Autism & Advocacy: The Racial Divide

Recently, there was an article published in the LA Times about racial disparities in Autism treatment. In California, ABA is paid for through either regional centers or insurance. At most parents pay a co-pay for treatment, similar to someone paying a small co-pay when visiting the dentist. So in such a progressive state where 40 hours of ABA per week can actually be prescribed like Tylenol or antibiotics, treatment should be equally accessible to all children right? Well, apparently not.

The article which was published this year basically revealed that there is a great disparity among racial groups between who receives access to ABA services. White and Asian children were shown to receive the most services, while African American and Latino children were severely under-served.  Here is an annual numbers breakdown for the state of CA:

White children- $11,723 per child
Asian children- $11,063 per child
Latino children- $7,634 per child
African American children- $6,593 per child

So, what is happening here? Why are some children more likely to receive access to quality ABA services than other children with the same diagnosis? The main reason set forth by the LA Times article indicated that “The squeaky wheel gets the oil”: Parents who scream the loudest for services tend to get them.

So, what is behind these racial disparities?

I don’t claim to have all the answers, but based on my experiences and observations in this field I would say a lack of Autism/ABA knowledge, and a lack of advocacy leads to under-served areas:

  • Little to no knowledge of Autism- I still meet families who think Autism is just for White children. Autism sees no color, and is not a respecter of cultural, ethnic, or geographical differences. Autism crosses income levels, countries, and languages. A lack of knowledge about Autism can lead to a late diagnosis, or no diagnosis at all. And in the US anyway, no diagnosis usually means no services.
  • Medical professionals or school systems don’t always recognize Autism- If the family doesn’t recognize the Autism when the child is young, then usually a doctor or teacher will notice something. This is usually what happens, but not always. Doctors sometimes mislabel children with Autism as having MR or ADD. Teachers sometimes label children as just badly behaved or stubborn, instead of recognizing that the child has a true disability. A lack of knowledge about the many shades of gray of Autism (it is a SPECTRUM) can lead to poor, or no services.
  • Low expectations of the child- Many parents might not know Autism treatment is available and possible. I have worked with families who were shocked to discover that kids with Autism can talk, read, have friends, or be toilet trained. If a parent lacks knowledge about what Autism treatment can do, then they won’t seek it out.
  • “A” is for Advocacy- I have worked with so many parents who were completely unprepared for the fight that is sometimes necessary to get services. It can be a fight to get a diagnosis. It can be a fight to get your child enrolled in school. If no one has told you today, let me be the first to do so: You are your child’s advocate.  If you don’t push for the services that you know your child needs, then who will?

A racial disparity among Autism treatment doesn’t have a simple answer, but I think advocacy and knowledge are key factors. Families who are new to this country, families with lower incomes, families living within poorly funded school districts...all of these families are more likely to be unaware of quality ABA treatment. It is so important to know what your rights are as a parent, and to fight to get the services you are supposed to get.

Many companies and agencies do communities a disservice by not going after the "non squeaky wheels". Here's an example: Lets say you are the owner of a small ABA agency located in Anytown, USA. The census statistics for Anytown say that its a community with 50% Caucasians, 20% African Americans, and 30% Latino or Hispanic. However, your client base are all Caucasian families. Clearly something is wrong with this picture. Where are the Hispanic or Latino families who live in the community? Where are the African American families who live in the community? It is a simple matter to use the rate of Autism in this country to determine how many of the families in your community are likely impacted by Autism. Just because the consumers aren't coming in to your business or company, doesn't mean they don't need help.

I hope parents get from this post how desperately your child needs you to be an advocate for them. You could be the difference between your child receiving bare minimum services and amazing services.  I don’t say all of this to make burdened and stressed out parents feel worse. I say it because I have seen it happen. I have seen parents fight reluctant doctors, apathetic school districts, and unethical insurance companies to get quality services for their child.

Don’t give up, and don’t stop being that “squeaky wheel”.

Advocacy Resource: "The Everyday Advocate" by Areva Martin

No comments

Copyright T. Meadows 2011. All original content on this blog is protected by copyright. Powered by Blogger.
Back to Top