Case Studies
This series of individual stories is intended to highlight a range of experiences and illustrate what has been particularly helpful or unhelpful for individuals and families.
While every case is different, a key theme is the way in which adopting the right strategies can have such a dramatic impact. 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 approaches 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 and adults.
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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 [...]
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 [...]
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 [...]
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 [...]
Q&A with Sage – teenage PDAer
Q&A with a PDA teenager Sage who volunteered to answer questions posed by the online PDA community on a variety of topics. Sage wants to “help people understand that there’s light at the end of the tunnel and that PDA can be managed when it’s understood properly.”
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 [...]
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 [...]
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 [...]
In Mainstream School – Rob’s Story
Adopting a PDA-friendly and holistic approach to education together with a totally individualised curriculum and a reduced timetable has been ‘transformational’ according to Rob’s head teacher. His one-to-one teacher shares his journey and some top tips for others.
PDA diagnosis & inclusive approach enable Rob to thrive in mainstream school
When Rob arrived at school, he couldn’t integrate into the class setting and it was clear that he had some differences and difficulties. The high levels of noise and activity proved very disorientating for him and often resulted in meltdown. Whilst Rob demonstrated a strong grasp of most subjects, even basic educational tasks and activities caused distress and anguish.
However, without a formal diagnosis, his individual needs couldn’t be met and access to resources, such as one-one support, remained a closed door. After two terms, his anxiety level became so severe that his Mum decided to remove him temporarily from school until appropriate support could be accessed and funded.
Rob’s Mum had a difficult journey through the diagnostic pathway, eventually securing a diagnosis of autism featuring PDA. School life continued to be turbulent and, after repeated hearings, an EHCP (Education Health Care Plan) was obtained with funding to grant Rob access to [...]
Southgate Community Special School and Finley
As a class team we are constantly striving to improve our own practice and think of exciting and tempting ideas to engage Finley in learning activities. We have learnt so much from this journey but know we have so much more to learn too, most importantly though we have had a huge amount of fun and enjoyment in getting to know this wonderful young person.
This case study has been written by Aileen Hosty from Southgate School, a Community Special School in Huddersfield in partnership with Finley’s Mum.
Background
Finley was a bright, smiley and playful baby. He was always very active, agile and determined and could easily get out of his cot if he wanted to. As a baby Finley ate well, but became fussier as he got older. At about 2yrs old Finley started to have some difficulties around joining in with play and interacting with others; he also showed signs of being overwhelmed when in a large group. Finley also started to choose when to follow instructions, rather than when it was requested. Potty training and using the toilet were difficult (and continue to be so) for Finley. He was reluctant to leave his mother, and wanted to be [...]
Jupiter Free School and Arijana
Arijana’s classmates have adapted with ease and were very accepting that Arijana was ‘learning how to be in school’. This is in no small part down to the strong values and culture that permeates the whole school and the recognition that good practice in SEN education is good practice for all children.
Thank you to Arijana, her Mum Danielle and the team at Jupiter Community Free School in Hemel Hempstead for sharing their story in the hope that it helps others.
Arijana
Arijana is 6. She loves riding her bike, swimming and gymnastics. She learns best by teaching herself new skills, such as drawing the subject of her current top interest the Titanic by following a YouTube tutorial. Arijana would like to be an artist when she’s older.
Arijana attends Jupiter Community Free School.
“As a Free School, we have some freedom to build our curriculum and culture and in this context we have developed an open approach to SEND and a nurturing, rather than a behaviourist, approach to children's well-being,” explains Neil Jones, the school’s Principal.
Crisis point
Neil’s introduction to Arijana was at a Child in Need meeting after the school was named in her EHCP. This multi-team meeting marked the family’s crisis point [...]
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 [...]
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 [...]
James’ Story
James was a lively toddler with an inquisitive nature, though his family recognised early on that some of his behaviours weren’t typical for a boy of his age. He managed to attend school up until year 3 at which point James’ anxiety levels became very apparent, and his negative feelings about school intensified following episodes of restraint. James’ Mum recognised similarities between his presentation and the children diagnosed with a PDA profile on the Channel 4 programme ‘Born Naughty’, and James was eventually diagnosed with ASD and co-occurring anxiety. His family have worked hard to support him and provide the best environment for him to be able to continue his education at home.
When I reflect on life with James as a baby I can now better understand the challenges we faced. He was difficult to settle and never managed to sleep through the night. I breastfed him and he would suckle for lengthy periods of time, which I now recognise as him trying to meet his sensory needs. When I carried him it needed to be in a precise way and if I got it wrong we would have to begin again. We could be caught in this loop [...]
Stan’s Story
Already having another child with Asperger’s enabled Stan’s Mum to really understand the differences with PDA, both in terms of how it presents and in terms of handling strategies. Having persevered in order to obtain a diagnosis of ‘atypical autism with PDA traits’, Stan’s Mum then trained others in the use of PDA-friendly strategies to great effect. However demand avoidance remains Stan’s ‘default setting’, in times of stress.
Stan’s older brother has Asperger’s, and we had a sense of déjà vu when he was about 2. He didn’t seem as obviously ‘different planet’ like his brother, but definitely had a developmental disorder of some kind. He enjoyed pre-school and was cooperative when there, but was extremely reluctant to attend. Initially he had some audiology testing, and then aged 3 was seen by the same neurodevelopmental paediatrician same who had diagnosed his brother.
After a few visits she suggested PDA. I looked it up and it was him all over. We researched PDA fully, applied the theory and family life improved immediately. Once I realised that PDA was such an accurate fit for Stan, I knew that I would need a formal diagnosis to back me up or nobody would take any [...]
Joe’s Story
Joe had managed to mask at school until expectations increased in Y3 when things went rapidly downhill. An initial diagnosis of Asperger’s, dyspraxia and sensory processing disorder (SPD) was refined to PDA; Joe was also prescribed low-dose Prozac to help with his anxiety. These together with a close and open working relationship with school have enabled a dramatic turnaround and Joe has made astounding progress. Joe’s PDA impacts his whole family and has necessitated a real change in parenting style.
I honestly didn’t think anything at all was amiss with my son until he had a major breakdown when he was nearly 8. Looking back now, I can see a few things that I didn’t notice at the time, like lacking friendships, but nothing that stood out as atypical in any major way. So what happened was a real bolt out of the blue.
All of a sudden in Year 3 at school Joe started to exhibit quite extreme behaviour -including threatening to jump out of a window and increasingly violent meltdowns – and his private prep school was simply unable to cope. The only thing I can put this down to was the fact that expectations were ramped up in [...]
Francisco’s Story
Mostly our parenting was blamed for Francisco’s difficulties, but we never stopped looking for answers and knew deep down that it wasn’t a question of being firmer or having stronger boundaries. From the point of diagnosis onwards, daily life has become much easier because we now understand what underlies his behaviour. With a committed team around him and an open-minded school, Francisco has improved considerably. Connecting with other parents of children with PDA has been really helpful – we are our children’s rocks.
Our son’s difficulties were always present – Francisco had constant meltdowns, huge mood swings, seemed not to understand that he was a child and we were the adults and being very fantasy oriented - but particularly came to the fore when he started primary school. His first year was a nightmare, refusing to work and being sent to the principal’s office or home on a daily basis.
Things rapidly deteriorated from difficult to unbearable. Initially we sought help with psychologists who took a psychoanalytical approach. This didn’t help, in fact everything they said seemed to make things worse. Mostly our parenting was blamed, which made us feel guilty and stressed. However we never stopped looking for answers, [...]