Autism Spectrum Disorder (ASD) occurs in about 1 in 54 children, according to the most recent available estimates in a Centers for Disease Control and Prevention report.
The journey to formal diagnosis is a long one filled with golden tickets, landmines, twists, and secret knocks. This journey requires timing, advocacy, skilled and ethical practitioners, relentless parents, and available service providers.
For those from culturally and linguistically-diverse communities, this journey is significantly more complex and difficult.
Culture is at the heart of identity and encompasses customs, beliefs, language, and shared knowledge among people. Research demonstrates continued racial and ethnic disparities in those diagnosed with Autism Spectrum Disorder as well as those able to formally utilize intervention services.
True data is essentially absent in Indian Country, our people often lack the resources and support necessary to enter the journey in the first place. Our children disproportionately are left in the shadows by systems never built for them and our parents are often stripped of their voice in this battle.
This journey is an incredibly personal one for me, my 6-year-old son is autistic.
I serve as a tribal mentor parent for those starting their Autism journey and I hear the stories and cries of our tribal parents, lost in the complex system trying desperately to find their direction.
There are far too many barriers and obstacles currently in the autism journey; however, there are so many opportunities for our tribal nations to affirm their commitment to unity and compassionate care for all.
Native inclusion is critical, we must rebuild the existing system of care to align with our cultural values and customs, so that our people know we are together and our children have a greater chance for a productive future.
In 2020, I began advocating to Indian Health Services (IHS) for the inclusion of Applied Behavior Analysis (ABA) services. Autistic children in tribal communities need these medically necessary services — as they have no alternative coverages for it through private insurance and Medicaid.
Indian Health Services answered this call for our children throughout Indian Country and is recommending funding for Applied Behavior Analysis services in 2021. The logistics of this change are in process now with definite forward momentum.
There are so many additional services, treatments, and methods of support — our children would thrive if these were made available to them. This funding, if approved, would open the treatment doors to so many and will substantially improve the course of their life.
In 2021, the Cherokee Nation is honoring autistic Cherokee Nation members, like my son and are issuing a powerful proclamation for World Autism Day and Autism Awareness Month in April.
This is a much-needed and a perfect step in the right direction so that our people can be seen and heard, find balance and their place in life, and feel that strong sense of inclusion.
I want to see all our healthcare providers in Indian Country receive education and educational material for dissemination to their patients on developmental disabilities.
We need to make discussing the human condition and the variances and variations in health and mental health easier for all in Indian Country.
Having been in the mental health and healthcare field for nearly two decades as a psychologist and subsequently an administrator, taking on this journey is one of the most significant and difficult things I have done.
My entire career was focused on forensic mental health and social justice issues; however, with my son, I sought out all the available training, resources, and information to build the armor I needed to fight for his ability to access treatment and find equity and inclusion.
I want to see every parent equipped and supported, every autistic person embraced and valued for who they truly are.
We can no longer stand in the shadows, we must live in the light.