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Chapter 9 - The Impact of ASD Research on National Policy Lessons from the Combating Autism Act and the National Institute for Health and Care Excellence

Published online by Cambridge University Press:  18 January 2019

By
Peter Doehring
Edited by
Fred R. Volkmar
Fred R. Volkmar
Affiliation:
Yale University, Connecticut
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Autism and Pervasive Developmental Disorders , pp. 191 - 219
Publisher: Cambridge University Press
Print publication year: 2019

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References

About the National Institute for Health and Care Excellence. (September 1, 2017). Retrieved from www.nice.org.uk/about. Accessed on February 10, 2018.Google Scholar
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2000 Principal Investigators. (2007). Prevalence of autism spectrum disorders – Autism and developmental disabilities monitoring network, six sites, United States, 2000. MMWR. Surveillance Summaries, 56(1), 1–11.Google Scholar
Autism Collaboration, Accountability, Research, Education and Support Act of 2014, U.S.C., Pub. L. No. 113–157 (2014).Google Scholar
Autism Speaks. (2017). Insurance. Retrieved from www.autismspeaks.org/advocacy/insurance. Accessed on February 10, 2018.Google Scholar
Baird, G., Douglas, H. R., & Murphy, M. S. (2011). Recognising and diagnosing autism in children and young people: summary of NICE guidance. BMJ, 343, d6360.Google Scholar
Bertrand, J., Mars, A., Boyle, C., et al. (2001). Prevalence of Autism in a United States population: The brick township, New Jersey, investigation. Pediatrics, 108(5), 1155–1161.Google Scholar
Buie, T., Campbell, D. B., Fuchs, G. J., III, et al. (2010). Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report. Pediatrics, 125 Suppl 1, S1–18.Google Scholar
California Department of Developmental Services. (1999). Changes in the population of persons with autism and pervasive developmental disorders in California's developmental services system: 1987 through 1998. A report to the Legislature, March 1, 1999. Retrieved from Sacramento, CA.Google Scholar
Christensen, D. L., Baio, J., Van Naarden Braun, K., et al. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012. MMWR. Surveillance Summaries, 65(3), 1–23. doi: 10.15585/mmwr.ss6503a1Google Scholar
Combating Autism Act of 2006, U.S.C., Pub. L. No. 109–416 (2006).Google Scholar
Combating Autism Reauthorization Act of 2011, U.S.C., Pub. L. No. 112–32 (2011).Google Scholar
Crowe, B. H. A., & Salt, A. T. (2015). Autism: the management and support of children and young people on the autism spectrum (NICE Clinical Guideline 170). Archives of Disease in Childhood – Education & Practice Edition, 100(1), 20–23. doi: 10.1136/archdischild-2013-305468Google Scholar
Deer, B. (2011). How the case against the MMR vaccine was fixed. BMJ, 342. doi: 10.1136/bmj.c5347Google ScholarPubMed
Deochand, N., & Fuqua, R. W. (2016). BACB certification trends: State of the states (1999 to 2014). Behavior Analysis in Practice, 9(3), 243–252. doi: 10.1007/s40617-016-0118-zCrossRefGoogle ScholarPubMed
Doehring, P. (2013). Autism Services across America: Road Maps for Improving State and National Education, Research, and Training Programs. Baltimore, MD: Paul H. Brookes Publishing.Google Scholar
Doehring, P. (2014). Translating research into effective social policy. In Volkmar, F., Paul, R., Rogers, S., & Pelphrey, K. (Eds.), Handbook of Autism and Pervasive Developmental Disorders: Volume 2, Assessment, Interventions, and Policy (Vol. 4). Hoboken, NJ: Wiley.Google Scholar
Doehring, P. (2017). Making prevalence relevant, again. Retrieved from www.asdroadmap.org/stories/. Accessed on February 10, 2018.Google Scholar
Doehring, P., & Musheno, K. (2013). US Social Policy and Autism Spectrum Disorders. In Volkmar, F. (Ed.), Encyclopedia of Autism Spectrum Disorders. New York, NY: Springer-Verlag.Google Scholar
Doehring, P., Reichow, B., Palka, T., Phillips, C., & Hagopian, L. (2014). Behavioral approaches to managing severe problem behaviors in children with autism spectrum and related developmental disorders: a descriptive analysis. Child and Adolescent Psychiatric Clinics of North America, 23(1), 25–40. doi: 10.1016/j.chc.2013.08.001CrossRefGoogle ScholarPubMed
Doehring, P., & Rozell, D. (2014). Surveying statewide programs for services, training, and policy: Lessons for leaders. Paper presented at the Ohio Center on Autism and Low Incidence Annual Conference, Columbus, OH.Google Scholar
Doehring, P., & Volkmar, F. R. (2016). Knowledge gaps in ASD research: Short and long term implications for policy. Journal of Autism and Developmental Disorders, 46(3), 733–736. doi: 10.1007/s10803-015-2683-3Google Scholar
