Child and Family Characteristics that Predict Autism Spectrum Disorder Specialty Clinic Appointment Attendance and Alignment with Providers

Self Cite

A reliable autism spectrum disorder (ASD) diagnosis can occur as early as 18 months; however, the average age at diagnosis in the United States is over 2 years later. While there are numerous well-known barriers to seeking an ASD diagnosis, no research has examined if separation between a child’s biological parents affects timing of ASD diagnosis for their child. Data for this study were obtained from 561 children ( M age = 5.4 years, SD = 3.9 years) referred to an urban, outpatient ASD specialty clinic for their first ASD evaluation. Biological parents self-reported their relationship status during the evaluation, which was then categorized as either “together” (married or living together but not married) or “not together” (separated, divorced, or never married). An inverse-probability of exposure weighted linear regression model, which adjusted for 16 different child, family, and sociodemographic variables, was utilized to assess differences in child age of ASD diagnosis between groups. At the time of diagnosis, most children’s biological parents were together (69%) versus not together (31%). In the fully adjusted model, children of parents who were together were diagnosed 1.4 years earlier than those who were not together ( p < 0.001). Strategies for supporting these families and reducing age disparities are indicated. Lay abstract Autism spectrum disorder (ASD) can be diagnosed as early as 18 months of age. However, the average age at diagnosis in the United States is over 2 years later. A lot has been written about the many barriers families face when seeking a diagnosis for their child. One area of research that has received no attention is whether separation between a child’s biological parents affects the age at which a child is diagnosed with ASD. This study was conducted among 561 children who were receiving an ASD diagnosis for the first time. On average, these children were 5 years of age. The study took place in an urban, outpatient specialty autism clinic in the United States. Biological parents self-reported their relationship status during the evaluation. This was categorized as either “together” (married or living together but not married) or “not together” (separated, divorced, or never married). At the time of diagnosis, most children’s biological parents were together (69%). We found children of parents who were together were diagnosed 1.4 years earlier than those who were not together. These findings have important implications for providing support to families that separate early in a child’s life, with the goal of reducing the age at ASD evaluation among single parents and those who have been separated from their child’s other biological parent. Providing support to these families is important since earlier age at diagnosis leads to earlier intervention, which can improve long-term outcomes for the child, family, and community as a whole.

Section: Discussionmentioning

confidence: 99%

Parental relationship status and age at autism spectrum disorder diagnosis of their child

Kalb

Holingue

Pfeiffer

et al. 2021

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“…Content was based on the current available evidence and best-practice approaches for healthcare for youth and adults with ASD (e.g. Azad, Singh, Kalb, Pinkett-Davis, & Landa, 2019; Baghdadli et al, 2018; Holmes, Strassberg, & Himle, 2019; Lee, Heerwagen, & Loftin, 2019; Nicolaidis, Kripke, & Raymaker, 2014; Roux et al, 2015; Sala, Hooley, Attwood, Mesibov, & Stokes, 2019; Saqr et al, 2018; Seltzer et al, 2004; Walter, Johnson, & Schomberg, 2009). Didactic topics included the following: What is Autism?, Psychiatric Co-occurring Conditions, Medical Co-occurring Conditions, Behavior Management in Primary Care, Supporting Families through Transition to Adulthood, Healthcare Transition Planning (Role of the PCP), Life Skills Development, Supporting the Self-Advocate, Guardianship, Special Education Transition to ADA, Housing and Community Supports for Adults with Autism, and Relationships and Sexuality in Autism.…”

Section: Methodsmentioning

confidence: 99%

ECHO Autism Transition: Enhancing healthcare for adolescents and young adults with autism spectrum disorder

Mazurek

Stobbe

Loftin

et al. 2019

Transition-age youth and young adults with autism spectrum disorder have complex healthcare needs, yet the current healthcare system is not equipped to adequately meet the needs of this growing population. Primary care providers lack training and confidence in caring for youth and young adults with autism spectrum disorder. The current study developed and tested an adaptation of the Extension for Community Healthcare Outcomes model to train and mentor primary care providers ( n = 16) in best-practice care for transition-age youth and young adults with autism spectrum disorder. The Extension for Community Healthcare Outcomes Autism Transition program consisted of 12 weekly 1-h sessions connecting primary care providers to an interdisciplinary expert team via multipoint videoconferencing. Sessions included brief didactics, case-based learning, and guided practice. Measures of primary care provider self-efficacy, knowledge, and practice were administered pre- and post-training. Participants demonstrated significant improvements in self-efficacy regarding caring for youth/young adults with autism spectrum disorder and reported high satisfaction and changes in practice as a result of participation. By contrast, no significant improvements in knowledge or perceived barriers were observed. Overall, the results indicate that the model holds promise for improving primary care providers’ confidence and interest in working with transition-age youth and young adults with autism spectrum disorder. However, further refinements may be helpful for enhancing scope and impact on practice.

“…Clinically, if White parents think their children have ASD, they may be more likely to schedule appointments and follow-through with the diagnostic process compared to non-White families. Azad et al (2019) showed that Black families were less likely to keep their initial appointment at an ASD clinic. The extent to which families use services has meaningful implications for children.…”

Section: Discussionmentioning

confidence: 99%

“…In addition, Black parents reported that primary care providers ignored their early concerns about developmental delays (Dababnah et al, 2018). In specialty care, Black/ African American families expressed more initial doubts about an ASD diagnosis compared to White families (Azad et al, 2019). Donohue et al (2019) examined racial differences in parents' concerns about their child's development and found that Black parents reported fewer ASD-specific concerns.…”

mentioning

confidence: 99%

The influence of race on parental beliefs and concerns during an autism diagnosis: A mixed-method analysis

Azad

Holingue

Pfeiffer

et al. 2021

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The purpose of this mixed-method study was to examine racial differences in parental beliefs and concern about autism spectrum disorder (ASD) versus clinical judgment. The sample included 489 children with ASD undergoing their first ASD evaluation. Parent belief that their child had ASD was highest among parents of White children. White children whose parents believed the child had ASD had lower ASD severity. Parents of Black/African American and Hispanic children were more likely to report communication concerns than parents of White children. Parental concern about social communication was related to higher ASD severity for Hispanic children. Implications for diagnostic processes are discussed. Lay abstract The goal of this study was to examine if there were differences between races in parental concern and belief about autism spectrum disorder (ASD) and the perspectives of clinicians. We studied 489 children with ASD who were having their first evaluation at an ASD clinic. Parents of White children most often believed that their child had ASD. However, White children whose parents believed the child had ASD were less severe in their symptoms. Parents of Black/African American or Hispanic children were more likely to have concerns about communication than parents of White children. In Hispanic families, parental concern about social communication was related to more severe symptoms in children. We discuss the implications of our findings for diagnosis.