My experience of using RDI with my PDA profile son

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…….

Communicative gesture emerges (whoop!)

It’s so exciting when there is a new breakthrough with one of our pupils. In the clip below with Jo, Lucy starts to use communicative gesture for the first time. Gesture is just one of the channels of non-verbal communication (NVC) and NVC makes up 80% of the communication package. It is well known that autistic folks struggle to pick up NVC and so is easy to see how difficult it can be for them to understand others when they are missing 80% of the communicative intent that someone else is sharing with them.

Since Lucy started with us in September 2015, we have seen progress towards and then mastery of the developmental milestones of social referencing, experience-sharing, joint attention (responding and initiating), episodic memory and joint engagement. The upshot of this is that the quality of Lucy’s emotional connection to and understanding of her communication partner has increased exponentially. As a result, when the guiding framework/guided participation relationship is round her, her social reciprocity and enjoyment of her own feelings of competence and togetherness with her partner is a joy to watch.

Let’s just remind ourselves how far Lucy has come. Here is a clip of her presentation shortly after she joined us at Bright FuturesSchool and before she had taken part in any guiding (derived from RDI).

Here we can see that Lucy is resisting my attempts to co-regulate (do things together in a communicatively synchronised way) and is seeking to be on her own agenda….running up and down making noises rather than co-regulating by joining hands for the actions of a nursery rhyme or walking across the room in parallel. 

RDI/guiding is based on research that shows that the autistic preference for one’s own agenda is driven by the difficulties autistic peeps have in managing uncertainty and unpredictability. For Lucy at this time, I am far too unpredictable and uncertain and so she avoids engaging with me. A perfectly natural human response – it’s what we all tend to do initially when we are faced with an unpredictable challenge or a novel situation, except that non-autistic folk have mastered the developmental milestones and encoded the episodic memories of successfully overcoming challenges within the guiding relationship.  This enables them to manage and enjoy uncertainty, unpredictability and challenge.

In the clip below with Jo from the beginning of March 2018, Lucy’s progress with social communication and interaction (and her newly emerging use of gesture) is plain to see.

The text to this clip is narrated by Learning Mentor Jo, who is working with Lucy. The comments in blue are feedback from school’s external RDI Consultant, Sharon, whose job it is to make sure we are keeping the guiding framework around Lucy so that she can step into her co-regulatory role and take advantage of the opportunities to master the milestones she has missed.

Jo’s footage commentary

0.07 I remove distractions and use facial expression to express “No eating”

0.10 We have been taking turns at stirring so I use non-verbal communication to wonder whose turn it is. Lucy social references me (looks to Jo to check Jo's understanding of her communicative intent, Ed)  

0.13 Lucy social references and uses gesture herself by pointing to herself to answer my question. This is the first time we have seen Lucy use gesture - so exciting! I nod and Lucy takes the green spoon for herself

0.17 Lucy chooses to also add the purple spoon for me (how lovely! - thinking about her communication partner’s needs)

0.19 I use non-verbal communication to ask what the spoon is for. Lucy social references me to check her understanding of my communicative intent. Agree - I also think there is a little bit of study response from Lucy as she sort of looks down before pointing to you as if thinking about what to do here. Study response = pausing to think about something before acting (Ed)

0.21 Lucy uses gesture to point to me for me to use the spoon, stirring together Great to see

0.24 Lucy says (really quietly) “Jo have the purple spoon” - clarifying that she wants to stir together. Here she social refs to see if you understood her or if she needs to do more – she is really taking on board her communicative responsibility here

0.28 I spotlight her thoughtfulness verbally

0.30 I use gesture. Lucy looks at my thumbs up but then becomes distracted by her thoughts.  I think maybe she doesn't know what to make of the thumbs up in the situation, I could be wrong?!?!?

0.34 I answer Lucy’s query

0.36 I spotlight and add an emotion and label how I am feeling (following recent feedback) Jo I think this acts as a nice spotlight for Lucy, she looks happy

0.47 I start a chant just as Lucy starts to say “need….” – showing she is thinking about what we need next. Here too she appears to be using study response.

0.52 Lucy verbalises “Jo get the baking tray”

0.54 I use non-verbal communication to spotlight her great planning

1.00 Lucy says “Jo get a case” This is lovely! The whole interaction is at a lovely pace that enables Lucy to really think about what is going on & have more agency (influence over what is happening between you in thought & action)

1.02 I use non-verbal communication to give Lucy the opportunity to communicate

1.03 Lucy uses gesture to answer my question Love it!

1.04 I leave to get the baking tray, I set limits

1.13 Lucy chooses to ignore the limits and scoffs a spoonful of the mixture! She appeared to think about this beforehand!

