A preliminary study of care coordination services within a specialized outpatient setting for youth with autism spectrum disorder

Singh, Vini; Pinkett-Davis, Melanie; Kalb, Luther G.; Azad, Gazi; Neely, Jason; Landa, Rebecca

doi:10.1177/2053434519893659

Cited by 5 publications

(5 citation statements)

References 30 publications

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“…Additional supports may be needed to assist with coordination and follow-up of appointments. This reality reinforces the import of care coordination/family navigation services for families, particularly when the biological parents are not together, which has demonstrated value in the clinic in which this study was conducted (Singh et al, 2019).…”

Section: Discussionmentioning

confidence: 67%

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

Kalb

Holingue

Pfeiffer

et al. 2021

Autism

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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.

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Section: Discussionmentioning

confidence: 67%

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

Kalb

Holingue

Pfeiffer

et al. 2021

Autism

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“…Children should be explained and shown beforehand what the doctor will be doing. If a procedure is planned, such as a dental procedure, parents should attend the appointment in advance[ 70 ].…”

Section: Emergency Room and Outpatient Guidelinesmentioning

confidence: 99%

Autism medical comorbidities

Al‐Biltagi

2021

WJCP

145

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Medical comorbidities are more common in children with autism spectrum disorders (ASD) than in the general population. Some genetic disorders are more common in children with ASD such as Fragile X syndrome, Down syndrome, Duchenne muscular dystrophy, neurofibromatosis type I, and tuberous sclerosis complex. Children with autism are also more prone to a variety of neurological disorders, including epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headaches, and congenital abnormalities of the nervous system. Besides, sleep disorders are a significant problem in individuals with autism, occurring in about 80% of them. Gastrointestinal (GI) disorders are significantly more common in children with ASD; they occur in 46% to 84% of them. The most common GI problems observed in children with ASD are chronic constipation, chronic diarrhoea, gastroesophageal reflux and/or disease, nausea and/or vomiting, flatulence, chronic bloating, abdominal discomfort, ulcers, colitis, inflammatory bowel disease, food intolerance, and/or failure to thrive. Several categories of inborn-errors of metabolism have been observed in some patients with autism including mitochondrial disorders, disorders of creatine metabolism, selected amino acid disorders, disorders of folate or B12 metabolism, and selected lysosomal storage disorders. A significant proportion of children with ASD have evidence of persistent neuroinflammation, altered inflammatory responses, and immune abnormalities. Anti-brain antibodies may play an important pathoplastic mechanism in autism. Allergic disorders are significantly more common in individuals with ASD from all age groups. They influence the development and severity of symptoms. They could cause problematic behaviours in at least a significant subset of affected children. Therefore, it is important to consider the child with autism as a whole and not overlook possible symptoms as part of autism. The physician should rule out the presence of a medical condition before moving on to other interventions or therapies. Children who enjoy good health have a better chance of learning. This can apply to all children including those with autism.

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“…The CAST program offers one model for delivery of primary care to adults on the autism spectrum, a group that is large (Brugha et al, 2011), growing (Van Naarden Braun et al, 2015, and in need of better access to more effective health care services (Nicolaidis et al, 2013), including primary care (Weiss et al, 2018). It differs from a model often used in pediatric care, where multiple specialists focused specifically on a particular developmental disorder provide care for just that patient population in a specialized setting (Bolger et al, 2017;Singh et al, 2019;Thibadeau et al, 2020). This was an intentional design choice made during program development, as discussed previously, and we feel that it has been a strength of the program.…”

Section: Discussionmentioning

confidence: 99%

“…However, very little has been published that directly addresses how to improve primary care for adults on the autism spectrum or their transition to adult health care. Models for providing care for children with developmental disabilities, including autism, emphasize the importance of multidisciplinary specialist teams (Bolger et al, 2017;Singh et al, 2019;Thibadeau et al, 2020), which have not been consistently replicated in adult care (Bolger et al, 2017;Thibadeau et al, 2020). In some cases, generalists based in adult care settings have found strategies to address the needs of adults with developmental disabilities during their transition to adult care (Hart et al, 2019).…”

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confidence: 99%

Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum

Hart

Saha

Lawrence

et al. 2021

J Autism Dev Disord

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Current primary care models are inadequate for adults on the autism spectrum. The Center for Autism Services and Transition (CAST) clinic was developed in 2014 using feedback from parents of adults on the autism spectrum and patient-centered medical home principles. We evaluated the reach of CAST's services. As of January 2021, 858 patients were seen in CAST. Many continue to receive primary care from the CAST clinic. The program has undergone staffing changes but continues to accept new patients. We have added services such as "happy visits," pre-procedure videos, and telehealth visits. CAST provides one example of how to improve primary care for adults on the autism spectrum. More research is needed to assess the effectiveness of the CAST model. Keywords Transition to adult care • Primary care • Adolescent • Young adult • AutismAround the world, approximately 1% of adults are on the autism spectrum (Baxter et al., 2015;Brugha et al., 2011;Dietz et al., 2020), and a large number of people on the autism spectrum will be reaching adulthood over the next 5 to 10 years (Van Naarden Braun et al., 2015). The transition to adulthood in general and from pediatric to adult health care specifically are challenging for many young adults (Bonnie et al., 2015). The legal changes that begin at age 18 such as only sharing medical information with the patient, which are meant to protect a patient's privacy, can also create communication barriers for young people whose parents are regularly involved in conversations about medical care, and this is especially problematic for young people on the autism spectrum (Cheak-Zamora & Teti, 2015). Additionally, young adults on the autism spectrum have to navigate disruption of support services upon exiting the school system and changes in insurance eligibility that occur between

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A preliminary study of care coordination services within a specialized outpatient setting for youth with autism spectrum disorder

Cited by 5 publications

References 30 publications

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

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

Autism medical comorbidities

Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum

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