By now, many parents have likely heard the news that the rate of diagnosis for autism spectrum disorder (ASD) is going up. According to the Centers for Disease Control and Prevention, one in 59 children have ASD. On the surface, this may seem like cause for concern.
However, it actually may be quite the opposite, considering two populations in particular are being diagnosed with ASD at higher rates than before. With the focus of most autism research historically being placed on white, middle to upper income boys, clinicians often lacked adequate guidelines to identify ASD signs in diverse populations. As a result, many children unintentionally fell through the cracks and did not receive the needed services and supports for which they were eligible. By focusing on the unique experiences of children within minority populations and girls with ASD, our clinicians have become more adept.
Overlooking a Diagnosis
Symptoms of ASD may be overlooked in girls for a variety of reasons. Some research suggests that signs may be missed until much later in life due to differing societal pressures and expectations. Many people with autism may present as passive, withdrawn and, in some cases, dependent on others. They also have intense special interests that take up much of their attention. These traits have historically been deemed as acceptable for girls, but not for boys, who were expected to be assertive and independent.
Aside from differences in expectations, symptoms also may present differently. For example, girls with ASD may be better equipped to identify non-verbal communication and generally engage in less restrictive types of play. The verdict is still out on the reason for these differences, but one area of thought is that girls are encouraged to engage in social and imaginative play — creating greater opportunities to practice these skills with their peers.
Missing ASD Cues
There is substantial data suggesting that minority children are underdiagnosed, and frequently misdiagnosed, at rates higher than their white peers. Socioeconomic factors, such as access to quality schools and healthcare, are two contributing factors, but they do not explain all of the differences in diagnosis rates. Some data suggests that factors such as implicit bias — stereotypes that unconsciously impact our behavior — explain the differences that cannot be accounted for by socioeconomic factors alone.
Many children are misdiagnosed with conditions such as oppositional defiant disorder and intermittent explosive disorder, both of which are diagnosed when a child is disobedient to authority, angry, even violent. Unintentionally, racial bias may shape our attitudes about these children with ASD.
As more clinicians are becoming aware of their own biases, and as standardized measures (tools to diagnosis that are consistent regardless of who provides the assessment) are seeing greater utilization, the rates of misdiagnosis are going down. However, there still is an immense need to evaluate our diagnostic practices so that all children can receive the appropriate diagnosis and related services without an initial misdiagnosis.
Over the next several years, the rate at which ASD is diagnosed may continue to rise. Myths such as, “your child makes some eye contact, they can’t have autism” are being shattered and greater attention is being paid to sex, racial and socioeconomic disparities in diagnosis.
Waiting lists continue to be several months to a year on average. However, even those are beginning to go down as more clinicians are trained in standardized assessment methods.
Perhaps most importantly is that some emerging research shows that society is starting to have a greater level of acceptance and understanding of autism. Several autism social and support groups related to race and sex differences also are popping up all over the country.
Nathan Morgan, MSSA, LSW, is the Early Intervention/School-Age Coordinator at Milestones Autism Resources. Nathan also is an autism self-advocate who works to educate the community by sharing his experiences and expertise on panels, at events and with the media. He is passionate about teaching and autism-related research.
Looking for a specific resource but don’t know where to start? Give the Milestones Autism Resources free Helpdesk a call at 216-464-7600, ext. 200. In addition, consider joining more than 1,200 attendees right here in Cleveland at the Milestones National Autism Conference on June 11-12. Gain practical strategies for your child in specialized workshops created just for parents. Register or learn more at milestones.org.