Adapt and thrive: article published in SEN Magazine issue 51

Here is a reproduction of an article I wrote that was recently published in the UK's SEN magazine.

Adapt and thrive

Zoe Thompson puts the case for prioritising the development of flexible, adaptive thinking in children with autism

I recently attended the National Autistic Society’s Annual General Meeting where I met a 64 year old with Asperger’s syndrome who, I discovered, lived near me. I gave him a lift home and on the way he told me about his life. He said that because his parents did not understand him, he had often been “farmed out” to relatives; school had been “a nightmare” and he had had pervasive difficulties holding down a job (despite a MENSA level IQ); he had got into a terrible financial tangle because he didn’t understand anything about money unless it was cash, and he had missed out on two opportunities he identified (with hindsight) as potential relationships because he couldn’t read the signals at the time. 

My friend identified his biggest lifelong challenge as the difficulty he has responding adaptively to the myriad of interpersonal challenges related to navigating the world on a day-to-day basis. 

Another adult with autism who is a research associate at the University of Maine recently wrote that “social encounters are dynamic occurrences that require spontaneity, flexibility, and adaptation”. All encounters, in every sphere of life, are social encounters. Such adaptation is often required on a moment-to-moment basis and it is this lack of flexibility in thinking that is one of the most difficult challenges for those with autism.

General awareness about autism and support services for people with autism have undoubtedly improved since some of my friend’s earliest experiences, but the principles that drive the provision of health, education and social care services for people with autism in this country have not moved very far at all in the last 40 years. Cutting edge research into the brain, autism and child development is giving us a clear message about what can be achieved for people with autism, yet despite this, our services are still compensating for the impairments resulting from autism instead of addressing them.

The mainstream response to the anxiety resulting from difficulties coping with uncertainty in children with autism within educational settings has historically been to adapt the environment so that uncertainty is minimised and to entrench children with autism in the predictability of routines. In some ways, it is an understandable response, as predictability decreases anxiety, but the consequence is that we amplify rigid thinking instead of helping children with autism to develop the flexible thinking that will enable them to have a more adaptive range of responses. 

In the education sector, even the most up to date inclusion tools funded by government advocate compensating for or working around the difficulties that pupils on the autism spectrum present with. There is no mention of helping pupils develop flexible, adaptive thinking to help them better access both the academic curriculum and the hidden social curriculum. 

Compensations and accommodations have their place – they are vital supports whilst a pupil is working on developing flexibility. However, we do children no favours if we are working around their difficulties and applying strategies that make them fit more appropriately into the box of our educational system instead of working directly on the difficulties – which would lead to greater independence and autonomy.

An excellent analogy of this can be found in the book Learning as we Grow (Buerkens, Roon & Kowalczyk 2009). The authors state that “If a child is diagnosed with a reading disability, we typically apply remediation approaches to help them learn to read. At various points we may use compensations, such as books on tape, to support them. However, our goal is to remediate or correct the problem that is preventing them from reading, so that they can become functional readers. In my professional experience, I have yet to come across a situation where adults believe that for an eight-year-old child who is not yet reading, we should just compensate for that and give them books on tape for the rest of their lives!  Remedial efforts are undertaken to get to the root of the problem and overcome the issues that are preventing successful reading.”

Peter Hobson, in The Cradle of Thought, shows how the foundations for flexible, adaptive thinking are developed as a result of the engagement between infant and caregiver in the early years. The infant “borrows the thinking” of the caregiver to decide what to do when faced with uncertainty. 

This can be seen clearly in the “visual cliff” experiment where the baby is unsure whether or not to cross what looks like a steep drop to obtain a colourful toy. 

To help decide what to do, the baby references her mother (looks to her for information). When greeted with an anxious face, the baby withdraws, but when greeted with a positive, cheerful face, the baby proceeds to cross the visual cliff.

Children with autism fail to develop this experience-sharing type of referencing because they have veered away from the typical path of development where interpersonal engagement acts as the “cradle” for the development of higher-level thinking skills. Consequently, competencies such as anticipating, appraising, evaluating, reflecting, monitoring, contextual processing and forward planning (commonly known as executive functioning) are all impaired in autism.

