Dear Mr. DeVencentis,
In the spirit of Autism Awareness and Acceptance Month, we at the Association for Science in Autism Treatment (ASAT) extend our heartfelt appreciation for bringing Thalia’s inspiring journey to the forefront in your recent article, “Surrounded by Fighters.” This story is a celebration of a family coming together and doing what it takes even when the system was falling short. Why? Because there was important work to be done and their loved one deserved nothing less.
“Surrounded by Fighters” cuts to the core of Autism Awareness and Acceptance Month. The notion of acceptance has been championed with great enthusiasm in the last few years which is an important reminder to reflect on what we can do to honor the tremendous diversity within the autism community, better listen to the voices of all stakeholders, and do all we can to promote inclusivity. It was heartening to read about how Thalia was seeking greater autonomy from her classroom aide and used the very voice that grew more powerful undoubtedly from the behavior analytic interventions she received.
As we strive for acceptance, it does not mean that awareness is less needed although many voices in the autism community may argue otherwise. Awareness remains critically important, and this heartwarming story brings that to life. Thalia, now a young adult, was able to access the help she needed because some developmental concerns were noted, acted upon, and her family persisted despite the many roadblocks they faced along the way. Families of children like Thalia should not have to work so hard just to figure out how to access needed help, but sadly this story was not an uncommon experience twenty years ago. Even today, there are delays in many children being identified despite our recognition of the importance of early detection and intervention. So yes, awareness is still needed, and still very relevant.
In fact, awareness is also needed to help us identify where and how we are falling short in supporting autistic individuals and their families. The experiences of Thalia’s family ring particularly true for marginalized families. The disparities in access to information, resources, diagnosticians, providers, funding, and services faced by families of color, those living in rural areas, and non-English speaking households are tremendous obstacles. Sadly, these disparities have a compounding effect that dampens potential, yet can serve as a call to action. This call to action is predicated on awareness which should compel us to recognize and address all the barriers that stand in the way of parents trying to help their children realize their fullest potential.
The knowledge and understanding that comes from greater awareness is not incompatible with acceptance but rather complimentary. Again, thank you for sharing this testament to Thalia’s remarkable resilience and the unwavering commitment of her family navigating through the many chapters of her journey.
Sincerely,
David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
