and try new things as we usually try to avoid change, well I know I do, but I also now know that even if you may initially think you can’t do something, due to anxiety or because you can’t predict what’s going to happen, with the right support and help you can do it! Try to tell a trusted person (mine is my mum) what you’d like to do and, like my family, I’m sure they’ll help you to do it. Yes it’s hard, I had lots of anxiety and worry over things when we were filming but I did it as deep down I really wanted to, I just needed someone to help me without it feeling like a huge overwhelming demand that I’d usually avoid. This is my story … In November 2020, Blue Peter announced their new gaming competition to design a character skin for the game Fall Guys. Three years ago I started to collect BP badges [...]

Beth’s story

Beth’s Dad Jeremy tells the devastating and disturbing story (trigger warning: this case study includes details of self-harm, restraint and abuse) of how Beth was ‘failed by the system’. Jeremy covers Beth’s early years, her 19 placements in 6 years, her first section aged 11 and her fateful move to an ATU. Despite PDA being recognised relatively early in the process, none of her care was PDA-informed, leaving Beth’s anxiety and distressed behaviours to escalate and escalate over many years. Jeremy embarked on a high-profile media campaign, but despite this and the high-level meetings and reviews that ensued, her situation worsened. Eventually a review involving an autistic advocate led to a happy ending, with Beth finally being well-supported in a bespoke community placement. Beth was a much-wanted and much-loved daughter, the first girl in the family for many years. As a baby, however, she was hard to settle, slept little and wanted to feed constantly. The social and sensory demands of toddler group proved tricky for Beth, and we felt like ‘meerkat’ parents constantly on edge, looking out for potential triggers. As soon as she started at nursery school, her behaviours escalated considerably – she was very controlling towards other children, [...]

James’ story

James is 14 and kindly shared this extract he wrote about his experience of PDA. His insightful and honest account covers how PDA can be misunderstood; masking; school; the need to have ‘demand free’ time; the importance of trust in relationships; the impact of the Covid pandemic and what helps in terms of managing his demand avoidance. Introduction Hello, I am fourteen years old and at the age of twelve I was diagnosed with Pathological Demand Avoidance (PDA). I always knew there was something about me that was different when I was younger, but my family just saw me as a ‘naughty boy’. Admittedly my behaviour was challenging but it could be made far more manageable if my family and friends understood me. I do not know who you are reading this right now, whether you have PDA, have a friend or family member with PDA or are merely curious about what it is. Nevertheless, I will try my best to give you an insight into the life of somebody with PDA. Also remember everybody is different, so everybody with PDA will have different experiences and ways of coping. PDA and autism PDA is a part of the autistic spectrum, so PDA and [...]

Agnes’ Story

During her early years at school Agnes was a model pupil - in stark contrast to the behaviour she displayed at home. Her parents and siblings struggled to understand where her outbursts of anger stemmed from. Over time Agnes’s school related anxiety increased until she began a period of complete school refusal. Her family worked hard to regain her trust and provide her with the support she required to allow her to resume her education. Agnes was in Year 2 when we first sought private professional advice to help us deal with her worrying behaviour. Maintaining a happy family life had become impossible as we tried to cope with her angry outbursts, which were often accompanied by physical violence. The psychologist was adamant that she wasn’t autistic, instead insisting her difficulties stemmed from dealing with the arrival of her brother and sister when she was a young child. It was true that Agnes often voiced her displeasure at having siblings, but this explanation still seemed incongruous to us. We found Agnes’s behaviour became increasingly challenging despite the fact that her home life had remained consistent, loving and stable. Agnes attended a mainstream primary school and throughout reception and Year 1 she [...]

Freddie’s Story

Freddie was diagnosed with Atypical Autism and ADHD just before his 12th birthday. His parents didn’t feel these diagnoses explained the difficulties Freddie was experiencing. PDA had been mentioned to them a few years previously and they adopted many PDA-friendly strategies to help him. Freddie’s family have seen vast improvements in his wellbeing and they now look forward to a brighter future together. From birth through the toddler years we had a generally happy little boy. Things changed for Freddie as he approached the age of 3. He began showing great distress and having meltdowns whenever we shopped in large supermarkets. Despite taking him immediately to the sanctuary of the car it could still take up to 40 minutes to calm him down. With hindsight we now realise he was struggling with the sensory overload he experienced in the supermarket. At the time we were at a complete loss as to how to help him through these episodes. Freddie attended a small, friendly primary school and seemed to cope well although he did earn the reputation of being a ‘character’. At the age of 7 he began to have meltdowns at school. He once tried to run away and when restrained [...]