The fix for American health care can be found in Europe. (2017, August 10). The Economist. Retrieved from https://www.economist.com/united-states/2017/08/10/the-fix-for-american-health-care-can-be-found-in-europeGoogle Scholar
Fombonne, E., Zakarian, R., Bennett, A., Meng, L., & McLean-Heywood, D. (2006). Pervasive developmental disorders in Montreal, Quebec, Canada: Prevalence and links with immunizations. Pediatrics, 118(1), e139–e150.Google Scholar
Gresham, F. M., & MacMillan, D. L. (1998). Early intervention project: can its claims be substantiated and its effects replicated? Journal of Autism and Developmental Disorders, 28(1), 5–13.CrossRefGoogle ScholarPubMed
Healthwatch. (2017). Retrieved from www.healthwatch.co.uk/. Accessed on February 10, 2018.Google Scholar
Honda, H., Shimizu, Y., & Rutter, M. (2005). No effect of MMR withdrawal on the incidence of autism: A total population study. Journal of Child Psychology and Psychiatry and Allied Disciplines, 46(6), 572–579.Google Scholar
Hyman, S. L., & Levy, S. E. (2011). Dietary, complementary and alternative therapies. In Reichow, B., Doehring, P., Cicchetti, D. V., & Volkmar, F. R. (Eds.), Evidence-based practices and treatments for children with autism (pp. 275–293). New York, NY, US: Springer Science + Business Media. (Reprinted from: IN FILE).CrossRefGoogle Scholar
Insurance Coverage for Autism, Pub. L. No. HB 1122 (July 1, 2001).Google Scholar
Johnson, C. P., Myers, S. M., & the Council on Children with Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.Google Scholar
Keelan, J., & Wilson, K. (2011). Balancing Vaccine Science and National Policy Objectives: Lessons From the National Vaccine Injury Compensation Program Omnibus Autism Proceedings. American Journal of Public Health, 101(11), 2016–2021. doi: 10.2105/AJPH.2011.300198Google Scholar
Lovaas, I. O. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9.Google Scholar
Mandell, D. S., Barry, C. L., Marcus, S. C., et al. (2016). Effects of autism spectrum disorder insurance mandates on the treated prevalence of autism spectrum disorder. JAMA Pediatrics, 170(9), 887–893. doi: 10.1001/jamapediatrics.2016.1049Google Scholar
Maurice, C., Green, G., & Foxx, R. M. (2001). Making a Difference: Behavioral Intervention for Autism. Austin, TX: Pro-Ed.Google Scholar
Mayerson, G. S. (2014). Autism in the courtroom. In Volkmar, F. R., Rogers, S. J., Paul, R., et al. (Eds.), Handbook of autism and pervasive developmental disorders: Assessment, interventions, and policy. (pp. 1036–1050). Hoboken, NJ: John Wiley & Sons Inc.Google Scholar
Myers, S. M., Johnson, C. P., & the Council on Children with Disabilities. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162–1182.Google Scholar
National Autism Center. (2015). Findings and conclusions: National Standards Project, Phase 2. Retrieved from Randolph, MA: Author.Google Scholar
National Initiative for Autism: Screening and Assessment (Ed.) (2003). National autism plan for children (NAPC): Plan for the identification, assessment, diagnosis and access to early interventions for pre-school and primary school aged children with autism spectrum disorders (ASD). London, UK: The National Autistic Society.Google Scholar
National Institute for Health and Care Excellence. (2011). Autism spectrum disorder in under 19s: recognition, referral and diagnosis (Clinical Guideline128). http://guidance.nice.org.uk/CG128. Accessed on February 10, 2018.Google Scholar
National Institute for Health and Care Excellence. (2012). Autism spectrum disorder in adults: diagnosis and management (Clinical Guideline142). www.nice.org.uk/guidance/cg142. Accessed on February 10, 2018.Google Scholar
National Institute for Health and Care Excellence. (2013). Autism spectrum disorder in under 19s: support and management (CG170). Retrieved from www.nice.org.uk/guidance/. Accessed on February 10, 2018.Google Scholar
National Institute for Health and Care Excellence. (2014a). Autism Quality Standard (QS51). Retrieved from www.nice.org.uk/guidance/cg170. Accessed on February 10, 2018.Google Scholar
National Institute for Health and Care Excellence. (2014b). Developing NICE guidelines: The manual (PMG20). Retrieved from www.nice.org.uk/process/. Accessed on February 10, 2018.Google Scholar
National Institute for Health and Care Excellence. (2016). Surveillance report 2016 – Autism spectrum disorder in under 19s: recognition, referral and diagnosis (2011) NICE guideline CG128 and Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170. Retrieved from www.nice.org.uk/guidance/. Accessed on February 10, 2018.Google Scholar
National Institute for Health Research. (2017). The James Lind Alliance. Retrieved from www.jla.nihr.ac.uk/. Accessed on February 10, 2018.Google Scholar
National Professional Development Center on Autism Spectrum, D. (2011). Evidence-based practice briefs. Retrieved from http://autismpdc.fpg.unc.edu/evidence-based-practices. Accessed on February 10, 2018.Google Scholar
