Over the last decade, tremendous attention has been devoted to understanding Autism Spectrum Disorder (ASD) — its causes, treatment options, and impact on individuals and families. Federal support has played a critical role in advancing autism research and ensuring access to essential services.
A Brief History of the Autism CARES Act
The journey began in 2006 with the passage of the Combating Autism Act, which provided funding for autism research, education, and awareness. This law was reauthorized in 2011, and again in 2014, when it was renamed the Autism CARES Act — short for Collaboration, Accountability, Research, Education, and Support.
The 2014 Act strengthened national efforts to track autism prevalence, train healthcare professionals, and improve early diagnosis and treatment. However, by 2019, several provisions were set to expire, threatening ongoing research and vital support programs.
To prevent these lapses, Congress passed — and President Donald Trump signed — the Autism CARES Act of 2019into law on September 30, 2019. With $1.8 billion in renewed federal funding, agencies such as the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA) can continue critical autism research, data collection, and support initiatives across the country.
Understanding Autism Spectrum Disorder (ASD)
Autism Spectrum Disorder is a developmental disability that affects communication, behavior, and social interaction. As a “spectrum” disorder, it presents differently in every individual — ranging from mild to severe challenges in social, emotional, and cognitive functioning.
In recent years, three conditions that were once diagnosed separately — autistic disorder, Asperger syndrome, and pervasive developmental disorder (PDD-NOS) — have been unified under the single diagnosis of ASD.
Research indicates that autism arises from a combination of genetic, biological, and environmental factors, but it is not caused by childhood vaccinations, as confirmed by multiple scientific studies.
Co-Occurring Conditions and Health Challenges
Many individuals with autism also face co-morbid medical conditions that complicate diagnosis and care. Because communication barriers may make it difficult to express pain or discomfort, underlying health issues sometimes go undetected.
Common co-occurring conditions include:
- Epilepsy and seizure disorders
- Gastrointestinal issues such as chronic constipation
- Sleep disturbances
- Anxiety and depression
- Feeding and eating challenges
- Obesity and behavioral outbursts
These health issues not only affect quality of life but can also be emotionally and financially burdensome for families.
The Economic Impact of Autism
Caring for an individual with autism can be expensive. Studies estimate the average annual cost of raising a child with autism at approximately $60,000, covering therapy, medical care, and specialized education. For adults, the annual cost remains high—around $26,000—to support housing, employment programs, and community integration.
According to Autism Speaks (2017), more than half of young adults with autism have never held a paying job by age 25. After aging out of pediatric care, many lose access to specialized support, resulting in limited employment opportunities and income levels that often fall below the poverty line.
The CDC recognizes autism as a significant public health concern and continues to study developmental disabilities, focusing on identifying risk factors and early interventions.
Why the Autism CARES Act Matters
The Autism CARES Act of 2019 ensures that federal funding continues to drive research, education, and services that improve the lives of individuals with autism and their families. The law supports programs that:
- Advance scientific understanding of ASD
- Improve early screening and diagnosis
- Expand community-based support and intervention programs
- Train healthcare and educational professionals
- Develop strategies for lifelong care and employment opportunities
With continued bipartisan support, this legislation represents a national commitment to advancing autism awareness, inclusion, and innovation in treatment.
Supporting Families Affected by Autism
Autism affects not only the individual diagnosed but also their family, caregivers, and community. Access to proper resources, specialized education, and financial planning can make a tremendous difference in long-term outcomes.
If you or a loved one is impacted by autism and would like to discuss estate planning, special needs trusts, or long-term care strategies, our team is here to help.
📞 Contact Aging in Maine (207)848-5600 to learn how we can help you prepare for the future with compassion, knowledge, and care.
