Dear Aida Mogos:
We are writing in response to “Black Voices: Early Intervention Key to Best Outcomes for Children with Autism, Local Advocates Say” dated April 24, 2022. We applaud you and WTTW for this timely broadcast as there are many important dimensions associated with this story.
Firstly, along with our colleagues at the Association for Science in Autism Treatment, we affirm that the public deserves accurate information about autism and how it manifests in young children. To this end, we appreciate the interview of Dr. Cynthia Pierre from Rush University Medical Center’s Autism Center who reviewed the signs of autism and their impact on development and functioning. Parents must be able to express concerns to the pediatrician when necessary. This has compelled us to include this link to a quick screening tool (M-CHAT) on our website so that parents can be better positioned to ask questions and share red flags. When it comes to the precious futures of our children, it is far better to express a concern that may be unwarranted than to not have those important conversations in the first place.
Parents are not the only family members who may be worried about a loved one’s development. Given that many Black families are multigenerational, it is helpful that we recognize the astute observations of grandparents who are often among the first to notice that something may be awry based on their years of lived experiences raising children. Although a few years old, this ASAT article discusses how to compassionately and sensitively share concerns about a family member who may have autism and we hope that your viewers find it useful in guiding some of these important conversations.
Secondly, as you clearly state, early intervention is predicated on timely diagnosis and evaluation. There is an abundance of scientific evidence to support that stronger outcomes are associated with intervention that begins as quickly as possible, is intensive, well-coordinated, and grounded in the very best that science has to offer. Thank you for including Nikki Griffin, a board certified behavior analyst whose agency provides intervention that enjoys abundant scientific support, as she shared vital information about the need for early intervention. Delays in accurate and timely diagnosis mean that the best possible outcomes for children will be truncated. Unfortunately, in light of the ongoing pandemic, more and more families have experienced such delays.
This leads us to the crux of your story – shining a spotlight on the harsh reality that Black families are disproportionately impacted by delayed diagnosis. Your guests highlighted transportation issues as one of the many obstacles that can contribute to this delay. Dr. Pierre shared how our assessments and diagnostic tools have become more sensitive, which makes the disparity in the experiences of White families compared to Black families even more salient and worrisome. This can result in Black children who receive less early intervention entering the public school system with an underdeveloped repertoire of skills, compounded communication and social deficits, and challenging behaviors that have become engrained. It is important to recognize that these disparities have a cumulative impact and contribute to even greater disproportionality in the schools. Furthermore, their parents are afforded less time and opportunity to develop and practice their important roles as advocates for their children. Couple this with the reality that many young parents may not be comfortable challenging authority to better meet the needs of their children due to lack of information. Taken together, this is heartbreaking, particularly since it can be avoided or at the least lessened.
The many barriers and lack of resources facing Black families are pervasive, systemic, and longstanding, and will require both acknowledgment and action by key stakeholders. Raising awareness and acceptance within existing systems, such as churches and other faith communities, can be a step forward. Efforts, however small, to promote awareness, disseminate information, provide easier and greater access, and connect Black children and their families with treatment options that will position them well in life and possibly close or reduce gaps in skills must be our priority.
We recently published an article in our April issue of Science in Autism Treatment that highlighted the available research that demonstrate this disparity and shared concrete ways that providers can be more culturally aware and better meet the needs of Black families.
Thank you again for sharing this important story. We can do better, and your story is a step in that direction.
Sincerely,
David Celiberti, PhD, BCBA-D and May Beaubrun, MSEd, BCBA
Association for Science in Autism Treatment
