My nephew was diagnosed with autism spectrum disorder (ASD) at the age of eight, over a decade ago when ASD often went unrecognized. He experienced many challenges throughout his childhood; however, he was able to overcome them with the dedicated support of his loving parents and family. There have been long-standing stigmas associated with ASD, fueled primarily by a lack of understanding of the disorder. Fortunately, significant strides have been made in research and awareness of ASD in recent years.
What is Autism Spectrum Disorder (ASD)?
ASD is a neurobehavioral and developmental disorder characterized by impaired social interaction, impaired communication, and restricted, repetitive behaviors that exist on a spectrum from mild to severe (Owen et al., 2020). The Autism and Developmental Disabilities Monitoring (ADDM) Network estimates that about 1 in 54 children has been identified with ASD (or 18.5 per 1,000 8-year-olds) (CDC, 2020). Their 2016 survey found ASD occurs among all racial, ethnic, and socioeconomic groups and that boys were more than four times more likely to be identified with ASD than girls. Among children identified with ASD (with IQ scores available), one-third also had intellectual disability.
Early identification and intervention are critical to reduce symptoms, improve cognition and function, decrease health care costs, allow children with ASD to enroll in mainstream schools and help adults find greater employment opportunities (Dunlap & Filipek, 2020). The American Academy of Pediatrics (AAP) recommended universal developmental screening of infants in 2001 and expanded this recommendation in 2016 to include ASD-specific evaluation at ages 18 and 24 months, at each health visit or when concerns arise (Christensen & Zubler, 2020; Dunlap & Filipek, 2020). Nurses play an important role in screening children for ASD and should have knowledge of the risk factors. These include having a sibling with ASD, prenatal exposure to valproic acid or thalidomide, advanced parental age, maternal gestational diabetes and bleeding, low birth weight, small size for gestational age, and preterm birth (Christensen & Zubler, 2020).
During each routine well check at ages 12 and 18 months, nurses and providers should assess for signs of developmental delay (Christensen, D., & Zubler, 2020):
- Developmental history and current developmental level
- Language delays or unusual language usage
- Atypical social responses, such as difficulty interacting with other children
- Sensory issues
- Repetitive behaviors
- Emotional and behavioral reactivity
In addition, there are several screening tools available such as the Modified Checklist for Autism in Toddlers, Revised with Follow Up Interview (M-CHAT-R/F), Infant-Toddler Checklist (ITC), the Social Communication Questionnaire (SCQ), and the Screening Tool for Autism in Toddlers and Young Children (STAT) that can be used for a more detailed evaluation.
Clinicians should avoid dismissing any concerns expressed by parents related to child development. Instead, listen and respond to those concerns appropriately. Document the child’s developmental history, note any findings based on their observation of the child, and share those findings with the primary care provider. Children that meet the screening criteria should be referred for further developmental and medical evaluation. Once identified and diagnosed, ASD-specific treatment must begin as early as possible, ideally before the age of two. Remember to provide parents with information and resources, such as those mandated through the Individuals with Disabilities Education Act (IDEA) which sets requirements for students with disabilities and offers evaluations within local schools’ special education programs.
Today the Autism Society is working with legislators to shift April from Autism Awareness
Month to Autism Acceptance
Month. Their goal is to “foster acceptance through improved support and opportunities in education, employment, accessible housing, affordable health care and comprehensive long-term services” (Autism Society, 2021). We can help expand this effort by educating ourselves and others. Additionally, we can fully support our ASD patients and their families.
My nephew is an extremely important individual in my life – incredibly intelligent, uniquely gifted and full of love and joy. I’m happy to report that he is successfully and independently navigating college today. Let’s continue to increase autism awareness and acceptance! For more information, check out Autism Society
and Autism Speaks
Autism Society (2021). April is Autism Acceptance Month. https://www.autism-society.org/
Christensen, D., & Zubler, J. (2020). CE: From the CDC: Understanding Autism Spectrum Disorder. The American journal of nursing, 120(10), 30–37. https://doi.org/10.1097/01.NAJ.0000718628.09065.1b
Centers for Disease Control and Prevention. (2020, March 26). Autism and Developmental Disabilities Monitoring (ADDM) Network. https://www.cdc.gov/ncbddd/autism/addm.html
Dunlap, J. J., & Filipek, P. A. (2020). CE: Autism Spectrum Disorder: The Nurse's Role. The American journal of nursing, 120(11), 40–49. https://doi.org/10.1097/01.NAJ.0000721236.69639.e3
Owen, A. M., Gary, A., Schnetter, V. (2020). Nursing care of patients with autism spectrum disorder. Nursing Made Incredibly Easy! 18(2), 28-36. https://doi.org/10.1097/01.NME.0000653180.86134.05
Weill, V. A., Zavodny, S., & Souders, M. C. (2018). Autism spectrum disorder in primary care. The Nurse Practitioner, 43(2), 21-28. https://doi.org/10.1097/01.NPR.0000529670.62188.1a