Autism Spectrum Disorders Bibliography

Annotation: This flyer for parents and health professionals provides oral health information specific to children with autism. Topics include facts about oral health in children and tips for preventing dental caries in early childhood. The flyer addresses checking teeth for spots, introducing new textures, visiting the dentist, and oral sensitivities and toothbrushing. Information on finding a dentist, scheduling an in-home dental visit, and parent-to-parent support are included. The flyer is available in English and in Spanish.

Contact: Children's Hospital and Health Center, Anderson Center for Dental Care, 3020 Children's Way, San Diego, CA 92123, Telephone: (858) 576-1700 Secondary Telephone: (800) 788-9029 E-mail: [email protected] Web Site: https://www.rchsd.org/ Available from the website.

• English
• Spanish

Keywords: Spanish language materials, Autism, Children with special health care needs, Dental care, Dental hygiene, Oral health

Annotation: This flyer for parents and health professionals provides oral health information specific to children with autism. Topics include facts about oral health in children and tips for preventing dental caries in early childhood. The flyer addresses checking teeth for spots, introducing new textures, visiting the dentist, and oral sensitivities and toothbrushing. Information on finding a dentist, scheduling an in-home dental visit, and parent-to-parent support are included. The flyer is available in English and in Spanish.

Contact: Children's Hospital and Health Center, Anderson Center for Dental Care, 3020 Children's Way, San Diego, CA 92123, Telephone: (858) 576-1700 Secondary Telephone: (800) 788-9029 E-mail: [email protected] Web Site: https://www.rchsd.org/ Available from the website.

• English
• Spanish

Keywords: Spanish language materials, Autism, Children with special health care needs, Consumer education materials, Dental care, Dental hygiene, Oral health

Annotation: This report provides initial findings of a search of state and other documents related to developmental screening activities and of the Title V Information System online database to identify states with priority needs and performance measures related to developmental screening and early identification, with a focus on children with autism spectrum disorders and developmental disabilities. It describes the Autism Cares Act and strategies to increase developmental screening and improve systems. It discusses issues of data collection, measurement, and infrastructure; coordinating systems and services; and challenges and barriers. State highlights are provided. An accompanying fact sheet lists state performance measures and objectives related to developmental screening and early identification.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

• Report

Keywords: Autism spectrum disorders, Child development disorders, Developmental screening, State programs

Annotation: This website comprises information and resources from the Autism Transition Project (2012-2014), a two-year project to study how students with an autism spectrum disorder are being prepared to move from the public schools into employment or additional education in the community. Resources include a national and state scan; literature and resources; and the agenda and presentations from the Symposium on Autism Spectrum Disorders & Transition (June 16, 2014) and the Conference Autism Spectrum Disorders & Transitions from High School: Challenges & Opportunities (December 5, 2014).

Contact: Center for Health and Health Care in Schools, George Washington University Milken Institute School of Public Health, 2175 K Street, N.W., Suite 200, Room 213, Washington, DC 20037, Telephone: (202) 994-4895 E-mail: [email protected] Web Site: http://www.healthinschools.org Available from the website.

• Link

Keywords: Autism, Conference proceedings, Literature reviews, Students, Transition planning, Transition to independent living, Young adults

Annotation: This statement updates the November 2013 report published by the U.S. Government Accountabilty Office on federal autism activities. Topics include the extent to which federal agencies fund potentially duplicative autism research and the extent to which the Interagency Autism Coordinating Committee and agencies coordinate and monitor federal autism activities. The report presents an analysis of agencies' data and documents, and interviews with federal agency officials. Recommendations are included.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 E-mail: [email protected] Web Site: http://www.gao.gov Available from the website. Document Number: GAO-14-613T.

• PDF

Keywords: Autism, Federal agencies, Federal initiatives, Federal programs, Government financing, MCH research, Policy analysis, Program coordination

Annotation: This guide for parents and other caregivers describes research about the possible benefits and negative side effects of therapies for children ages 2 through 12 who have an autism spectrum disorder (ASD). The guide explains what ASDs are and summarizes the research on programs that treat ASD symptoms. Topics include behavior and development programs, education and learning programs, medications, and other treatments and therapies. Guidelines to help parents and caregivers choose the best therapy and programs for their child are included.

Contact: U.S. Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website. Document Number: AHRQ Pub. No. 14-EHC036-A.

• English
• Spanish

Keywords: Autism, Child health, Children with special health care needs, Families, Research reviews

Annotation: This resource outlines a plan for improving access to comprehensive, coordinated health care and related services for children, youth, and adults with autism spectrum disorder and related developmental disabilities in Georgia. The plan addresses the following ten areas of activity: early identification and screening; referral and diagnosis; medical, behavioral health, and dental services; family support; early intervention and preschool services; elementary and secondary education; community services and supports; transition from youth to adult systems; adult services and supports; and emergency preparedness and first responders. For each area, the report provides a definition, quality indicators (problem statements and data drivers), and recommendations (objectives). The report also describes foundational supports considered in developing the recommendations including work force, awareness, informational resources, finances, and policy. [Funded by the Maternal and Child Health Bureau]

Contact: Georgia State University School of Public Health, Center for Leadership in Disability, 75 Piedmont Avenue, Suite 514, Atlanta, GA 30303, Telephone: (404) 413-1281 Fax: (404) 413-1012 E-mail: [email protected] Web Site: https://disability.publichealth.gsu.edu/ Available from the website.