This explains why children with autism avoid change and uncertainty and why change and uncertainty lead to such high levels of anxiety in autism. As neuro-typicals (non autistics) we all know how it feels when we are presented with a new experience or with novel information: when we have not yet developed the competencies to deal with the new or novel, it creates fear or, at the very least, anxiety, and we resist or withdraw from it.

Some autism researchers and practitioners believe that it is possible to help children with autism develop flexible, adaptive thinking in order to better equip them with the range of competencies they need to flourish in an ever-changing world. This can be achieved by using the natural developmental pathway of typical (non-autistic) children as the framework.  Barbara Rogoff, Professor of Psychology at Santa Cruz, shows in her book, Apprenticeship in Thinking, how typical children in every culture of the world learn to become problem solvers by taking part in the “guided participation relationship” with their primary caregiver/s. 

If we put Hobson’s “cradle” with Rogoff’s “guided participation”, we get a framework for the development of flexible, adaptive thinking and social and emotional development in children with autism. A handful of specialist autism schools are now using an approach based on this framework. Outlined below are some of the developmental steps they are focusing on together with examples of activities that can be used when working on developing each area of competence.

Helping children share experience

Experience sharing through interpersonal engagement is unique to humans. Children with autism miss this developmental step with the result that they find it very difficult to share emotional reactions, feelings, thoughts and ideas with others.

A child can work with their “guide” on an activity that lends itself to experience sharing, for example, when playing Buckaroo there are lots of opportunities to share excitement, anticipation and trepidation, and to celebrate each other’s success of responding to a challenge during the game.

Helping children take different perspectives and think flexibly

This involves examining, observing or thinking about something from someone else’s point of view in order to have a more flexible range of response to it.

Perspective taking underpins flexible thinking: we borrow someone else’s views on something to generate options about what to do when presented with uncertainty or challenge. To develop perspective taking, a guide can help a child to compare and contrast their views with the views of others. In its simplest form, this could involve teacher and child looking at the shape of a cloud and sharing their views. It could look like a rabbit and it could also look like a duck. Both views are valid – just different perspectives.

Helping children collaborate

This everyday interaction comes easily for most children, but those with autism miss the developmental steps, such as social referencing and joint attention, which are key to collaboration.

It is possible to work on collaboration by setting up activities where the child has an authentic role and needs to work with their guide to achieve a common goal. For example, when building a wall of cardboard boxes, a child needs to reference (look towards) the guide to make sure their “brick” is going in the right place.

If there is a problem with the placing of the brick, the guide can draw the child’s attention to this by using a vocalisation such as “Uh oh!” The child then has an opportunity to repair the interaction by adjusting the placing of the “brick”. Repair during an interaction is essential; in a truly collaborative interaction, partners take account of each other’s views and adjust their own actions accordingly.

Helping children cope with setbacks and challenges

We cope with setbacks and challenges and learn from mistakes by drawing on our episodic memories of experiences that are similar but different to the current situation, to help us decide what to do.

Research shows that this special kind of memory is impaired in autism. It is possible to use different activities that incorporate small challenges which the child can repair or resolve.  This could include simple games like Buckaroo and Jenga or everyday activities in the home such as putting the rubbish out, making the beds, sorting the washing or making lunch. The guide can then subtly highlight the child’s competence in managing the challenge. The highlighting helps the child to lay down an episodic memory that is then filed away to be used as a reference point in future when presented with a similar challenge. Strengthening episodic memory supports the development of resilience and self-esteem.

Helping children solve problems creatively

We solve problems creatively by thinking of solutions we may have used before in similar circumstances and finding the best fit, “good enough” approach to coping with real life problems. 

This follows on from perspective-taking; it is possible to use activities where the child discovers that there is no right answer, that there is more than one way to achieve a goal and that the solution does not have to be perfect. For example, when playing ball, the ball can be thrown (there are multiple ways to throw: higher, lower, backwards, through the legs), rolled, carried on something else or batted with a racquet.

