Pursuing recognition, policy, and solutions for the surging population of individuals, families, and caregivers affected by severe forms of autism and related disorders.
↓ Download Full Report (PDF) Support Our WorkDear NCSA community,
In the early 2010s, many of us in the autism world began noticing an unsettling trend. The public conversations, media reports, and advocacy around autism seemed to take a dramatic shift away from autism's difficult realities and toward something decidedly more romanticized and benign. What had been a serious disorder became "neurodiversity."
Rather than boosting authentic awareness about debilitating pathology, a new vanguard insisted we must passively "accept" a "difference." Telling stories about our children eloping, self-injuring, screeching, shredding the sofa or breaking their iPads became verboten, because we parents were evil or martyrs or ignorant ... or something like that. And all these kids with autism? They have always been here, since forever, and we are just noticing it for the first time.
My palm seemed permanently fixed to my face like the incredulous emoji as I watched this detachment from reality balloon into obscene proportions. And I found that common-sense advocates across the country felt the same — abandoned by a mainstream that had lurched dramatically towards a largely fictional feel-good paradigm, and away from our disabled kids who desperately needed help.
NCSA was born to inject reality into a discourse that had gone astray, and to push for a needed course correction in research, treatment and policy, both state and federal. Today, NCSA has grown into a robust, nationally recognized nonprofit that takes strong stands for the changes our kids so desperately need, but there remains a mountain of work ahead. Please support our important mission and donate today at NCSAutism.org/donate. I cannot mince words here. Changing the future takes work — and money. We so appreciate your generosity, and we look forward to working with you in 2026.
Warm regards,
Jill Escher
President, National Council on Severe Autism
The National Council on Severe Autism pursues recognition, policy, and solutions for the surging population of individuals, families, and caregivers affected by severe forms of autism and related disorders. This population includes children and adults whose cognitive, functional, and behavioral impairments require continuous or near-continuous, lifelong services, supports, and supervision. These individuals are frequently nonverbal or minimally verbal, often have intellectual disability, and in a significant subset, experience dangerous or disruptive behaviors that place their safety and well-being at risk.
NCSA focuses exclusively on this population — one that has grown rapidly in prevalence and remains underserved across research, treatment, and public policy. Many individuals represented by NCSA require lifelong care and face significant barriers to accessing appropriate services across the lifespan. NCSA exists to ensure that this population is no longer overlooked, diluted, or excluded from systems designed to support individuals with disabilities.
In 2025, NCSA advanced its mission through three core areas: national leadership and public recognition, policy and advocacy infrastructure, and solutions and resources for families. Throughout the year, the organization prioritized building durable advocacy infrastructure, expanding national visibility, and equipping families to navigate complex systems related to healthcare, education, housing, safety, and long-term care.
In 2025, NCSA significantly expanded its national communications reach, engagement, and influence, strengthening its role as a trusted, data-driven voice for individuals with severe autism and their families.
Across social platforms, NCSA experienced strong organic growth. LinkedIn reached 97,700 impressions with a 9.7% engagement rate and 23.4% new follower growth. Facebook followers grew 32.7%, driven by short-form video and issue-focused content. X (formerly Twitter) generated 68,188 impressions through policy and media commentary.
NCSA's communications strategy translated into substantial earned media impact. More than 1,000 total media mentions generated an estimated reach exceeding 3.18 billion across broadcast radio, online news, print, television, and digital platforms. Top-performing content addressed difficult but essential topics including severe self-injury, crisis care failures, and the consequences of policy neglect — demonstrating audience demand for honest, reality-based messaging.
In 2025, NCSA significantly expanded its policy and advocacy capacity at the federal and state levels, advancing a disciplined, bipartisan strategy centered on parity, evidence, and authenticity. Through direct legislative engagement, regulatory advocacy, and sustained grassroots mobilization, NCSA elevated severe autism as a serious public health, healthcare, housing, and civil rights issue requiring urgent action.
NCSA hosted its first in-person national advocacy event, the Authentic Awareness Autism Assembly, in Washington, D.C. The event brought together families, providers, and advocates from across the country for direct engagement with Congress.
