Sunday, 9 June 2013

Dr Catherine Lord's longitudinal study of autism

Last Friday I attended a presentation at Manchester University by Dr Catherine Lord, director of the Centre for Autism and the Developing Brain.  The presentation, entitled “Longitudinal Studies of Autism Spectrum Disorder” concerned Lord’s study of children from North Carolina and Chicago followed from age 2 who are now in their 20s. The project’s aim is to determine predictors of adolescent outcome as measured by adaptive skills, quality of life, positive affect, behaviour problems, and symptoms of anxiety and depression, with an emphasis on coping strategies and their impacts on well-being and independence. 
The children were examined for behavioural, cognitive, language and social development from ages 2 to 19 in two samples: a group of children originally referred for possible ASD and a group of controls. Their families have participated in phone interviews and completed packets of questionnaires when the children were between 11 and 18, with a focus on adaptive skills, behavioural problems and pubertal development. 
Children were categorised into 4 ‘social trajectory classes’: in two groups of 40% there was no change; in a group of 10% there was improvement and in another group of 10% symptoms worsened.
Predictors of outcome
·         Joint attention
·         Non-verbal cognitive level
·         Comprehension of language out of context
·         Imitation
·         Aggression
Other aspects that may predict response to treatment
·         Engagement with objects
·         Use of symbolic gesture
·         Amount and variation of vocalisation
·         Level of focus
·         Response to the first few months of treatment
·         Other individual strengths
Researchers also observed that:
Wherever parents were actively involved in treatment, there was more change.
Socially directed behaviours increased when there were developmentally appropriate tasks and language expectations and when other people took social initiatives.
Disruptive behaviours increased when tasks were too difficult or when they were unintentionally rewarded.
She stated that research tells us that a variety of intervention strategies will work well with some children with autism and that she has concluded that what is important in interventions is:
·         The focus on joint attention
·         The degree to which external rewards are used
·         Involvement of parents/caregivers
The message was that unless an intervention targets joint attention in some way, there will not be measurable or significant social communication outcomes.
Dr Lord commented that the 8 children in her study who are doing really well (some no longer meet the diagnostic criteria for autism) all have parents who got them into some kind of treatment at age 2 years.
My reflections
The clear messages from this for me in terms of what is likely to predict intervention success were the importance of a) joint attention as a key target and b) parents having a lead role in the implementation of any intervention.
As an RDI parent, there are no surprises there, but it’s good to see that research is slowly (excruciatingly painfully slowly) catching up to some of the practice that has been happening for the last 15 – 20 years (!!!)
I did manage to ask a question which resulted in a disappointing response and made me feel similar to the way I felt when I asked a similar question of a different expert autism researcher a couple of years ago.
I asked – given what has been said about interventions being more successful when parents are involved, is there anything crucial about what’s going on in the parent-child dyad that is contributing to the success and which may need to be incorporated into all interventions?  I spotlighted the work done by Barbara Rogoff on guided participation and the work done by Peter Hobson on interpersonal engagement.
Her response was to say that yes parent involvement was key and that the work done by Rogoff was purely theoretical. 
This caused me to reflect, mentally, to myself, ‘Jeeeez….it’s not even on your radar, is it??’  ‘It’ being the interpersonal engagement that takes place during the guided participation relationship being key to the trajectory of autism.  (If you’re new to this blog, there is more about interpersonal engagement and guided participation and why they are crucial in autism here, here and here).
I could have come back on her response but I took the decision that it was not the right time or place and that instead, I would write to Dr Lord showing that the work done by Rogoff and Hobson has in fact been translated from theory into practice and has been in use by families for the last 15 years.
I am, frankly, incredulous that a top autism expert appears not to know that and it makes me want to stand on a mountain in the middle of a sea of autism researchers and scream ‘will you please just listen to parents…..we are experts by experience!!’
A letter to Dr Lord will be another of my 52 things……of which there are several more to report, but for now, time to get the kids out in the transient UK sunshine J

Monday, 3 June 2013

Revamped petition for joint attention interventions in the UK

Ok, I admit it!  I am like a London wait over two months for the next blogpost and then two come along at once.  What can I say....that's how it is for me.  It's no coincidence that I'm posting just after the half term break :)
In January I started off my '52 things' with a petition to the UK government to fund a randomised controlled trial of RDI.  It has been niggling away at me for a while that this probably isn't the right approach to securing a debate in parliament (the purpose of the petition).
So I have started a new petition with a broader appeal - one that focuses on lobbying for interventions that target joint attention to be made more widely available.  Given what we know about the importance of joint attention in child development and the fact that we also know that joint attention is a key developmental gap for people with autism (a foundational block from which the potential to master many other developmental milestones springs), it seemed appropriate to focus on making this a key campaigning objective.  
Hopefully people who know the power of not only Relationship Development Intervention, but also SCERTS, Intensive Interaction, Floortime, and other developmental interventions that focus on improving joint attention will be able to sign up to help the petition on its way to parliament.
It may all come to nowt.......but what's lost by trying?  It's only half an hour of my time to set it all up and 5 mins of yours to sign it.  The petition can be accessed here and the text of the petition is included below, so you can decide if you want to swing on over to sign.
You need to be a UK citizen or living in the UK and be able to give a UK address in order to sign.
Petition (revamped) to UK government
Responsible department: Department of Health
There is an increasing amount of research that shows the promise of autism interventions that focus on developing joint attention to improve outcomes for children and adults with autism including the development of language, the development of higher level thinking skills and an increased capacity for emotional regulation. 

Mastery of these competencies makes a huge difference to quality of life and life chances.

There are a number of developmental interventions for autism that target joint attention but knowledge of these is not widespread amongst professionals, never mind parents and people with autism. 

We call on the UK's Department of Health to begin being accountable to service-user stakeholders by working with key autism researchers, NAS, parents and carers and people with autism themselves to set up a working group to develop a strategy that will enable interventions targeting joint attention to become widely available within each local authority area.

Saturday, 1 June 2013

Article on using a developmental intervention in a school setting

I've been published in the May 2013 edition of the UK autism journal 'Good Autism Practice'.  My article is entitled 'Why a developmental approach is crucial in supporting children and adults with autism: using the principles and practice of Relationship Development Intervention in an alternative school setting'.

If you'd like to subscribe to the journal, click here.  Subscribers can access a hard copy and/or an online copy of the journal, which comes out twice a year.

My article looks at:

 - Outcomes for adults with autism (mostly poor, from the limited research we have)

 - Dynamic intelligence (as an explanation for the poor outcomes)

 - Interpersonal relatedness and the development of dynamic intelligence (and why we need to be focusing on developing dynamic intelligence in schools)

 - Autism through a developmental lens: remediation (working directly on some of the difficulties at the heart of autism) vs. compensation (working round the difficulties)

 - A new approach to autism education (incorporating the development of dynamic intelligence into the curriculum)
  • A focus on Bright Futures School
  • Training staff to be 'guides' to pupils
  • Working with parents and evaluating our practice
 - Conclusion (basically that the development of dynamic intelligence should be prioritised in schools, especially for those with any developmental delay)

If you're in the UK and you don't want to or can't afford to subscribe but you'd like to read the article, you should be able to obtain a copy through your local library's inter-library loan service, for a small fee.  Ask for the article by title (above), and author (Zoe Thompson) and tell them its on page 9 of Volume 14, Issue 1, May 2013.

I would love to get feedback if anyone does manage to read it.