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
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.
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