By Mylika Scatliffe,
AFRO Women’s Health Writer
April is National Autism Acceptance Month. It is a month set aside to celebrate the contributions and diversity within the community made up of individuals on the autism spectrum.
Nearly 36 years ago President Ronald Reagan issued the first presidential proclamation for National Autism Awareness Month to solidify annual recognition, which had been taking place for more than a decade. In 2021, the focus evolved to encouraging respect, dismantling myths and stigmas and recognizing talents of people with autism.
As reported by the Centers for Disease Control and Prevention (CDC), an estimated one in 36 children has been identified with autism spectrum disorder. Autism is a neurodevelopmental condition that involves persistent challenges with social communication, restrictive interests, and repetitive behaviors.
According to the American Psychiatric Association, autistic characteristics can be noticed by parents and caregivers or pediatricians before a child reaches his or her first birthday, but symptoms typically are not more consistently observed until a child is two or three years of age. The symptoms might be mild and not apparent until a child begins to attend school or daycare where the signs and behaviors are more noticeable when he or she begins to spend more time amongst classmates and peers.
Asia Bailey, of Glen Burnie, Md., first noticed her son Nasir Avery did not have the typical interactions for children his age when he was four years old.
“When I would pick him up from daycare, I noticed he was always running with the other kids, but not engaging with them. He was more of a loner,” said Bailey.
Bailey observed some other behaviors in Nasir like hyperactivity and not having conversation with other people. “Sometimes we’re in the car and he’s talking, but it’s all scripted things that he’s remembered from watching television,” said Bailey.
Nasir was diagnosed with autism earlier this year. Now that Bailey is aware that he is on the autism spectrum, she better understands his behavior.
“I have more patience now when Nasir has tantrums or doesn’t follow directions,” Bailey continued.
Researchers at the Kennedy Krieger Institute in Baltimore shared their expertise on autism spectrum disorder with pediatric professionals around the globe in the medical journal, Pediatric Clinics.
The newly released volume of the publication, titled “Pediatric Management of Autism,” features five original articles written by 10 faculty members from the Institute. In the past there has been limited information available to pediatric medical providers and researchers about autism. This current volume addresses the gap in available resources for those caring for children and youth on the autism spectrum.
Dr. Roma Vasa, director of Psychiatric Services, Center for Autism Services, Science, and Innovation (CASSI) at Kennedy Krieger contributed to the newly released volume and spoke with the AFRO about the vital role pediatricians play in managing patients with autism.
“The pediatrician is crucial because signs of autism usually emerge in the early developmental stages. Infants, toddlers, and preschool children are frequently going to the pediatrician for well checks, vaccines, and the usual routine developmental monitoring,” said Vasa.
These periodic visits allow a child’s provider to discuss developmental milestones, ask questions and give parents the opportunity to mention any concerning behaviors or symptoms.
“The pediatrician’s office is where they can recognize the signs, complete screenings, and if there is a high index of suspicion of autism, make a specialist referral to establish and confirm a diagnosis,” continued Vasa.
Autism affects two areas of functioning – an individual’s social communication and restrictive and repetitive interests. “The way an individual interacts with others and their capacity to connect and understand social relationships is one domain of autism and the other is repetitive behaviors,” said Casa.
“That’s a lot of words that basically refers to certain behavioral features that are clustered together as part of the autism syndrome; there are four of them,” Vasa explained.
These four behaviors include:
- Any type of repetitive behavior or speech
- Any type of hyper focus on a particular activity, object, or interest
- The need for routine and for things to always be a certain way
- Experiencing differences in processing sensory stimuli like sounds, lights, tastes, and textures. Some people may have a heightened reaction or sensitivity and others may have an underreaction.
Autism awareness, these days, has evolved into autism acceptance.
“Autism spectrum disorder is just another way individuals process information,” Vasa told the AFRO.
Pediatricians play a vital role in managing children and youth with autism not only because of the two areas of functioning that are affected but for their general overall health. Autistic individuals have higher rates of medical problems like seizures, gastrointestinal problems, and higher rates of mental health conditions. Pediatricians may recognize these conditions and can facilitate early intervention and manage these conditions or make referrals to specialists better equipped to do so.
A combination of genetic factors and environment leads to increased vulnerabilities for autistic people. Their communication challenges frequently lead to frustration, sadness, and loneliness. Children and youth with autism have high rates of mental health conditions like attention ADHD, anxiety disorders, depressive disorders and the rates of suicide are three times higher in individuals with autism.
“Behaviors like aggression and self-injurious acts occur at very high rates in people with autism,” said Vasa.
Early intervention is also important for young people with function within the community.
Bailey described her tears when she learned Nasir was autistic. “I cried for him because I’m sure it’s frustrating for him not to be able to articulate what he needs,” Bailey recalled.
“We really want to make sure we are building skills for a young child to be able to navigate their school and community,” said Dr. Ebony Holliday, assistant director of Community programs at CASSI at Kennedy Krieger.
“This might be making sure children are learning how to communicate. It might be verbal speech or some other method. It’s not about prioritizing one communication system over another, but we just want to make sure a child has the ability to communicate because that will be crucial as they get older,” Holliday continued.
Communication ability will always be a focus for Holliday because the behavioral challenges often associated with children with autism are rooted in their inability to communicate and interact with their environment.
What does autism acceptance look like?
“When I think of autism acceptance, I consider it full inclusion. When we think about neurodiversity, we note that differences are not necessarily deficits. A diagnosis of autism is not bad,” Holliday said.
Holliday stresses the importance of really looking at and valuing the contributions of autistic individuals and making sure we are fully listening to them, and that they are fully heard. She wishes to elevate the concept of the lived experiences of autistic individuals.
There are misconceptions and lack of understanding of what autism actually looks like. Some people might believe that everyone with autism has an intellectual disability which might not be true at all. Autism exists on a spectrum, and there may be autistic individuals who are simultaneously gifted with extremely high IQs.
Certain cultures and communities may also believe that autism doesn’t affect them. Autism does not discriminate. It affects all genders, races, and ethnic groups.
Acceptance includes recognizing that while there are core features and characteristics for autistic individuals, the spectrum and level at which different people are affected is vast.
“We don’t just want professionals that have been working in the field for years or many decades to dictate things,” said Holliday. “While we value their contributions, lived experience of actual autistic individuals is a big priority. We want to make sure those voices are included in what we do.”