• Link
• Link

Keywords: Access to health care, Autism, Community based services, Comprehensive health care, Diagnosis, Disaster planning, Early intervention, Educational objectives, Family centered care, Family support services, Financial planning, Georgia, Health care delivery, Life course, Policy development, Program coordination, Referrals, Screening, Special health care needs, State programs, Systems development, Transition planning, Work force

Annotation: This annual report lists scientific advances that represent significant progress in the field of autism spectrum disorder (ASD) research. Contents include short, plain language synopses of the top research breakthroughs selected by the Interagency Autism Coordinating Committee (IACC) from a pool of peer-reviewed articles nominated by members. The articles are grouped according to the questions of the IACC Strategic Plan for ASD Research. Citations of the articles selected, as well as a complete listing of those nominated, are included at the end of the document. Topics include the causes of autism and potential risk factors, clues that could lead to earlier diagnosis, and promising early intervention strategies. The advances also address the prevalence of ASD both in the United States and internationally, as well as the service needs of people with ASD across the lifespan.

Contact: Interagency Autism Coordinating Committee, National Institute of Mental Health, Office of Autism Research Coordination, 6001 Executive Boulevard, Room 6182A, Bethesda, MD 20892, E-mail: [email protected] Web Site: http://iacc.hhs.gov Available from the website.

• Link

Keywords: Autism, Early intervention, Federal initiatives, Interagency cooperation, Life course, Prevalence, Program coordination, Research, Risk factors

Annotation: This brief is designed to help families find care, services, and support and websites about autism spectrum disorders. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Telephone: (202) 784-9770 E-mail: [email protected] Web Site: https://www.ncemch.org Available from the website.

• Link

Keywords: Children with special health care needs, Autism spectrum disorders, Bibliographies, Electronic publications, Families

Annotation: This brief is designed to help school personnel find resources and services for working with students with autism spectrum disorders. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Telephone: (202) 784-9770 E-mail: [email protected] Web Site: https://www.ncemch.org Available from the website.

• Link

Keywords: Children with special health care needs, Autism spectrum disorders, Bibliographies, Electronic publications, Families

Annotation: This annual report, required by public law, describes progress and expenditures made in autism spectrum disorder (ASD)-related research and services activities across the U.S. Department of Health and Human Services, the U.S. Department of Education, the U.S. Department of Defense, the U.S. Environmental Protection Agency and the National Science Foundation. Topics include progress and expenditures; prevalence of ASD; average age of diagnosis; average age for intervention; average time between screening, diagnosis, and intervention; effectiveness and outcomes of interventions; and adult services and supports. The appendices contain a list of acronyms, a summary of the previous report, and related publications.

Contact: U.S. Department of Health and Human Services, Interagency Autism Coordinating Committee, 200 Independence Avenue, SW, Washington, DC 20201, E-mail: [email protected] Web Site: http://iacc.hhs.gov/ Available from the website. Document Number: DHHS 14-8012.

• PDF
• Previous Reports

Keywords: Autism, Costs, Early intervention, Family support services, Federal legislation, Interagency cooperation, Prevalence, Research, Screening, Treatment outcome

Annotation: This report summarizes findings from a systematic review of research focusing on children who are at risk of being diagnosed with an autism spectrum disorder (ASD) or who have already been diagnosed with ASD. The report provides background information on ASD (including statistics on prevalence in the United States and goals for treatment) and information on comparative efforts aimed at medical, behavioral, educational, and allied health interventions. Intended for clinicians, the report includes a summary of the evidence on the effectiveness or harm of various treatments, including drug therapies (rating them on a confidence scale ranging from insufficient to low, moderate, and high). The report also describes the gaps in knowledge; discusses future research needs; and suggests topics to discuss with patients. The companion web site provides links to related products including consumer information and continuing education activities.

Contact: U.S. Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website. Document Number: AHRQ Pub No. 14-EHC036-3.

• PDF

Keywords: Autism, Children with special health care needs, Literature reviews, Resources for professionals, Treatment effectiveness evaluation

Annotation: This systematic review updates a prior systematic review of interventions for children (0–12 years) with autism spectrum disorder (ASD), focusing on recent studies of behavioral interventions. It gives background information, discusses how the review was conducted, presents results of the literature searches, and discusses key findings and strength of evidence. An executive summary and summaries for clinicians and consumers are available from the website.

Contact: U.S. Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website.

• PDF
• Link

Keywords: Autism, Behavior, Children with special health care needs, Literature reviews, Therapeutics

Annotation: This document is an authoritative resource that defines and classifies mental disorders in order to improve diagnoses, treatment, and research.

Contact: American Psychiatric Publishing, 1000 Wilson Boulevard, Suite 1825, Arlington, VA 22209, Telephone: 703-907-7322 Secondary Telephone: 800-368-5777 Fax: 703-907-1091 E-mail: [email protected] Web Site: http://www.appi.org $117.70, plus shipping and handling. Document Number: ISBN 0-89042-0254.

• Link

Keywords: Autism, Children, Clinical psychology, Mental health, Psychiatry

Annotation: This guide provides information to help community youth organizations develop programs to ensure that youth with autism are offered the same formative opportunities that are made available to their typical peers. The guide is designed to prepare community organizations to serve youth and families with autism and to learn how to integrate youth with autism into existing youth programs. Included are results from a national survey of community youth organizations conduced by Youth Speaks in 2012; an overview of autism and the challenges it presents to community organizations; and strategies for communicating with families and training staff who work with this population.

Contact: Autism Speaks, 1 East 33rd Street, Fourth Floor, New York, NY 10016, Telephone: (212) 252-8584 Fax: (212) 252-8676 E-mail: [email protected] Web Site: http://www.autismspeaks.org Available from the website.

• PDF

Keywords: Autism, Community programs, Developmental disabilities, Manuals, Program development, Youth

Annotation: This nine-minute tutorial consists of six video clips comparing toddlers who show no signs of autism spectrum disorders (ASD) to toddlers who show early signs of ASD. Each video is presented with a voice-over explaining how the specific behaviors exhibited by the child, as they occur on screen, are either suggestive of ASD or typical child development. Although developed as a resource for Maryland’s pediatricians, the tutorial is also available to parents and other professionals. [Funded by the Maternal and Child Health Bureau]

Contact: Kennedy Krieger Institute, 707 North Broadway, Baltimore, MD 21205, Telephone: (443) 923-9200 Secondary Telephone: (443) 923-2645 Fax: (410) 550-9344 E-mail: [email protected] Web Site: http://www.kennedykrieger.org Available from the website.

