Yesterday I shared some information on a facebook group about my experience of PDA and was asked if the info could be shared more widely – so I decided to write a blogpost.
PDA stands for ‘Pathological Demand Avoidance’ syndrome and it is a presentation that is recognised as part of the autism spectrum in the UK. The PDA Society states that ‘in addition (to traditional autism characteristics) the central difficulty for people with PDA is their ‘anxiety-driven need to be in control and avoid other people’s demands and expectations.’
My son P presented with a PDA-type profile when he was younger. At diagnosis, his ADOS score (which shows the severity of the autism) was 19 out of 22, which is very high. From the research that I was reading about autism, it was clear that the higher the ADOS score (and therefore the more severe the impact of autism), the more difficult life was going to be for the person with autism.
Our hearts broke for our bright, funny, quirky, lovely lad as we watched him struggle with social understanding, with understanding another’s perspective and with inferring what others were thinking – many everyday situations were really hard for him. We saw him become easily frustrated and struggle to regulate his emotions at school. At that time, we were still learning about autism and were unsure of how to help him……but even with our limited knowledge, we could see that school wasn’t meeting his needs (he didn’t stay in a mainstream school environment for long once we saw that). We saw him struggle to cope with uncertainty and unpredictability, leading to anxiety-driven avoidance of even the smallest challenge and soul-destroying despondence at the slightest mistake.
We looked for something that might help us to help him. We discovered and started to use an approach called Relationship Development Intervention (RDI) to change our family communication and interaction style and to work on reducing the severity of P's autism.
RDI works on the core difficulties at the heart of autism by using the special 'guiding' relationship between the parent and the child as the vehicle to help the child master developmental milestones that they have missed when the autism got in the way of their development. Because of the special ‘guiding’ framework that the parent learns to put around the child, the child becomes able to use the parent as a reference point to decide what to do when faced with uncertainty or unpredictability.
In the early, years, at its simplest, this is what referencing for information looks like:
As well as facilitating referencing for information, the parent also uses RDI to enable the child to reference for experience-sharing purposes. Experience-sharing communication is what we use to share our thoughts, intentions and feelings with each other. It is how we experience the emotional payoff from social interaction and is what motivates humans to keep interacting. As result of referencing for information and experience-sharing, social understanding and emotional connection increase and anxiety decreases.
We found that working towards mastery of missed milestones via RDI significantly improved our understanding of P’s autism/PDA presentation and our ability to support him to engage successfully with the world and to connect with others.
ADOS scores are generally consistent over time but after 7 years of using RDI, when P's ADOS was repeated, his score was 12 out of 22.
He no longer presents with a PDA-type profile. He is still autistic and still experiences lots of challenges, but he is soooo much happier, better able to manage his emotions, better able to understand other people and better able to cope with uncertainty and unpredictability, which is what drives the anxiety and the need for control. Our family dynamics, our understanding of P's condition and our ability to support P were transformed by RDI. I cannot recommend it highly enough.
Anyone interested in more information, have a look here: www.rdiconnect.com There is also a facebook group called Autism Guide where parents doing RDI and RDI Consultants share their experiences.
In 2010 my husband and I opened Bright Futures School for children with autism which has the principles of RDI embedded into the curriculum.
In 2016, research published in The Lancet by Green et al reported the results of the biggest randomised controlled trial of an autism intervention ever undertaken. It showed that if parents use a social communication approach to change their communication and interaction style then they can reduce the severity of their children's autism.
With our school, we started out with the hope that by training our staff to implement the social communication principles of RDI with pupils in the school environment, we would be able to bring about changes similar to those we had brought about as parents with P. We have not found this to be the case.
Our experience at Bright Futures School is that children who participate in RDI in the school environment struggle to generalise many of the gains they make at school to other environments unless their parents are using a similar approach as part of their family lifestyle in the home. This is particularly true where a child has a severe autism presentation.
Our goal is now to help parents of pupils at our school to secure RDI home programmes via their child’s EHC Plan so that we can establish a robust partnership between home and school, with all adults working consistently and intensively on the same objectives with the child.
We are supported in this by the NICE guidelines CG170 ‘The Management of autism in under 19s’, which state at point 1.3.1:
Consider a specific social-communication intervention for the core features of autism in children and young people that includes play-based strategies with parents, carers and teachers to increase joint attention, engagement and reciprocal communication in the child or young person. Strategies should:
- Be adjusted to the child or young person's developmental level
- Aim to increase the parents', carers', teachers' or
peers' understanding of, and sensitivity and responsiveness to, the child or
young person's patterns of communication and interaction
- Include techniques of therapist modelling and
- Include techniques to expand the child or young person's
communication, interactive play and social routines.
The intervention should be delivered by a trained professional.
RDI is one of a handful of 'social communication' approaches that meets all of the above criteria.
I am taking P's case to SEN tribunal to try to secure social communication provision in Section F. Watch this space for updates on progress…….