Sunday, 10 March 2013

52 Things: things 2 - 5


On we go with my 52 things to try to raise awareness of the potential of Relationship Development Intervention.  Betcha thought I'd been slacking, as I haven't posted about any of the things for a while?  Well' I've been beavering away quietly.......
2.  Discussion with Mark Lever
About 6 weeks ago, an adult with autism wrote something about wishing he had had the opportunity to start a family.  I was deeply moved by his expression of loneliness and regret.  It reminded me of a guest blogpost from my friend Richard, who identified his autistic inflexibility as the problem that got in the way of him making and maintaining romantic relationships.  It prompted me to email Mark Lever, Chief Exec of the National Autistic Society.  I know Mark personally from my time as an NAS Councillor and I knew that we were connected enough for him to want to respond in a thoughtful way to the issues I raised in my email. 
I pointed out that despite many in the neuro-diversity movement claiming that autism is a ‘natural way of being’ and that it shouldn’t be changed in any way, for some people with autism, their difficulties with flexibility and reciprocity are huge barriers to achieving what most humans want from life: love and friendship, independence and meaningful, fulfilling employment.
I said that I knew of some adults with autism who were either happy being single or happy and successful in love, friendships and employment, but many more who found isolation painful.  Some of these folk in the latter category have written about their experiences.
Both of us acknowledged how difficult relationships (of any kind) can be sometimes even for neuro-typical people. 

I said to Mark that I though the NAS has a duty to support those people with autism who do want to improve their chances of love and friendship by improving their social reciprocity. I also pointed out that the dynamic thinking competencies that lead to greater flexibility and reciprocity are seldom developed in schools, even in neuro-typical children.  Some schools for children with autism claim to ‘teach’ ‘social skills’ but I emphasised that these ‘skills’ are usually superficial in nature with children failing to generalise them to other environments, settings or social partners.   And of course I suggested that the only way to foster these key competencies is with interventions that help children to master the developmental milestones they have missed.
What will happen as a result of this conversation?  I don’t know.  But Mark did undertake to come back to me once he had had time to think over and share with others some of the issues I raised.  I’ve lost nothing by having the conversation….perhaps, at the very least, its planted a little seed.
3.  Email to Robert Buckland, Chair of APPGA
Dear Mr Buckland
In your capacity as Chair of the APPGA, I wanted to let you know about our school for children with autism in Oldham, www.brightfuturesschool.co.uk which has been set up by two parents (myself and my husband).
Our school is a DfE registered and Ofsted inspected independent special school.  It brings a new approach to autism education - part of our curriculum involves using interpersonal relationships to work on some of the difficulties at the heart of autism, rather than working round them, as most other schools do. Our methodology is derived from the autism intervention Relationship Development Intervention (RDI).  I write a blog about how RDI has worked for my family http://notnigellanotjamie.blogspot.com
In an 18 month period of us using RDI in the home, my son's ADOS score went from 19 out of 22, to 12.  I am attaching a synposis of the intervention for your reference.
Research has shown that RDI can be of huge benefit to children's emotional wellbeing as well as helping to remediate other aspects of the condition.
Many children (mostly in the US, where RDI is more widely used, but some in the UK) no longer meet the criteria for a diagnosis of autism after participating in this intervention.  As you know, the lifetime cost, after discounting, for someone with autism and intellectual disability is estimated at approximately £1.23 million, and for someone with autism without intellectual disability is approximately £0.80 million.
An investment of under £5K per year for 5 - 10 years (some would need less time) could potentially save £1,180,000 for one person with autism and intellectual disability and £750,000 for one person with autism without intellectual disability.
I would be interested in your views on how this approach might best be utilised by the current government, given the huge benefits it can bring to families and the massive cost savings it can bring to the public purse.
I look forward to hearing from you.
Response from Robert Buckland, MP:
Dear Mrs Thompson,
Many thanks for your email and the links.  I was very interested to read about your school and the particular approach that is being used.  I will liase (sic) with other members of the All Party Group to see how best we can help make sure that the success of your school is used as an example of best practice.
Yours,
Robert Buckland
So – nothing unexpected there really……busy public official being approached by unknown woman about an autism intervention which as yet has no RCT evidence (but good emerging evidence).  Woman gets bland response and suspects MP hasn’t looked at links or attachment…….but another seed is sown and there are plans to cultivate it further.
4. Article accepted for UK autism journal
This is an article that was submitted in August 2012 which has been accepted, subject to revisions, for an autism journal.  The article will look at using the principles and practice of RDI in a school setting and is due out in May 2013.
5. SAAS conference
I will be running two workshops at the Staffordshire Adults Autistic Society conference on 13 May 2013.  My presentation will be about using the principles and practice of RDI in a school setting – why we chose to do this, how we do it and what outcomes it had led to for our pupils.
I do have some more 'things' to blog about, but these'll have to wait for another blogpost as its time to make chicken pie and flapjack.......

2 comments:

  1. Zoe, I am so proud of you. I could waffle on and on but it's bed time for me!! :)
    If I may make a suggestion? You really need to contact Iain Croft at the new iMag, autism Oz. Have a chat to him about writing something for the iMag! Iain is a nice bloke.. and he is British!

    ReplyDelete
  2. Thanks Di. I will google iMag...I think I remember it being mentioned but wasnt sure about contacting them....but now you have reassured me I'll give it a go. There you are....you've just contributed to another of my 52 things :)

    ReplyDelete