• Link

Keywords: Audiovisual materials, Autism, Children with special health care needs, Developmental screening, Parent education, Resources for professionals, Toddlers, Videorecordings, Young children

Annotation: This report summarizes key findings on children with special health care needs and autism spectrum disorders (ASD) from the 2007 National Survey of Children’s Health (NSCH). and the 2009/10 National Survey of Children with Special Health Care Needs (CSHCN). It explains what autism spectrum disorders are; discusses the impact of health system performance on families who have children with ASD; and assesses to what extent children with ASD are receiving the minimum quality of care based on measures derived from the national surveys. The report also discusses the extent to which home, school, and neighborhood environments influence CSHCN with ASD. [Funded by the Maternal and Child Health Bureau]

Contact: Child and Adolescent Health Measurement Initiative, The Johns Hopkins Bloomberg School of Public Health, Department of Population, Family, and Reproductive Health, 615 North Wolfe Street, Baltimore, MD 21205, E-mail: [email protected] Web Site: http://www.cahmi.org Available from the website.

• 2013
• 2012

Keywords: Autism, Children with special health care needs, Developmental disabilities, National surveys, Reports

Annotation: This report describes how U.S. Department of Health and Services (HHS) agencies responded Combating Autism Act of 2006 (CAA) by establishing some new autism activities and continuing others. Included are descriptions of activities carried out in response to the CAA by the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration (HRSA), and the Office of Autism Coordinating Committee (OACC). The appendices list funding amounts (in millions of dollars) provided for autism activities within each of the HHS agencies and also provides funding amounts awarded to individual grantees (organized by type of program) for the period 2008-2011. A description of autism and the challenges in diagnosing this developmental disability are included in the background information.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 E-mail: [email protected] Web Site: http://www.gao.gov Available from the website.

• Full Report
• Highlights

Keywords: Accountability, Autism, Federal agencies, Federal legislation, Regulation, Reports

Annotation: This report examines federal efforts to support autism research and autism-related activities, analyzing the extent to which federal agencies fund potentially duplicative autism research and the extent to which the Interagency Autism Coordinating Committee (IACC) and government agencies coordinate and monitor federal autism activities. The report includes background information on autism and a detailed summary of the General Accountability Office's (GAO's) findings based on an analysis of agencies’ data and documents together with interviews of federal officials and nonfederal IACC members. Included in the report are recommendations that some federal government agencies improve their coordination and monitoring of autism research and activity. Comments from federal agencies that cooperated during the GAO evaluation are included in the appendices.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 E-mail: [email protected] Web Site: http://www.gao.gov Available from the website. Document Number: GAO-14-16.

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Keywords: Accountability, Autism, Evaluation, Federal agencies, Federal initiatives, Reports

Annotation: This series of booklets is designed to provide oral health professionals with information about oral health care for people with special health care needs (SHCN). Strategies for care, covering topics such as mobility, neuromuscular problems, behavior problems, and sensory impairment, are discussed in the context of the dental office. Individual booklets on oral health and autism, cerebral palsy, Down syndrome, and intellectual disability offer practical guidance on adapting standard practice to accommodate those with SHCN. A guide for caregivers and one on safe wheelchair transfer are included.

Contact: National Institute of Dental and Craniofacial Research, National Institutes of Health, 900 Rockvilled Pike, Bethesda, MD 20892, Telephone: (866) 232-4528 E-mail: [email protected] Web Site: https://www.nidcr.nih.gov Available from the website.

• Link
• PDF

Keywords: Adolescents with special health care needs, Adults, Autism, Children with special health care needs, Continuing education, Dental care, Developmental disabilities, Health care delivery, Oral health

Annotation: This fact sheet provided health professionals with basic information about the prevalence of It provides the surveillance and screening algorithm.

Contact: American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, Telephone: 800/433-9016 Secondary Telephone: 202/347-8600 E-mail: https://www.aap.org/en/pages/contact-us/contact-national-headquarters/ Web Site: https://www.aap.org Available from the website.

• PDF

Keywords: Autism, Children with special health care needs, Developmental screening, Diagnosis, Monitoring, Referrals, Screening, Treatment

Annotation: This webcast highlights the roles for state Title V programs in building systems of care for children and youth with Autism Spectrum Disorder and Other Developmental Disabilities (ASD/DD). It outlines a range of roles for Title V as a leader, partner and facilitator; provides opportunities for peer-to-peer technical assistance; highlights ongoing challenges in data and financing and opportunities for collaborative approaches; and provides state resources and examples of leadership, outreach, and family participation to share with policy makers. The presenters provided examples from state programs to demonstrate the depth of involvement from state Title V programs and their partners. The purpose of the webcast was to help states (primarily Title V programs) determine appropriate roles and approaches to building systems of care for children and youth with ASD/DD. The full webcast recording and presenters' powerpoint slides can be downloaded from the website.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

• Full Webcast Recording
• Audio Recording

Keywords: Autism, Children, Developmental disabilities, Multimedia, State programs, Title V programs, Youth

Annotation: This report describes selected provisions of the Affordable Care Act (ACA) that have implications for children and adolescents with autism spectrum disorders or other developmental disabilities(ASD/DD). The report also describes how state Title V maternal and child health (MCH) programs can maximize opportunities under the ACA to develop and strengthen systems of care for children and adolescents with ASD/DD. The report provides background on gaps in coverage faced by children and adolescents with ASD/DD and discusses affordability and adequacy of health care coverage for this population, key provisions of the ACA, health care coverage and benefits, and implications for state Title V MCH and children and youth with special health care needs program leaders. [Funded by the Maternal and Child Health Bureau]

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

• Link

Keywords: , Adolescents with developmental disabilities, Adolescents with special health care needs, Autism, Children with developmental disabilities, Children with special health care needs, Costs, Health care systems, Health insurance, Legislation, MCH programs, Title V programs

Annotation: This report addresses the rise in the number of children diagnosed with autism and autism spectrum disorders (ASDs), how children are identified and served in local communities, and the need for accelerated research. Contents include defining ASDs, how many people have ASDs, what is the Autism and Developmental Disabilities Monitoring (ADDM) network, results of monitoring and the prevalence of ASDs in national and state-by-state demographics, and how the data can be used. Additional information is provided on related topics and resources.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov/ncbddd Available from the website.

