Case Studies - Younger Children
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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 [...]
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, [...]
Jack’s Story
Despite being diagnosed with Asperger’s & ADHD at 5, it was clear that Jack didn’t really fit the Asperger’s profile. PDA isn’t recognised in our area, but everyone can see that anxiety is at the root of his behaviour. PDA strategies that are engaging and adaptive are the most effective with him. As well as 1:1 support, Jack’s Education Health and Care Plan (EHCP) enabled other accommodations and flexibility at school. Despite this school remains really challenging for Jack and a change in support personnel has been very unsettling.
Jack was a very easy baby and is extremely bright - he taught himself the Arabic alphabet from YouTube videos and could read fluently and count into the thousands by the age of 3. But by the time he went to nursery he could be quite aggressive with other children, wouldn't follow instructions, didn’t respond to traditional rewards/consequences and had problems with delayed toilet training. We first raised concerns when he started primary school, and on the SENCO’s recommendation we sought a psychological referral.
The process was fast and smooth thanks to several factors – we had the school’s support, the clinicians were excellent, we were well-informed and Jack doesn’t mask his [...]
Zara’s Story
The moment Zara started school her previously calm demeanour vanished and her behaviour suddenly became very aggressive. We knew this wasn’t naughtiness but had no idea how to move forward until PDA was mentioned. Implementing PDA strategies literally changed our lives, reducing 6-7 incidents a day to 6-7 a week! PDA is an exhausting emotional rollercoaster and completely takes over from traditional family life. It’s essential for parents/carers to have their own coping strategies so that they can be strong, calm and organised enough to keep things on an even keel. PDA family support groups are incredibly valuable.
From the moment Zara started school we knew something was amiss as her previously calm demeanour vanished and her behaviour suddenly became very aggressive. She also started to avoid everything, was very repetitive in her actions and sensory processing difficulties became evident. Her existing speech irregularities didn’t seem to explain these other behaviours so we met with our paediatrician who suggested autism. Even though that didn’t seem to quite fit either, as Zara had good imagination and reasonable interactions at times, we agreed to try ASD strategies and review the situation in a year. Her behaviour continued to deteriorate at school and [...]
Will’s Story
Will presented such a mixed and confusing picture, but reading about PDA was like reading a description of my son. Knowing about PDA and what strategies to use has alleviated such a lot of stress on our family and made an immediate difference at school. We didn’t wait for a formal diagnosis – Will and everyone around him needed help now so we all just proceeded on the basis that PDA strategies work. Everyone needs to be open and honest and act quickly in order to achieve the best outcomes for children like Will.
Will was first referred to a paediatrician after failing his check with the health visitor at two and following concerns about his speech delay and aggressive behaviour at nursery. I queried autism from the outset but was told that he was just a bit delayed but otherwise showed no signs of a developmental disorder, though the paediatrician agreed to follow up in 6 months. I also referred myself for parenting course, as I thought I must be the problem! Will’s speech and general behaviour improved considerably after treatment for glue ear and removal of his adenoids.
However behavioural difficulties recurred after he moved to a [...]