Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood

Abstract

Most individuals with autism spectrum disorder (ASD)-a complex, life-long developmental disorder-do not have access to the care required to address their diverse health needs. Here, we review: (1) common barriers to healthcare access (shortage/cost of services; physician awareness; stigma); (2) barriers encountered primarily during childhood (limited screening/diagnosis; unclear referral pathways), transition to adulthood (insufficient healthcare transition services; suboptimal physician awareness of healthcare needs) and adulthood (shortage of services/limited insurance; communication difficulties with physicians; limited awareness of healthcare needs of aging adults); and (3) advances in research/program development for better healthcare access. A robust understanding of barriers to accessing healthcare across the lifespan of autistic individuals is critical to ensuring the best use of healthcare resources to improve social, physical, and mental health outcomes. Stakeholders must strengthen healthcare service provision by coming together to: better understand healthcare needs of underserved populations; strengthen medical training on care of autistic individuals; increase public awareness of ASD; promote research into/uptake of tools for ASD screening, diagnosis, and treatment; understand specific healthcare needs of autistic individuals in lower resource countries; and conduct longitudinal studies to understand the lifetime health, social, and economic impacts of ASD and enable the evaluation of novel approaches to increasing healthcare access.

One size does not fit all: Pharmacists’ perspectives on disparities in quality care provided to adult patients on the Autism Spectrum Disorder

“…This decrease their willingness to seek care. 34 Therefore, the urge for a collaborative care design for the treatment and management of ASD is emphasized 33 The genuine desire of almost all providers to be better prepares to serve patients with ASD and provide optimal patient care was very encouraging. Questionnaire participants were given three choices, as well as, an open-ended option to add to at the end of the questionnaire on how to improve their quality of care they provide to adult patients with ASD.…”

Identification of Autism in Children Using Static Facial Features and Deep Neural Networks

“…Furthermore, diagnosis is sometimes delayed due to a lack of access to the available ASD specialist. Delays in diagnosis might also be caused by the social, economic, and educational backgrounds of the parents [ 12 , 13 , 14 ].…”

Mini-Review: Genetic Literacy and Engagement With Genetic Testing for Autism Spectrum Disorder

“…The potentially lengthy diagnostic process, often involving developmental pediatricians, neurologists, and geneticists, could mean a child is not diagnosed with ASD for years following initial symptoms. The age at which parents notice symptoms in their children depends on their awareness of ASD; first-time parents who are less aware of typical developmental milestones are less likely to notice developmental delays ( Malik-Soni et al, 2021 ). Caregivers who notice symptoms in a child by 18 months of age are more likely to receive a prompt diagnosis, though many do not seek assessment until 35 months of age ( Becerra-Culqui et al, 2018 ).…”

“…However, because families may be referred to multiple medical professionals throughout the assessment, such as a geneticist, pediatrician, neurologist or genetic counselor, there is not always a logical or simple referral method. Many physicians report that they lack the specialized knowledge required to screen and diagnosis children with ASD ( Malik-Soni et al, 2021 ). Medical guidelines also present conflicting information about which provider should offer a referral for genetic testing and when ( Barton et al, 2018 ).…”

“…Medical guidelines also present conflicting information about which provider should offer a referral for genetic testing and when ( Barton et al, 2018 ). As such, providers are left unsure of the specific genetic tests offered to families, and many providers have not received adequate training in treating autistic children and/or are unaware that genetic testing is an option for ASD ( Barton et al, 2018 ; Malik-Soni et al, 2021 ). For example, the “gold-standard” diagnostic testing is often done by qualified psychologists who are not working with a medical team.…”