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Predicting Intervention Use in Youth with Rare Variants in Autism-Associated Genes.

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Family and child factors influence service type for autistic youth with genetic variants, but not service intensity. Behavior therapy is underutilized, especially for those without an autism spectrum disorder (ASD) diagnosis.

Keywords:
Autism-associated genesIntensity of servicesService utilization

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Area of Science:

  • Neurodevelopmental Disorders
  • Genetics
  • Healthcare Services Research

Background:

  • Autistic youth with rare genetic variants often present with complex needs.
  • Understanding service utilization is crucial for optimizing outcomes in this population.
  • Existing research on service utilization in autism lacks focus on genetic variants.

Purpose of the Study:

  • To investigate how caregiver and child factors impact service utilization among youth with autism-associated genetic variants.
  • To determine predictors of service type and intensity (hours/year) for these children.
  • To examine the role of an autism spectrum disorder (ASD) diagnosis in service access.

Main Methods:

  • Analysis of service utilization data from 125 children with autism-associated genetic variants.
  • Inclusion of caregiver factors (autistic traits, education, income) and child factors (autistic traits, sex, age, IQ, comorbidities).
  • Statistical modeling to predict service type and intensity.

Main Results:

  • Variability in service types received, influenced by child demographics, behaviors, and mental health.
  • Speech therapy was the most common service (87.2%).
  • Behavior therapy was the least utilized service, uniquely predicted by an ASD diagnosis; service intensity was consistent once initiated.

Conclusions:

  • Demographic and clinical factors significantly affect the ability of families to obtain services for autistic youth with genetic variants.
  • Service intensity is less influenced by these factors once a service is accessed.
  • Low uptake of behavior therapy highlights a need for improved access, particularly for youth with genetic variants who do not meet ASD diagnostic criteria but exhibit significant autistic features.