This is the second in a series of informational articles designed to help parents and family members better understand, identity and address Austim Spectrum Disorder. Read the first article in our series: An Autism Eplainer on World Autism Day
Autism is common. According to the most recent data from the Centers for Disease Control and Prevention (CDC), 1 out of 59 children has been diagnosed with autism, while 1 out of 36 actually have it. That’s a marked rise from 2000, when only 1 in 150 children had been diagnosed with autism.
While it still isn’t clear what causes autism or why it is becoming more common, one thing that is clear, the earlier treatment begins, the better. This makes the fact that Black children with autism spectrum disorder (ASD) continue to be at a disadvantage in terms of diagnosis and access to care even more daunting.
According to one of the largest U.S. studies to date on Black parents seeking an ASD diagnosis for their child, Black children don’t receive a diagnosis until three years, on average, after their parents have voiced their initial concerns about atypical behaviors. Even after receiving a diagnosis, they continue to face obstacles in nearly every aspect of care and treatment.
The Need for Early Recognition of ASD
It is not easy for parents to hear that their child has, or might have, autism. Even when there are worries about the child’s development, it is natural to hope that a child is just a late bloomer, or a bit quirky. And indeed, some children are late bloomers, or quirky, or have an entirely different problem with their development.
A child’s brain is still developing and is more “plastic” during the early years, making them more responsive to interventions. Early interventions can help children build skills and behaviors more effectively, potentially preventing or mitigating challenging behaviors from becoming ingrained.
So how early can you reliably diagnose autism? According to Harvard.health.com, “the optimal time to identify and begin treating Autism Spectrum Disorder (ASD) is as early as possible. The American Academy of Pediatrics (AAP) recommends screening for ASD at 18 and 24 months, ideally 3-years-old. This allows for early intervention, which can have a significant positive impact on a child’s development and outcomes.
Behind Late Diagnosis in Black Children
There may be a number of issues involved in the late diagnoses of ASD in Black children beginning with the parent’s lack of knowledge about the disorder due to a lack of information and resources. Without adequate knowledge, parents do not recognize the early signs of autism or know when to seek help.
Even with knowledge, given the longstanding history of implicit bias and racism within the healthcare system, Black parents may be reluctant to bring up their concerns to their child’s doctor. In fact, many parents have reported their pediatrician to be dismissive or quick to blame disruptive behaviors on poor parenting or harmful stereotypes. Additionally, pediatricians may not recognize ASD symptoms due to a lack of experience. Some doctors only receive a small amount of training on autism during their medical education.
Doctors may opt to take the “wait and see” approach to developmental monitoring, which can result in the child going through multiple rounds of evaluations before diagnosis. Black children are also often misdiagnosed – especially black or conduct disorders before receiving an autism diagnosis.
Relying solely on pediatricians and possibly starting medication aimed at correcting problematic behaviors will generally not help with diagnosing ASD. Medication may be able to help treat certain symptoms or co-occurring challenges, such as anxiety, but it will not help with the core challenges of ASD.
When medication fails, some parents will then seek psychological testing. Unfortunately, by then, many of these boys are older, and early childhood interventions for ASD can no longer be implemented. Many Black boys grow up without adequate behavioral interventions and services which is concerning given that early intervention in early childhood before school entry has been found to improve receptive and expressive language, cognitive functioning, and adaptive skills.
Moving Forward to Diagnosis
To avoid this, parents need to determine whether their child’s doctor is knowledgeable about autism. But many Black parents have described being unable to do so, as they had never heard about ASD and didn’t recognize the signs.
In addition, stigma has been cited as one of the main reasons that Black people may fail to acquire mental health information and resources. This is due to the historical misdiagnosis and mistreatment of Black people struggling with mental health issues. Many within the Black community are reluctant to talk about their own mental health struggles. This can lead parents to feel isolated and afraid of judgment, preventing them from seeking a diagnosis for their child.
