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.
Findings
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
