At the end of last month, many may have seen from my Facebook post (quick link here) I was privileged to be invited as a guest speaker at a conference. I was asked to deliver a workshop on some strategies that may be suitable for helping children and young people with Pathological Demand Avoidance.
The conference was put together by the wonderful team over at Parenting Special Children; they provide specialist support for families in Berkshire with children and young people who have additional needs.
PSC have a range of services which cover Autism, ADHD, Looked After & Adopted Children (LAAC), Sleep, Parenting Programmes to name just a few areas of expertise, as well as hosting a helpline which offers one to one support post diagnosis. A great initiative, founded and led by ex-primary teacher Ruth Pearse, this company have a team of expert helpers who all dedicate their time to support others.
So, following that introduction, I hope to give a brief round up and share a few of the moments that really stood out for me on the day.
Ruth Fidler is an Education Consultant who specialises in complex autism and Pathological Demand Avoidance. Her wealth of knowledge on the subject has come from working with a range of individuals – she also speaks with such clarity and humour that she has the audience in the palm of her hands.
Ruth ran her first presentation which gave an understanding on the main characteristics of the PDA profile. She explained the specific features and emphasised that there is always more to an individual than simply being ‘demand avoidant.’
In the past, my daughter has been compared to another child with PDA (by a professional), who made the assumption that because both children had PDA then they should present in exactly the same way.
It is often poor misconceptions and a lack of understanding about autism being a spectrum that can result in incorrect support strategies being applied – we certainly experienced this first hand.
Ruth Fidler also talked about understanding the ‘character’ of a family – again she emphasised that each family would be unique and that the need to be flexible and creative was key. She noted how exhausting this can be always preparing for the next move – this is something I like to call parenting at the extreme!
Her second workshop of the morning focussed on the ‘implications’ for children and young people with PDA by introducing her ‘Collaborative Approaches to Learning.’
One of the key messages I picked out from her talk was the need for children to feel safe in order to thrive, as I tweeted on the day:
One of the key questions parents ask is often what will be the best type of school for a child or young person with PDA. The answer is not always clear as there have been a range of success stories, but also a range of failures, within a multitude of settings.
I couldn’t agree more with this point, which was highlighted by a member of the audience:
The culture within a school, which ultimately comes from the top leadership, is the pivotal part of whether a placement will have a chance of succeeding.
There has to be a shift in focus, so that the challenges the child experiences are understood and supported, rather than blamed and seen simply as too problematic. This is often the main barrier PDA parents come up against – I know it is something I feel that I often have to continuously explain.
Ruth explained that time needs to be invested in the strategies around the individual for it to work – a two minute hand over chat in the staff room would never be sufficient and will inevitably lead to poor outcomes.
An interesting question was offered to delegates – if you were to ask the child or young person why do they go to school, what would be their response?
The reply could indicate so much about what they are getting from the placement they are in. So, I asked my daughter and I was slightly apprehensive, what would be her response?
She told me school was a place that she went to so that she could have fun with her friends.
The tragedy in that statement is that she has never been able to manage herself within a school environment to ever play with her friends – there are intermittent glimpses of it but never something that is successful for long.
Sadly, her anxiety leads to such unpredictable behaviours that it creates a barrier from achieving her goal to socialise. I can only hope that one day in the future she will feel safe enough to be able to go to school and for the other children to see the funny and charismatic girl that is hidden underneath.
If you would like more information, the PDA Society have put together a Q & A with Ruth Fidler – for a link please click here. Also, there are a range of resources and books which may help further – links to these are accessible from the same website.
Isaac is an adult with PDA and before his Q & A we had the opportunity to watch his informative video which is available on YouTube – a full link to the video can be found here.
The session that followed enabled Isaac to give a fantastic insight into his experiences of living with PDA and strategies that he has found individually successful.
I have been fortunate enough to see Isaac speak at different events, but this particular Q & A flowed so organically that the audience were given a real flavour of some of the wonderful attributes Isaac has which really make him such a special advocate for the PDA community.
He resonated with such wit and humour; something that trying to summarise in a post like this would never be able to do him the justice he deserves.
So here are a few tweets that captured the essence of the questions that were asked:
One of the points that really stood out for me centred around the frustration that may have occurred from being misunderstood for so long (autism was not picked up for Isaac until his teenage years). His mental health had deteriorated significantly requiring complex support and care and there is always a hint of sadness that it had to get so serious before any support was accessible.
Isaac talked about the pivotal moment when he could finally understand himself and over time how he stopped measuring himself against the milestones of his peers.
There will always be debates around seeking a diagnosis and the importance of doing so, particularly if the diagnosis is rejected by the individual (which Isaac identified doing himself).
However, once Isaac understood more about PDA and what it really meant the more he came to a place of acceptance.
I was moved when Isaac talked about all of the professionals who had helped him along the way and the role that they had played in finding the right support and enabling him to understand himself better.
This resonated with me, particularly of late, as there have been many people along our journey who have helped advocate for us – without whom, I wonder where we would be now.
I hope that the professionals in the audience will have understood so much more about the profile from Isaac’s articulate voice – he will be helping so many children and young people by bravely taking to the stage and speaking of his personal experiences.
There were two parallel workshops that were run in the afternoon, one of those I delivered to parents, whilst Ruth Fidler continued with the professionals attending the conference.
I talked about our journey so far; a path that began with being blamed as a parent and of a child who was very misunderstood. I spoke of the damage this did to my daughter, as well as how I lost my confidence in parenting. I told the audience how my infant went into crisis, the toll this took and how we had to build her back up again. Lastly, I explained how I was now considered as the ‘expert’ on my own child and sadly when I got home from the conference I found out how this can often go against parents (see here).
I highlighted strategies that had proved successful for my daughter, whilst emphasising that these were specific to the ‘character’ of our family. It was useful to share how my parenting had changed – I had found the more traditional parenting routes were ineffective and they made the behaviours heighten.
I talked about the impact it has on the whole family unit and the role of ‘parent carers’ – we need to keep calibrated so that we can do the very demanding job that is needed of us to parent our special pandas.
I particularly liked this tweet which I think sums up the relevance of covering this topic in the presentation:
Some of the slides talked about looking for positive outcomes and I explained about the theory of having ‘pocketfuls of success,’ – a more elaborate post on this can be found here
Lastly, I was accompanied on stage by Leila Cox (who runs the Berkshire PDA support group) and we delivered a joint Q & A. It is always useful to share different perspectives on PDA, as our children are both different, therefore we can answer the questions with varying point of views.
It was a great afternoon and I had the chance to meet so many interesting people at the event – each of them coming with their own range of experiences and stories to share.
For me, it always comes back to sharing positive awareness on PDA and connecting with others who also have the same understanding.
There really is something magical when you come together, with over two hundred delegates in one room, and you share a common goal – to better understand the lesser known profile that is Pathological Demand Avoidance.
Thank you to everyone at Parenting Special Children and to the rest of the speakers for their hard work at making this conference such a success!
Parenting Special Children donated a very generous fee to the PDA Society for my role as a guest speaker on the day, which will help to support the wonderful work that the team of volunteers do at the PDA Society.
For a link to the PDA Society website and to view the range of resources they have please use this quick link.
Further information about Parenting Special Children can also be found here.