Conclusion

Life is full of uncertainty, unpredictability, setbacks and challenges. Our education and social care systems need to embrace cutting edge thinking about autism, so that we can help people with autism develop the competencies that are needed to successfully navigate through the choppy waters of everyday life.

Addendum

End of article.  What I wasn't allowed to say in the article was that the guided participation that I am referring to is of course what underpins the autism intervention Relationship Development Intervention (RDI).  It is RDI that has influenced the teaching methodology in Bright Futures School.  It's encouraging to note that whilst there aren't yet that many schools that are embracing this type of approach as a whole school approach, there are an increasing number of education practitioners who are beginning to incorporate 'mindful guiding' into their relationships with pupils and fellow staff members. 

Some of you will know that I am in training to become an RDI Consultant myself.  This has opened up a whole new world of likeminded people who are striving towards similar goals from across the globe, through the RDI Community Platform - an online system that allows Consultants and Consultants in Training to share ideas and experiences, to access e-learning and to manage ongoing communications with the families they are supporting.  There is also a community for parents who are following an RDI programe. It's a veritable goldmine of ideas and support and a fantastic training resource.  It's here that I have 'met' with folk from around the world who are building this guiding approach into their teaching.

I am really looking forward to the day when, as staff at Bright Futures School, we can collaborate with the RDI Consultants of families at our school who are running home programmes of RDI to ensure that the guiding experiences that are offered at school complement and elaborate on the child's home programme.  The beauty of the RDI Platform is that we (school staff, parents and RDI Consultant) will all be able to have an ongoing case management dialogue.  How's that for a dynamic approach??

I love it when a plan comes together.......we're not there yet but are heading in the right direction.

 

New developments at Bright Futures School (including covert operations)

Exciting things are happening at our school…..last week we finally got to a position where we were able to formally publicise the school.  We did it in style in an interview with the local paper (hey – for us, that’s style!), complete with our very own celebrity Patron, an actor named John Henshaw, who lives locally.

In order to secure the patronage of the lovely Mr Henshaw I 'went dark' a week previously to track him down.  Well, ok, it wasnt that glamorous, but I did feel a bit secret agent-ish, and I was certainly on a mission.  I knew John lived locally as I’d seen him previously walking along the canal with friends, so I asked about in shops until I finally struck gold with my dentist, who told me which local watering hole John frequents.  I went home, prepared some information about our school, wrote an introductory letter, bundled it all up and left the whole shebang behind the bar of his local pub, having got the agreement of the pub landlady to pass it on later that night.  A few days later, John phoned me, we had a good chat and he offered to come up to the school to be interviewed and photographed with us. 

I have to tell you he is a really kind man – so totally unstarry, genuine and down to earth…….my kinda fella.  Here is a bit of blurb about him.

http://en.wikipedia.org/wiki/John_Henshaw

So – why, when we opened in September 2010, has it taken us so long to publicise the school and recruit new pupils?

 We currently have 6 families actively seeking a placement for their children.  The problem for us is that ‘actively seeking a placement’ is a very broad spectrum and involves very different (and often, protracted) timescales.

I know I have readers from different countries, so I think I’d better explain a little bit about the hoops that families have to jump through to secure a placement at a Special school here in the UK.  We have different kinds of school placements – broadly speaking these fall into 3 categories: mainstream schools, special schools and private schools. Placements in mainstream schools are funded by the state via the local authority in which the pupil’s family resides.  (I think the US equivalent of a local authority is a school district?)

Private schools usually require pupils to pass some kind of entrance exam and/or pay out expensive school fees with placements being funded solely by parents – so usually places in this type of school are the preserve of more wealthy families.

Special schools can be either run by an individual local authority or run by independent organisations.  Our school – Bright Futures School - is an independent special school that is run by the charity we set up, Bright Futures.

To secure a placement in a Special School, a pupil needs a statement of Special Educational Needs (SEN).  The statement sets out what the child’s educational needs are and what provision should be put in place to meet these needs.  It then identifies the school placement that will meet the needs.  The statement is a legal document and the local authority currently has the statutory duty to ensure that statements of SEN are made and maintained.

