April is Autism Awareness and Acceptance Month

Chickasaw Nation Governor Bill Anoatubby, in conjunction with the Autism Foundation of Oklahoma, declared April Autism Awareness and Acceptance Month within the Chickasaw Nation in 2023.

For years, the Chickasaw Nation has worked to broaden clinical services for First Americans with autism spectrum disorder (ASD) while promoting a greater understanding of the diagnosis.

During Autism Awareness and Acceptance Month, Chickasaw Nation mental health providers are emphasizing the importance of accurate information, culturally responsive care and coordinated support systems for individuals and families navigating ASD.

Combating misinformation about ASD

BJ Boyd, senior psychologist for the Chickasaw Nation Department of Family Services, said increased awareness of ASD has encouraged more individuals to seek help, but misinformation — particularly online — continues to create confusion and delay appropriate care.

“Many people have trouble managing social interactions and interpersonal relationships throughout their life, and there are many possible reasons for this,” Boyd said. “ASD is certainly one of them, but there are several other conditions, many of which are more common, that may also be the cause.”

Boyd said conditions such as social anxiety disorder, post-traumatic stress disorder, chronic depression, attention-deficit/hyperactivity disorder and certain personality disorders can present with overlapping symptoms.

“I think it’s wonderful that our increased awareness of ASD has people asking for help, but it’s important to be open to the possibility that your struggles may have another cause and any help for them may lie down a different path.”

Alicia Baker, Pediatric Mental Health Care Access (PMHCA) Clinical Lead for the Chickasaw Nation Department of Family Services, said misconceptions can also prevent children from being properly identified.

Baker said one misconception she often hears is that ASD must present in a certain way. In reality, ASD can present differently across individuals, and sometimes children may be overlooked if providers or families are expecting only the most commonly recognized signs. Not every person on the spectrum withdraws or isolates, she said.

This misunderstanding can be especially harmful for girls with ASD, Baker added.

“Many girls are very observant and may pick up on social behaviors,” Baker said. “They may learn to mask or mimic social skills, which can lead to them being overlooked if we’re not paying close attention.”

Another misconception is that intelligence is limited by diagnosis.

“While cognitive functioning can vary, it is not a blanket statement we can apply,” Baker said. “Many individuals on the autism spectrum have very specific and remarkable skill sets — some excel in math, some teach themselves to read early, some learn multiple languages and some go on to become engineers or leaders in their fields.”

Misinformation about ASD on social media has also complicated the path to care, Boyd added.

“Much of the misinformation presented on social media is provided by people with no expertise, and it contains inaccurate information on the causes, symptoms or treatment of autism,” he said.

He referenced research from Drexel University indicating only about 27% of ASD-related information on TikTok was accurate.

“This causes a lot of confusion for families,” Boyd said. “They feel as though they have gotten all the information they need only to have their health care provider tell them they’ve been misinformed once they seek help. It winds up delaying accurate identification and intervention.”

Families may encounter a wide range of information about autism online, which can sometimes make it difficult to know what sources are reliable. To distinguish reputable medical information from unreliable sources, Boyd recommends seeking information from trained professionals and recognized professional associations, including the American Academy of Pediatrics, the American Psychological Association and the American Psychiatric Association.

“I would avoid websites or social media where an individual is presenting themselves as an expert and providing their personal theories or treatment methods and not referencing professional standards advocated by the professional groups I mentioned,” he said.

Baker encourages families to seek evidence-based, peer-reviewed research.

“It’s especially meaningful when research includes individuals on the autism spectrum and when studies are reviewed by autistic individuals themselves,” she said. “Representation matters in research, and families deserve information that is both scientifically sound and inclusive of lived experience.”

Addressing ASD myths

Despite years of research, myths about what causes ASD persist.

“Autism is not caused by vaccinations,” Boyd said. “This has been disproven many times over and there is no conspiracy to cover up a connection.”

He said use of Tylenol during pregnancy does not appear to be associated with ASD.

While misinformation often focuses on causes, Baker said she prefers to redirect the conversation.

“There are many myths about the causes of autism, but I don’t always feel it’s productive to center the conversation there,” she said. “What I do want parents to know is that they are not at fault for their child’s diagnosis. It is not because of something they did or did not do.”

She encourages families to focus on understanding and support.

“Rather than focusing on blame, our energy is better spent increasing understanding, building knowledge and finding the right support so each child can thrive and grow into who they are meant to be,” Baker said.