But it’s important that parents educate themselves on autism and continue to advocate for their child. Foundations such as The Color of Autism and Autism in Black provide helpful information and support for the families of Black children with ASD. And if pediatricians still advise against further evaluation, parents can reach out to their state sponsored Early intervention website to request an evaluation. Parents don’t need to go through pediatricians for a medical diagnosis. They can go to a clinician or any other autism testing agency.
In Kansas that site is” https://www.kdhe.ks.gov/954/Early-Intervention
In Missouri, that site is https://dmh.mo.gov/dev-disabilities/autis
However to diagnose ADHD, another mental disorder should not better explain the symptoms, and since social communication and social interaction deficits can be observed for both autism and ADHD, how are Black boys being left behind for autism? Understanding why ASD is frequently missed in Black boys is crucial for addressing these disparities, ensuring equitable access to care, and obtaining early interventions.
1. Lack of Psychological Testing and Assessment
Relying solely on pediatricians and possibly starting medication aimed at correcting problematic behaviors will generally not help with diagnosing ASD. Medication may be able to help treat certain symptoms or co-occurring challenges, such as anxiety, but it will not help with the core challenges of ASD.
When medication fails, some parents will then seek psychological testing. Unfortunately, by then, many of these boys are older, and early childhood interventions for ASD can no longer be implemented. Many Black boys grow up without adequate behavioral interventions and services which is concerning given that early intervention in early childhood before school entry has been found to improve receptive and expressive language, cognitive functioning, and adaptive skills.
Early Detection:
ASD can sometimes be detected as early as 18 months or younger, and by age 2, diagnoses by experienced professionals are considered reliable.
Importance of Early Intervention:
Early intervention services, such as therapy to help children learn to talk, walk, and interact, can greatly improve a child’s development and lead to better outcomes.
AAP Recommendations:
The American Academy of Pediatrics (AAP) recommends screening for ASD at 18 and 24 months, along with regular developmental surveillance, the organization states.
According to one of the largest U.S. studies to date on the topic, Black children, on average, don’t get diagnosed with autism spectrum disorder (ASD) until three years after their parents have initially voiced concerns to their pediatrician. This automatically places them behind the curve, as they miss out on the many positive effects of early intervention services.
Even with knowledge, given the longstanding history of implicit bias and racism within the healthcare system, Black parents may be reluctant to bring up their concerns to their child’s doctor. In fact, many parents have reported their pediatrician to be dismissive or quick to blame disruptive behaviors on poor parenting or harmful stereotypes. Additionally, pediatricians may not recognize ASD symptoms due to a lack of experience. Some doctors only receive a small amount of training on autism during their medical education.
Doctors may opt to take the “wait and see” approach to developmental monitoring, which can result in the child going through multiple rounds of evaluations before diagnosis. Black children are also often misdiagnosed with mood disorders first, further prolonging the process.
To avoid this, parents need to determine whether their child’s doctor is knowledgeable about autism. But many Black parents have described being unable to do so, as they had never heard about ASD and didn’t recognize the signs. Stigma has been cited as one of the main reasons that Black people may fail to acquire mental health information and resources. This is due to the historical misdiagnosis and mistreatment of Black people struggling with mental health issues. Many within the Black community are reluctant to talk about their own mental health struggles. This can lead parents to feel isolated and afraid of judgment, preventing them from seeking a diagnosis for their child.
But it’s important that parents educate themselves on autism and continue to advocate for their child. Foundations such as The Color of Autism and Autism in Black provide helpful information and support for the families of Black children with ASD. And if pediatricians still advise against further evaluation, parents can go to their state’s Early Intervention website to request an evaluation. Parents don’t need to go through pediatricians for a medical diagnosis. They can go to a clinician or any other autism testing agency.
And as research on the importance of autism training within the healthcare system continues to gain traction, there’s hope that more of an effort will be made to educate doctors on how to detect early signs of autism in children across multiple racial/ethnic groups.