The journey towards getting a statement can be a very long and arduous one.  Often parents aren’t aware of their rights and entitlements and I repeatedly come across situations where parents tell me that their child hasn’t got a statement because when they enquired about getting one, the school told them they ‘would have no chance’.  In fact I was on the phone to a Mum earlier tonight who told me this exact story.

It is not the school’s business to be deciding which child will or won’t get a statement ahead of any formal assessment of need – but when a family isn’t familiar with the process and trusts the teachers to do the best for their child…………..you can see how easy it is to fall into this trap.

So….it can take time initially to set the wheels in motion on the statementing journey.  The actual assessment of need itself can take up to 26 weeks, as evidence has to be gathered from a variety of professionals.  Then at the end of the process, many families find that the local authority disagrees with their view of which placement would meet the needs of the child and the family finds that they have no alternative but to challenge the local authority in an SEN tribunal.  It generally takes about 3 months for a hearing to be scheduled.

Only two out of our six prospective families have children who already have statements.  One of these families initially visited back in February and we have just had a letter from their local authority asking us to consider a placement for their child.

This is a big milestone for us as it means, if it all works out, that the school will be just about viable once our initial grant runs out.  We’re not popping the champers corks just yet, but it was a big relief to get that letter JJ and it means I am no longer having to scour the internet for charity-friendly bridging loans…………..

We are currently funded by a grant that we secured from the Social Enterprise Investment Fund.  The grant runs out at the end of this academic year, so right from the start it has been really important to us to attract additional pupils to the school as quickly as possible.

We have been informally spreading the word about our school since we opened but have held back from undertaking a proper publicity drive until we had reached two key milestones.  The first was securing ‘change of use’ for the building that we rent, which actually is a domestic residence.  We had to apply to our local authority to change the use of the building from domestic residence to school.  Initially our planning application was rejected as there were concerns about cars reversing into the main road from the school drive.  We have had to negotiate with our landlords and with the local authority for a turning space on the drive so that cars could leave the premises facing forwards.

The next hurdle was Ofsted – this is the government appointed body that regulates and inspects schools.  We have recently passed our inspection and are shortly to be officially registered as an independent Special School.

So, last week, some eight months after we opened the school, we are finally ready to officially publicise it.  Never thought it would take us that long…..but we had to get all our ducks lined up, as it were.  No use publicising the school only to have change of use or our application to become a Special School rejected.

The feature is appearing in the paper sometime this week.  Once that is in print, we will also contact the national papers to see if we can get any interest there.  I asked the local journalist who interviewed me how likely it was that a national paper would run with our story and he seemed genuinely quite hopeful, given that we are using a new approach to autism education (using a 'guiding' methodology that is heavily influenced by RDI) and – as far as we know – we are the first school in the UK to do so. 

So – watch this space!  J

Our school’s web site is www.brightfuturesschool.co.uk

Oooooh – before I go, check out the new gadget I’ve added to my blog.  It’s under the pics of blog followers and it’s entitled ‘follow by email’.  If you put your email address in there and then click ‘submit’ it should mean that you receive an email every time there is a new blogpost.  Thanks to Di for spotting this and letting me know and thank you Blogger for adding this gadget.  I know it will make a real difference to some of my followers who’ve been waiting patiently for something like this to be introduced. 

Happy (improved) following!

Same but different!

I am proud and privileged to introduce my friend Di, from South Africa.  Di's blog inspired me to start my own blog after months of procrastinating.  I asked Di to do a 'guest slot' here so that there would be a perspective from another Mum whose child has a different autism profile.  I know you are going to love her story and if you'd like to follow her blog so that you can keep up to date with her family's adventures, the link is:

http://dimaitland.blogspot.com/

Check out the fabulousness of our international collaboration.  We've never met in person but it feels like we're psychic sisters :)   Over to Di..........

