Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis

      Objectives

      To assess differences between child age at first parental concern and age at first parental discussion of concerns with a health care provider among children with autism spectrum disorder (ASD) vs those with intellectual disability/developmental delay (ID/DD), and to assess whether provider response to parental concerns is associated with delays in ASD diagnosis.

      Study design

      Using nationally representative data from the 2011 Survey of Pathways to Diagnosis and Treatment, we compared child age at parent's first developmental concern with age at first discussion of concerns with a provider, and categorized provider response as proactive or reassuring/passive, among 1420 children with ASD and 2098 children with ID/DD. In the children with ASD, we tested the association between provider response type and years of diagnostic delay.

      Results

      Compared with children with ID/DD, children with ASD were younger when parents first had concerns and first discussed those concerns with a provider. Compared with parents of children with ID/DD, parents of children with ASD were less likely to receive proactive responses to their concerns and more likely to receive reassuring/passive responses. Among children with ASD, those with more proactive provider responses to concerns had shorter delays in ASD diagnosis compared with those with passive/reassuring provider responses.

      Conclusion

      Although parents of children with ASD have early concerns, delays in diagnosis are common, particularly when providers' responses are reassuring or passive, highlighting the need for targeted improvements in primary care.
      AIRR ( Adjusted incidence rate ratio), ASD ( Autism spectrum disorder), CSHCN ( Children with special health care needs), DD ( Developmental delay), ID ( Intellectual disability), NS-CSHCN ( National Survey of Children with Special Health Care Needs)

