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A major dilemma occurs for parents immediately following their child’s initial diagnosis. The search for an effective treatment may last weeks, months or years for some parents and the sheer number of treatment options can be overwhelming. In addition, the effectiveness of these treatments is often unclear which leaves a parents asking ‘Which one do I choose?’.
When choosing a treatment plan for your child the following areas should be considered:
- Evidence-Based: Is the intervention based on scientifically validated and reliable research?
- Cost: Is the intervention affordable? If not, are there subsidized options or funding that can help?
- Time and involvement: Can my family commit to this? What arrangements do I need to put into place to make it work?
- Availability: Is this intervention available in my area? Is there a way I can still use it if not? Are there places available in the program?
- Child fit: Does the intervention meet the current needs of my child?
As parents narrow down their options they may wonder which treatments are going to be most effective. When talking with professionals regarding their treatment options, parents should first and foremost ask “is it evidence-based?”. Evidence-base practice is “practice that is informed by research, in which the characteristics and consequences of environmental variables are empirically established and the relationship directly informs what a practitioner can do to produce a desired outcome.” (Dunst, Trivette, & Cutspec, 2002, p. 3). In other words, evidence based practices are interventions that are based on scientifically validated and reliable research are the ones most likely to: work, be worth the time, money and energy you have to invest, and most importantly be safe for your child.
Often times, parents will cling to options which offer a “cure” and offer a “quick fix”; however it is imperative that parents take a deeper look into the evidence and research which may or may not support each treatment. Pseudoscience is defined as a treatment that “tries to lend credibility to beliefs, speculations, and untested assumptions by cloaking them in the accouterments of science – for example, by using scientific-sounding jargon, getting endorsements from individuals with apparent scientific credentials, perhaps even by using numbers or graphs”(Green, 1999). These types of treatments may provide research; however it is likely that with a closer look, the research will have generally unreliable procedures, abstract descriptions of treatment, subjective data - testimonials and case studies, not have results published in scientific journals and provide exaggerated claims.
Pseudoscientific Therapies: Some Warning Signs
(Science in Autism Treatment, Spring 1999)
- High "success" rates are claimed.
- Rapid effects are promised.
- The therapy is said to be effective for many symptoms or disorders.
- The "theory" behind the therapy contradicts objective knowledge (and sometimes, common sense).
- The therapy is said to be easy to administer, requiring little training or expertise.
- Promoters of the therapy are working outside their area of expertise.
- Promoters benefit financially or otherwise from adoption of the therapy.
- Catchy, emotionally appealing slogans are used in marketing the therapy.
- Skepticism and critical evaluation are said to make the therapy's effects evaporate.
- Promoters resist objective evaluation and scrutiny of the therapy by others.
- Negative findings from scientific studies are ignored or dismissed.
- There is no research from accredited scientific journals available to parents
Decisions regarding services for your child are some of the most important choices you will make which means, it is your right as a parent to ask for as much information as you need to feel comfortable. Requesting resources from professionals to include books, research articles, and science based websites is a good place to start. As you critically examine each option, ask questions such as “how will we know if the intervention has worked?”, “what changes will you look for and how will they be measured”, and “what does ‘better’ or ‘improvement’ really mean?”. If a practitioner is unable to answer these questions, it is a clear warning sign of a pseudoscience.
Evidence-Based Practice Reports
Clearly, it is important to be able to distinguish between evidence-based practices from treatments that are ineffective or dangerous. Fortunately, the autism community has two organizations that have released reports where there was a large analysis done of research studies on a variety of treatments. Listed below are links to summaries of each report:
National Standards Project: The National Standards Project has released two reports concerning treatments for autism. Phase 1 was released in 2009 and detailed 11 Established treatments, 22 Emerging treatments, and 5 Unestablished treatments. Phase 2 of the NSP, which was released in April of 2015, is broken down into treatments for individuals under the age of 22 and treatments for those who are 22 years of age or older. The second phase was launched in 2011 to update treatments with new research that has been published since 2007, the cut off for research for Phase 1. The dates of the peer-reviewed studies for Phase 2 range from 2007 to 2012. The NSP Phase 2 report consists of 389 studies that meet the inclusion criteria. Through the examination of these studies, the 27 professionals across the United States who made up the expert panel for the NSP2 found there to be 14 Established interventions, 18 Emerging interventions, and 13 Unestablished interventions for children, adolescents, and young adults under 22 years of age. For adults ages 22 and older the report found there to be 1 Established intervention, 1 Emerging intervention, and 4 Unestablished interventions. The report concludes by discussing the report’s limitations and the proposed future direction of the research community.
- National Professional Development Center on ASDs: The Nationals Professional Development Center of Autism Spectrum Disorder released their most recent report in 2014, detailing 27 evidence-based practices for autism treatment. The review initially found 29,000+ articles that related to ASD and intervention, but used strict criteria to accept only 456 studies. The studies included range from 1990 to 2011. For each of the 27 evidence-based practices, the report provides the definition of the intervention, the type of outcomes it has generated, the age range of the participants, and citations for the specific articles that provided the evidence for the intervention’s efficacy.