The number of children being diagnosed with Autism Spectrum Disorders (ASDs) is growing at an alarming rate. Latest figures from the Centers for Disease Control and Prevention (CDC) reaffirm that ASDs are a critical public health issue that deeply impacts the lives of millions of Americans. ASDs are present from birth (or very early in development) and affect basic human behavior (e.g., social interaction, the ability to communicate ideas and feelings, imagination, etc.).
Although exact neuro-biological mechanisms have not yet been established, it is clear that ASDs reflect the functioning of a child’s developing brain. ASDs are unique in their pattern of deficits and areas of relative strengths. They generally have lifelong effects on how kids learn to be social beings, to take care of themselves, and to participate in the community. ASDs occur along with mental retardation and language disorder in many cases. Thus, educational planning must address both the needs typically associated with ASDs, and needs associated with accompanying disabilities.
Education is currently the primary form of treatment for ASDs. The education of kids with ASDs was accepted as a public responsibility under the Education of All Handicapped Children Act in 1975. Despite the federal mandate, however, the goals, methods and resources available vary considerably from state to state – and school system to school system. In the last few years, courts have become increasingly active in determining the methods and resources allocated by school systems for the education of young people with ASDs.
At the request of the U.S. Department of Education’s Office of Special Education Programs, the National Research Council formed the Committee on Educational Interventions for Children with ASDs and charged the committee to integrate the scientific, theoretical, and policy literature and create a framework for evaluating the scientific evidence concerning the effects and features of educational interventions for kids with ASDs. The primary focus of the charge was early intervention, preschool, and school programs designed for kids with ASDs from birth to age 8. The charge included specific suggestions to examine the following issues pertaining to the education of kids with ASDs:
Although exact neuro-biological mechanisms have not yet been established, it is clear that ASDs reflect the functioning of a child’s developing brain. ASDs are unique in their pattern of deficits and areas of relative strengths. They generally have lifelong effects on how kids learn to be social beings, to take care of themselves, and to participate in the community. ASDs occur along with mental retardation and language disorder in many cases. Thus, educational planning must address both the needs typically associated with ASDs, and needs associated with accompanying disabilities.
Education is currently the primary form of treatment for ASDs. The education of kids with ASDs was accepted as a public responsibility under the Education of All Handicapped Children Act in 1975. Despite the federal mandate, however, the goals, methods and resources available vary considerably from state to state – and school system to school system. In the last few years, courts have become increasingly active in determining the methods and resources allocated by school systems for the education of young people with ASDs.
At the request of the U.S. Department of Education’s Office of Special Education Programs, the National Research Council formed the Committee on Educational Interventions for Children with ASDs and charged the committee to integrate the scientific, theoretical, and policy literature and create a framework for evaluating the scientific evidence concerning the effects and features of educational interventions for kids with ASDs. The primary focus of the charge was early intervention, preschool, and school programs designed for kids with ASDs from birth to age 8. The charge included specific suggestions to examine the following issues pertaining to the education of kids with ASDs:
- assistive technology
- classification
- diagnosis
- early intervention
- inclusion
- the rights of kids with ASDs under the Individuals with Disabilities Education Act
Through the Combating Autism Act, the Department of Health and Human Services (HHS) is investing in strategies to enable kids and teens that have (or are at risk for developing) ASDs to reach their full potential by the following:
• To address the shortage of professionals who are qualified to provide screening and diagnostic evaluation for ASDs, Leadership Education in Neuro-developmental and Other Related Disabilities (LEND) programs support long-term, graduate level interdisciplinary training as well as interdisciplinary services. With Combating Autism Act funding totaling $106.5 million, LEND programs expanded the number of health-care professionals in the pipeline who are qualified to provide screening and diagnostic evaluation for ASDs by increasing the number of trainees who receive a broad range of ASD-focused training and continuing education.
• HHS has awarded 16 State Implementation Grants since 2009 to improve access to comprehensive, coordinated health care and related services for kids and teens with ASDs. Each state receives approximately, $220,000-$300,000 per year. In 2011, planning grants were added as an additional strategy to help States that had limited resources and structure in place to improve ASD services, and each received $75,000 per year.