      References

        • American Psychological Association
        Diagnostic and statistical manual of mental disorders.
        5th ed. American Psychiatric Publishing, Arlington (VA)2013
        • Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators, Centers for Disease Control and Prevention
        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; 63: 1-21
        • Blumberg S.J.
        • Bramlett M.D.
        • Kogan M.
        • Schieve L.A.
        • Jones J.R.
        • Lu M.C.
        Changes in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011-12.
        (National Health Statistics Report 65, March 20, 2013) (Accessed November 20, 2014)
        • Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators, Centers for Disease Control and Prevention
        Prevalence of autism spectrum disorders: Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008.
        MMWR Surveill Summ. 2012; 61: 1-19
        • Johnson C.P.
        • Myers S.M.
        • American Academy of Pediatrics Council on Children with Disabilities
        Identification and evaluation of children with autism spectrum disorders.
        Pediatrics. 2007; 120: 1183-1215
        • Committee on Children With Disabilities
        Technical report: the pediatrician's role in the diagnosis and management of autistic spectrum disorder in children.
        Pediatrics. 2001; 107: e85
        • Landa R.J.
        • Kalb L.G.
        Long-term outcomes of toddlers with autism spectrum disorders exposed to short-term intervention.
        Pediatrics. 2012; 130: S186-S190
        • Wallace K.S.
        • Rogers S.J.
        Intervening in infancy: implications for autism spectrum disorders.
        J Child Psychol Psychiatry. 2010; 51: 1300-1320
        • Rogers S.J.
        • Estes A.
        • Lord C.
        • Vismara L.
        • Winter J.
        • Fitzpatrick A.
        • et al.
        Effects of a brief Early Start Denver Model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a randomized controlled trial.
        J Am Acad Child Adolesc Psychiatry. 2012; 51: 1052-1065
        • Kogan M.D.
        • Strickland B.B.
        • Blumberg S.J.
        • Singh G.K.
        • Perrin J.M.
        • van Dyck P.C.
        A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006.
        Pediatrics. 2008; 122: e1149-e1158
        • Jacobson J.W.
        • Mulick J.A.
        System and cost research issues in treatments for people with autistic disorders.
        J Autism Dev Disord. 2000; 30: 585-593
        • Buescher A.V.
        • Cidav Z.
        • Knapp M.
        • Mandell D.S.
        Costs of autism spectrum disorders in the United Kingdom and the United States.
        JAMA Pediatr. 2014; 168: 721-728
        • Peacock G.
        • Amendah D.
        • Ouyang L.
        • Grosse S.D.
        Autism spectrum disorders and health care expenditures: the effects of co-occurring conditions.
        J Dev Behav Pediatr. 2012; 33: 2-8
        • Mandell D.S.
        • Morales K.H.
        • Xie M.
        • Lawer L.J.
        • Stahmer A.C.
        • Marcus S.C.
        Age of diagnosis among Medicaid-enrolled children with autism, 2001-2004.
        Psychiatr Serv. 2010; 61: 822-829
        • Mandell D.S.
        • Novak M.M.
        • Zubritsky C.D.
        Factors associated with age of diagnosis among children with autism spectrum disorders.
        Pediatrics. 2005; 116: 1480-1486
        • Pinto-Martin J.
        • Levy S.E.
        Early diagnosis of autism spectrum disorders.
        Curr Treat Options Neurol. 2004; 6: 391-400
        • Bethell C.
        • Reuland C.
        • Schor E.
        • Abrahms M.
        • Halfon N.
        Rates of parent-centered developmental screening: disparities and links to services access.
        Pediatrics. 2011; 128: 146-155
        • Mandell D.S.
        • Wiggins L.D.
        • Carpenter L.A.
        • Daniels J.
        • DiGuiseppi C.
        • Durkin M.S.
        • et al.
        Racial/ethnic disparities in the identification of children with autism spectrum disorders.
        Am J Public Health. 2009; 99: 493-498
        • Mandell D.S.
        • Listerud J.
        • Levy S.E.
        • Pinto-Martin J.A.
        Race differences in the age at diagnosis among Medicaid-eligible children with autism.
        J Am Acad Child Adolesc Psychiatry. 2002; 41: 1447-1453
        • Wiggins L.D.
        • Baio J.
        • Rice C.
        Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample.
        J Dev Behav Pediatr. 2006; 27: S79-S87
        • Daniels A.M.
        • Mandell D.S.
        Explaining differences in age at autism spectrum disorder diagnosis: a critical review.
        Autism. 2013; 18: 583-597
        • Zuckerman K.E.
        • Boudreau A.A.
        • Lipstein E.A.
        • Kuhlthau K.A.
        • Perrin J.M.
        Household language, parent developmental concerns, and child risk for developmental disorder.
        Acad Pediatr. 2009; 9: 97-105
        • Guerrero A.D.
        • Rodriguez M.A.
        • Flores G.
        Disparities in provider elicitation of parents' developmental concerns for US children.
        Pediatrics. 2011; 128: 901-909
        • Council on Children With Disabilities
        • Section on Developmental Behavioral Pediatrics
        • Bright Futures Steering Committee
        • Medical Home Initiatives for Children With Special Needs Project Advisory Committee
        Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening.
        Pediatrics. 2006; 118: 405-420
        • Radecki L.
        • Sand-Loud N.
        • O'Connor K.G.
        • Sharp S.
        • Olson L.M.
        Trends in the use of standardized tools for developmental screening in early childhood: 2002-2009.
        Pediatrics. 2011; 128: 14-19
        • Guerrero A.D.
        • Garro N.
        • Chang J.T.
        • Kuo A.A.
        An update on assessing development in the pediatric office: has anything changed after two policy statements?.
        Acad Pediatr. 2010; 10: 400-404
