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Black children with autism spectrum disorder (ASD) continue to be at a disadvantage in terms of diagnosis and access to care. 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.
This automatically places Black children behind the curve, as evidence of the importance of early diagnosis and intervention for children with ASD continues to emerge. Early intervention has proven to be critical for the development of cognitive and language skills, often resulting in a better long-term prognosis for kids with ASD. The disorder is often characterized by poor behavioral regulation, which can have negative effects on social functioning and academic achievement further down the road. With early intervention, a child’s triggers for behavioral dysregulation can be monitored and targeted with therapy. Kids who’ve received this type of care early on in their development have displayed a reduction in hyperactivity and improvement in their ability to manage everyday tasks and adapt to different social situations.
When children receive a late diagnosis, they miss out on a critical form of treatment. This could have lasting negative effects on their social, academic, and future professional development.
“Sometimes families experience either shame about asking for help or a sense of hopelessness. They feel like, ‘Well, even if I ask, I’m not going to get the supports that I need,’” explains Alana Telesford, PhD, a psychologist who specializes in autism.
According to studies that examine the experiences that Black parents have with their children’s primary care providers, these fears have proven to be warranted. Families often report their child’s doctor to be dismissive of their concerns, blaming disruptive behaviors on poor parenting or the harmful stereotype of Black children having a propensity for misbehaving. Other parents have described being accused outright of exaggerating to game the system and receive free government-issued services.
But another reason that doctors may fail to recognize the signs of ASD is that they don’t have the expertise. As Dr. Telesford points out, “Not everyone’s a specialist in developmental differences or autism, especially with young kids. Some pediatricians only get a small amount of training in autism during their medical education. So, if a family really has a concern, I think they also need to evaluate how well their pediatrician understands autism.”
Dr. Telesford describes the process as confusing and overwhelming for parents, especially for those who are seeking a first-time diagnosis. “There are so many steps involved. There’s a lot of paperwork, scheduling of different appointments, interacting with multiple healthcare professionals in a whirlwind sort of way.”
This can be especially frustrating for parents who aren’t familiar with the process and do not have a supportive pediatrician. Parents have reported having a much easier time with the evaluation process when their doctors clearly explain what’s going on, offer advice, and keep up with the child’s progress. Unfortunately, it can be a struggle to find doctors who are both willing and have the expertise to do this, even more so for Black parents.
It’s also important to note that a medical diagnosis is different from an educational classification. Schools might take a medical diagnosis into consideration, but they will most likely require their own process of testing to determine special-education eligibility. The criterion for eligibility varies from state to state. And it’s this eligibility that will allow children to access the services they need within the school system.
“This process must be very parent-driven,” says Dr. Telesford. “So, if a parent has a report from a medical setting, they have to go to the school and formally request, ‘I want my child to be evaluated. This is the data I have.’”
This automatically places Black children behind the curve, as evidence of the importance of early diagnosis and intervention for children with ASD continues to emerge. Early intervention has proven to be critical for the development of cognitive and language skills, often resulting in a better long-term prognosis for kids with ASD. The disorder is often characterized by poor behavioral regulation, which can have negative effects on social functioning and academic achievement further down the road. With early intervention, a child’s triggers for behavioral dysregulation can be monitored and targeted with therapy. Kids who’ve received this type of care early on in their development have displayed a reduction in hyperactivity and improvement in their ability to manage everyday tasks and adapt to different social situations.
When children receive a late diagnosis, they miss out on a critical form of treatment. This could have lasting negative effects on their social, academic, and future professional development.
What role do primary healthcare providers play?
The healthcare system has a longstanding history of implicit bias and racism, resulting in a lingering sense of medical mistrust within the Black community. To this day, Black women are more than twice as likely to die from pregnancy complications than their white counterparts, regardless of socioeconomic status or educational level. Therefore, parents might be hesitant to even bring up their concerns with their child’s pediatrician.“Sometimes families experience either shame about asking for help or a sense of hopelessness. They feel like, ‘Well, even if I ask, I’m not going to get the supports that I need,’” explains Alana Telesford, PhD, a psychologist who specializes in autism.
According to studies that examine the experiences that Black parents have with their children’s primary care providers, these fears have proven to be warranted. Families often report their child’s doctor to be dismissive of their concerns, blaming disruptive behaviors on poor parenting or the harmful stereotype of Black children having a propensity for misbehaving. Other parents have described being accused outright of exaggerating to game the system and receive free government-issued services.
But another reason that doctors may fail to recognize the signs of ASD is that they don’t have the expertise. As Dr. Telesford points out, “Not everyone’s a specialist in developmental differences or autism, especially with young kids. Some pediatricians only get a small amount of training in autism during their medical education. So, if a family really has a concern, I think they also need to evaluate how well their pediatrician understands autism.”
How might evaluations serve as a barrier?
Many doctors opt to take the “wait and see” approach to developmental monitoring, which can also result in the child going through multiple rounds of evaluation before settling on a diagnosis. The current literature isn’t clear about why Black children are more likely than white children to be asked to endure more evaluations than usual. But scientists and health care professionals have a few possible reasons for this. For starters, the framework for ASD evaluations relies heavily on research that’s historically used white middle-class kids as their subjects, making it more difficult for clinicians to detect symptoms of autism in Black children. This can also lead to children being misdiagnosed with an intellectual disability or mood disorder, further delaying the process. Additionally, shortages in trained professionals within the community can force parents to look outside their initial healthcare system for evaluations. This can be not only time-consuming but also expensive, posing yet another obstacle for lower-income families.Dr. Telesford describes the process as confusing and overwhelming for parents, especially for those who are seeking a first-time diagnosis. “There are so many steps involved. There’s a lot of paperwork, scheduling of different appointments, interacting with multiple healthcare professionals in a whirlwind sort of way.”
This can be especially frustrating for parents who aren’t familiar with the process and do not have a supportive pediatrician. Parents have reported having a much easier time with the evaluation process when their doctors clearly explain what’s going on, offer advice, and keep up with the child’s progress. Unfortunately, it can be a struggle to find doctors who are both willing and have the expertise to do this, even more so for Black parents.
It’s also important to note that a medical diagnosis is different from an educational classification. Schools might take a medical diagnosis into consideration, but they will most likely require their own process of testing to determine special-education eligibility. The criterion for eligibility varies from state to state. And it’s this eligibility that will allow children to access the services they need within the school system.
“This process must be very parent-driven,” says Dr. Telesford. “So, if a parent has a report from a medical setting, they have to go to the school and formally request, ‘I want my child to be evaluated. This is the data I have.’”
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