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The “diagnostic odyssey” in autism, from initial concerns to diagnosis, is often a long and complicated process for families, prolonged by wait-lists due to a backlog of patients awaiting evaluation by subspecialists.
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Multiple clinical autism centers throughout the United States have implemented innovative programs to directly address this diagnostic bottleneck, resulting in decreased wait times in their local communities.
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A change in clinical approach from a focus on diagnosis to a focus on
Whittling Down the Wait Time: Exploring Models to Minimize the Delay from Initial Concern to Diagnosis and Treatment of Autism Spectrum Disorder
Section snippets
Key points
The autism “diagnostic odyssey”: the traditional model
For most families, initial concerns for ASD are brought up by a parent at a routine well-child visit or identified by routine screening at the 18- and 24-month well-child visit.20 Ideally, according to AAP guidelines, a child is then referred by the provider for audiologic evaluation, EI education services, and a comprehensive ASD evaluation.
Therefore, what is a comprehensive ASD evaluation? There is wide variability in the clinical structure of these subspecialty service providers21; however,
Novel and innovative models for autism spectrum disorder diagnosis
The problem of prolonged wait times for ASD diagnosis and services has not gone unrecognized by families or by ASD service providers. Public outcry has spurred multiple autism centers around the country to devise creative and novel clinical models to reduce the waiting time that families endure between initial concerns and diagnosis, delaying initiation of therapy.
Additional opportunities in technology and public policy
Other opportunities may exist for creative models that improve access to care for children requiring evaluation for ASD. Some of these next steps capitalize on modern technology or may call for changes in public policy. Here, a few examples of models that have the potential to further expand upon the strategies above are discussed.
Telemedicine programs are expanding throughout medicine, including those that focus on developmental disabilities, and have improved access to care, particularly for
Next steps
All of the novel models discussed have shown positive impact on the local communities that they serve. However, efforts to redesign clinical services for the diagnosis of ASD are not pervasive in the medical community. This lack of generalized reform of clinical models is evidenced by the fact that despite substantial efforts by these and other programs, the average age of ASD diagnosis in the United States has still not declined. There is still more work to do to implement innovative programs
References (53)
- et al.
Autism spectrum disorder and autistic traits in the Avon Longitudinal Study of Parents and Children: precursors and early signs
J Am Acad Child Adolesc Psychiatry
(2012) - et al.
Long-term outcomes of early intervention in 6-year-old children with autism spectrum disorder
J Am Acad Child Adolesc Psychiatry
(2015) - et al.
Enhancing early identification and coordination of intervention services for young children with autism spectrum disorders: report from the Act Early Regional Summit Project
Disabil Health J
(2012) - et al.
Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: a systematic review and meta-analysis
J Pediatr
(2009) - et al.
Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2012
MMWR Surveill Summ
(2016) - et al.
Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010
MMWR Surveill Summ
(2014) - et al.
Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the autism and developmental disabilities monitoring network
J Dev Behav Pediatr
(2016) - et al.
Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey
Natl Health Stat Rep
(2015) Prevalence of autism spectrum disorders—autism and developmental disabilities monitoring network, United States, 2006
Year Bk Psychiatr Appl Ment Health
(2011)- et al.
Diagnostic stability in very young children with autism spectrum disorders
J Autism Dev Disord
(2008)
Autism from 2 to 9 years of age
Arch Gen Psychiatry
Parents’ first concerns of their child's development in toddlers with autism spectrum disorders
Dev Neurorehabil
Determinants of appointment absenteeism at an outpatient pediatric autism clinic
J Dev Behav Pediatr
Access to autism evaluation appointments with developmental-behavioral and neurodevelopmental subspecialists
Arch Pediatr Adolesc Med
Barriers to autism screening in family medicine practice: a qualitative study
J Dev Behav Pediatr
Early intensive behavioral intervention: outcomes for children with autism and their parents after two years
Am J Ment Retard
Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model
Pediatrics
Early intervention for children with autism spectrum disorder under 3 years of age: recommendations for practice and research
Pediatrics
Early infant development and intervention for autism spectrum disorder
J Child Neurol
Pediatrician workforce policy statement
Pediatrics
Identification and evaluation of children with autism spectrum disorders
Pediatrics
Diagnosis of autism spectrum disorder by developmental-behavioral pediatricians in academic centers: a DBPNet Study
Pediatrics
Autism diagnostic interview: a standardized investigator-based instrument
J Autism Dev Disord
Improving access to care at autism treatment centers: a system analysis approach
Pediatrics
Pediatric workforce: a look at pediatric nephrology data from the American Board of Pediatrics
J Pediatr
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Evaluating Autism diagnosis agreement between primary care physicians/practitioners and experts through ECHO Autism STAT
2023, Research in Autism Spectrum DisordersA Scoping Review of Diagnosis of Autism Spectrum Disorder in Primary Care
2023, Journal of Pediatric Health CareDuration of untreated autism in rural America: Emerging public health crisis
2023, CNS Spectrums
The authors have nothing to disclose.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.