Parent Choice: The Importance of Caregiver Choice in Pediatric and Adolescent Therapy
A recent article in the ASHA Leader, https://leader.pubs.asha.org/…/leader.FTR2.25102020.52/full/, coupled with a recent intake phone call and subsequent in-person consultation, has had me deep thinking (and, to be honest, quite riled up). I have been thinking about the lack of parent choice, and the use of fear as a tactic to gain family support for different therapies. That intake call sounded like hundreds of other intake calls I have taken over the last decade. A parent, frantic for support, desperately wanting help for her child, called to ask about DIR/Floortime, the backbone of the therapy approach we use at our clinic. The parent said her son was in an Applied Behavior Analysis (ABA) program that didn’t seem to fit him or their beliefs. The program didn’t seem to be helping him, and was overall making the little boy, and both parents, very anxious. In a family meeting with the program director, the parents were told that the treatment approach being used there is the ONLY evidenced-based approach for children with Autism Spectrum Disorder. The program director also told the family that she couldn’t medically state that anything else would work for their child. This is such a common statement, and it is emphatically untrue.
First, I want to point out that ABA has very shaky evidence to support it. You can read more in this Department of Defense study published in June 2020 https://therapistndc.org/wp-content/uploads/2020/08/Annual-Report-on-Autism-Care-Demonstration-Program-for-FY-2020.pdf?fbclid=IwAR24mP0-NCe48piAcx6cFnDIOtHUPfNfgZwdJ5ISoiMyNNXAnzXDBo340iY. Second, there is quality evidence to support the use of parent-mediated approaches as well as other therapies including speech-language therapy, occupational therapy, physical therapy, and psychological therapy, including play therapy. Why wasn’t this discussed in the meeting? More importantly, why weren’t the parents’ feelings and beliefs supported? Why did the parents leave that meeting feeling more fearful for their child instead of leaving feeling heard and supported?
I could go into more detail about DIR/Floortime, how I discovered it, why I am passionate about it, and why we don’t do ABA at our clinic. However, that’s not the point of this post. The point is why aren’t we, as therapists and professionals, honoring and encouraging parent choice? Why aren’t we looking more at individual differences instead of simply a diagnosis? If every child, family, and family structure is different, why aren’t our approaches different? Why do families get an Autism diagnosis and only hear about ABA, instead of providing the family with a range of evidence-based approaches? Some children with ASD benefit from (and really NEED) physical therapy. Does that mean I think every child with an Autism diagnosis needs PT? Nope! Some children with ASD benefit from feeding therapy in order to help strengthen and support oral motor skills. Does that mean I think every child with an Autism diagnosis needs feeding therapy? Nope!
Does this post also mean that I tell families not to do ABA? Nope! We have many families who choose ABA as a treatment option. At our clinic, we work hard at collaborating with their BCBAs in order to support that family’s choice. I am advocating for parents having real choices, and being presented with all their choices. I am advocating for knowing one’s scope of practice, and referring to other specialists when a child or family’s needs are outside of one’s scope. We routinely refer to registered dietitians, developmental optometrists, gastrointestinal specialists, and otolaryngologists because we don’t have those specialists in our clinic. I am advocating for looking at individual differences, including the individual differences of the caregivers, rather than looking only at the diagnosis. I am advocating for giving parents a voice, as well as the space and opportunity to use that voice.
As an aside, I got to meet that child from the intake call. Let me tell you that his parents see his potential. They presume that he is competent and they value his individual differences. What they saw happening at his previous program was his little light getting dimmer every day. His parents are relentless. I have no doubt that, with their love and support, their son will be a thriving and happy young man one day.