• Developing a system of services that includes screening kids early for possible ASDs; conducting early interdisciplinary evaluations to confirm - or rule out - ASDs; and providing evidence-based early interventions when a diagnosis is confirmed.
HHS has also partnered with The Arc of the United States to establish a National Resource and Information Center on Autism Spectrum Disorder and Other Developmental Disabilities (Center). The Autism NOW Project is collaborating with several partners, including the Autistic Self Advocacy Network, the Autism Society of America and several ADD Network entities to engage and leverage a national network of disability, aging, and family organizations. The Center provides resources related to community-based experiences (e.g. education, employment, recreation, transportation, early intervention, child care), and evidence-based interventions for ASD service providers, researchers, families, and people with ASDs.
In FY 2012, the National Institutes of Health (NIH) invested an estimated $169 million in research on ASDs. This program of research is guided in part by the objectives set out in the IACC Strategic Plan with particular research focus on:
- Developing effective supports, services, and interventions for people with ASDs
- Identifying potential environmental risk factors that may be linked to the cause(s) of ASDs
- Improving screening and diagnosis of ASDs
- Testing and developing therapeutic treatments for the symptoms of ASDs
Examples of ASD research investments include:
1. Screening and diagnosis of ASDs. Findings from NIH-supported research are shedding new light on how cognition differs among kids with ASDs in comparison to kids who do not have ASDs, as well as how new tools might help therapists and researchers identify children who are potentially at-risk for ASDs.
2. Research to improve services and interventions for ASDs. NIH has encouraged and supported cutting-edge research to address the need for services and behavioral interventions needed by people with ASDs and their families (e.g., studies of behavioral interventions among younger kids; studies of social skills intervention for high-functioning kids, and tools to help them develop and maintain skills needed for successful employment).
3. National Database for Autism Research. This NIH-supported resource provides qualified ASDs researchers access to an extensive database of biomedical information on people with ASDs and their families. Current NDAR users have access to data from 25,000 study participants. Data from Autism Speaks’ Autism Genetic Resource Exchange (AGRE) and Autism Tissue Program were federated and now share data through NDAR. The data is protected by a Certificate of Confidentiality, which protects the privacy of research participants.
4. Identifying ASDs Risk-Factors. NIH-supported research has continued to investigate the causes of ASDs, and in particular the possible role that environmental risk-factors may play in causing ASDs (particularly with regard to how genetic vulnerability and environmental exposures may place people at greater risk for ASDs).
5. Autism Centers of Excellence (ACE). This NIH-wide program includes six centers focusing research on risk factors for ASDs, early brain development and functioning, and the biological bases of core symptoms (e.g., repetitive behaviors, communication difficulties, and social impairment), and five networks focusing on causes, characterization, and improved treatment. Data from the ACEs, along with all new NIH-funded research is expected to be shared through the NIH National Database for Autism Research.
Supporting State efforts to address ASDs:
1. State Protection and Advocacy Agencies. The State Protection and Advocacy Agencies (P&As) provide services to people with ASDs based on the Developmental Disabilities Assistance and Bill of Rights Act of 2000. These efforts include:
- working to resolve complaints through mediation, alternative dispute resolution and litigation
- the protection and advocacy of legal and human rights
- investigation of complaints of violation of rights of people with developmental disabilities
- information and referral
In FY 2012, $40.9 million was invested in these efforts.
2. State Councils on Developmental Disabilities. The State Councils on Developmental Disabilities (SCDD) are charged with identifying the most pressing needs of individuals with ASDs in their state or territory. Councils work to address these needs through systems change and capacity building efforts that promote self-determination, integration and inclusion for individuals with ASDs. SCDD efforts include:
- advocacy, capacity building and systems change
- barrier elimination
- coalition development and citizen participation
- demonstration of new approaches to services and supports
- informing policymakers
- technical assistance
- training
In FY 2012, $74.8 million in federal funding was invested in these efforts.
3. State Councils and Protection and Advocacy Systems. These entities partner with state governments, local communities, self-advocates, family members and the private sector to help individuals with ASDs reach their maximum potential through greater independence, productivity and increased integration in their communities.