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Keywords: Surveillance, Autism, Children with special health care needs, Developmental disabilities, Monitoring, National surveys, State surveys

Annotation: This toolkit is designed to assist families of children with autism and members of the school community in understanding and supporting students with autism. It offers an introduction to physical, medical, and other challenges for children with autism or Asperger's Syndrome; information for the many types of school service personnel; educating students with autism; and supporting learning in the student with autism. Resources and appendices include web, print, and video resources.

Contact: Autism Speaks, 1 East 33rd Street, Fourth Floor, New York, NY 10016, Telephone: (212) 252-8584 Fax: (212) 252-8676 E-mail: [email protected] Web Site: http://www.autismspeaks.org Available from the website.

• PDF

Keywords: Autism, Children with special health care needs, Community role, Family support services, Resources for professionals, School health, School personnel, Special education, Students

Annotation: In this video, parents and health professionals share their stories of success in working with the National Initiative for Children's Healthcare Quality's Autism Collaborative project and using quality-improvement techniques to improve the care of children with autism. The video also provides information about autism and about the program. [Funded by the Maternal and Child Health Bureau]

Contact: National Institute for Children's Health Quality, 30 Winter Street, Sixth Floor, Boston, MA 02108, Telephone: (617) 391-2700 Secondary Telephone: (866) 787-0832 Fax: (617) 391-2701 E-mail: [email protected] Web Site: http://www.nichq.org Available from the website.

• Link
• Link

Keywords: Audiovisual materials, Access to health care, Autism, Autistic children, Collaboration, Families, Family support programs, Family support services, Health care services, Parents, Programs, Service coordination, Videos

Annotation: This fact sheet provides information about autism and communication. The fact sheet answers the following questions: (1) what is autism spectrum disorder (ASD)?, (2) who is affected by ASD?, (3) how does ASD affect communication?, (4) how are the speech and language problems of ASD treated?, (6) what research is being conducted to improve the communication in children with ASD?, and (7) where can I get more information?

Contact: National Institute on Deafness and Other Communication Disorders Information Clearinghouse, One Communication Avenue, Bethesda, MD 20892-3456, Telephone: (800) 241-1044 Secondary Telephone: (800) 241-1055 Fax: (301) 770-8977 E-mail: [email protected] Web Site: http://www.nidcd.nih.gov/Pages/default.aspx Available from the website. Document Number: NIH Pub. No. 12-4315.

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Keywords: Autism spectrum disorders, Communication, Communication disorders, Developmental disabilities, Language disorders, Research, Speech disorders, Treatment

Annotation: This data brief provides information on diagnosis and treatment of school-age children and adolescents (ages 6-16) with special health care needs (CSHCN) and autism spectrum disorders (ASD). Topic include age of diagnosis, types of health professionals that identify CSHCN as having ASD, and health services and medications used by CSHCN with ASD.

Contact: National Center for Health Statistics, Centers for Disease Control and Prevention, 3311 Toledo Road, Room 5419, Hyattsville, MD 20782, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 Fax: (301) 458-4020 E-mail: [email protected] Web Site: http://www.cdc.gov/nchs Available from the website.

• PDF

Keywords: Prescription drugs, Adolescents with special health care needs, Autism, Children with special health care needs, Diagnosis, Health services, Statistical data, Treatments

Annotation: This report reviews the epidemiological, clinical, and biological evidence related to adverse health events associated with specific vaccines covered by the National Vaccine Injury Compensation Program, including the varicella zoster vaccine, influenza vaccines, the hepatits B vaccine, and the human papillomavirus vaccine, among others. For each possible adverse event, the report reviews peer-reviewed primary studies, summarizes their findings, and evaluates the epidemiological, clinical, and biological evidence. Findings on the safety of vaccines are presented.

Contact: National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001, Telephone: (202) 334-3313 Secondary Telephone: (888) 624-8373 Fax: (202) 334-2451 E-mail: [email protected] Web Site: http://www.nap.edu Available from the website. Document Number: ISBN 978-0-309-21435-3.

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Keywords: Autism, Chicken pox, Human papillomavirus, Influenza, Hepatitis B, Research, Safety, Vaccines

Annotation: This report examines the effects of available interventions for adolescents and young adults with autism spectrum disorders (ASD), focusing on the following outcomes: core symptoms of ASD (impairments in social interaction, communication, and repetitive behavior); medical and mental health comorbidities; functional behaviors and independence; the transition to adulthood; and family outcomes. The report discusses the various interventions discussed in the literature (behavioral, social skills, educational, comprehensive intensive behavioral, vocational, adaptive/life skills, medical, and allied health); discusses the method used to systematically review the evidence; and summarizes the study findings. It examines the strength of the evidence for effective therapies; examines the applicability of the evidence; and discusses gaps in the evidence and areas for future research.

Contact: U.S. Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website. Document Number: AHRQ Pub. No. 12-EHC063-EF.

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Keywords: Adolescents, Autism, Interventions, Literature reviews, Reports, Research, Young adults

Annotation: This paper examines the relationship between early childhood television watching and two health outcomes – autism and mental retardation. Using cross-sectional data from 1972 until 1992 on county-level autism and mental retardation rates, combined with county-level children's cable-television subscription rates, the authors' aimed tp eliminate questions concerning reverse causation while investigating the effects of early childhood television viewing on the prevalence of mental retardation and autism. Tables compare children's television viewing by race, family structure, income, and other variables, while figures compare rates of autism and mental retardation according to race, county demographics, and cable subscription rates.

