Today I had three separate parents reach out for my opinion about a specific program making the rounds on social media discussion threads. I’m not going to name the program because I honestly haven’t used it. I do have concerns after looking into it because the program follows a fairly predictable pattern: inflated claims, weak research base, and “works for all children” mantra. It’s not a new story.
I’ve been there professionally:
Should I make this product a part of my therapy toolkit?
I’ve been there personally:
Will this help my child? I’ll do anything to help my child.
How are families supposed to weed through what works and doesn’t work? The very first thing to do is take time to look over the program with a critical eye. This isn’t personal, it’s fair. Do not get pressured by companies, therapists, or other parents to buy a product. Ask questions:
- Is it too good to be true? One technique cannot possibly be good for all children or all disorders. It’s more likely that the treatment is not as effective as claimed. I illustrated this once when presenting by displaying two pictures of a little girl with DS side-by-side (with parent permission). The first picture her tongue protrudes. The second picture her tongue is in her mouth, lips closed together. The technique? Nothing. Just an instant later with the same camera. You can’t believe everything you see.
- Has it caught a lot of attention online? View this as: proceed with caution. Just because someone claims a treatment works online, in the popular press (like a parenting magazine), or TV show doesn’t mean it’s going to work for your child. Remember several of years ago when a child with Autism was shown using an iPad with a specific type of app? Do you know how many families came in to our clinic requesting that app? It’s a great app. Unfortunately, it’s not usually the best fit for children with DS.
- What’s the research? Case studies and outdated articles (nothing completed in the last 5-10 years supporting effectiveness) are reasons to hold off on a purchase. Remember – Evidence comes from peer-reviewed journals where researchers discuss their studies. Self-published books, articles, or trade magazines (Advance) should not included as evidence a product works.
- Does the website or advertisement use pseudo-scientific jargon AKA words meant to sound scientific. Be aware that most treatments/products/programs won’t sound absurd. They are well marketed and use terms to make customers (that’s what you are) believe claims. Be wary of the following terms as it relates to specific products or programs: anecdotal evidence (“In my own practice…, my child starting speaking after using X”), expert opinion, authority, guru, testimonial, etc. While these terms can be convincing at first, they should lead you to…more questions. Don’t despair AND don’t end your search here!
- What happens if it doesn’t work? Unfortunately I’ve seen companies (or other parents sold on the product) claim that if your child doesn’t make progress it’s because you need to use it longer (spend more money) or it wasn’t implemented correctly (you did the program wrong). I find this type of blaming to do nothing but cause more guilt and shift focus from the real possibility – the program wasn’t effective for your child.
I know this is a lot to digest. In 2013 I made a worksheet for parents to use as they figure out which programs are worth their investment of time and money. You can download it here: worksheet.
Ultimately, the decision to use a specific treatment is up to you. Even if you find out it is beneficial for children with DS, that doesn’t mean you have to use it. Keep in mind that any program has to fit within the boundaries of your family in terms of:
- Cost – Do not, I repeat, do not break the bank to purchase a product(s)
- Duration – How long the program is needed?
- Intensity – How frequently is the product used?
- Reality – Are you ready for the commitment now? What barriers exist that may prevent you from following through with the program? If not now, could you manage in 6 months?
Whatever you do, do not buy into a product or program out of guilt or desperation. It’s not worth it. Weighing your options wisely will give you peace of mind now and in the future.
References & Helpful Links
- “It’s Not Humanly Possible to Do Everything”: Perspectives on Intervention Decision-Making Processes of Parents of Children with Autism Spectrum Disorders
- Controversial Practices in Child Speech Sound Disorders
- 10 Questions to Distinguish Real Science from Fake Science
- Lof, G.L., & Camarata, S. (Nov., 2011). (Adobe Download) Clinical science: Distinguishing fads, myths, and evidence. Seminar presented at the National Convention of the American Speech-Language-Hearing Association, San Diego, CA.