1.21 Lucy looking sheepish, knowing she had tasted the mixture

1.24 Lucy verbalises and uses gesture (pointing from the mixture to the tray) Brilliant - this is allowing Lucy to do even more problem solving!

1.27 Lucy acknowledges the next step: showing her independence and initiative, she social references whilst pointing to the cupboard where they are kept

1.29 I use non-verbal communication to spotlight Lucy’s competence

1.32 Lucy verbally communicates for me to get it

1.34-1.43 I am trying to use non-verbal communication to express to Lucy that I don’t know where the cases are in order to give Lucy the opportunity to help and be independent. Lucy verbalises “Jo get the case” 3 more times

1.42 I scaffold and verbally communicate as my attempts at NVC aren’t working Agree she needed this

1.49 I scaffold with “maybe we could look together….” and Lucy finishes my sentence “….for the case”

1.54 I use gesture (holding my hand out) to invite her find the cases together, Lucy joins me

1.59-2.06 I give Lucy the opportunity to find the cases and feel competent Good to see

2.08 I spotlight using non-verbal communication. I use thumbs up - Lucy doesn’t know how to respond so high fives my thumb

2.10 Lucy shows acknowledgement in that I had my thumbs up and walks back to the table mimicking my gesture (the first time I have known her to do thumbs up herself) YES!!!!

2.13 Lucy starts to put the cases into the tray on her own

2.16 I take control of the equipment (cases) and set up the roles so that I can enable us to co-regulate our actions

2.19 Lucy glances at the cases I am holding, maybe in response to them making a noise. I scaffold for the cases so that we can step into a co-regulatory role

2.23 I use gesture

2.26 Lucy passes me the cases in response to my low scaffold and non-verbal communication

2.30 I start our co-reg role set. Lucy accepts it and steps into it without a scaffold

2.34 I use a slow pace, Lucy uses gesture and social references for me to pass the case Looks good

2.37 Lucy says “flapjack” and I verbally answer her query

2.49 Lucy social references in response to my slow pace and prosody maybe?

2.55 Lucy uses gesture (thumbs up) on her own initiative to show she is ready. Wow!

2.57 I respond and return the gesture

2.58 Lucy social references and we are still in our co-reg role

3.03 I use a slow pace and Lucy social references

3.09 Lucy social references, I pass

3.20 I pause, Lucy verbalises and social references (even though we don’t have any white choc) I'm wondering if this was her way of asking for it, or querying whether it would go in?

3.26 I use gesture, thumbs down to show no white choc Good use of the opportunity

3.33 We step back into co reg pattern

3.36 Is this memory recall? I'm not sure that this isn't a little resistance to the pace or the doing together???

3.39 I encourage experience-sharing by using non-verbal communication to acknowledge I have heard her

3.41 Lucy looks to me to share experience

3.56 Lucy places the case down and then recalls one of her memories again about Saoirse

4.01 Another memory recall, with Lucy concentrating on her verbal communication and expanding her vocabulary.  She then social references - maybe after a response around her telling me her story?  Interesting, I'm again not sure if this is a form of resistance or if it could be that as the pace is slow it's enabling her to think about other things.  If this continues it might be a good idea to say 'let's place the cases & then talk'.  Then once you've talked take it back to the co-reg & so on.

4.10 I use non-verbal communication

4.11 Lucy responds by using her own non-verbal communication Jo this is great!

4.18 I use the thumbs up gesture. Lucy uses gesture to point to the bowl of mixture

4.24 Lucy verbalises “green spoon”. I invite Lucy to celebrate her competence with the co-reg role

Where to: This is definitely the way to move forward with Lucy, to open up a whole world of communication that may actually start to reduce her need for self-stimulatory actions, so more of the same on/off across the day. 

You may have to scaffold parts, as you have above around tying the verbal meaning to the non- verbal communication you are using.

Think about whether there's a need to set boundaries around off-topic talking (as it can become a distraction to your guiding goal) & then think about how you can slot short intervals in for Lucy to talk about off-topic things.

End of footage text.

It was lovely to share this at staff meeting last week and was a good opportunity for staff to see exactly how Jo facilitated Lucy’s NVC so that we can make sure as many staff as possible are able to have a go at this across the school day.

I’ll end by highlighting one of Sharon’s comments: ‘The whole interaction is at a lovely pace that enables Lucy to really think about what is going on & have more agency (influence over what is happening between you in thought & action)’

Increasing personal agency for the autistic person. That is at the nub of what RDI is all about.