Fact Sheet - Using evidence to guide decision making

Couple study note pad at computer

Using evidence to guide decision making - extended version

Every individual on the autism spectrum is different and there are many different ways to help them. It can be hard to choose which intervention (way to help) to try because there are so many choices. Some interventions are used by a lot of people and some are on the internet a lot, but this doesn’t mean they are the best choice. No one knows for sure which interventions help which individual the best. Because no one knows for sure what causes autism or what will help each person, parents can be willing to try lots of different things. Some of these can waste money, time and energy if they are not the right help. (Miller et al, 2012).

It is important that parents, teachers and therapists look really carefully at the interventions around when choosing how to help. When we look at the research behind an intervention and think about how it will help the person on the spectrum, this is called ‘evidence based practice’.

What is evidence–based practice?

Evidence-based practice involves using the current best evidence (or research) in making decisions about the care, education and medical treatment of an individual. We need to ask ourselves:

‘Am I doing the right thing in the right way with the right person at the right time in the right place for the right result – and am I the right person to be doing it? … and, is it at the right cost?’ (Cusick, 2001, p. 103).

For professionals like doctors, therapists and teachers this involves thinking about the evidence (research) available as well as using what they know about the needs of the individual and their family. Parents need to understand what types of interventions are available and the evidence about them. They need to know about their child’s strengths and needs so they know the type of help they need.

Why is evidence important?

Some treatments have been shown to be harmful for children on the spectrum. It is also important that time and money are used in the most effective way to get the best outcomes. Evidence is also important when we think about the causes of autism, because this impacts on the types of intervention that is chosen. Having the wrong ideas about causes can lead to using harmful interventions.  For example, if the community believes autism is caused by possession by ‘devils’, exorcism is likely to be the treatment used. Of course we know that this is not the cause of autism and we know that this type of ‘cure’ won’t help but this type of ‘treatment’ has happened in recent years. In a similar way, some psychoanalysts used to think that autism was caused by uncaring parents, which led to a lot of distress for both parents and children, and meant that many children were put into institutions.

What is evidence and is it all created equal?

Evidence is factual information about how helpful a particular approach is. At best, evidence is the result of good research methods. Not all research methods are of equal value so there are several levels of evidence (Perry & Condilac, 2003). The different research methods go from weak to strong. The weakest type of research is a personal story told by one person. This is called a testimonial or anecdotal research. This type of research is seen as a weak method because it is just one person’s experience; however, it can be very convincing. The strongest type of research are randomised, double-blind, placebo- controlled trials. This means experiments that compare groups of children who are put into the groups at random (randomised); one group gets the intervention being studied and the other doesn’t (placebo-controlled) and neither the researchers nor the parents/children know which group they are in (double blind). 

Below is a list outlining the types of research methods from strongest to weakest:

The higher up this list, the more reliable the results are, with level 1 being the most reliable level of evidence.

Understanding research methods can be difficult and it may help to make contact with your State/Territory’s autism association or consult other reliable sources such as the Australian Government’s review (Roberts & Prior, 2006; Prior et al., 2011) and websites such as the ‘Raising Children Children Network website and the UK-based Research Autism website for information about research into different interventions and the strength of the evidence.

Guidelines for thinking about the research for a particular approach include:

  • Be careful if research is done by the same people who developed the treatment or those who will make a profit from its success.
  • Be very wary of approaches claiming to cure autism.
  • Remember that short-term improvements seen in a research study may not mean the child has long-term improvements.
  • Be wary if evidence relies too much on anecdotal information or testimonials (personal stories). These can often be quite convincing but they may not show the different results that different children get.
  • Be mindful of facts and figures. Sometimes evidence that is poor quality can seem good because of the type of language used or the use of ‘statistics’ or other scores showing improvement. Check what these figures actually mean and find out if they show a change that would be meaningful for an individual on the spectrum.
  • Be aware that just because a lot of people are using an approach does not necessarily mean there is evidence to support its use.

How do I decide on a particular approach?