Medicare and Medicaid and ASDs:
The Centers for Medicare and Medicaid Services (CMS) provides a wide array of health-related services to beneficiaries with ASDs enrolled in Medicaid, Medicare, and the Children’s Health Insurance Program. The Medicaid program in particular supports people with ASDs who have limited income and resources, and meet certain eligibility criteria. Because Medicaid is a State-based program, available care and services may vary from State to State, and according to age. In addition to physical health services, Medicaid programs provide strong support for community living through home and community-based services such as respite care and employment supports.
The Affordable Care Act and ASDs:
The Affordable Care Act contains important provisions for people with ASDs and their families. Under the new health care law:
• Insurance companies will no longer be able to impose lifetime dollar limits on coverage. Prior to the Affordable Care Act, many plans set a dollar limit on what they would spend for covered benefits during the time people were enrolled in the plan, leaving those affected by ASDs – and their families – to pay the cost of all care exceeding that limit. The law also restricts annual dollar limits and will prohibit them for new plans altogether starting in 2014.
• Job-based and new individual health insurance plans are no longer allowed to deny, limit, or exclude coverage to any person under age 19 based on a pre-existing condition, including kids on the spectrum. Starting in 2014, these protections will be extended to Americans of all ages.
• New health insurance plans or insurance policies must cover preventive services without cost-sharing, including ASDs screening for kids at 18 and 24 months.
• Starting in 2014, kids on the spectrum and their families will have expanded access to affordable insurance options through new Affordable Insurance Exchanges and improvements in Medicaid.
• Starting in 2014, new health plans sold in the individual and small group markets, including Exchanges, will cover “essential health benefits” to help make sure that health insurance is comprehensive. Health insurers will also have annual out-of-pocket limits to protect families’ incomes against the high cost of health care services.
• Young people can remain covered under their parents’ insurance up to the age of 26. Already, 2.5 million more individuals have been insured through this provision of the new law. For a young person with a ASDs and his/her family, that means more flexibility, more options and greater piece of mind.
The Department of Education:
• In 2010 and 2011, the National Institute on Disability and Rehabilitation Research (NIDRR) invested over $3.7 million in research on people with ASDs. Research topics range from improving independent living, developing assistive technology, and improving vocational rehabilitation services.
• In September 2011, the Department issued regulations for the Individuals with Disabilities Education Act of 2004 (IDEA) Part C early intervention program for younger kids with disabilities, improving administration of the program and transition services to the IDEA Part B program for kids identified as having developmental disabilities, including those that may have the early warning signs of ASDs.
• Since 2010, the Department has invested more than $30 million in the Model Transition Programs for Students with Intellectual Disabilities into Higher Education (TPSID) program. The TPSID program was authorized in 2008 by the Higher Education Opportunity Act of 2008 (HEOA) and supports post-secondary programs that promote the successful transition of students on the spectrum with significant limitations in cognitive functioning, into higher education.
• The Department awarded $500 million to States for the Early Learning Challenge Fund, the President’s initiative to establish model systems of early learning for kids with developmental delays to ensure that more kids enter school ready to succeed.
• The President's FY 2013 budget request includes $30 million for Promoting Readiness of Minors in SSI, a pilot program in coordination with the Social Security Administration and other federal agencies to improve post-school outcomes of kids who receive Supplemental Security Income. The Department received funding in 2012 to plan the grants, which will be awarded competitively to States in 2013.
Contact your youngster’s doctor and share your concerns if you think he or she may have a spectrum disorder, or if you think there could be a problem with the way your youngster plays, learns, speaks, or acts. Ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your son or daughter. Specialists who can do a more in-depth evaluation and make a diagnosis include:
- Child Neurologists (specialists who work on the brain, spine, and nerves)
- Child Psychologists or Psychiatrists (specialists who know about the human mind)
- Developmental Pediatricians (specialists who have special training in child development and young people with ASDs)
Also, call your state’s public early childhood system to request a free evaluation to find out if your son or daughter qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call. If your youngster is not yet 3-years-old, contact your local early intervention system. If he or she is 3-years-old or older, contact your local public school system. Even if he or she is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have the youngster evaluated. If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities at 1-800-695-0285.