In recognition of Autism Awareness Month, we honor the work of Palo Alto University (PAU) alumna Lindsay Mays, PhD. Mays is a child psychologist in the Neurodevelopmental and Behavioral Psychology division of Cincinnati Children’s Hospital Medical Center providing diagnostic evaluations for children with suspected autism spectrum disorders (ASD) and working with families to determine treatment plans.
“I love my job. It's so rewarding to work with these kids and their families,” says Mays. “The more experience I have with them, the more understanding and empathetic I become.”
The demand for Mays’ skills is increasing. Last week, the
Centers for Disease Control and Prevention (CDC) published a 2020 study showing a nationwide ASD prevalence of 27.6 per 1,000 children aged 8 years old, which breaks down to 1 in 36. These findings are higher than the
previous 2018 estimate that found a prevalence of 1 in 44. But rather than focus on the data, Mays emphasizes the importance of awareness, acceptance, and appreciation of those with ASD.
“Different is not bad, different is just different. When a brain is working a little bit differently it doesn’t mean it’s wrong,” says Mays. “Appreciating diversity in that respect is something I think should be highlighted. We have a lot to learn from each other. And appreciating people’s differences is a really powerful way of learning.”
Mays graduated from PAU’s PhD in Clinical Psychology program in 2014. She completed her practicum at the UC San Francisco Center for Autism Spectrum Disorders and Neurodevelopmental Disorders. After graduation, she returned to her home state of Ohio to complete her fellowship at Cincinnati Children’s Hospital Medical Center working with children with neurodevelopmental disabilities. After completing her fellowship, Mays was hired in her current role.
Typical Day as an Autism Spectrum Disorders Child Psychologist
Mays, a clinical psychologist, works with an interdisciplinary team of providers, such as developmental pediatricians, psychiatrists, occupational therapy practitioners, speech therapists, special education specialists, and social workers. In the morning, the team meets multiple children, mostly under the age of 5, for evaluation. In the afternoons, the team gathers to discuss possible diagnoses and how best to support the child.
“Every child that walks in the door has concerns for some kind of developmental disability, but it’s not necessarily ASD,” says Mays. “The child could simply have speech and language delays, behavior problems, mood concerns, learning issues, or developmental delays in cognitive and problem-solving skills. We see a wide range of kids and our great team offers the specific support they need.”
With the team, Mays determines the diagnosis, assesses which services the child needs, and makes those recommendations in the form of a treatment plan. Since every child is unique, Mays spends a lot of time with the family to gain information about the child’s behavior in various settings, such as behavior seen at home and at school, to get a holistic picture. After Mays creates the first draft of the treatment plan, she makes adjustments according to the family's needs and abilities.
“Every child is different, and every family is different. We want to go with a treatment plan that the family will adhere to,” says Mays. “Families have different priorities, resources, and abilities. We provide all the resources and options that we can, but we need to keep in mind what is feasible for the family while still addressing the needs of the child.”
What are the Symptoms of Autism?
There are two main categories of symptoms Mays and her team look for when making an ASD diagnosis:
- Delays in social and communication skills. This includes delays in both spoken language and body language, such as lack of eye contact, and/or specific facial expressions and gestures. Also, delays in social skills, such as how the child plays independently and with others.
- Repetitive behaviors or body movements, repetitive speech, rigid behavior, and/or having a hard time with transitions.
“There is a lot of overlap of symptoms with OCD and ADHD, but ASD is a separate diagnosis,” says Mays. “Many children with ASD also have OCD or ADHD, but they are comorbidities.”
Each child diagnosed with ASD is placed on the spectrum as level 1, 2, or 3, depending on the level of support they need. Since early intervention is associated with better outcomes, Mays recommends that young children receive the most support, such as help with communication skills, regulating behavior, and learning daily living types of tasks such as toilet training and teeth brushing.
“Historically, where a child landed on the spectrum was determined by symptom severity, but this has shifted to how much support they need,” says Mays. “This reframe is a kinder way to offer a diagnosis because a level 3 diagnosis no longer infers that the child’s symptoms are ‘so severe’, rather it simply means the child will do best with more support.”
From Student to Teacher
During Mays’ fellowship at Cincinnati Children’s Hospital Medical Center, she participated in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. This is a federally-funded, multidisciplinary training program that provides training in clinical work, family-centered care, community engagement, research, interdisciplinary teams, and leadership skills with the goal of increasing competent and culturally responsive leaders and professionals in the field of developmental disabilities. Since 2018, Mays has been a core faculty member of the LEND program training graduate students from the University of Cincinnati. In this role, Mays provides didactic training on clinical psychology, leads the interdisciplinary training team diagnostic evaluations, and mentors graduate students from various disciplines, including students studying to become advocates of families affected by ASD.
“I love teaching in the LEND program, mentoring and providing supervision. But what I love most is that I get to learn a lot from the trainees,” says Mays. “There’s a greater focus on diversity, equity, and inclusion in graduate schools compared to when I was in school. The students push us to be better, and that’s such a cool thing to be a part of.”
The Future of ASD Treatment
In the past, white boys have had a higher prevalence rate of ASD compared to Black and Hispanic children. But, for the first time the results of
the study recently published by the CDC showed that the prevalence of ASD was lower among white children than among other racial and ethnic groups.
With these national numbers increasing across all demographics, the question is raised: are more children getting autism, or has the diagnostics improved?
“I think it’s a little bit of both,” says Mays. “There are more kids with autism, but also, we are getting better at identifying it. I hope these numbers will encourage us to continue to provide resources for underserved populations, not just diagnostically but with more intervention services. This study provides the data for us to ask for more support in our schools and communities.”
The CDC study also showed an increase in female 8-year-olds with ASD nationwide, which infers that diagnostics are improving to catch ASD in girls at an earlier age.
“Typically, girls present ASD differently than boys, so it’s harder to catch early,” says Mays. “Girls usually have stronger social engagement and language skills at an early age, so they aren’t always presenting the red flag of language delay. Also, oftentimes girls' behavior isn’t as disruptive as boys, they may just be withdrawn, but as the girls get older, we start to see autism symptoms that were harder to identify when they were younger.”
The cause of autism is still a mystery, and Mays does not have a clear-cut answer as to why numbers are rising. Current genetic studies have discovered genetic markers linked to ASD, but Mays says that not every child with autism has those genetic markers. Mays predicts that the cause is a mix of genetic and environmental factors.
Regarding the future of ASD treatment, Mays hopes that the CDC report will encourage more therapists to go into this field and offer the resources needed to address the rising numbers of children with ASD across the country.
“Once people get started working in the field of developmental disabilities, they get really passionate about it, so we just need more people to get their foot in the door,” says Mays. “In 10 years, I’ll still be here doing the thing that gets me out of bed every morning, and that’s working with these kids and families in a job that I really love.”
