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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.


Displaying records 1 through 20 (77 total).

Anderson KA, Rast JE, Roux AM, Garfield T, Shattuck PT. 2020. National autism indicators report: Children on the autism spectrum and family financial hardship. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 47 pp.

Annotation: This report focuses on the financial hardships facing families raising children on the autism spectrum. It discusses disability and sociodemographic characteristics of children with autism spectrum disorders, levels of family financial hardship, and safety net program use. Recommendations are included. [Funded by the Maternal and Child Health Bureau]

Contact: Drexel Autism Institute, Drexel University, 3141 Chestnut Street, Philadelphia, PA 19104, E-mail: https://drexel.ed Web Site: https://drexel.edu/autisminstitute/ Available from the website.

Keywords: Autism, Children with special health care needs, Family support services, Financial barriers, Financial support, Statistics

American Academy of Pediatrics. 2019. Autism: Caring for children with autism spectrum disorders—A practical resource toolkit for clinicians, 3rd ed.. Elk Grove Village, IL: American Academy of Pediatrics,

Annotation: This digital toolkit assists clinicians in the recognition, diagnosis, and management of children with autism spectrum disorders (ASDs) across the life span. It contains American Academy of Pediatrics autism clinical reports and policy statements and expert ASD screening, surveillance, diagnosis, treatment, and referral guidelines. Fact sheets are provided along with coding and billing guidance, and a webinar with video and slides for additional clinician use. Family handouts, in English and Spanish, that discuss diagnosis, transition, financial assistance for families, school inclusion, medical home, adolescents and sexuality, teaching social skills, and child wandering are included.

Contact: American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, Telephone: (630) 626-6000 Secondary Telephone: (847) 434-4000 Fax: (847) 434-8000 Web Site: https://www.aap.org Order from the website for a charge. Document Number: ISBN 978-1-61002-363-4.

Keywords: , Clinical coding, Adolescent development, Adolescents, Autism, Child development disorders, Children, Communication disorders, Developmental disabilities, Diagnosis, Psychosexual development, Psychosocial development, Resources for professionals, Screening, Spanish language materials, Special health care needs

Shattuck PT, Rask JE, Roux AM, Anderson KA, Benefides T, Garfield T,McGhee Hassrick E, Kuo A. 2018. National autism indicators report: High school students on the autism spectrum. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 59 pp.

Annotation: This report focuses on teens and young adults with autism who are about to finish high school and highlights challenges facing minority youth and those from low-income households. It identifies risk and protective factors that can influence how lives turn out. It describes what is known about this population, including individual and household demographics and disability characteristics and adaptive behaviors. It also looks and special education services during secondary school and health, mental health, and health care. Recommendations are included. [Funded by the Maternal and Child Health Bureau]

Contact: Drexel Autism Institute, Drexel University, 3141 Chestnut Street, Philadelphia, PA 19104, E-mail: https://drexel.ed Web Site: https://drexel.edu/autisminstitute/ Available from the website.

Keywords: Adolescents with special health care needs, Autism, Transition to independent living

Roux AM, Rast JE, Anderson KA, Shattuck PT. 2017. National autism indicators report: Develomental disability services and outcomes in adulthood. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 78 pp.

Annotation: This report focuses on the needs of adults with autism spectrum disorders who have more severe challenges, including those who have just left the special education system and those who are at the end of their working years, to look at differences in services and outcomes across the life course. It includes data on individuals with other forms of developmental disabilities. [Funded by the Maternal and Child Health Bureau]

Contact: Drexel Autism Institute, Drexel University, 3141 Chestnut Street, Philadelphia, PA 19104, E-mail: https://drexel.ed Web Site: https://drexel.edu/autisminstitute/ Available from the website.

Keywords: Autism, Developmental disabilities, Developmental disability programs, Special health care needs, Statistics

Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health and Autism Speaks. 2016. Experience matters: A view into the health and wellbeing of US children and families with autism spectrum disorder. Baltimore, MD: Data Resource Center for Child and Adolescent Health, 117 pp.

Annotation: This chartbook for families, advocates, policymakers, and researchers provides a national portrait of how children in the United States receive their diagnosis of autism spectrum disorder (ASD), how their daily lives are impacted, and how their families are doing. Topics include the prevalence of ASD, diagnosing ASD, the child's health, health care and related services, school and social wellbeing, and coping with ASD. The appendices contain information on the ASD data presented in the chartbook including a glossary, a crosswalk of the data sources, methodological information, and guidance for accessing the data. [Funded by the Maternal and Child Health Bureau]

Contact: Data Resource Center for Child and Adolescent Health, Child and Adolescent Health Measurement Initiative, The Johns Hopkins Bloomberg School of Public Health, 615 North Wolfe Street, Baltimore, MD 21205, E-mail: [email protected] Web Site: https://childhealthdata.org Available from the website.

Keywords: Adolescent health, Adolescents with special health care needs, Autism, Child health, Child with special health care needs, Coping, Data sources, Diagnosis, Early intervention services, Family health, Prevalence, Relationships, Special health care services, Statistical data

Massachusetts Act Early. 2016. Considering culture in autism screening. [no place]: Massachusetts Act Early, 8 pp.

Annotation: This document for primary care health professionals provides tips for promoting the identification of autism spectrum disorders (ASDs) and other developmental disabilities for children from immigrant families or from families whose primary language is not English. Contents include tips for culturally- and linguistically-competent autism screening; the Modified Checklist for Autism in Toddlers (M-CHAT) screening tool in English and in four translations (Chinese, Haitian Creole, Spanish, and Vietnamese); an assortment of materials from the Centers for Disease Control and Prevention's Learn the Signs. Act Early campaign for use in practice; and resource and referral information.

