This post was originally published in Autism World magazine. Click here to read more or to subscribe.
RDI Changed our Lives
by Sharon-Bradbrook Armit
Before beginning to write this article I asked my daughter ‘Do you remember when we started RDI?’ A few years back I’m sure she would of replied with the actual date, including the day of the week, that we went to America to first meet up with our RDI Consultant.
She said : ‘Yes it’s when we first started doing things together.”
What a great reply because that is it in a nutshell. It was the beginning of us all spending time together as a family instead of rushing Alysia to one therapy or another, or waiting for therapists to turn up and do sessions with her. The beginning of us making changes within our interactions as a family to help her, instead of using therapies to fix her problems.
I then asked: “What do you think RDI has helped you with most?”
“It has helped me to understand my emotions.” Wow, well I wasn’t expecting that. But again it’s spot on along with other emotional, social and developmental areas too.
Alysia was diagnosed with autism at the age of three. Along the years she was given further diagnosis of speech, language and learning disorders. We started our Relationship Development Intervention (RDI) journey back in April 2004 when Alysia was 12-years-old. At that point we had been following an ABA programme for almost nine years.
Alysia could talk but rarely communicated more than enough to get us off her back, or to get her needs attended to. She was heavily prompt dependent, had no real friends and high levels of anxiety. She was liked by other children and some did hang out with her, but I have a feeling this was mainly due to their own insecurities and the fact that Alysia always had a protective adult around her at mainstream school.
We wanted her to be more socially aware and available. While looking for this right fit ‘social skills program’ I accidentally stumbled on RDI through a book review written by a parent on an ABA forum. I went on to read Dr Gutstein’s book ‘Solving the Relationship Puzzle’ and was sold on this being what we needed and was hungry for more information. We signed up to the RDI August 2004, four day Parent Training in Atlanta and decided that if we were going to do this we needed to jump fully on-board and include within our trip a visit to a US RDI Consultant, for her to carry out a formal assessment and give us our RDI programme to get us going. In the parent training Dr Rachelle Sheely had us practise changing our communication style from using ‘imperatives’ (questions or statements that elicited expected response) to ‘declaratives’ (making comments with no expectation of a response, let alone a specific response).
We tried this out with Alysia that same evening. Once that declarative was out we were to wait…. up to 45 seconds… to see if Alysia had something to say in return. That evening we were seated in a Chinese restaurant and the declarative that made the breakthrough was actually said by our friend. She had been looking after our children during the day and we had informed of what we were going to do. It went something like this:
‘I’ve got one of those lanterns’
Wait…. 45 seconds, no response.
‘My lantern is pink’.
Wait.. and after about 20 seconds Alysia replied, ‘I like the purple one’.
I honestly think that was the first spontaneous comment we ever heard her say. Needless to say we were determined to keep this going and ‘declaratives’ became a way of life for us. Using them took the burden off of Alysia to give what she thought was ‘a correct response’ which in turn made it easier for her to communicate without any feelings of pressure.
We formally started our programme that September. We continued to think about our communication with a focus on the amount of prompting we did. We moved onto building up moments of experience sharing by just doing things together. Simple things like playing with a ball, doing a jigsaw, cooking cakes, playing games like ‘buck-a-roo’ and a little bit of DIY. We learnt how to slow down; how to pause and not jump in to ‘fix problems’; how to have authentic roles to play; how to add small variations within our interactions that made them ‘same but different’ in order for Alysia to start to trust us as her guides; and how to gradually hand over more responsibility to her. Our early programme interactions would look something like this :
Spooning the mixture into cake cases: I would spoon out the mixture and hold it over the cake case for Alysia to push off the spoon with the teaspoon that she had. Initially I had to help her a little with this by modelling the action then hold out the spoon for her to take and continue. I would need to be mindful of my pace to ensure she was ready to carry out her role as we went along.
Playing catch: Throwing the ball back and forth. Initially Alysia had problems with the co-ordination side of this as well as the motivation of wanting to play, so we had to build it up in small steps. To begin with standing very close to her and only throwing for a few turns, being careful to stop at a successful point and not continue past that point.
Overtime we gradually increased the distance between us; the speed of action; the way in which we passed the ball; our expectations of the role Alysia was capable of doing; the length of time. We stopped over compensating and if the ball went out of play, or if she missed / dropped it, we would wait to allow her to make the repair of fetching the ball and starting the game again.
These simple interactions helped her to build memories of her own success because we had tapered them to enable her recognise her own uncertainty, along with her ability to solve the problem. In doing so these activities became ways of interacting and building motivation and not just learning a skill. Memories of both ‘we can as a team’ and ‘I can’ do it. Those basics were our backdrop of taking Alysia just over her current edge of competence, which enabled her to think a little more in order to stretch her not only in physical actions but also in her problem solving, perspective taking and general thinking. We continued to learn through our RDI programme how to help her to continue to build those positive memories by ‘scaffolding’ her success in small increments. She went from a child that would say ‘I can’t’ to almost everything, to a young person that was more than willing to ‘give it a go’. Her confidence in her own abilities and her trust in us as her guides just kept on growing.
