Parent mediated intervention for children with Autism, has been gaining traction, especially during the COVID-19 pandemic and subsequent quarantines, but really have the possibility to expand into an effective option for families across the country, for reasons beyond the pandemic. Consider the following family types:
- A child who is high-risk for autism spectrum disorder
- Living in rural areas
- With different schedules than allow for typical diagnosis/treatment appointments
- Extended waitlists for in-person treatment/diagnosis
- Frequent relocation/travel
If these caregivers are equipped with a robust, individualized parent mediated intervention program, the potential for gains and positive impact on that child and the family’s quality of life are greatly increased.
Symptoms and Statistics:
Recent research has shown that children begin exhibiting symptoms of Autism from the ages of 6-18 months, such as deficits in gross/fine motor skills, social referencing, joint attention, failed head tilt reflex, decreased eye tracking and social gaze, motor and vocal stereotypy, lower rates of smiling/positive affect and less frequent and less complex vocalizations (Tanner & Dounavi, 2020). Yet, the average age of diagnosis remains at 4 years of age. With early intervention consistently showing the most productive gains across developmental domains, it is critical that parents be enabled to initiate treatment prior to receipt of a full diagnosis to maximize functional and quality of life outcomes.
- Infants with a sibling diagnosed with ASD have a 14x greater likelihood of having ASD (Kaiser Permanente, 2016)
- 88% of High Risk for ASD infants show regression of skills in the 1st year (Ozonoff et al., 2018)
- 3% of High Risk for ASD infants exhibit atypically high frequencies of tactile sensory behaviors (Vanetten et al., 2017)
- Parent mediated intervention between the ages of 12-18 months show long-term improvement in parent responsiveness and language child outcomes (Grzadzinski et al., 2019)
Caregivers of high-risk for ASD infants, which include those with exhibiting significant symptoms and those with siblings who have autism, should have the ability begin the process of evidence-based treatment while waiting for completion of the diagnostic battery, regardless of waitlists, travel, and co-pay, whereby the main benefits combine outcomes and member experience.
Where To Go from Here: Technology
By offering evidence-based treatment information to caregivers, health plans and managed care organizations have the ability to positively impact children’s progress, reducing the gaps in skillset between them and neurotypical peers. Offering options tailored to each family, in a stepped-care model, allows for intensity of parent mediated treatment to be reflective on each family’s individual needs. Online offerings allow caregivers to complete trainings and education when it’s convenient, without travel or co-pays and allows prioritization of content they would benefit from the most. Options for caregiver support and coaching can include:
- Video and print materials on ABA principles, tips, techniques
- Online training, available on-demand
- Live coaching sessions with a BCBA
- Video sharing between families and clinicians (BCBAs)
- Holistic approaches to stress management and caregiver fatigue
With 1:36 children diagnosed with Autism, the length of time to diagnosis and treatment may be extended beyond what is already a lengthy process. It is time to provide parents with the resources and support to directly benefit their child as soon as symptoms arise.
References:
Grzadzinski, R., Amso, D., Landa, R., Watson, L., Guralnick, M., Zwaigenbaum, L., Deák, G., Estes, A., Brian, J., Bath, K., Elison, J., Abbeduto, L., Wolff, J., & Piven, J. (2021). Pre-symptomatic intervention for autism spectrum disorder (ASD): defining a research agenda. Journal of Neurodevelopmental Disorders, 13(1), [49]. https://doi.org/10.1186/s11689-021-09393-y
Kaiser Permanente. “Autism risk in younger children increases if they have older sibling with disorder.” ScienceDaily. ScienceDaily, 5 August 2016.
Ozonoff S, Gangi D, Hanzel EP, Hill A, Hill MM, Miller M, Schwichtenberg AJ, Steinfeld MB, Parikh C, Iosif AM. Onset patterns in autism: Variation across informants, methods, and timing. Autism Res. 2018 May;11(5):788-797. doi: 10.1002/aur.1943. Epub 2018 Mar 10. PMID: 29524310; PMCID: PMC5992045.
Tanner, A., Dounavi, K. The Emergence of Autism Symptoms Prior to 18 Months of Age: A Systematic Literature Review. J Autism Dev Disord 51, 973–993 (2021). https://doi.org/10.1007/s10803-020-04618-w
Van Etten, H.M., Kaur, M., Srinivasan, S.M. et al. Increased Prevalence of Unusual Sensory Behaviors in Infants at Risk for, and Teens with, Autism Spectrum Disorder. J Autism Dev Disord 47, 3431–3445 (2017). https://doi.org/10.1007/s10803-017-3227-9
