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Challenging Case: Family Navigation for Autism Spectrum Disorder
Ingrid Y Lin1, Aubyn C Stahmer2, Emily Feinberg3
1Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, School of Medicine, Stanford University, Stanford, CA.
Insights
A 28-month-old boy diagnosed with autism spectrum disorder (ASD) faced challenges accessing early intervention services due to communication barriers and unaddressed needs. Further support is crucial for this Spanish-speaking family to navigate services for their child
Area of Science:
- Developmental-Behavioral Pediatrics
- Autism Spectrum Disorder (ASD) Diagnosis
- Early Intervention Services
Background:
- A 28-month-old Spanish-speaking boy presented with developmental concerns, including language regression and repetitive behaviors, leading to positive screening for autism.
- Family history indicated parental migration and farm work, potentially impacting access to consistent developmental support.
- Previous attempts by early intervention programs were unsuccessful, highlighting potential barriers in communication and service engagement.
Purpose of the Study:
- To detail the diagnostic process and challenges encountered in a case of autism spectrum disorder in a young child from a linguistically diverse background.
- To explore the barriers to accessing early intervention and therapeutic services for families facing socioeconomic and communication challenges.
- To outline a critical juncture in a child's developmental journey, emphasizing the need for tailored support and follow-up.
Main Methods:
- Clinical assessment in a developmental-behavioral pediatrics (DBP) clinic.
- Utilized the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) for screening.
- Conducted developmental testing, behavioral observations, and reviewed parental concerns.
Main Results:
- Developmental testing revealed extremely low receptive and expressive language skills with significant cognitive and adaptive scatter.
- Behavioral observations confirmed social communication differences, repetitive behaviors, and distress with transitions, consistent with autism spectrum disorder.
- Despite diagnosis and recommendations for early intervention, applied behavior analysis, speech therapy, audiology, and genetic testing, no services were initiated within six months.
Conclusions:
- The case highlights significant delays in accessing critical early intervention services for a child with autism spectrum disorder, compounded by language and potential socioeconomic factors.
- Effective navigation of healthcare and early intervention systems is essential for families from diverse backgrounds.
- The critical need for persistent follow-up and culturally sensitive support is underscored to ensure children receive timely and appropriate developmental services.
Case:
Leo is a 28-month-old boy from a monolingual Spanish-speaking family who was referred to a developmental-behavioral pediatrics (DBP) clinic for concerns regarding autism. His parents migrated to the United States 8 years ago and currently live and work on a farm. He was born in a US hospital after an uncomplicated pregnancy and has been generally healthy. His parents first became concerned about his development when he was 16 months old. He stopped saying mama/dada in Spanish and started lining up random objects. He had frequent temper tantrums and was difficult to console during unexpected changes in his routine. He screened positive on the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) at his 18-month well-child visit, and his pediatrician referred him to the local early intervention program. Calls from the early intervention program to his parents were unanswered. At his 24-month well-child visit, he again screened positive on the M-CHAT-R/F, and his pediatrician placed a referral for a DBP consultation. During the DBP visit at 28 months of age, developmental testing indicated his receptive and expressive language skills to be in the extremely low range, with significant scatter in his cognitive and adaptive skills. Behavioral observations were consistent with parental history and showed differences in social communication and interaction, the presence of repetitive behaviors, and extreme distress with transitions. He was diagnosed with autism spectrum disorder. Recommendations, including referral to early intervention, applied behavior analysis therapy, speech and language therapy, audiology evaluation, and genetic testing, were discussed with his parents through an interpreter. An autism packet, written in Spanish, with detailed information about autism and community resources was given to the family. By the time of a follow-up DBP visit 6 months later, Leo had not started on any early intervention or therapeutic services. Where do you go from here?
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