Contact: Massachusetts Act Early, MA Web Site: https://www.maactearly.org/ Available from the website.

Keywords: Autism, Culturally competent services, Developmental disabilities, Developmental screening, Early identification, Immigrants, Infants, Massachusetts, Non English language materials, Public awareness campaign materials, Referrals, State initiatives, Young children

Roux AM, Anderson JE, Shattuck PT. 2016. National autism indicators report: Vocational rehabilitation. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 78 pp.

Annotation: This report gives national and state data on the use of vocational rehabilitation services to support employment of people with autism. It spotlights use of job placement services and on-the-job supports, and outcomes of students and Social Security Income (SSI) recipients. [Funded by the Maternal and Child Health Bureau]

Contact: Drexel Autism Institute, Drexel University, 3141 Chestnut Street, Philadelphia, PA 19104, E-mail: https://drexel.ed Web Site: https://drexel.edu/autisminstitute/ Available from the website.

Keywords: Autism, Children with special health care needs, Statistics, Transition to independent living, Vocational rehabilitation

Roux AM, Shattuck PT, Rast JE, Rava JA, Anderson KA. 2015. National autism indicators report: Transition into young adulthood. Philadelphia, PA: A. J. Drexel Autism Institute, Life Course Outcomes Research Program, 66 pp.

Annotation: This report describes characteristics of youth on the autism spectrum at age 17; what happens to them as they enter adulthood in the areas of transition planning and the services cliff; and what is known about key outcomes in the areas of disconnection, health, mental health, health care, postsecondary education, employment, living arrangements, social and community participation, and safety and risk. [Funded by the Maternal and Child Health Bureau]

Contact: Drexel Autism Institute, Drexel University, 3141 Chestnut Street, Philadelphia, PA 19104, E-mail: https://drexel.ed Web Site: https://drexel.edu/autisminstitute/ Available from the website.

Keywords: Autism, Children with special health care needs, Statistics, Transition to independent living

State Public Health Autism Resource Center, Association of Maternal and Child Health Programs. 2015. National Landscape: Program and Initiative to Promote Developmental and Autism Screening. Washington, DC: State Public Health Autism Resource Center, 17 pp.

Annotation: This environmental scan describes national and federal programs and initiatives aimed at improving developmental and autism screening for children.

Contact: State Public Health Autism Resource Center, Association of Maternal & Child Health Programs , 2030 M Street, N.W., Suite 350 , Washington, D.C. 20036, Telephone: (202) 775-0436 Web Site: http://www.amchp.org/programsandtopics/CYSHCN/projects/spharc/Pages/default.aspx Available from the website.

Keywords: Autism, Developmental disabilities, Developmental screening, Federal initiatives , Federal programs, National programs

Children's Hospital and Health Center, Anderson Center for Dental Care. [2014]. Healthy smiles for children with autism [flyer]. San Diego, CA: Rady's Children's Hospital—San Diego, Anderson Center for Dental Care, 1 p.

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.

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

Rady's Children's Hospital—San Diego, Anderson Center for Dental Care. [2014]. Healthy smiles for children with autism [brochure]. San Diego, CA: Rady's Children's Hospital—San Diego, Anderson Center for Dental Care, 2 pp.

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.

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

National Institute of Mental Health, Office of Autism Research Coordination. 2014. Report to Congress on activities related to autism spectrum disorder and other developmental disabilities under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY2010–FY2012). Washington, DC: U.S. Department of Health and Human Services, 104 pp.

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.

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

Eisenberg JM. 2014. Therapies for children with autism spectrum disorders: A review of the research for parents and caregivers. Rockville, MD: U.S. Agency for Healthcare Research and Quality, 13 pp.

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) 427-1104 Secondary Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website. Document Number: AHRQ Pub. No. 14-EHC036-A.

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

U.S. Agency for Healthcare Research and Quality, Effective Health Care Program. 2014. Comparative effectiveness of therapies for children with autism spectrum disorders. Rockville, MD: U.S. Agency for Healthcare Research and Quality, 2 pp. (Clinician research summary, Developmental delays: Autism spectrum disorder)

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) 427-1104 Secondary Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website. Document Number: AHRQ Pub No. 14-EHC036-3.

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

Lorenzo SB. 2014. Autism spectrum disorders: Family resource brief (2nd ed., upd.). Washington, DC: National Center for Education in Maternal and Child Health, 1 p.

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.

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

Lorenzo SB. 2014. Autism spectrum disorders: School resource brief (2nd ed., upd.). Washington, DC: National Center for Education in Maternal and Child Health, 1 p.

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.

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

Interagency Autism Coordinating Committee. 2014. 2013 summary of advances in autism spectrum disorder research. [Washington, DC: Interagency Autism Coordinating Committee], annual.

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.

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

Crosse M. 2014. Federal autism activities: Funding and coordination efforts. Washington, DC: U.S. Government Accountability Office, 12 pp.

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 Secondary Telephone: E-mail: [email protected] Web Site: http://www.gao.gov Available from the website. Document Number: GAO-14-613T.

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

Vanderbilt Evidence-Based Practice Center. 2014. Therapies for children with autism spectrum disorder: Behavioral interventions update. Rockville, MD: U.S. Agency for Healthcare Research and Quality, 476 pp. (Comparative effectiveness review; no. 137)

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) 427-1104 Secondary Telephone: (301) 427-1364 Web Site: http://www.ahrq.gov Available from the website.

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

Association of Maternal and Child Health Programs. 2014. Environmental scan: State strategies and initiatives to improve developmental and autism screening and early identification systems. Washington, DC: Association of Maternal and Child Health Programs, 12 pp.

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.

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

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This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.