John’s Story

Through her own research, John’s Mum felt he had many autistic traits but that there were boxes he didn’t fit. John struggled on with a non-specific autism diagnosis but school attendance was erratic and recommended strategies made him worse. After a lengthy battle and multiple diagnoses, John was eventually given a PDA diagnosis aged 12. In just a year, the difference this differentiated diagnosis has made has been nothing short of amazing. I wasn't looking for any kind of diagnosis as such to start off with, I just wanted to know what was wrong with my little boy so that I could help him. John didn’t voluntarily speak with his class teacher for his entire first year at school, and would spend the day on a computer facing a wall at the back of the classroom. Whilst in some ways he was a model pupil and followed all the rules, he would cry when he came out of school and worry about all sorts of things a 4 year old shouldn’t, for instance he worried that we’d die and he wouldn’t know who would look after him. So I went to see our GP who referred us to CAMHS. School also [...]

Michael’s Story

An ASD diagnosis helped Michael’s parents justify their need to parent differently, something they had previously felt blamed for. However Asperger’s didn’t fully or accurately describe his presentation, whereas PDA fits him ‘like a glove’. Michael’s Mum had found herself naturally adopting PDA-friendly strategies through her own trial and error. Tailored home-schooling has meant that a differentiated PDA diagnosis hasn’t been necessary for Michael. From the outset, Michael’s behaviour was unusual. He has always been very clingy to me, crying easily, getting upset if routines were changed and being very controlling. It took months to get him to settle at nursery and with the start of primary school he started to get more and more distressed. For instance, he found playtime very difficult, and didn’t like it when desks got moved around in class. Michael hardly slept and when he did he would have nightmares; he regularly begged me not to take him to school. When I discussed my concerns with school they assured me that all was well there and that it must therefore be an issue in our home life/parenting. On my friend’s suggestion we went to see at educational psychologist, who immediately suspected autism and referred me to [...]

Milly’s Story

After years of increasingly challenging behaviour, an inaccurate Asperger’s diagnosis and no professional support, my family was in complete crisis. Only through my own tenacity, the support of fellow parents and consistent use of PDA strategies have we been able to see the light at the end of the tunnel. Milly’s demand avoidance hasn’t gone away, but by finely tuning the adjustments and adaptions she needs, daily life has been largely transformed. The way PDA impacts Milly has changed over time – now a teenager, she has increasing self-awareness and is developing her own coping strategies, but she is crippled by the internal conflict of trying to comply with her own demands and wishes. Difficulties began to emerge when my daughter was approximately 18 months old. We thought that it was the terrible twos and expected it to pass in due course but unfortunately this behaviour, which at the time just seemed wilful and oppositional, continued and spread into every area of daily life. Things really escalated when she began nursery school at our local primary school. By the age of only four years old we were experiencing multiple school exclusions, including illegally imposed exclusions. Her teachers claimed that they had [...]

Dan’s Story

Because Dan masked his difficulties at school, whilst his anxiety was sky high at home and it was a daily battle to get him to attend, it was only when he ran from school that we were taken seriously. Despite school & external agencies working hard, their efforts were targeted at the incorrect diagnosis of Asperger’s and so failed. Eventually PDA was incorporated into his diagnosis and things have really turned around since joining a mainstream senior school with a specialist ASD unit. It’s been such an enormous relief that Dan is now properly understood and supported. PDA means that you need to completely change your ideas about how to parent! Looking back, I realise my first concerns about Dan arose when he attended pre-school, he was never really happy to be left and didn’t enjoy it. I remember them saying ‘If only he’d realise that we’re having fun he’d be fine!’ The first couple of years at school seemed to go OK but major issues started in Year 2 when his teacher was particularly severe and Dan became extremely anxious. I spoke to my GP about my concerns and after speaking with my son’s school I was initially dismissed as [...]

