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
video-interaction feedback
- 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…….
