When my son Marty was diagnosed with Autism at the age of two, April was Autism Awareness Month, and had been since the 1970s. Last year, it was changed to Autism Acceptance Month. The shift away from the term “awareness” and towards “acceptance” was an important step forward. “Awareness” can only do so much to improve the lives of Autistic people and support their families. In many cases, it’s led to the spread of dated views and misinformation that made many in the Autistic community cringe at the coming of April.
To change the focus and meaning of the month, Paula C. Durbin-Westby, an Autistic Disability Rights Activist, started Autism Acceptance Day and Month in an effort to reshape the discussion, moving away from finding a “cure” to celebrating neurodiversity. Calling for the acceptance and inclusion of Autists means not just fully embracing the Autistic people in your life and in your community, but celebrating their neurobiology and advocating for a world that is safer for and more accommodating of neurodiversity.
The adoption of Autism Acceptance is a positive step towards change. But we must acknowledge that the intersectionality of Autistic and all neurodivergent people is inextricably tied to the fight for racial justice and civil rights. It’s been proven that Black people do not receive as high a level of care as their white counterparts. The racial disparities in healthcare for Black and Hispanic communities are significant, and their access to care can be further diminished when you factor in socioeconomics. All of these contributing influences make it that much harder for families to access the necessary diagnostics and therapies to support their Autistic children.
Our Society Has Not Come Far Enough
Detection of Autism Spectrum Disorder (ASD) is critical during early developmental periods. It’s essential to screen and diagnose children between eighteen and twenty-four months when brain plasticity is in its peak. Teaching social and communication therapies during this time will benefit the child as well as the parental caretaker as the child grows into a toddler.
Structural and systemic racism contribute to the delays in diagnosis in the form of limited access to education, employment, community resources and healthcare. Because of these barriers, diagnosis can be a costly and frustrating journey for low income Black and Hispanic parents who face logistical challenges with transportation, job accommodations, linguistic support and financial resources.
A 2020 study shows that after Black parents recognize a developmental delay with their child, it can take an average of three years to receive an ASD diagnosis— missing an important window of time to apply intervention therapies. In fact, white children are 19% more likely to receive a diagnosis of ASD than Black children, and 65% more likely than their Hispanic peers. Black and Hispanic communities face bottlenecks in testing due to the lack of pediatric specialists and the time it takes to be reimbursed by Medicaid for diagnostics and treatments.
Our nonprofit, the Special Needs Network, works to bridge these gaps, providing services and support to Autistic people from underserved communities in L.A. County. But unfortunately, we’re also limited by the lack of data specific to Black and Hispanic autistic children, though more research is emerging.
COVID Widens the Gap
It’s been said many times but it is worth repeating: these pandemic years have not been the same for everyone. Low-income families found their diagnostic and therapeutic support stunted again as in-person services moved online. With schools shut, families were expected to assume the role of educators, while figuring out how to balance work and treatment therapies. While research is ongoing, one study found that psychologists reported their telehealth methods for evaluating Autistic school-aged children were less acceptable than those performed in office. The same study found that girls fared better at telehealth evaluations than boys. Those without technological access, know-how, or extra time, fell behind.
Creating new learning routines wasn’t the only disruption that Black and Hispanic Autists and their families had to face. Autists were at high risk of contracting COVID, and COVID was disproportionately affecting Black and Hispanic communities. Studies show that Black and Hispanic patients were 3 times more likely to die than their white counterparts, and 4 times more likely to be hospitalized. The CDC attributes a number of reasons for the increase in risk which include: living and working in more densely populated areas, the inability to take sick days and stay home and isolate, the lack of nearby testing centers, lack of access to healthcare, and the gaps in education and wealth.
With a medical system in crisis, short on supplies and staff, healthcare facilities implemented strict isolation policies to handle the influx of COVID patients in effort to prevent the spread. Parents and caretakers not only feared the risk of comorbidities, but also the risk of being isolated from their loved one if hospitalization was needed. The worst-case scenario was playing out in England during the second wave of COVID in 2020. It was confirmed that doctors were assigning Autistic patients DNR orders to open up more beds, determining that neurodivergent people did not share the same quality of life and therefore were not worthy of ventilators and medical care. Thankfully, to date, there are no known cases of this happening in the U.S.
So, What Is There to Be Done?
The matter of systemic racism in this country is pernicious and pervasive, and when it intersects with Autism, it significantly widens the disparities in access, treatment, and care. Self-education by learning directly from Autistic people, and from trusted organizations like ours, can help you be more informed. Volunteering for and spreading the words about advocacy groups is also a vital step.
Importantly, society needs to be more inclusive of Autistic people. Acknowledge that while all journeys for Autistic people and their families come with difficulties, those difficulties are compounded for Black, Hispanic, Indigenous, LGBTQIA+, and underserved communities. Take tangible action to support Autistic people, celebrate them, to listen to them, and advocate to create a more positive, embracing space— not just in April, all year long.
About the Author
AREVA MARTIN is one of the nation’s leading voices for Autism advocacy. An award-winning attorney, advocate, legal and social issues commentator, talk show host, and producer, she is a CNN/HLN legal analyst, former co-host of The Doctors and Face the Truth, and a regular contributor on Good Morning America, ABC World News Tonight, and Dr. Phil. She currentlyhosts The Special Report with Areva Martin and is the Host and producer of a weekend radio talk show, Areva Martin Out Loud, on KBLA AM 1580. A Harvard Law School graduate, Martin founded Martin & Martin, LLP, a Los Angeles–based civil rights firm, and is the CEO of Butterflly Health, Inc., a mental health technology company.