According to several studies, autism diagnosis rates vary across the board for different racial and ethnic populations. One of the populations that has some of the lowest autism diagnosis rates is the Hispanic community. Similar research also reveals that autism goes under-diagnosed in women and girls. Why is it that these underserved communities have such low autism diagnosis rates, and what can be done to help?
Low Diagnosis in the Hispanic Community
The biggest factor for low diagnosis rates in the hispanic community comes down to confusion during the screening process and access to developmental resources. For one, many hispanic families face a language barrier when being screened.
In a study where nearly 270 primary care physicians were surveyed, more than 80 percent of them offered a developmental screening to help diagnose autism but only 29 percent offered screenings in spanish. This disparity can prevent many families from being able to properly understand the questions in a developmental screening. This limited understanding leads to skewed test results that can miss the proper diagnosis.
Additionally, many Hispanic parents have much less knowledge on Autism Spectrum Disorders available to them than their Caucasian counterparts. This can be attributed to a larger disparity in access to primary care and developmental specialists. African American and Hispanic families generally have reduced access to care according to several publications. This contributes to the community going underserved and undiagnosed.
Low Diagnosis in Women and Girls
Another underserved and undiagnosed population are women and girls. A recent study showed that more men and boys are being diagnosed as being on the autism spectrum than women and girls. Various studies indicated a gender ratio as skewed from 2:1 to 16:1. In Leo Kanner’s 1943 paper on autism on a small group of children, there were four times as many boys. Hans Asperger thought women and girls simply weren’t affected in the syndrome he described in 1944, only to change his mind at a later date. So, what is the major difference between boys and girls with autism, if any?
There are several theories on why the gender disparity exists. One is that there is a female autism phenotype that doesn’t fit the mold of what determines men and boys have autism while the tools that are used to diagnose autism are based primarily on the profile of men and boys. Many researchers suggest that assessment tools be adjusted for women and girls accordingly.
Another popular theory is that women and girls are traditionally better at masking their own symptoms due to the social pressure and expectations on women and girls to mimic social cues and expectations. This points to the need for large-scale change in social norms, as well as a more prominent need for education on the symptoms of autism in women and girls.
What can we do?
At a larger level, organizations that support those on the spectrum can turn their sights to the underserved, providing services to these populations that need access the most. The Place for Children with Autism does this by seeking to expand to any community where there is a need for ABA therapy. We also seek to educate through our blog posts, social profiles and website.
What can you do?
If you feel inspired to to serve the underserved, one of the easiest ways to contribute is by educating your peers, other parents, friends and family on autism, symptoms, disparities in diagnosis and who the underserved are and what they need. Share the resources that are available to you on your social channels, and refer a friend who needs services to your nearest The Place for Children with Autism location. As always, stay tuned on our Facebook, Instagram, and Twitter, and feel free to reach out on our contact page.