The frustration and heartbreak of Pathological Demand Avoidance

We've covered Pathological Demand Avoidance (PDA), which is a condition on the autistic spectrum, a few times on SNJ and it's always very popular so we know it's something that you want more information about. And so, as it's PDA Action Day we're bringing you a parent's story and a panda.  🙂

What is PDA?

People with PDA share some social and communications difficulties with others on the autism spectrum, although they often seem to have better social understanding which means their difficulties may be less obvious at first. This means that individuals with PDA are often misunderstood and misdiagnosed.

The really key point is that very different support strategies are required with PDA. In place of firm boundaries and the use of rewards, consequences and praise, individuals with PDA respond better to an approach based on negotiation, collaboration and flexibility. With the correct support in place, individuals with PDA can thrive. But the use of inappropriate support strategies can be ineffective, counter-productive and in some cases even damaging.

These points come across very strongly in the series of family stories the PDA Society has recently gathered, and below, Alison, mum to Milly, shares their story. And the panda? you'll find out at the end.

Frustration of PDA image

Our struggle to find strategies to help Milly's PDA

Difficulties began to emerge when my daughter, Milly, was around 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 at our local primary school. By four years old, we were experiencing multiple school exclusions. Her teachers claimed that they had never experienced a child like this before because nothing worked, no matter how consistent both home and the school were with traditional behaviour strategies such as rewards, consequences, star charts, praising good behaviour and ignoring the bad.

At the school’s request, we sought help and advice, but we simply became stuck in the CAMHS 'hamster wheel' (Child and Adolescent Mental Health Service), going around in circles getting nowhere fast. By the time Milly was six, our family was in complete crisis and we were now experiencing increasing school refusal.

My daughter was finally referred for an ASD assessment by her Educational Psychologist and was diagnosed with Asperger’s, following which, there didn’t seem to be any post-diagnosis support and we felt like we were basically left to get on with it. And Asperger’s just didn’t seem a suitable fit or an accurate diagnostic profile for my child. Despite support at school and the implementation of ASD strategies, things continued to deteriorate and eventually we were experiencing full-time school refusal. Life at home was nothing short of unbearable and by now my own mental health, emotional well-being and confidence was on the floor.

Lightbulb moment

My lightbulb moment came when I was watching a TV documentary and a condition called PDA was mentioned. I googled PDA and I was literally blown away at how this cluster of symptoms fitted my child to a T. Local services were dismissive and so I funded a private referral to the Elizabeth Newson Centre. Milly was diagnosed with PDA and we thankfully did then receive support and suitable strategies were implemented by social services and school. However, due to a lack of insight or experience in understanding and managing PDA, it was often left to me to educate those professionals around me.

I had been left to navigate the journey of PDA completely unsupported by local NHS services due to an apparent lack of interest, lack of recognition and vast lack of experience. Thankfully, through my own research, tenacity and insight, we made it through, but the journey that I have been on is not one that I would wish on my worst enemy.  Milly and I travelled on a journey to hell and back, only the support from fellow parents kept me going and guided me through a very long, dark and lonely tunnel.

Due to the consistent use of PDA strategies during a period of several years, daily life is now transformed for all of us. Without this and the support of similar parents, I really do not think that we would have made it through. Our family life is unorthodox but it works for us and we are now a happy and strong family unit. Demand avoidance is still as high as ever, but we can now more successfully work around this by making the necessary adjustments and adaptations. With increasing self-awareness and empathy towards others, Milly is also now developing her own self-management strategies.

Gradually, and with very careful strategies that have involved fine-tuning and adapting many of my old strategies, we are making very slow progress. A lot of this work is also down to Milly, as she struggles to navigate, self-manage and develop her own ways of trying to break free from the invisible prison that has incarcerated her mind for so long.

The frustration, despair and low self-esteem that trying to comply with her own demands causes her is heart-breaking to watch and as a parent you feel completely powerless to help. But we are determined that together we will make it through and that she will eventually be able to achieve her greatest wish, which is simply to be able to attend school without the all-consuming and raging internal battle that currently halts her progress.

PDA Panda image

What about the Panda?

In readiness for PDA Action Day on 15th May, the PDA Society is introducing a giant panda as its new ambassador. By symbolising one of the key points about PDA – that individuals with PDA need very specific support in order to thrive and may otherwise have an increased likelihood of poor outcomes, just like giant pandas – it is hoped that the giant panda concept will help everyone to understand the needs of those with PDA, to help raise awareness, increase acceptance and be united on what actions to take in order to be most effective.

Resources

There are many valuable resources on the PDA Society website, with new information being added on a regular basis. Recent additions include:

  • a series of case studies which provide first-hand accounts about living with PDA from parents of children and teenagers as well as adults with PDA;
  • resources relating to siblings of children with PDA, looking at the challenges of balancing the needs of individual children within the family unit and strategies to help.

Coming soon … Over the next few months The PDA Society will be adding a new section with information for adults with PDA as we’re aware that there is very little information available currently; a look at PDA at different life stages and how presentation and strategies may evolve over time; and an exploration of the real and perceived difficulties in diagnosing PDA.

Some of the most regularly accessed pages on the PDA Society website include: PDA-related blogs and Facebook pages, details of local PDA support groups, the Extreme Demand Avoidance Questionnaire, peer-reviewed research articles, PDA leaflets for parents, teachers and early years practitioners, the reference booklet for health, education and social care practitioners and recordings of our recent webinars.

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Tania Tirraoro
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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome. Trustee, Genetic Alliance UK.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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  • Planet Autism

    Thanks for this article. Although it needs pointing out the like other ASDs all individuals with PDA are different outside of the core difficulties of anxiety-driven demand avoidance.

    “although they often seem to have better social understanding”

    This isn’t the case for all with PDA. Having just had PDA confirmed for both our children, who have existing ASD diagnoses which are also correct, and from research, it’s clear that some children with PDA have more than one ASD subtype. So e.g. they could have AS and PDA or classic HFA and PDA. Both our children have very atypical social understanding and struggle socially but still have definite PDA.

    “By four years old, we were experiencing multiple school exclusions.”

    This also isn’t necessarily typical of PDAers. There are a significant number who mask completely in school (ironically through severe anxiety) and let out hell at home. This is how it is for both of ours and also many parents say the same on the PDA Society forum and elsewhere.

    This is in fact where it can cause the most problems, because at least if school see the problems the evidence is there in front of professionals who then cannot deny it. But when the child is passive and apparently well-behaved in school and literally is like Jekyll & Hyde by exploding at home, it is even harder to deal with a PDA child because so many professionals prefer to blame parents for the behaviours or simply disbelieve them.

    • Think this reply shows the range of PDA and how difficult it is for everyone involved. Our girl doesn’t mask anything, she refuses equally at home and at school, but I also know of plenty of others who do their best to conform at school. Neither way is great to be honest, we all have challenges…

      • Planet Autism

        The challenges of PDA are enormous for all, it’s true. But try having false accusations by professionals added onto the significant stresses of being a PDA parent and in some cases, removal of your children because of things like false accusations of MSBP/FII, because the child masks in school. Children with ASDs are overrepresented in the care system, children with ASD (especially PDA because it’s so hard to find places that diagnose) misdiagnosed with attachment disorder etc.