Katie’s Story

Children like Katie seem too complicated for the usual system, no one knows what to do with them. This puts all the pressure on the parents. And yet my evidence and strong belief that Katie had PDA were dismissed and my parenting blamed. Advice targeting the incorrect diagnosis of ADHD was not only unhelpful but actually damaging. A change in school leadership and attitude led to a dramatic downturn in events. But since then, using the correct strategies has resulted in a popular child who can navigate school with increasing confidence. School life was difficult for Katie from the outset, with her first exclusion at the tender age of 3. Whilst she was given 1:1 support without having had any formal diagnosis, we knew that she would need lots of understanding and support to get through mainstream education so we began the process of pursuing a diagnosis. The initial referral came with the support of our health visitor, but still it took months for any response from CAMHS and then we were ping-ponged between CAMHS and the paediatrician with each saying the other should take responsibility for Katie. We were caught up in various rounds of ‘restructuring’ which caused further delay [...]

Thomas’ Story – A mainstream school experience

Finding a school which works – Thomas’ Story As identified in our Being Misunderstood report 70% of children with a PDA profile of autism are not in school or regularly struggle to attend. This figure is much higher than for the autistic population as a whole and shows how challenging school can be for PDA children. This was the experience Thomas had on his education journey prior to joining The Link School satellite site. Both mainstream and specialist provisions had been unable to meet Thomas’ needs, resulting in a sustained period where Thomas was not able to access education. The Link School worked closely with parents to identify the support Thomas needed and work towards a positive placement for him. Today, Thomas attends school daily and is thriving in the supportive space.  Reflecting with parents and school it’s clear there have been distinct factors that have aided in this successful placement for Thomas: Outreach service – The support from the school began before Thomas even started as a student with a comprehensive plan on integrating him into the school, led by a dedicated transition teacher. Students joining at the same time were able to link up with each other meaning that they [...]

The Link School – Making PDA adaptations

The Link School – a case study on making PDA adaptations The Link School, a special Academy based in the London borough of Sutton, realised they needed to adapt their approach to supporting PDA children and young people to access education. They have explored different approaches, listened to the families and the PDA children they support and learnt a lot along the way. They now use that experience, understanding and learning to educate and work with professionals to help them understand that education systems can adapt to meet the needs of PDA students and help them to flourish. The Link School, part of the Orchard Hill College and Academy Trust, provides for 150 learners who all have a communication need which causes a barrier to their learning. Similar to other Special schools, The Link School provides an adapted National Curriculum and uses evidence-based approaches to remove the barriers to education that PDA learners experience. The school has a high proportion of PDA students - there are currently 34 students aged between 6 – 16 who meet the criteria of a PDA profile. The majority of them have had a complex educational history in a variety of education provisions. Like many [...]

Oliver’s Story – a mainstream student experience

Thank you for helping me grow. - A mainstream student’s experience Ceri Hamer is the headteacher for a mainstream primary school in Lancashire. Here she tells us about a PDA student and the help and support the school provided to them. The pupil’s name has been changed. Oliver arrived at our school right at the end of the Summer Term in Year 3. His parents said they moved him because he was ‘stuck in a rut’ and ‘needing a fresh start’. The usual transfer paperwork came through and a new system in the area actually meant children were often given places even before the families had a chance to visit. However, his written profile spoke volumes. On paper I was told to expect a boy who was ‘defiant’, ‘aggressive’, ‘argumentative’ and a pupil who ‘refused to do any work’. It stated that he was ‘under assessment’ for additional needs but the family still felt his relationship with peers had broken down too much and wanted a fresh start for him. Informal feedback from previous teachers had said he had not put pen to paper for 2 years. He showed obvious signs of high anxiety both in school and at home. But [...]

Jake’s Story – flexibility, negotiation and adaptation

Jake was diagnosed autistic with complex needs including high anxiety when he was 6 years old. Jake’s profile had a huge impact on many aspects of home life and there were many barriers to accessing any education provision for him. Jake attended a specialist provision, but this broke down in 2018 as the school used traditional approaches suitable for other autism profiles, rather than the PDA approaches and adaptions Jake needed. Jake was then offered a bespoke programme supported by a team of outreach workers and therapists who worked with him at home. Jake’s level of engagement with the team fluctuated and there were occasions when he would reject a particular visitor. One of the biggest changes over time relates to the approaches suggested for supporting Jake. The initial diagnosis focused on the importance of structure, consistency, the use of visual schedules and support, reward systems and encouraging him to understand the consequences of his actions. These approaches did not seem to have any lasting positive impact on his engagement and learning and actually began to escalate his anxiety, resistance and distressed behaviours. Two key workers from this team began to build his trust by offering a collaborative approach. Through his [...]