Culturally responsive care

With misinformation online, Boyd and Baker recommend families be intentional about the sources they rely on. For First American families, culturally informed care plays a critical role in accurate diagnosis and effective support.

“First American families benefit from culturally responsive care where the people providing the services understand our cultural history and life in our communities today,” Boyd said.

Culturally informed providers may be better equipped to distinguish symptoms of ASD from culturally based behaviors. Baker said certain traits associated with ASD — such as reduced eye contact or limited facial expression — may overlap with some First American cultural norms.

“In many Native communities, prolonged eye contact may not be encouraged, and emotional expression may be more reserved,” Baker said. “Without cultural understanding, those differences could be misinterpreted during an assessment.”

Meeting with providers who understand First American history, values and family structure ensures evaluations are respectful and well-rounded, Baker added.

Chickasaw Nation’s coordinated approach to care

Boyd said First American families can access coordinated services rather than navigating multiple systems independently through the Chickasaw Nation.

“Addressing ASD often involves multiple types of providers — medical, mental health, educational advocacy,” Boyd said. “Within our system, we can connect those services together for families, so they aren’t having to find an outlet for each one independent of the other. We are all on the same team, working alongside the family.”

Baker said the Chickasaw Nation has a well-established workflow to help families navigate their child’s care, describing the process as a “full-circle moment.”

It often begins at a well-child check, where early developmental concerns can be identified. From screening and comprehensive assessment to referrals for occupational therapy, speech therapy, applied behavior analysis or feeding therapy, families are guided through each step.

“Throughout the process, we strive to keep communication open and make sure families understand each step and what to expect next,” she said.

Diagnosis in adulthood

Boyd said he is seeing an increase in adults pursuing ASD evaluations.

“I think we have become much more aware of autism as a society, especially the fact that it exists on a spectrum,” he said. “More adults are able to recognize potential symptoms in themselves and then request an evaluation.”

Adult evaluations are comprehensive, and the process typically includes a detailed personal history interview, a review of medical and mental health history and efforts to confirm symptoms were present in childhood.

Boyd said standardized psychological tests are often employed during evaluations to measure personality traits and emotional functioning. Depending on which specific ASD symptoms are reported, an assessment of sensory, verbal or cognitive functioning may be necessary.

“Finally, we will give the person recommendations for other services that might be beneficial for them,” Boyd said. “As part of assessing ASD, we are also broadly assessing for any other mental health problems and can make recommendation for those as well if needed.”

Receiving a diagnosis can provide clarity and relief.

“For many people, it helps them understand themselves and gives them a way to explain to family and friends some of the things that make them who they are,” Boyd said.

A diagnosis can also often open the door to services, workplace accommodations or educational support, Boyd added.

For adults who are hesitant to seek evaluation, Boyd offers reassurance.

“Even if it turns out you aren’t on the spectrum, something is leading you to ask that question,” Boyd said. “We are happy to help you learn more about yourself, whether the answer is ASD or something else.”

Supporting parents and caregivers

While much attention focuses on individuals diagnosed with ASD, parents and caregivers also need support.

“The emotional challenge I most often see parents and caregivers of children with autism face is feeling like they have to do it all,” Baker said.

After a diagnosis, families are often presented with multiple therapy recommendations for their child. Without clear guidance, Baker said parents may feel they are failing their child if they do not pursue every option.

“That just isn’t true,” she said. “Our role is to support parents in understanding their child’s diagnosis and helping them prioritize what will be most beneficial for their child so they can build skills and continue progressing in development.”

Isolation can also weigh heavily.

“I also see parents feeling very alone — like their child is the only one diagnosed with autism,” Baker said. “It becomes even harder when extended family members don’t understand the diagnosis or aren’t supportive.”

She makes a point to reassure parents and caregivers that support continues beyond the initial evaluation.

“I often tell families, ‘Let’s not make this our last conversation,’” Baker said. “I don’t want to simply share a diagnosis, give treatment recommendations and say goodbye. I want families to know there is community and continued support available.”

Mental health support for parents and caregivers is critical, she added. Many balance full-time jobs, school meetings and therapy appointments — sometimes up to 30 hours of therapy per week — while serving as advocates and coordinators of care.

“We want to ensure parents’ mental health is supported so their cup is full,” she said. “When caregivers are supported, they are better able to support their child.”

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