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ERIC Number: EJ1478439
Record Type: Journal
Publication Date: 2025-Aug
Pages: 10
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-0162-3257
EISSN: EISSN-1573-3432
Available Date: 2024-05-29
Predicting Intervention Use in Youth with Rare Variants in Autism-Associated Genes
Hannah R. Benavidez1; Margaret Johansson2; Elizabeth Jones2; Hannah Rea2,3; Evangeline C. Kurtz-Nelson4; Conor Miles2; Alana Whiting2; Curtis Eayrs2; Rachel Earl2; Raphael A. Bernier2; Evan E. Eichler5,6; Emily Neuhaus2,3
Journal of Autism and Developmental Disorders, v55 n8 p2909-2918 2025
Specialized multidisciplinary supports are important for long-term outcomes for autistic youth. Although family and child factors predict service utilization in autism, little is known with respect to youth with rare, autism-associated genetic variants, who frequently have increased psychiatric, developmental, and behavioral needs. We investigate the impact of family factors on service utilization to determine whether caregiver (autistic features, education, income) and child (autistic features, sex, age, IQ, co-occurring conditions) factors predicted service type (e.g., speech, occupational, behavioral) and intensity (hours/year) among children with autism-associated variants (N = 125), some of whom also had a confirmed ASD diagnosis. Analyses revealed variability in the types of services used across a range of child demographic, behavioral, and mental health characteristics. Speech therapy was the most received service (87.2%). Importantly, behavior therapy was the least received service and post-hoc analyses revealed that use of this therapy was uniquely predicted by ASD diagnosis. However, once children received a particular service, there was largely comparable intensity of services, independent of caregiver and child factors. Findings suggest that demographic and clinical factors impact families' ability to obtain services, with less impact on the intensity of services received. The low receipt of therapies that specifically address core support needs in autism (i.e., behavior therapy) indicates more research is needed on the availability of these services for youth with autism-associated variants, particularly for those who do not meet criteria for an ASD diagnosis but do demonstrate elevated and impactful child autistic features as compared to the general population.
Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Authoring Institution: N/A
Grant or Contract Numbers: R01MH100047; R01MH101221; U01MH11970502S1
Author Affiliations: 1University of Washington, Department of Psychology, Seattle, USA; 2University of Washington, Department of Psychiatry & Behavioral Sciences, Seattle, USA; 3Seattle Children’s Research Institute, Center on Child Health, Behavior, and Development, Seattle, USA; 4Indiana University School of Medicine, Department of Pediatrics, Indianapolis, USA; 5University of Washington School of Medicine, Department of Genome Sciences, Seattle, USA; 6Howard Hughes Medical Institute, Seattle, USA