Take time to find out as much as you can about the range of interventions available. Below are some good guidelines and questions to ask:

What about approaches without evidence?

Many people think there is no harm in trying a new approach or one that doesn’t have evidence but this is not always the case. Some unproven approaches have been shown to have negative outcomes. It is important to remember the potential for harm. This may be direct harm to the child (e.g. side effects or toxic reactions to particular treatments) or harm to the family (e.g. in the case of the use of facilitated communication where parents were falsely accused of abusing their children on the spectrum).

It is worth checking any program against factors considered essential for effectiveness. These ‘essentials’ have been agreed upon by authors including Roberts & Prior (2006), Dawson & Osterling (1997) and Lovannone et al., (2003), and include:

  • individualised supports and services,
  • systematic instruction and generalisation strategies,
  • highly structured and supportive learning environment,
  • ASD-specific curriculum content,
  • supported transition between settings,
  • functional approach to behaviour management, and
  • family involvement.

Where do I access information about the evidence available for a particular approach?

  • Raising Children Network (http://raisingchildren.net.au/children_with_autism/children_with_autism_landing.html)
  • Research Autism (www.researchautism.net)
  • Cochrane Reviews available from the Cochrane Collaboration (www.cochrane.org) explore the evidence for and against the effectiveness and appropriateness of treatments.
  • Parents and professionals can search on PubMed or similar databases (through libraries or professional organisations) to identify research articles on particular approaches.
  • Contact your local autism association which can provide information about approaches and direct you to appropriate sources of information.

REFERENCES

Cusick, A. (2001). OZ OT EBP 21C: Australian occupational therapy, evidence-based practice and the 21st century. Australian Occupational Therapy Journal, 48, 102-117.

Dawson, G. & Osterling, J. (1997). Early intervention in autism. In M. J. Gurulnick (Ed.),

The effectiveness of early intervention, (pp. 307-326). Baltimore: Brookes Publishing.

Herbert, J. D. Sharp, I. R. & Gaudiano, B. A. (2002). Separating fact from fiction in the etiology and treatment of autism: A scientific review of the evidence. The Scientific Review of Mental Health Practice, 1 (1). Retrieved January 23, 2009, from: www.srmhp.org/0101/autism.html.

Iovannone, R., Dunlap, G., Huber, H. & Kincaid, D. (2003). Effective educational practices for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18 (3), 150-165.

Jordan, R. (2001). Multidisciplinary work for children with autism. Educational and Child Psychology, 18 (2), 5-14.

Matson, J. L. (2007). Determining treatment outcome in early intervention programs for autism spectrum disorders. A critical analysis of measurement issues in learning based interventions. Research in Developmental Disabilities, 28, 207-218.

Morris, B. K. (2008). Evidence Based Autism Interventions. Retrieved January 23, 2009, from: www.autism-help.org.

National Autistic Society. (2007). Approaches to Autism: An easy to use guide to many and varied approaches to autism. London: National Autistic Society.

Perry, A. & Condilac, R. (2003). Evidence Based Practices for Children and Adolescents with Autism Spectrum Disorders. Review of the Literature and Practice Guide. Toronto: Children’s Mental Health Ontario. Retrieved January 23, 2009, from: www.kidsmentalhealth.ca/resources/evidence_based_practices.php#Autism18.

Prior, M., Roberts, J. M.A., Rodger, S., Williams, K. & Sutherland, R.(2011). A review of the research to identify the most effective models of practice in early intervention of children with autism spectrum disorders. Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, Australia. Retrieved May 11, 2012 from: www.fahcsia.gov.au/sa/disability/progserv/people/HelpingChildrenWithAutism/Pages/default.aspx

Roberts, J. M. A. & Prior, M. (2006). A review of the research to identify the most effective models of practice in early intervention of children with autism spectrum disorders. Australia: Australian Government Department of Health and Ageing. Retrieved January 23, 2009, from: Roberts Prior booklet 2006

(Reviewed in November 2016)