Contact: National Bureau of Economic Research, 1050 Massachusetts Avenue, Cambridge, MA 02138-5398, Telephone: (617) 868-3900 Fax: (617) 868-2742 E-mail: [email protected] Web Site: http://www.nber.org Available from the website after free registration.

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Keywords: Autism, Data analysis, Early childhood development, Mental retardation, Studies, Television

Annotation: This guide for parents of children with autism provides tools for teaching oral health routines and preparing for dental visits. Topics include toothbrushing and flossing, behavior modification, sensory modification, finding a dental team, and visiting the dentist.

Contact: Dr. Samuel D. Harris National Museum of Dentistry, University of Maryland School of Dentistry, 650 West Baltimore Street, Baltimore, MD 21201-1504, Telephone: (410) 706-7146 Fax: (410) 706-3214 E-mail: [email protected] Web Site: https://www.dental.umaryland.edu/museum/index.php Available from the website.

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Keywords: Anticipatory guidance, Autism, Children, Dental care, Dental hygiene, Family centered care, Oral health

Annotation: This issue brief examines the approaches that state Title V programs are taking to address the growing incidence of autism spectrum disorder and other developmental disabilities (ASD/DD) and catalogues ASD/DD activities that fit within the framework of the Maternal and Child Health Bureau (MCHB) critical indicators for children and youth with special health care needs. These indictors include the medical home, insurance and financing, early and continuous screening, easy-to-use services, family-professional partnerships, and transition to adulthood. The Information presented in the brief was obtained from the 2010 Maternal and Child Health Block Grant State Narratives contained in the Title V Information System (TVIS) online database. [Funded by the Maternal and Child Health Bureau]

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

• Link

Keywords: Autism, Data analysis, Developmental disabilities, Measures, State programs, Title V programs

Annotation: This document presents a policy framework to help states (primarily Title V programs) determine appropriate roles and approaches to pursue in building systems of care for children and youth with autism spectrum disorders and other developmental disabilities (ASD/DD). The framework provides examples from state programs to demonstrate the breadth and depth of involvement from state Title V programs and their partners. It focuses on how state approaches to Title V programs can lead to comprehensive efforts to meet the needs of children and youth with ASD/DD and their families and how such approaches might improve systems of care for all children and youth with special health care needs (CYSHCN.) [Funded by the Maternal and Child Health Bureau]

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

• Full Report
• Executive Summary

Keywords: Autism, Children with special health needs, Developmental disabilities, Developmental disabilities programs, State programs, Systems development, Title V programs, Youth

Annotation: This tool kit provides oral health professionals with information about autism spectrum disorder (ASD) to help them meet the oral health needs of children with ASD. Contents include suggestions to prepare a dental office for a visit, a sample intake questionnaire, and frequently asked questions. A companion document, Dental Guide, is also available. The tool kit is meant to be used together with the guide. [Funded by the Maternal and Child Health Bureau]

Contact: Autism Speaks, 1 East 33rd Street, Fourth Floor, New York, NY 10016, Telephone: (212) 252-8584 Fax: (212) 252-8676 E-mail: [email protected] Web Site: http://www.autismspeaks.org Available from the website.

• PDF

Keywords: Autism, Children, Dental care, Questionnaires, Resources for professionals, Special health care needs

Contact: Mathematica , P.O. Box 2393, Princeton, NJ 08543-2393, Telephone: (609) 799-3535 Fax: (609) 799-0005 E-mail: [email protected] Web Site: http://www.mathematica-mpr.com

• Link

Keywords: Autism, Evaluation, Federal initiatives, Health services delivery, Interventions, Program improvement

Annotation: This fact sheet provides information about research programs conducted by the National Institute of Environmental Health Sciences to address children's health issues. Programs summarized are divided into the following categories: disease prevention; studies on the growing brain, studies on air pollution and respiratory disease, studies on reproduction, and studies on breast cancer.

Contact: National Institute of Environmental Health Sciences, P.O. Box 12233, MD K3-16, Research Triangle Park, NC 27709-2233, Telephone: (919) 541-3345 Fax: (919) 541-4395 E-mail: webcenter@niehs Web Site: http://www.niehs.nih.gov/ Available from the website.

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Keywords: Air pollution, Asthma, Autism, Breast cancer, Child health, Cognitive development, Environmental influences, Mental health, Prevention, Programs, Reproductive health, Research

Annotation: This curriculum is designed to educate health professionals on fundamental components of identifying, diagnosing, and managing autism spectrum disorders (ASDs) through real life scenarios. The in-class curriculum comprises 7 learning modules with case descriptions, videos, facilitator guides, and presentations. Topics include early warning signs of autism, screening for autism, communicating abnormal results on a screening tool, making an autism diagnosis, early intervention and education, treatments for autism, and autism-specific anticipatory guidance. The continuing education version comprises three modules on identifying ASD, assisting a family through the diagnostic process, and caring for clients with ASD. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov/ncbddd Available from the website.

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• Continuing Education Version

Keywords: Children with special health care needs, Autism, Behavior development, Case assessment, Continuing education, Curricula, Developmental pediatrics, Multimedia, Training

Annotation: This Rhode Island resource guide provides information for families during different stages of the autism spectrum disorder (ASD) diagnosis process in order to assist them in finding help for their children as well as support for the family. The guide discusses the signs and symptoms of ASDs and their effect on child development; offers guidelines to help parents adjust to their child’s diagnosis; and discuses health coverage assistance, treatments and interventions, and educational services. The guide also provides a summary of Rhode Island community resources by type of service, an alphabetical list of state community resources, therapeutic recreation and other activities and programs, state agencies, and websites. The appendices include laws affecting children with disabilities, diagnostic criteria, and answers to frequently asked questions.

