Tegan Andrews
19 October 2017 – Parents are often tasked with a series of important decisions soon after a child is diagnosed with autism – including assessing which interventions are effective, safe and worth the time and effort in implementing in order to benefit their child and their family. Altogether Autism researcher TEGAN ANDREWS empathises with them.
SIFTING THROUGH copious amounts of conflicting information regarding what interventions are available, accessible, affordable, effective, and safe can be very complex.
Recently I attended a presentation at our Altogether Autism conference, on how parents choose which interventions to implement and why, presented by Daniel Shepherd and his colleagues from Auckland University of Technology (AUT).
They recently conducted a study aiming to understand why parents choose interventions for their child, why they reject interventions for their child, and why they may discontinue an intervention.
More than 500 parents completed an online survey asking about five specific types of interventions – speech and language therapy (SLT), behaviour therapy, applied behaviour analysis (ABA), occupational therapy (OT) and dietary interventions.
The distinction between behavioural therapy and ABA was that while both used behavioural techniques (and many other interventions include behavioural elements too), ABA was a more intensive programme designed for the individual.
Why parents chose an intervention:
SHATTERING CAGE: Key-note speaker Jason Edgecombe
About 80 per cent of parents sought out interventions from more than one type of intervention.
Information on SLT, occupational therapy and behavioural therapy came from teachers, paediatricians and Ministry of Education staff.
Psychologists also were heavily credited in providing information on behavioural therapy. Information on diets came from paediatricians and from the internet whereas information on ABA largely came from the internet and other parents. Dietary interventions and ABA were not as widely accessed by parents and were more likely to be self-funded rather than government-funded like SLT, behaviour therapy and OT.
Why parents didn’t select an intervention:
The top reasons parents did not access SLT were because they felt it was irrelevant to their child’s symptoms and the availability of SLT.
For behaviour therapy, it was unawareness and unavailability.
For ABA, unawareness and expense were the top two reasons.
For OT, availability was the main reason why parents were not accessing these services and for dietary interventions, skepticism was the highest, followed by lack of awareness.
Why parents stopped an intervention:
STIM TOOLS: A popular item in the Quiet Room
When parents chose to discontinue with an intervention, one of the most common reasons were goals realised (no longer needed), particularly for SLT and behaviour therapy.
ABA became too expensive to continue for many families, and the availability of OT was the key reason as to why parents ceased the intervention. For dietary interventions, the main reason was that the interventions simply seemed ineffective.
I found there were a few interesting points to this study. Interventions with a strong evidence-base were not the ones being promoted by health and education staff, or made easily accessible through government funding.
Paradoxically, interventions which have very little evidence-base were being promoted by paediatricians. These professionals have a duty of care to their patients and families in order to provide quality information to assist parents in making these tough choices for their children.
It was positive to see parents reporting a healthy dose of skepticism around dietary interventions – where evidence for their efficacy is lacking. In conclusion, it is very important that parents have access to information which is unbiased, up-to-date and accurate.