I want to rewind a couple weeks ago to advocating at the Texas capitol with my LEND cohort. We were joined by Lonestar LEND, a counterpart program based in Houston. It was a fun and chaotic day, in which we met with staffers to discuss issues and bills affecting the disability community.
We capped off the day with a presentation by an ABA (applied behavior analysis) provider. I’ve talked about ABA before; it’s the predominant therapy recommended for children with autism. There’s still so much about ABA that I can’t reconcile in my own brain. I asked a few questions to the presenter and my last question was whether he thought ABA might not be a good fit for every autistic kid. I was surprised to hear him say that he thought it was a useful intervention for everyone. This does not make sense to me, because no therapy or treatment is effective for everyone it’s intended for.
As the presenter continued, I was bombarded by two moms who were members of the Lonestar LEND program. One mom pulled up her child’s ABA clinic information on her phone and was searching for ABA clinics in the Austin area. Meanwhile she was telling me how wonderful ABA has been for her child. She told me to take a photo of the information. She then shared a contact phone number of someone with her child’s clinic and again told me to take a photo.
Right after she finished, another mom pulled up a chair next to me (while the presenter continued speaking). She proceeded to open a trifold board with photos of her child that contained a brief summary of their diagnosis and personality traits. She essentially began to proselytize the benefits of ABA and informed me that I really needed to put my son in ABA therapy. She continued to speak until I interrupted her and told her that we had tried ABA, but I didn’t think it was right for our family. I told her that he was now in school and that we were really happy with how he’s progressing. Her shoulders and facial expression literally dropped. She closed her trifold board and went back to her original seat.
I sat there a bit in shock, and left as soon as the presenter finished. I did not expect to be lectured by fellow family members of another LEND program. I had assumed we had an unspoken kinship, and honestly, I felt a bit betrayed.
As time passed and my initial reaction settled, I’ve thought more about this intense interaction. I think these family members do feel a kinship to me and this is the exact reason they spoke so passionately to me. They had found something that “worked” for their children and they were eager to share.
This experience, although uncomfortable and unwanted, was a good reminder that I too have been overzealous at times, thinking I had perhaps been helpful for other families. It can be hard not to get caught up in my own personal experience when interacting with other families who I might perceive to be similar to mine. It has taken some time for the shooting steam from my ears to subside, but I assume these moms thought they were helping me.
Because ABA is considered to be the gold standard in autism interventions, it is still somewhat taboo to opt out of it for your child. Without unraveling our family’s entire ABA journey, I want to acknowledge that it was by no means an easy or straightforward choice. I do believe that it was the right choice for our family given our circumstances.
Families with disabled children need more cheerleaders telling them they are good and competent caregivers. We often feel there is a never ending list of medications, recommendations, treatments, therapies and interventions and that we must follow through on or else we might be labeled as “bad” parents. We are plagued by questions like, “are we doing enough?” And “are we doing the right thing?” Clearly these questions are subjective, but I do think that if families encounter a professional who can instill a sense of confidence in their ability to make choices and refusals (as it relates to their child’s treatment) this would alleviate a lot of worry.
I believe that not every family needs to participate in the same treatments or make the same choices in raising disabled children. There are many paths to helping a child reach their potential and each family knows their child best. Although these thoughts aren’t exactly radical, I don’t think it’s often believed or put into practice by medical providers, therapists, or professionals who interact with the disability community. To do so means relinquishing power/so called expertise, suspending judgment and trusting that families truly can and do make the best decisions for their disabled child.
This is who I hope to be. The ultimate cheerleader for my community.