Contact: Rhode Island Department of Health, Three Capitol Hill, Providence, RI 02908, Telephone: (401) 222-5960 Web Site: http://www.health.state.ri.us Available from the website.

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Keywords: Autism, Child health, Children with special health needs, Families, Resource materials, Rhode Island, State initiatives

Annotation: This toolkit for parents of adolescents with autism provides options to help plan for the transition to adulthood. The kit is divided into the following sections: self-advocacy, why transition plans are needed, community living, employment and other options, post-secondary educational opportunities, housing, legal matters, health, internet and technology, and getting organized. At the end of most sections are resources specific to that section as well as forms to help keep track of the transition process. Timelines for each state, with state agency information, are also provided.

Contact: Autism Speaks, 1 East 33rd Street, Fourth Floor, New York, NY 10016, Telephone: (212) 252-8584 Fax: (212) 252-8676 E-mail: [email protected] Web Site: http://www.autismspeaks.org Available from the website.

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Keywords: Adolescent with special health care needs, Advocacy, Autism, Consumer education materials, Education, Employment, Employment programs, Housing, Legal issues, State programs, Supported employment, Technology, Transition planning

Annotation: This online learning module provides tools and training to help parents teach their child with autism or a related neurodevelopmental disorder functional skills using Applied Behavior Analysis (ABA) techniques. The learning module includes ten interactive lessons; forms and checklists; notes on accessibility; and a glossary of terms.

Contact: University of California, Davis, MIND Institute, 2825 50th Street, Sacramento, CA 95817, Telephone: (916) 703-0280 E-mail: http://www.ucdmc.ucdavis.edu/mindinstitute/contactus/ Web Site: http://www.ucdmc.ucdavis.edu/mindinstitute/ Available from the website.

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Keywords: Autism, Children with special health care needs, Developmental disabilities, Life skills, Parent education, Parenting

Annotation: This report summarizes a systematic review of studies focusing on therapies for children with autism spectrum disorders (ASD), including behavioral, educational, medical, allied health, and complementary and alternative medicine interventions. The report describes the analytical framework and literature review methods and summarizes the evidence of effectiveness for each form of therapy. Specific outcome measures are presented in separate tables. The appendices include sample data abstraction forms; search strings used the results of the searches; lists of peer reviews and excluded studies; and a discussion of recent systematic reviews of therapies for children with ASDs.

Contact: U.S. Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website. Document Number: AHRQ Publication No. 11-EHC029-EF.

• Full Report
• Executive Summary

Keywords: Children with special health care needs, Autism, Literature reviews, Research, Treatment effectiveness evaluation

Annotation: The tool serves as a quick reference guide for families just receiving a new diagnosis of autism for their child. It provides a template to help parents know who to contact and how to start getting help for their child. Topics include health insurance and medical care, early intervention, education, specialized services, child care, family support, parent education, therapies, and medications. Many national resources are included as well as resources for Washington state. The tool is available in Cambodian, English, Korean, and Spanish. [Funded by the Maternal and Child Health Bureau]

Contact: PAVE, 6316 South 12th Street, Tacoma, WA 98465, Telephone: (253) 565-2266 Secondary Telephone: ( 800) 572-7368 Fax: (253) 566-8052 E-mail: [email protected] Web Site: http://www.washingtonpave.com Available from the website. Document Number: DOH Pub. no. 970-138.

Keywords: Asian English language materials, Autism, Children with special health care needs, Community based services, Community coordination, Parenting, Spanish language materials, State programs, Washington

Annotation: In this Webcast focusing on children's emotional, behavioral, and developmental well-being, Dr Rheem Ghandour, a public health analyst from the Maternal and Child Health Bureau, discusses the prevalence of emotional, behavioral, and developmental conditions at the national and state levels. Dr. James Perrin, professor of pediatrics at Harvard Medical School, and director of the Center for Child and Adolescent Health Policy at Mass General Hospital for Children, discusses evidence of the increasing rates of emotional, behavioral, and developmental conditions among children, with a focus on autism. Finally, Dr. Jane Foy, professor of pediatrics for Wake Forest University School of Medicine and chairperson for the American Academy of Pediatrics Task Force on Mental Health, discusses the role that the public health community plays in addressing pediatric mental illness and provides resources that the task force developed. Presenter information, an agenda, resources, and a program archive are available.

Contact: Maternal and Child Health Information Resource Center, Altarum Institute, 1200 18th Street, N.W., Suite 700, Washington, DC 20036, Telephone: (202) 842-2000 Fax: (202) 728-9469 E-mail: [email protected] Web Site: http://www.mchb.hrsa.gov/researchdata/mchirc Available from the website.

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Keywords: Autism, Behavior problems, Child development, Child health, Emotional instability, Mental disorders, Mental health, Multimedia, Public health

Annotation: This website provides a secure bioinformatics platform for scientific collaboration and data-sharing for autism spectrum disorders (ASD) investigators. Content includes the National Database for Autism Research (NDAR), comprising genetic, imaging, and phenotypic data from multiple sources. Additional content includes information about data sharing, standards, tools, policy and procedures, and training.

Contact: National Institute of Mental Health, 6001 Executive Boulevard, Bethesda, MD 20892-9663, Telephone: (866) 615-6464 Secondary Telephone: (301) 443-8431 Fax: (301) 443-4279 E-mail: [email protected] Web Site: http://www.nimh.nih.gov Available from the website.

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Keywords: Autism, Collaboration, Data linkage, Medical research, Online databases, Resources for professionals, Web sites

Annotation: This report presents findings from a survey of Vermont health care practices that provide primary care to children from birth to age six conducted to better understand current developmental and autism screening processes and referral patterns as well as barriers and facilitating practices. Developed by the Vermont Child Health Improvement Program (VCHIP) at the University of Vermont in collaboration with the Vermont Agency of Human Services, Office of Vermont Health Access, and professional societies, the survey was administered to 103 primary care practices by mail, fax, online, and telephone during 2009. The results of the survey, including response rates and findings according to type of screening, are summarized, and tables are provided to illustrate survey findings. The authors conclude by describing the wide variation in surveillance and screening practices in Vermont and suggest opportunities for improvement based on the results of the research.

