The history of understanding autism spectrum disorder has been forged through decades of twisted speculation and misunderstandings. In years as early as the1930s, documented studies of children with traits that would today be classified as autism were labeled as having childhood schizophrenia. Early misunderstandings stigmatized autistic people and made outreach for help difficult for parents and caretakers.
Fortunately, thanks to scientific progress and the dedication of autism advocates, the 21st century has brought new understanding and perspectives on autism. In 2007, the United Nations General Assembly declared April 2 to be Autism Awareness Day and now, the month of April is deemed World Autism Month. Today, researchers and clinicians such as Rebecca McNally Keehn, PhD and Jordan Huskins, MD are dedicated to approaching early autism from a strengths-based perspective by celebrating neurodiversity and building capacity in communities for early and equitable access to autism diagnosis and care.
McNally Keehn, an associate professor of pediatrics at the Indiana University School of Medicine, associate chief of the Division of Developmental Medicine, and associate director of Health Systems and Policy in Children’s Health Services Research, spent much of her adolescent years providing horseback riding lessons to children and becoming fascinated with psychology. Then, while in college, McNally Keehn received a job working at a residential treatment center for people with traumatic brain injuries and neurodevelopmental disabilities which sealed the deal on her pursuit of becoming a clinical psychologist. However, McNally Keehn's passion for autism health services research did not surface until nearly a decade into her career, when she had the realization that conducting research is a necessary step to improving clinical care for children at scale.
“Seeing the kind of day-to-day challenges that kids and families face in trying to get access to autism related care and community support fueled my transition into my current career, which is health services research in autism,” McNally Keehn said. “My experiences as a clinician really drive the research questions and the capacity building work that I do to hopefully impact health services on a larger scale for kids and families.”
McNally Keehn's colleague, Huskins, an assistant professor of clinical pediatrics at the IU School of Medicine and pediatrician in developmental medicine at Riley Children’s Health, knew from a young age that he wanted to help children and families as he watched his mother, an elementary school teacher, nourish the field of primary education.
“I knew I wanted to work with families, but I was really drawn to medicine and having a tangible way to care for children and families,” Huskins said. “While in my pediatric residency, I saw that neurodevelopmental care was present but didn’t have a whole lot of training after pediatric residency. I spent a few years in Kenya and got see first–hand some of the ways in which this population of children are marginalized."
When Huskins came back to the states, he found that although the awareness for the vulnerable population was stronger, there were still gaps in the care being provided. After an opportunity arose to collaborate with the Early Autism Evaluation Hub Network (EAE Hub) that McNally Keehn co-directs with Mary Ciccarelli, MD and Carrie Leathers, MD, Huskins became devoted to the community. Now, Huskins leads the Riley-based Indianapolis EAE Hub for early autism care and serves as an educator to colleagues and medical trainees.
Although children can be reliably diagnosed in the second year of life, many children across the United States are not being diagnosed until closer to 4 years old.
“What we know about early intervention is that the earlier kids get access to support, the better their developmental outcomes are, the better that families can adjust to diagnosis, and then ultimately, the more costs and burden on our systems are saved when we intervene early,” McNally Keehn said. “The problem, not only in the US but in Indiana, is there are never going to be enough specialists like myself and Jordan [Huskins] to serve the now 3% of children who are identified as having autism. So, we need to develop innovative solutions to address this access problem.”
McNally Keehn develops and tests solutions to improve access on a global scale with the focus on building the capacity within primary care to address early diagnosis. By training general primary care clinicians to do early autism evaluations, early intervention and care becomes possible within the locality of a patient's community, instead of having to commute long distances for care.
“Indiana has been at the forefront of innovating and demonstrating that this kind of care model is valid and produces high diagnostic accuracy and acceptability to families,” McNally Keehn said. “We need to continue to push innovation forward to make sure that it is scalable and sustainable across our state and beyond.”
Currently, McNally Keehn's team is working on harnessing both neuroscience and artificial intelligence to develop new tools for non-specialists to use in primary care and other community settings to improve efficacy and accuracy.
“With our colleagues at Purdue, we have built an integrated clinical and eye tracking model that has demonstrated high accuracy for autism diagnosis and will be further testing that model and hopefully disseminating it in the coming months or year.” McNally Keehn said.
Major shifts in care have occurred within the last decade.
The Diagnostic and Statistical Manual of Mental Disorders has long been used by experts to diagnose and classify mental health disorders. The fourth edition separated entities like Asperger's syndrome, autism, pervasive developmental disorder and other diagnostic categories. The fifth edition of the manual brought these classifications under one umbrella, streamlining care and identification of children with common symptoms. With the previously separated entities now under one spectrum, clinicians are granted more freedom to provide tailored care to an individual child’s case.
Not only has the care and understanding of autism shifted over the last decade, but perceptions have shifted, too. Huskins explained that families are now embracing awareness and celebration of the neurodiverse community and seeking providers who are in line with that care plan. Additionally, views have shifted from autism being considered a disease that needs to be cured and looking more at identifying the specific challenges that families are struggling with especially in the early years, be it nutrition and feeding, sleep or quality-of-life.
McNally Keehn added that the greater awareness and understanding of the needs of autistic people seen over the last decade has reinforced the acknowledgement that, “we have to work together to address the very real needs of autistic people and their families in our community systems."
Huskins and McNally Keehn reflected that discussion of autism and its diverse range of unique characteristics is still developing as clinicians and researchers work with autistic children and their families through early childhood, primary education, and beyond.
“Human nature wants to categorize things into simple groups, but humans don’t work that way. There’s a saying in our field that if you’ve met one person with autism, you’ve met one person with autism, and I think that speaks to why simple categorization of autism subtypes doesn’t necessarily work,” McNally Keehn said. “The individual profiles of autistic people are so variable that categorizing them into a simple system does not capture their individual strengths and needs. Tailoring care to the child and their family is of the most importance.”
For more information on available resources, visit Riley's Children's Developmental Medicine Team page.
