Tuesday, 9 April 2019

A new first: provision to work on core autism difficulties deemed 'educational' in recent First Tier SEN Tribunal


Breaking new ground

Me and my son, Philip, age 19, are celebrating a victory following a recent win at SEN Tribunal over Philip’s further education. Initially, our local authority (LA) attempted to cease to maintain Philip’s Education, Health and Care plan (EHCP), even though it was clear that he had not met the outcomes in the plan. With the help of some fabulous legal peeps (solicitor James Betts of Irwin Mitchell and barrister Steve Broach of Monckton Chambers), we managed to persuade the LA that it would not be lawful for Philip’s EHCP to be ceased.  

Unfortunately it didn’t end there because despite Philip clearly communicating to the LA that he felt that the impact of his autism would mean that he would not cope at College, the LA proceeded to consult with 4 colleges. This happened whilst the LA was insisting that I was stopping Philip from ‘having his voice heard’ (utter rubbish, of course, but don't LAs just love to trot out that old chestnut of mother-blame, *sigh*) whilst simultaneously listening to, and then ignoring his voice themselves.

After helping the LA to understand why they should concede on the college point, we still had to battle through subsequent arguments against the bespoke package that Philip and I had put together.

It’s a long and complicated story that deserves (and will get) its own blogpost, but suffice it to say that not only did we secure a highly personalised 5 day per week package of educational activities and learning for Philip funded by an education personal budget (EPB) - one of a small number of packages with EPB funding arrangements in England - we also broke new ground in Education, Health and Care (EHC) plans, with the Tribunal Judge agreeing that social communication provision (which addresses core autism difficulties) constitutes ‘educational provision.’

Social communication approaches and RDI

Social communication interventions are a kind of psychosocial intervention that act to make specific alterations in a child’s dyadic (paired) communication environment in order to improve the child’s social communication, which includes: social reciprocity, sense of self, cognitive flexibility/executive functioning and ability to regulate their emotions. They are usually used to improve core autism features in pre-school children with diagnosed autism. 
Relationship Development Intervention (RDI) is a social communication intervention that has been developed to work with older children/young people and adults with autism, as well as with toddlers and young children.

RDI was used with Philip both by us parents in the home and as practice that was embedded within his school’s curriculum. Philip’s ADOS score (which measures the severity of the autism) decreased from 19 out of 22 to 12 out of 22 following 10 years participating in RDI. He is still autistic and still faces challenges due to his condition, but many of his former challenges have decreased in a way that has significantly improved his quality of life.

Findings from developmental psychology research

Research shows that in autism, mastery of the pivotal milestone of joint attention (mastered at 9 months of age in typical development) and its preceding milestones can be delayed or disrupted and that this disruption has serious consequences for subsequent social and cognitive development.  The consequences include: difficulties with reciprocal social interaction; difficulties managing uncertainty and unpredictability (which can lead to distressed behaviour); lack of perspective-taking (leading to a focus on self and an inability to see the ‘bigger picture’); difficulties with emotional regulation (leading to distressed/‘challenging’ behaviours); impairments in episodic memory (which can lead to a lack of resilience, low levels of self-actualisation and low self-esteem).

NHS NICE guidelines recommend social communication approaches for autism

NICE clinical guidelines on ‘Autism spectrum disorder in under 19’s: support and management’ (GG 170) recommend as a key priority for implementation that providers of services consider a specific social communication intervention for the core features of autism in children and young people that includes play and activity based strategies with parents, carers and teachers to increase joint attention, joint engagement and reciprocal communication in the child or young person. NICE recommends that 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/engagement and social routines


RDI is one of a handful of approaches that meets the above criteria.

The implications of Philip’s Tribunal judgement

Philip’s victory has important implications not just for him, but also for other young people with autism who will struggle to attend college and other traditional post-19 provision but still need to access education and training to help them to prepare for the world of work, as it adds to the small number of examples of successful proposals of this type that have been funded by an education personal budget.

More crucially, it sets a precedent for social communication provision (in Philip’s case, RDI) to be mainstreamed in EHC plans.

Philip’s feedback on RDI

After 'graduating' from Bright Futures School, Philip decided he didn't want to go to college but did want to continue to learn what he needed to make him work-ready. Philip had taken part in Relationship Development Intervention (RDI) both with his parents at home and during his time at Bright Futures School. Philip shares that, ‘RDI has helped me to understand other peoples’ non-verbal communication (facial expression, prosody and gesture) in a way that helps me to better understand what they mean e.g. sometimes people mean the opposite of the words they are saying……but it’s hard to decode that unless you also understand what their face and tone of voice is telling you. Because I have learned to do that in a very natural way over many years (doing fun stuff with my parents like baking, playing games), I don’t have to think about it – it comes automatically so it’s not a struggle for me.’

Philip goes on to explain that he also feels ‘that RDI has helped me to see other peoples’ points of view better and to use the thinking of people that I trust (like my Mum and school staff) to decide what to do when I feel uncertain about something, as well as helping me to pay more attention to what other people are thinking and feeling generally.’ Philip is writing in more detail about his experiences with RDI on a blog of his own that he is currently creating.

Despite his good progress in these areas, Philip was still struggling to regulate his emotions and finds it extremely difficult to break out of cycles of negative thinking. This was one of the reasons for continuing to include RDI in his bespoke package of educational provision.

The package includes: further learning in the areas of maths, English and IT; work skills, money management and employability short courses (ASDAN); volunteering at a community café, the local foodbank and (hopefully but yet tbc) as a porter at the local hospital; litter-picking; cooking and baking; independent travel; puppet-making; and doing voice-overs for a local radio station.

Philip will be supported on a 1-1 basis by Learning Mentors from his former school, Bright Futures School (BFS) – this is crucial to success as they are familiar adults with whom he has excellent trusting relationships and who are all trained in RDI. As the budget holder, I am commissioning this input from BFS and the school is employing another Learning Mentor (LM) to backfill the LMs who are freed up to work with Philip.

The social communication/RDI work will be delivered during the baking/cooking sessions; the puppet-making and the independent travel sessions, where the activity is used as the vehicle for the interpersonal engagement that leads to mastery of developmental milestones. The litter-picking, volunteering at the foodbank, community café and hospital portering and the radio work are less structured education and training opportunities which involve much more social unpredictability. They therefore also double up as additional opportunities for the adult guide (LM) to support Philip to review real life problems and challenges, identify changes in his emotional state and role play different possible responses to challenges.

The evidence that was accumulated in order to make the case for the bespoke provision

I commissioned reports from our family RDI Consultant and from an Educational Psychologist and used the information in these reports to combine the needs that were identified separately in the EHCP and in the EP report. The table in this link represents what I considered to be the consolidated needs that needed to be included in Section B of Philip’s EHC Plan and the provision that was required in Section F.

One of my big bugbears with EHC plans is the way that ‘needs’ are separated from ‘provision’. In my experience, this often results in LAs failing to ensure that there is a provision specified for each need, which is what is required by the SEN Code of Practice. The use of a table format where needs link directly to provision mitigates against this.

Philip has agreed to the sharing of this table. I’m not sure that I would have had the courage to consent to all my areas of difficulty being laid bare for public scrutiny. I have to hand it to the lad – he is totally determined to put out there anything that could help other autistic peeps and their families, so let’s do a Mexican wave for his courage, kindness and tenacity.



Thank you, Philip xxx


Tuesday, 23 October 2018

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…….

Saturday, 31 March 2018

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.