NICE Evidence Search: Autism. (September 1, 2017). Retrieved from www.evidence.nhs.uk/Search?q=autism. Accessed on February 10, 2018.Google Scholar
NICE Pathways: Autism spectrum disorder overview. (September 1, 2017). Retrieved from https://pathways.nice.org.uk/pathways/autism-spectrum-disorder. Accessed on February 10, 2018.Google Scholar
Office of Autism Research Coordination. (2017). 2013 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. Retrieved from https://iacc.hhs.gov/portfolio-analysis/. Accessed on February 10, 2018.Google Scholar
Palmer, E., Ketteridge, C., Parr, J. R., Baird, G., & Le Couteur, A. (2011). Autism spectrum disorder diagnostic assessments: improvements since publication of the National Autism Plan for Children. Archives of Disease in Childhood, 96(5), 473–475. doi: 10.1136/adc.2009.172825Google Scholar
Parish, S., Thomas, K., Rose, R., Kilany, M., & McConville, R. (2012). State insurance parity legislation for autism services and family financial burden. Intellectual and Developmental Disabilities, 50(3), 190–198. doi: 10.1352/1934-9556-50.3.190Google Scholar
Parliamentary and Health Service Ombudsman. (2017). Retrieved from www.ombudsman.org.uk/Google Scholar
Peacock, G., Lin, S. C., Bogin, J., Rhodes, C., & Wolf, R. (2013). Learn the signs. Act early: the public health approach to the early identification of children at risk for autism spectrum disorders and other developmental disabilities. In Doehring, P. (Ed.), Autism Services Across America: Road Maps for Improving State and National Education, Research, and Training Programs. Baltimore, MD: Paul H. Brookes Publishing.Google Scholar
Pellicano, E., Dinsmore, A., & Charman, T. (2013). A future made together: Shaping autism research in the UK. London, UK: Institute of Education.Google Scholar
Perrin, J. M., Coury, D. L., Klatka, K., et al. (2016). The Autism Intervention Research Network on Physical Health and the Autism Speaks Autism Treatment Network. Pediatrics, 137(Supplement 2), S67–S71. doi: 10.1542/peds.2015-2851DGoogle Scholar
Pilling, S., Baron-Cohen, S., Megnin-Viggars, O., Lee, R., & Taylor, C. (2012). Recognition, referral, diagnosis, and management of adults with autism: Summary of NICE guidance. BMJ, 344, e4082. doi: 10.1136/bmj.e4082Google Scholar
Posey, B. (2014). Fix the Combating Autism Act. Retrieved from http://thehill.com/blogs/congress-blog/healthcare/209310-fix-the-combating-autism-act. Accessed on February 10, 2018.Google Scholar
Reichow, B., Doehring, P., Cicchetti, D. V., & Volkmar, F. R. (2011). Evidence-based practices and treatments for children with autism. (p. 408) New York, NY: Springer.CrossRefGoogle Scholar
Roux, A. M., Herrera, P., Wold, C. M., et al. (2012). Developmental and autism screening through 2-1-1: Reaching underserved families. American Journal of Preventive Medicine, 43(6, Suppl 5), S457–S463.Google Scholar
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National Autism Indicators Report: Transition into Young Adulthood Retrieved from Philadelphia, PA: http://drexel.edu/autisminstitute/research-projects/research/ResearchPrograminLifeCourseOutcomes/IndicatorsReport/. Accessed on February 10, 2018.Google Scholar
Shattuck, P. T. (2006). The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education. Pediatrics, 117(4), 1028–1037.Google Scholar
Stratton, K., Gable, A., Shetty, P., & McCormick, M. (2001). Immunization Safety Review: Measles – Mumps – Rubella Vaccine and Autism. Washington, DC: National Academy Press.Google Scholar
US Government Accountability Office. (2009). Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers. Retrieved from Washington, DC: www.gao.gov/products/. Accessed on February 10, 2018.Google Scholar
US Government Accountability Office. (2013). Federal Autism Activities: Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication (GAO 14–16). Retrieved from www.gao.gov/products/. Accessed on February 10, 2018.Google Scholar
US House of Representatives, Committee on Oversight and Government Reform, Subcommittee on Government Operations (Producer). (2014). Examining the federal response to autism spectrum disorders. Retrieved from https://oversight.house.gov/. Accessed on February 10, 2018.Google Scholar
Wong, C., Odom, S. L., Hume, K. A., et al. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1951–1966. doi: 10.1007/s10803-014-2351-zGoogle Scholar
Zwaigenbaum, L., Bauman, M. L., Fein, D., et al. (2015). Early screening of autism spectrum disorder: Recommendations for practice and research. Pediatrics, 136(Supplement 1), S41–S59. doi: 10.1542/peds.2014-3667DGoogle Scholar
Zwicker, J. D. & Emery, J. C. H. (2014). Autism research funding allocation: Can economics tell us if we have got it right? Autism Research, 7(6), 704–711. doi: 10.1002/aur.1423Google Scholar

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