Contact: Vermont Child Health Improvement Program, University of Vermont College of Medicine, St. Josephs 7, UHC Campus, One South Prospect Street, Burlington, VT 05401, Telephone: (802) 656-8210 Fax: (802) 656-8368 Web Site: http://www.med.uvm.edu/vchip Available from the website.

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Keywords: Autism, Developmental disabilities, Developmental screening, Screening, State surveys, Vermont

Annotation: This fact sheet, which is geared toward parents, addresses common questions about diagnosis and treatment options for children with mental illnesses, including anxiety disorders, attention deficit hyperactivity disorder, autism spectrum disorders, bipolar disorders, depression, eating disorders, and schizophrenia. A list of resources for more information is included.

Contact: National Institute of Mental Health, 6001 Executive Boulevard, Bethesda, MD 20892-9663, Telephone: (866) 615-6464 Secondary Telephone: (301) 443-8431 Fax: (301) 443-4279 E-mail: [email protected] Web Site: http://www.nimh.nih.gov Available from the website. Document Number: NIH Pub. No. 09-4702.

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Keywords: Anxiety, Attention deficit disorder, Autism, Bipolar disorder, Child health, Child health, Depression, Depression, Diagnosis, Eating disorders, Mental disorders, Mental health, Schizophrenic disorders, Treatment

Annotation: This manual provides information and tools to strengthen skills in collaboration for organizations serving persons with developmental disabilities and enhance the lives of the families and individuals who live with autism spectrum disorders (ASD). Section topics include (1) steps to organizing a collaboration, (2) ten best practices to ensure success, and (3) what successful collaboration looks like. Additional information is provided on elements of cooperation, coordination, and collaboration; sample ground rules; a visioning activity; an action plan, tips on evaluating best practices; and sample evaluation questions.

Contact: California Department of Developmental Services, 1600 Ninth Street, P.O. Box 944202, Sacramento, CA 94244-2020, Telephone: (916) 654-1690 Secondary Telephone: (916) 654-2054 Web Site: http://www.dds.ca.gov/ Available from the website.

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Keywords: Service integration, Autism, California, Cast studies, Collaboration, Developmental disabilities, Family support services, Model programs

Annotation: These proceedings provide information from the workshop, Autism and the Environment: Challenges and Opportunities for Research. The workshop, conducted by the Institute of Medicine's Forum on Neuroscience and Nervous System Disorders, was held on April 18-19, 2007. The focus was on improving the understanding of the ways in which environmental factors such as chemicals, infectious agents, or physiological or psychological stress can affect brain development. Topic include presentations, as well as a transcript of question-and-answer sessions following the presentations.

Contact: National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001, Telephone: (202) 334-3313 Secondary Telephone: (888) 624-8373 Fax: (202) 334-2451 E-mail: [email protected] Web Site: http://www.nap.edu Available in libraries. Document Number: ISBN-10 0-309-10881-0; ISBN-13 978-0-309-10881-2.

Keywords: Autism, Chemicals, Conference proceedings, Environmental influences, Nervous system diseases, Research, Stress

Annotation: This archived audio webcast from April 17, 2008 increases awareness of autism spectrum disorders (ASDs) and highlights opportunities for public health professionals to play a role in helping those affected to reach their full potential. Topics include autism spectrum disorders and their impact on children and families; CDC's ongoing surveillance and research in the area of autism spectrum disorders; CDC's "Learn the Signs. Act Early." campaign and related resources; the important roles public health plays in increasing dialogue about important developmental milestones; identifying children at risk for ASDs, and connecting children and families to appropriate early intervention. [Funded by the Maternal and Child Health Bureau]

Contact: National Association of County and City Health Officials, 1100 17th Street, N.W., Seventh Floor, Washington, DC 20036, Telephone: (202) 783-5550 Fax: (202) 783-1583 E-mail: [email protected] Web Site: http://www.naccho.org Available from the website.

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Keywords: Children with special health care needs, Autism, Child health, Developmental delays, Multimedia, Public awareness campaigns, Public health

Annotation: This Powerpoint presentation provides information from a study of autism spectrum disorders and the lifetime challenges that those who live with autism face. The document presents information about independence, family life, financial planning, and education.

Contact: Easter Seals, 233 South Wacker Drive, Suite 2400, Chicago, IL 60606, Telephone: (312) 726-6200 Secondary Telephone: (312) 726-4258 Fax: (312) 726-1494 E-mail: [email protected] Web Site: http://www.easterseals.com Available from the website.

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Keywords: , Adolescents with special health care needs, Autism, Children with special health care needs, Costs, Education, Families, Independence, Independent living

Annotation: This monograph focuses on the role of the medical home in serving families and children with autism. Specifically it (1) describes the current prevalence and understanding of autism spectrum disorders (ASD), (2) summarizes challenges that families and professionals face as they work to provide early diagnosis of children with ASD and assure access to services, (3) describes principles of the medical home for children and youth with special health care needs, (4) describes a conceptual framework within which partners can ensure early identification and continuous services for children with ASD and their families, and (5) disseminates ASD service system guidelines for medical home primary care practice.

Contact: Waisman Center for Mental Retardation and Human Development, University of Wisconsin, Madison, 1500 Highland Avenue, Madison, WI 53705-2280, Telephone: (608) 263-5776 Secondary Telephone: (608) 263-1656 Fax: (608) 263-0529 Web Site: http://www.waisman.wisc.edu Available from the website.