Dear Zoe

Thank you for asking me to be a guest on your blog and although I am quite chuffed to be invited, I am also a little apprehensive as I would hate to give out incorrect information!  I am always happy to talk about RDI, however, please be aware that I am still 'a parent in training'!! :)

To give you some background.... I have a little (well, actually he is getting rather large!) boy called Nick, he is nearly 12 years old and on the cusp of puberty.  To top it all off, Nick has autism with co-occurring issues.  To put a finer point on it, he is a non verbal child with extreme learning difficulties!

Over the years I have followed the typical path of what happens when you have a child with autism.... I know I don't need to go into this!!   Thankfully, we are very fortunate that Nick has a wonderful team batting for his side and they have watched him grow from a tiny wee tot to the big strapping lad that he is now.  Anyhow, as we were traveling the typical pathway we came across a sign that whispered to us "Relationship Development Intervention".  Whoa, we stopped in our tracks and thought "hey, this looks interesting". This started the process of reading/watching/observing/talking and doing!  I slowly came to the realization that 'oh my word, my little boy doesn't do that, he can't do that, we don't have that connection, joint attention - what's that!  As for co-regulation - you have to be joking!!  Seriously Zoe, we were just getting through the days, trying to keep Nick happy, stressing big time when we had to introduce a change in Nick's life, mourning the loss of our social life, concentrating on the 3 R's because of course if he got up to speed with his peers on an academic level then he would be fine............ yeah right!!!  

Over the following year we spent a lot of time using the principles of interaction (click here for some of those principles!).   Nick learnt the importance of referencing facial expressions and body language for information.  I also learnt to stop talking so much and to give Nick time to process information.  We are not perfect, however, we try our best to apply these principles in all our interactions with Nick!

Zoe, this post for you got me thinking, so I started looking through old video footage of Nick.... and look what I found! (I have hours of footage but don't want to bore you!). This clip was taken in May 2007.  The gentleman in the clip is an RDI consultant from the USA and he spent a lot of time in our home, assessing Nick and guiding us. You will see that Nick is capable of looking at a face for information and that he can follow eye gaze. When you watch the clip you will also see that Nick is having fun but he is overexcited........ roll on a little bit more and you can see how Nick is becoming stressed and then goes into fight or flight mode.  I had actually forgotten that he used to be like this!  I do realize Zoe, that your son is a more capable child than mine... and he can talk! but I am 100% positive that you have also had to incorporate the principles of interaction! After all, our boys are the same...... but different! 

RDI introduced us to the concept of 'same but different'.  I don't think that this expression is used any more, although I do continue to use it!  'Same but different' has played a MAJOR role in helping Nick learn to cope with changes in his environment.  My word, Nick couldn't deal with any change, whether it is putting on a new pair of shoes, trying a different type of pasta for supper or using another route to drive to school. He also needed to watch the same video clip over and over and over.... in fact he drove us all mad!  Zoe, I am sure that you know all about 'same but different'! We introduced this concept very slowly and subtly - At school, Nick's chair would be moved to a slightly different position, I would send in a new style of lunch box,  I would change his seating in the car and then drive another route....... the list goes on and on!! :) Wow, you cannot believe what my child is like now - we no longer use schedules, he moves freely to any place he needs to be, we can take him out into the community! He can cope if something unexpected happens - today he indicated that he wanted a particular cereal, which unfortunately had all been eaten - he accepted that it was finished and moved on!!!  

Goodness Zoe, you may regret inviting me as your guest because this is turning into a long post!  Best I hop, skip and jump a few years!

Our RDI consultant was only available for a year, thereafter, we tried to go it alone. Easier said then done!! We muddled along to the best of our ability and although Nick was progressing, I felt that my relationship with him wasn't sufficient. Life has its funny twists and turns and towards the end of last year I found myself with another consultant. What a blessing it has been - I can already feel the difference in my relationship with Nick!

The following clip was made a week ago!

Zoe, you asked me to talk about what we are doing with Nick and instead of highlighting our latest objective I have chosen to give you some background information!  As you say, it is a different perspective and one of my objectives for this post is to convey to families and professionals that Relationship Development Intervention works for both a child like yours and a child like mine! :D

All my very best

Di x