title: Access to specialty care in autism spectrum disorders-a pilot study of referral source.
abstract: BACKGROUND
  In the United States, a medical home model has been shown to improve the outcomes for children with special health care needs. As part of this model, primary care physicians provide comprehensive medical care that includes identification of delayed and/or atypical development in children and coordination of care with specialists. However, it is not clear if families of children with Autism Spectrum Disorder (ASD) rely on the medical home model for care of their child to the same extent as families of children with other special health care needs. This study aims to add to the understanding of medical care for children with ASD by examining the referral source for specialty care.
  
  
  METHODS
  This retrospective study was accomplished by evaluating parent completed intake data for children with ASD compared to those with other neurological disorders in a single physician Pediatric Neurology Practice at a major urban medical center in Northern New Jersey. To account for referral bias, a similar comparison study was conducted using a multispecialty ASD practice at the same medical center. Parent reported "source of referral" and "reason for the referral" of 189 ASD children and 108 non-ASD neurological disordered children were analyzed.
  
  
  RESULTS
  The specialty evaluations of ASD were predominantly parent initiated. There were significantly less referrals received from primary care physicians for children with ASD compared to children with other neurodevelopmental disorders. Requirement of an insurance referral was not associated with a primary care physician prompted specialty visit.We identified different patterns of referral to our specialty clinics for children with ASD vs. children with other neurolodevelopmental disorders.
  
  
  CONCLUSIONS
  The majority of the families of children with ASD evaluated at our autism center did not indicate that a primary care physician initiated the specialty referral. This study suggests that families of children with ASD interface differently with the primary care provider than families of children with other neurological disorders.
authors.affiliation: Department of Neurosciences and Neurology, UMDNJ-New Jersey Medical School, Newark, NJ, USA. mingxu@umdnj.edu
authors.forename: Xue
authors.initials: X
authors.lastname: Ming
authors.forename: Anjum
authors.initials: A
authors.lastname: Hashim
authors.forename: Sharon
authors.initials: S
authors.lastname: Fleishman
authors.forename: Therese
authors.initials: T
authors.lastname: West
authors.forename: Ning
authors.initials: N
authors.lastname: Kang
authors.forename: Xiang
authors.initials: X
authors.lastname: Chen
authors.forename: Barbie
authors.initials: B
authors.lastname: Zimmerman-Bier
mesh_terms: D000293:Adolescent; D016009:Chi-Square Distribution; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis* / Q000188:drug therapy; D002675:Child, Preschool; D005260:Female; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006301:Health Services Needs and Demand; D006801:Humans; D007348:Insurance, Health / Q000706:statistics & numerical data; D008297:Male; D008511:Medicine / Q000706:statistics & numerical data*; D018802:Patient-Centered Care / Q000706:statistics & numerical data*; D010865:Pilot Projects; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D012189:Retrospective Studies; D055815:Young Adult