        • Daniels A.M.
        • Mandell D.S.
        Children's compliance with American Academy of Pediatrics' well-child care visit guidelines and the early detection of autism.
        J Autism Dev Disord. 2013; 43: 2844-2854
        • Zuckerman K.E.
        • Mattox K.
        • Baghaee A.
        • Batbayar O.
        • Donelan K.
        • Bethell C.
        Pediatrician identification of Latino children at risk for autism spectrum disorder.
        Pediatrics. 2013; 132: 445-453
        • Howlin P.
        • Asgharian A.
        The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families.
        Dev Med Child Neurol. 1999; 41: 834-839
        • Data Resource Center for Child & Adolescent Health
        Child and Adolescent Health Measurement Initiative. Exploring health conditions in the 2009/10 NS-CSHCN.
        (Accessed November 20, 2014)
        • Bethell C.D.
        • Read D.
        • Stein R.E.
        • Blumberg S.J.
        • Wells N.
        • Newacheck P.W.
        Identifying children with special health care needs: development and evaluation of a short screening instrument.
        Ambul Pediatr. 2002; 2: 38-48
        • National Center for Health Statistics
        Survey of pathways to diagnosis and services.
        (Accessed November 20, 2014)
        • National Center for Health Statistics
        2009-10 National Survey of Children with Special Health Care Needs.
        (Accessed November 20, 2014)
        • Autism Services, Education, Resources and Training Collaborative (ASERT)
        Pennsylvania autism needs assessment: a survey of individuals and families living with autism.
        (Accessed November 20, 2014)
        • Gadow K.D.
        • Devincent C.
        • Schneider J.
        Predictors of psychiatric symptoms in children with an autism spectrum disorder.
        J Autism Dev Disord. 2008; 38: 1710-1720
        • Montes G.
        • Halterman J.S.
        White-black disparities in family-centered care among children with autism in the United States: evidence from the NS-CSHCN 2005-2006.
        Acad Pediatr. 2011; 11: 297-304
        • King M.D.
        • Bearman P.S.
        Socioeconomic status and the increased prevalence of autism in California.
        Am Sociol Rev. 2011; 76: 320-346
        • Fountain C.
        • King M.D.
        • Bearman P.S.
        Age of diagnosis for autism: individual and community factors across 10 birth cohorts.
        J Epidemiol Community Health. 2011; 65: 503-510
        • Knapp C.
        • Woodworth L.
        • Fernandez-Baca D.
        • Baron-Lee J.
        • Thompson L.
        • Hinojosa M.
        Factors associated with a patient-centered medical home among children with behavioral health conditions.
        Matern Child Health J. 2013; 17: 1658-1664
        • Simonoff E.
        • Pickles A.
        • Charman T.
        • Chandler S.
        • Loucas T.
        • Baird G.
        Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample.
        J Am Acad Child Adolesc Psychiatry. 2008; 47: 921-929
        • National Center for Health Statistics
        Frequently asked questions: 2011 Survey of Pathways to Diagnosis and Services.
        (Accessed November 20, 2014)
        • Long J.S.
        Regression models for categorical and limited dependent variables.
        Sage, Thousand Oaks (CA)1997
        • Glascoe F.P.
        Parents' evaluation of developmental status: how well do parents' concerns identify children with behavioral and emotional problems?.
        Clin Pediatr (Phila). 2003; 42: 133-138
        • Ozonoff S.
        • Young G.S.
        • Steinfeld M.B.
        • Hill M.M.
        • Cook I.
        • Hutman T.
        • et al.
        How early do parent concerns predict later autism diagnosis?.
        J Dev Behav Pediatr. 2009; 30: 367-375
        • Glascoe F.P.
        • Macias M.M.
        • Wegner L.M.
        • Robertshaw N.S.
        Can a broadband developmental-behavioral screening test identify children likely to have autism spectrum disorder?.
        Clin Pediatr (Phila). 2007; 46: 801-805
        • Bailey D.B.
        • Raspa M.
        • Bishop E.
        • Holiday D.
        No change in the age of diagnosis for fragile X syndrome: findings from a national parent survey.
        Pediatrics. 2009; 124: 527-533
        • Garwick A.W.
        • Kohrman C.
        • Wolman C.
        • Blum R.W.
        Families' recommendations for improving services for children with chronic conditions.
        Arch Pediatr Adolesc Med. 1998; 152: 440-448
        • Homer C.J.
        • Marino B.
        • Cleary P.D.
        • Alpert H.R.
        • Smith B.
        • Crowley Ganser C.M.
        • et al.
        Quality of care at a children's hospital: the parents' perspective.
        Arch Pediatr Adolesc Med. 1999; 153: 1123-1129
        • Guyer B.
        • Hughart N.
        • Strobino D.
        • Jones A.
        • Scharfstein D.
        Assessing the impact of pediatric-based development services on infants, families, and clinicians: challenges to evaluating the Health Steps Program.
        Pediatrics. 2000; 105: e33
        • Children's Trust Fund, a division of the Department of Social Services, State of Connecticut
        Help Me Grow.
        (Accessed November 20, 2014)
        • Wegner L.M.
        • Macias M.M.
        Services for children and adolescents with autism spectrum disorders: payment issues.
        Pediatr Ann. 2009; 38: 57-61
        • Kuhlthau K.
        • Jellinek M.
        • White G.
        • Vancleave J.
        • Simons J.
        • Murphy M.
        Increases in behavioral health screening in pediatric care for Massachusetts Medicaid patients.
        Arch Pediatr Adolesc Med. 2011; 165: 660-664
        • Roux A.M.
        • Herrera P.
        • Wold C.M.
        • Dunkle M.C.
        • Glascoe F.P.
        • Shattuck P.T.
        Developmental and autism screening through 2-1-1: reaching underserved families.
        Am J Prev Med. 2012; 43: S457-S463