Hidden Challenges: Disparity in Autism Diagnoses

I recently read an article on “How to Help Low-Income Children with Autism.” All of us acknowledge the critical importance of early intervention for a child with special needs. However, this article made the point that, too often, children from low income families do not receive the early intervention services that they so desperately need. Many years ago, the prevailing opinion was that prominent, affluent, Caucasian families were the most likely to have a child with autism.

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As a result of methods such as routine screenings and increased awareness, we know today that the prevalence of autism (1 in 59) has little to do with socioeconomic status. However, even with that statistic in mind, less than half of the anticipated number of low-income children receive a formal diagnosis. The implication here is profound: not that low-income children are less likely to have autism; rather, that low-income children are half as likely to be able to receive the diagnosis needed to receive supports.

“It’s so complicated to get an autism diagnosis and treatment in the US,” quotes a pediatrician in Portland, OR. “[With a] process that’s really convoluted and complicated, it’s always the families with the least privilege who don’t make it through.”

autism.jpgOften, we forget that as confusing as this process can be, it is even more challenging for parents who may not speak English nor have any resources to aid them. Consider the many families who live in rural parts of our country; they may need to travel hours to get to the nearest physician or clinician.

Thankfully, community leaders are working hard to bridge this gap, in part by creating a variety of programs designed to meet the particular challenges of their communities.

In Baltimore, a parent-to-parent program has been initiated to work with families of newly diagnosed children, in addition to those who have just begun the process of requesting a screening.

In Southern California, when data showed that minority families visiting regional centers for people with disabilities were receiving fewer services than white families, the state invested $11 million to explore multiple strategies that best reduce the disparity in all of its regional centers.

In the cities of New Haven, Boston, and Philadelphia, more than 80% of families are receiving public insurance. So these cities have paid “navigators,” rather than volunteers, who are culturally matched to families from the point of initial referral to 100 days after diagnosis to ensure that the children receive treatment.

Looking back, Ryan was very fortunate. Uncle Joe was a pediatric neurologist and diagnosed him before he was 2 years old… that was rare 23 years ago. Given my background, I consider myself fortunate to have known, far before the opinion was wide spread, the essential need for Early Intensive Behavioral Intervention, which I believe made a crucial impact in his success. While I am pleased that we have progressed as a community and nation, our work should not end until we see to it that all children with autism receive the treatments/guidance they deserve!

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