Dear Mr. Evans,
Thank you for sharing the story of Yvonne Odukwe and her daughter, Jasmine, in your article, “Autism: ‘They said bleach would cure my daughter.’” We commend your efforts to share how Ms. Odukwe is working to remove the stigma surrounding autism within her community, and to help other minority families access appropriate support. For black, Asian, and minority ethnic communities (BAME) in Wales, autism is regarded as a source of humiliation and dishonor. Without accurate information about autism and effective educational and behavioural support, folks in these communities may fall victim to the purveyors of fad, ineffective, or potentially harmful treatments, such as drinking bleach.
We appreciate how you highlighted the tireless efforts of Ms. Odukwe to build understanding of autism within her community. Dr. Chris Papadopoulos, an expert in the field of autism, states that the burden falls on providers and public authorities to help educate communities on the etiology of autism, as well as its treatment. Countering non-evidence-based treatments is a challenge faced by many in the larger autism community. However, as you rightly point out, this can be exacerbated by cultural misunderstandings. First, many children in minority communities may be diagnosed with development delays much later, which results in a loss of valuable intervention time. Second, misconceptions about autism and lower rates of diagnosis in marginalized communities can result in restricted access to services or, worse, the use of dangerous fads to try to ‘cure’ autism, such as bleach enemas and even exorcisms.
As practitioners working in the autism community, we believe that your article presents an opportunity to highlight the importance of autism understanding and acceptance, cultural capability and communication, and dissemination of scientifically supported interventions for individuals on the spectrum. To this end, our website includes resources for parents of newly diagnosed children, teens, and adults on the autism spectrum, as well as resources for medical professionals and media professionals. All of these resources aim to increase the visibility of and access to science-based treatment options for all. Finally, you’ll find our website features a Google Translate feature, which allow visitors to translate our content into dozens of different languages. Many of our publications have been translated as well. We hope you will consider sharing these resources with your readers.
Sincerely,
Kathryn Daly, MA, BCBA, LBA
Elizabeth Callahan, BCBA
Association for Science in Autism Treatment
