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Having a child with disabilities often drives us as parents to look at all of the latest research, which can make us susceptible to scam artists. We look for clinical and therapeutic best practices to do what’s best for our children, and want to support their development into successful adulthood. The thought of our children being unable to independently function as adults keeps us awake at night.
Parents want to help
I am not (nor have I ever been) in the ‘cure’ camp, however, I have looked to non-invasive strategies that help lessen some of the hurdles my child faces, and to help her understand the concepts she finds most difficult. Similarly, parents of typical kids would get a tutor when their child struggles with algebra, with the goal of lessening that hurdle of graduating high school.
So, before the stones fly, let me be clear: No, I don’t want to change my daughter. Yes, I love her with all of my heart. Yes, neurodiversity is part of who she is, her identity. No I don’t think that autism or related disabilities are anywhere near the same as needing a tutor, however, the parental desire to help our kids is the same. Yes, I do want to avoid scam artists who make unrealistic promises.
I do, however also recognize that I may not have all of the tools to help her learn effectively so that she can become a functioning, independent adult, and you know what? Bringing her up to be her best self is my job as a parent, and I have to be comfortable admitting that I don’t have all of the answers. [It’s also advocating when others say she can’t or won’t, but that’s the subject of another post]
We do what we think is best
One of the scariest things I do as a parent is put my child on a bus to school. Handing her over to (albeit, certified, well-vetted, professional) strangers who claim to know more than I do is terrifying. As parents we do what we think is best for our kids with the information we have. It’s a judgement call – whether your kid needs help with algebra or needs PT, OT and Speech therapies – who you entrust those services to.
All that said, it’s easy to get caught up in the latest scam: the snake oil’s salesman pitch of what will be the most effective. In my experience, my daughter is a bit like an onion, in that, there is no one-thing-will-help-all; she is complex. A strategy that helps her ADHD might allow for another struggle to bubble up to the surface that we didn’t see before, and we continue to peel away at the onion. We’ve tried A LOT of strategies. Some have worked well, and others, not so much. I tend to use a common sense method of evaluation where (in addition to reading the research) I am confident that the strategy won’t be harmful and might help. Most importantly, we discuss them with our pediatrician.
If it sounds too good to be true, it probably is
If you’re like me, sitting in front of your computer at 11pm with a cup of coffee, looking for answers, here are some scam prevention tips:
- Look for scientific research, published in journals, to support claims.
- Review the credentials of the people providing the strategy and the experts who recommend it.
- Evaluate all of the options to solve a problem, not just one. Compare them.
- Read about side effects and understand what to look for.
- Review what success looks like; for example, a list of changes, a time line for effectiveness, and what to expect.
- Review upfront and ongoing costs. Some interventions are very expensive with no science or guarantees they will work.
- Know the time investment. Some strategies and interventions rely on hours and hours of use or implementation by parents, or need to be repeated several times before they will work.
Scam or not? Know the Red Flags
- The strategy claims to be effective for a wide range of problems
- It promises a cure
- Words like “new breakthrough, astonishing, or miraculous” are used, or it claims to produce immediate results
- The claims make a play on emotion rather than reason
- There has been legal action over the intervention
- Your gut tells you something’s off (trust it)
The FDA also offers information and advice about companies offering miracle cures.
In summary, parents want to support and help their kids, no matter the difficulties they have. Parents of kids with special needs, however, can be particularly susceptible to emotional marketing tactics that promise big results that often have a hefty price tag. There is no “magic bullet.” Progress and patience go hand-in-hand.