On the friendship front, by including our other two children in things we did with Alysia, along with gradually stepping back to allow them to interact on a more even level, helped them to bond. This, I believe, in turn gave Alysia the abilities to truly begin to form reciprocal friendships with her peers. About five years ago both my other children had friends staying for a sleepover, Alysia was with me. She turned to me and asked ‘why don’t I have friends?’ Up until that point she had been happy to have other children around her but had not shown any interest in building a friendship. We discussed the fact that it takes two to form a friendship and you have to do more than just be around other people. This was like a ‘lightbulb moment’ for Alysia. Over the next year or two she began to turn that around because she was motivated to do so and not because we were giving her ‘social skills’ on how to make a friend. Where before she really only wanted to be at home she now wanted to attend social events and groups outside of school.
At age 17 she started to go to a couple of clubs for those with special needs, as this is where she felt most comfortable and their interests seemed better suited to her own. Overtime she has formed a few close friendships with some of the group members and she will go to the cinema, shopping or will just hang out with them outside of the more formal supervised ‘pub /club’ gatherings. She also had a boyfriend for almost three years and has recently had to deal with a ‘relationship break-up’, which was hard for us both to go through – sad but all part and parcel of growing up. The resilience she has built up over the years has helped her, along with knowing other people care for and about her.
Alysia is an increasingly independent young lady; she arranges places to go and times to meet up with her friends; she travels independently; she manages her finances (with a little help now and then); helps with daily chores; chips in with daily family life; takes part in family debates and is part of all the decisions we make as a family from the colour of the walls and furnishings to where we should go for our family holiday.
Currently Alysia is part of ‘Project Search’, which is a joint venture between the college she attends and a local hospital. She has the opportunity to try out different roles within the hospital over this academic year, with the aim that towards the latter part of the year she will be offered a paying job. Reports so far have been very promising as Alysia has taken on and contributed within the roles assigned and is enjoying every minute, I never doubted that she would. A few months back Alysia was travelling home by train but accidentally got on a fast straight through to London one. She phoned to let me know what was happening, initially her voice tone had tinges of anxiety within it. I stayed calm at my end of the line and as we talked I could hear her borrowing my calmness. I suggested that she call me again when she got to Paddington Station so that I could talk her through how to get home. Paddington is one of London’s busiest train stations with lots of trains going in and out from numerous platforms particularly in rush hour, which is the time she was travelling. I didn’t get that telephone call but instead received a message stating she was now on her way home, with a time to meet her at the station. I was needless to say a very proud Mum due to the level of responsibility Alysia had shown and the way she had squashed her anxiety enough to think clearly.
Just last week I went out very early on Saturday morning, everyone else was still in bed. When I got home I went to get myself something to eat and put a few ingredients on the kitchen side before getting distracted and walking away. When I came back Alysia had taken the initiative to begin cooking me some lunch, she also worked out what I would be having and had collected the remaining needed items. I hadn’t said a word to her about this, she worked it all out on her own and simply wanted to help me! Cooking is something Alysia is now very adept at, this has come from years of ‘doing it together’. We do still use cooking as one of our main ways of spending time together, as well as girly shopping trips, family meals, movie nights and the occasional family game evenings – anything from bowling to playing cards. These always were, and continue to be, backdrops to build our relationship around; it’s never been about the task. This is actually a very important lesson RDI taught me that I treasure and use with all three of my children. These things are not unique, small but significant changes are happening constantly. Little ‘WOW’ moments are part of our everyday lives.
Alysia has grown so much due to RDI – evolving from the shy, withdrawn, prompt dependent, anxiety filled child to an independent, confident, increasingly less naïve, more socially aware young lady. I am convinced she would not be where she is now without RDI. We continue to work on RDI’s more advanced goals based on Dr Gutstein’s emerging ‘dynamic intelligence’ targets.
These are aimed at forward planning, decision-making based on both the known and unknown, along with more in-depth personal emotional influences – I’m working on these same goals for myself and am also seeing some real benefit. Many people have commented over the years that Alysia doesn’t exhibit ‘autistic traits’, but actually it’s just that her autism no longer holds her back from living and exploring life.
I’ll leave you with this picture… my middle child is doing an Art A Level and one of her projects is based around ‘autism’. She asked Alysia if she had to represent autism as a picture what would it be? Her quick response was ‘Sunshine’ said with a smile on her face!
Sharon Bradbrook-Armit is a veteran RDI parent and Certified Program Consultant based in the UK. You can reach her at firstname.lastname@example.org