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Keywords: Children with special health care needs, Autism, Guidelines, Medical home, Service coordination, Strategic plans

Annotation: This knowledge path is a guide to resources about autism spectrum disorder (ASD) screening, diagnosis, treatment, care, and impact on family life. The knowledge path includes tools for health care practices; training; improving state systems and services; research; and finding data and statistics, journal articles, reports, and other materials. Companion resource briefs include Autism Spectrum Disorder: Resources for Families; Autism Spectrum Disorder: Resources for Schools; and Screening: Resource Brief. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Telephone: (202) 784-9770 E-mail: [email protected] Web Site: https://www.ncemch.org Available from the website.

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Keywords: Autism, Bibliographies, Child health, Children with special health care needs, Electronic publications, Families, Knowledge paths

Annotation: This guide, which is intended for education personnel who work with students with autism spectrum disorders (ASD), provides a summary of these students' strengths and deficits, the challenges these deficits create in the classroom, and strategies that education personnel can use to facilitate positive social and educational experiences for students with ASD. The guide provides a general description of ASD, explains the characteristics of students with ASD, suggests evidence-based strategies for working with students with ASD, and identifies resources where additional information can be found.The appendix contains additional information on autism, specific Web sites, and references.

Contact: National Education Association, 1201 16th Street, N.W., Washington, DC 20036-3290, Telephone: (202) 833-4000 Fax: (202) 822-7974 Web Site: http://www.nea.org/ Available from the website.

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Keywords: Children with special health care needs, Autism, Education

Annotation: This paper empirically investigates the hypothesis that early childhood television viewing serves as a trigger for autism among a set of children vulnerable to developing the condition because of their underlying genetics. The paper introduces the issue; provides a brief primer on autism; and discusses four reasons to suspect television as a trigger for autism, early childhood television watching and precipitation, autism and precipitation, and autism and cable television; and provides an interpretation, implications, and a conclusion. References are included. Statistical information is presented in tables and figures grouped together at the end of the report.

Contact: National Bureau of Economic Research, 1050 Massachusetts Avenue, Cambridge, MA 02138-5398, Telephone: (617) 868-3900 Fax: (617) 868-2742 E-mail: [email protected] Web Site: http://www.nber.org Available from the website.

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Keywords: Children with special health care needs, Autism, Genetics, Research, Television

Annotation: This action plan provides a national blueprint to enhance existing systems; expand services for children, adolescents, and adults with autism spectrum disorder (ASD) and their families; and coordinate services across systems. The document discusses (1) achieving family and professional partnerships, (2) early and continuous developmental and medical screening for autism, (3) access to all needed ASD health, mental health, education, and social services, (4) organization of community-based services for easy use, (5) youth transition to adult services, work, and independence, and (6) appropriate financing of care. For each of these topic areas, a goal, challenges, and recommendations are presented.

Contact: Waisman Center for Mental Retardation and Human Development, University of Wisconsin, Madison, 1500 Highland Avenue, Madison, WI 53705-2280, Telephone: (608) 263-5776 Secondary Telephone: (608) 263-1656 Fax: (608) 263-0529 Web Site: http://www.waisman.wisc.edu Available from the website.

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Keywords: Children with special health care needs, Adolescent, Adults, Autism, Community based services, Education, Families, Financing, Health care systems, Health services, Mental health, Program coordination, School to work transition, Service coordination, Social services, Transition planning, Youth in transition program

Annotation: This report presents an overview of major birth defects and developmental disabilities (autism spectrum disorders, cerebral palsy, intellectual disabilities, and learning disabilities), as well as an assessment of some recent public health successes and a look at several ongoing challenges. Conclusions, recommendations, and endnotes are included. Statistical information is presented in tables throughout the report. The report also includes one appendix: a glossary of terms and acronyms.

Contact: Trust for America's Health, 1730 M Street, N.W., Suite 900, Washington, DC 20036, Telephone: (202) 223-9870 Fax: (202) 223-9871 E-mail: [email protected] Web Site: http://healthyamericans.org Available from the website.

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Keywords: Autism, Cerebral palsy, Congenital abnormalities, Developmental disabilities, Learning disabilities, Public health

Annotation: This brief summarizes information from a forum funded by the Maternal and Child Health Bureau held in Washington, DC in May, 2004 at which participants shared information on new policies at the federal and state levels as well as on programs, research, and evidence-based efforts, and successful prevention and treatment options for children's mental health needs. Summaries of the opening presentations are provided, along with discussion of various case studies, a review of health plan and provider initiatives, and programs and strategies for prevention and treatment. Initiatives include Bright Futures in Practice: Mental Health, best practices in autism spectrum disorders and depression, behavioral case management, and Offspring Depression Prevention Program. Other programs and topics described include improving primary care services for children with ADHD, the Challenging Horizons Program (a school-based mental health program), and adolescent depression and the Columbia University TeenScreen Program. [Funded by the Maternal and Child Health Bureau]

Contact: National Institute for Health Care Management Foundation, 1225 19th Street, N.W., Suite 710, Washington, DC 20036, Telephone: (202) 296-4426 Fax: (202) 296-4319 E-mail: http://www.nihcm.org/contact Web Site: http://www.nihcm.org Available from the website.

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Keywords: Autism, Case studies, Child mental health, Community programs, Conferences, Depression, Federal programs, Initiatives, Mental health services, Program descriptions, Psychosocial development, State programs

Annotation: This report, which is in the form of a PowerPoint presentation, describes the trend in the number of children diagnosed with autism served under the Individuals with Disabilities Education Act (IDEA), the services provided to these children, the estimated per-pupil expenditures for educating children with autism, and approaches to their education. The report discusses the study scope and methodology, provides a summary of the results, and discusses background. Each research question is then addressed. Statistical information is presented in figures and tables throughout the report.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 E-mail: [email protected] Web Site: http://www.gao.gov Available from the website. Document Number: GAO-05-220.

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Keywords: Autism, Children, Costs, Special education, Trends