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March
11
2013

World Autism Awareness Day – Our challenge to you!

In honour of the upcoming World Autism Awareness on April 2nd, we at Breakthrough Autism are issuing a challenging to everyone in our community. This year, let’s move past awareness and starting thinking acceptance. For those in our community, think about what you could to do help a family whose child has autism or a child with autism him/herself? Then do it!

This year, we want to help families navigate the system by offering them these key questions in their search for treatment. Ask these questions and it will help you find quality service for your child with autism.

With so many different treatments for autism available and all claiming to be effective, it can be very difficult to figure out which treatments may be helpful for your child. Dr. Gina Green has published several articles to help parents determine which treatments for autism are actually evidence-based and worth investing time, financial resources, and energy into. Green (1996) has suggested some important questions that you can to ask when trying to decide what service(s) can help your child:

  1. What is the treatment suppose to do?
  2. Who will administer the treatment? How can I be sure that they are qualified to do so?
  3. How will the effects on my child be evaluated and by whom?
  4. What is the likelihood that the treatment will actually help? How has that likelihood been determined?
  5. If the treatment has been proven effective, how long do the effects last?
  6. What are the risks of short- and long-term negative side effects? How have they been determined?
  7. What safeguards are in place if my child experiences negative side effects?
  8. Is this the most effective treatment available? How was that determined?
  9. Is there another treatment that is similarly effective but has fewer negative side effects?
  10. What is the cost of treatment?
  11. What happens if we do nothing?
  12. If the provider says that the treatment can help your child, then two of the most important questions to ask are: How do you know that? What exactly is the basis for your claim?

You may come across some very compelling stories and testimonials that seem like evidence to support a treatment. While stories and testimonials may help you make a decision, beware if the only support for a treatment comes from stories and testimonials. The problem with stories and testimonials alone, is that there is no way of judging whether the treatment itself caused those reported changes or whether uncontrolled factors may have contributed to the changes (e.g., other treatments in effect at the same time, placebo effect). That’s why it’s important that there is evidence from controlled studies that have been published in peer-reviewed journals. In other words, the studies have been done in a way that show that improvements are because of the treatment alone and rules out any other possible reason why improvements may have been reported. For example, there have been countless controlled studies demonstrating the effectiveness of Intensive Behavioral Intervention (IBI) and other Applied Behavior Analysis (ABA) based services for individuals with autism (e.g., Howard, et al., 2005; Lovaas, 1987; McEachin, et al., 1993, Perry et al., 2008).

Looking for IBI and/or other ABA-based services? Here are some additional questions, that we suggest you could ask specifically about IBI and other ABA-based services to ensure quality service will be provided to your child:

  1. What type of relevant clinical and academic qualifications do those supervising the program have? How much and what kind of experience do they have (i.e., how long have they been practicing in the field of Behavior Analysis, who trained them)? And what do they do to stay current in the field (e.g., reading the latest research from the Journal of Applied Behaviour Analysis?)
  2. What type of certification do those supervising the programs have (e.g., are they Board Certified Behavior Analysts [BCBAs], this should be the minimum standard)? And how often does that person see and supervise my child’s case?
  3. How are my child’s individual needs met (e.g., what type of assessments are used?, how is the assessment information used?, how are goals for programming determined?, how are teaching programs created?)?
  4. How is my child’s progress evaluated?
  5. What happens if my child is having difficulty with a program (e.g., what is the process for revising programs)?
  6. How will my family be involved in programming?
  7. How are staff trained and what criterion is used to determine if staff have the relevant skills once the training is done?
  8. How are staff’s skills maintained on an ongoing basis?
  9. What systems are in place to ensure that programs are being implemented consistently across staff?

You and your family will be investing significant time and resources into your child’s treatment. Therefore, anyone who is offering to provide services to your child and your family should be more than willing to answer the above questions openly and honestly.

 

References:

Green, G. (1996). Evaluating claims about treatments for autism. In C. Maurice, G. Green, & S. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals (pp.15-27). Austin, Texas: PRO-ED.

Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359– 383.

Lovaas, I. O. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9.

McEachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359–372.

Perry, A., Cummings, A., Dunn-Geier, J., Freeman, N.L., Hughes, S., LaRose, L., Managhan, T., Reitzel, J., Williams, J. (2008). Effectiveness of intensive behavioral intervention in a large, community-based program. Research in Autism Spectrum Disorders. 2(4), 621-642.


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Our aim is to keep your and your family informed.
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