Controversial organization Autism Speaks might actually be doing something right with a new campaign to close the racial gap in autism diagnoses between white and minority children. Several studies, such as a small study released last year, indicate that minority children, particularly Black and Latino kids, are diagnosed with autism at a rate much lower than that of whites.
A simple matter of autism demographics? Researchers argue no — in fact, the diagnosis is being missed, with minority children being diagnosed later than their white peers, suggesting that something is going wrong with early childhood interventions.
Racial health disparities can be seen across a broad number of diseases and communities, illustrating racialized forces at work within the health care system. Some minority communities distrust the medical establishment thanks to a history of unethical experimentation and poor treatment. In other cases, doctors don’t treat minority patients with the same respect as white patients, or dismiss concerns raised by their minority patients. People of color are also more likely to be poor, which makes it harder to access care, but even when controlling for economic class, Black and Latino children are still less likely to be diagnosed in a timely fashion.
Researchers last year suggested this might have to do with a simultaneous refusal to evaluate minority children for autism, an issue many parents have cited in their dealings with doctors, and with a lack of awareness about the early warning signs of autism in these communities. The earlier autism is identified, the more options are available to kids and parents, and the less likely it is that an autistic person has to struggle through months or years of misdiagnosis and confusion; for example, autistic kids can receive appropriate accommodations in school to help them learn, and they can start developing coping techniques for sensory overload and other issues associated with autism.
When autism is not identified in a timely fashion, children may gain a reputation for being difficult in the classroom, and they could rotate through a series of doctors as their parents seek an explanation for what’s going on. People can feel like failures for not adapting to the world around them, and could struggle to maintain relationships, hold down jobs, and perform tasks of daily living.
All of this could be avoided by alert watching of children in early childhood for signs that they might be experiencing some differences in their neurological development. Autistic children may be less inclined to point at objects that interest them, less interested in experimenting with language through babbling and other sounds, and less coordinated, for example. They can be withdrawn, and may experience what appear to be temper tantrums or fits, but are actually just expressions of frustration with overstimulating environments.
Alert parents can identify these signs, and a good advocacy campaign can tell them how to advocate for their children to ensure they get a sound medical evaluation to determine if autism is involved. Such a campaign can also start educating parents about the resources available to their children as they grow up, including accommodations in school, social services, assistance with counseling and medications, and other options on a case-by-case basis.
That’s what the “Maybe” campaign makes a start at doing, targeting Black and Latino families with information about the early signs of autism in ads that will run in Spanish and English. This sounds like a good start for autism awareness, but sadly it directs users to the Autism Speaks website for more information. The organization has been rightly criticized by autism self-advocates and disability rights activists for its dehumanizing framing of autism and focus on curing autism, rather than addressing the needs of actual autistic people — does this surprisingly neutral and beneficial ad campaign mark the start of a change in attitudes at Autism Speaks?
Photo credit: cjbsaw