131 advocates participated, representing 30 states • 150+ meetings held with congressional offices across both chambers • 4 policy briefs delivered totaling 17 pages of bipartisan materials
Advocates advanced four core policy planks: an Autism as a Public Health Emergency declaration, a GAO investigation into housing barriers and regulatory conflicts, autism research priorities and oversight of Autism CARES Act funding in partnership with the Autism Science Foundation, and Medicaid and healthcare access protections for individuals with severe autism. Approximately 20 percent of participants were subsequently invited to schedule follow-up meetings with congressional offices upon returning home, extending the impact well beyond the event itself.
The fly-in intentionally included individuals with severe autism whenever possible, with all programs designed for accessibility and inclusion. NCSA partnered with the Linked Autism Safety Project to develop a guide for Capitol Police to proactively reduce risk when encountering individuals with severe autism — guidance that remains available for all future congressional visits.
To broaden access and sustain year-round legislative engagement, NCSA launched Voices for the Voiceless, its first virtual advocacy week. 162 advocates participated in direct virtual meetings with their elected officials via Zoom — many alongside the individuals with severe autism they care for. The accessibility of the virtual format allowed legislators to interact with individuals with severe autism, with some congressional offices reporting this as a first-time experience. Participants received 4.5 hours of structured training covering congressional communications, legislative strategy, messaging development, and policymaker research. A national debriefing session reinforced learning and shared outcomes.
NCSA supported 425 individual advocates in submitting public comments opposing a proposed federal rule (RIN 1235-AA14) that sought to eliminate Section 14(c) of the Fair Labor Standards Act nationwide — a program that provides access to meaningful paid work for individuals with significant disabilities, including many with severe autism. NCSA also submitted a formal organizational comment. The campaign was successful: Section 14(c) continues to remain available nationwide where state-level bans do not exist.
Throughout 2024, NCSA advocated for long-needed updates to the language of the Autism CARES Act. Congress listened. The reauthorization emphasized research that reflects the entire population of individuals with autism spectrum disorder, including those individuals with co-occurring conditions and the full range of needs for supports and services. In 2025, NCSA focused on urging accountability to that hard-fought language. In late September, the National Institutes of Health announced a $50 million Autism Data Science Initiative funding 13 projects that reflect long-standing community calls for research addressing the full spectrum of autism, including individuals with severe autism.
Beyond legislative advocacy, NCSA's national leadership engaged directly with seven federal agencies: the Centers for Medicare and Medicaid Services (CMS), the Department of Health and Human Services (HHS), the National Institutes of Health (NIH), the Department of Labor, the Administration for Community Living (ACL), the Department of Housing and Urban Development (HUD), and the National Council on Disability. Engagements focused on Medicaid access, workforce challenges, the housing crisis, healthcare barriers, recommended models of care, research parity, and meaningful daily activity — through formal letters, Hill briefings, public comment submissions, responses to federal Requests for Information, and direct meetings with agency leadership.
NCSA's National Grassroots Network expanded coordinated advocacy across multiple states, supporting families in advancing legislation in California, Kentucky, New Jersey, New York, North Dakota, and Pennsylvania, among others, addressing service access, education, safety, caregiver support, housing, and specialized supports. The New Jersey NCSA Chapter was named in the most recent Annual Report by the New Jersey Ombudsman for its dedicated efforts to enhance safety reforms.
In 2025, NCSA expanded its education and family support work with a focus on practical skill-building, connection, and long-term capacity development for families impacted by severe autism. Rather than duplicating traditional support models, NCSA prioritized programs that build durable skills, foster confidence, and reduce isolation without adding pressure to already overburdened families.
NCSA continued its expert-led webinar series covering topics including healthcare access, housing, seizures, behavioral supports, and crisis prevention. All webinars are recorded and available for replay on the NCSA website and YouTube channel to honor the time constraints of families who cannot attend live.
In 2025, NCSA launched a virtual book club focused on building foundational skills for effective civic engagement — including critical thinking, rhetoric, civics, negotiation, and communication — rather than autism-specific content. This reflects an understanding that caregivers of individuals with severe autism already live and breathe autism day and night; the book club provides space for transferable skills and adult-to-adult conversation beyond the caregiving role. Participation grew from 30 in the initial cohort to 42 in the ongoing cohort. Books are curated so each chapter stands alone, allowing participants to rejoin after absences caused by caregiving demands.
NCSA conducted a national caregiver survey documenting systemic barriers faced by families affected by severe autism. Results revealed patterns of exclusion from services, healthcare, and supports that directly inform NCSA's advocacy priorities, educational programming, and public communications.
View Survey Findings →NCSA supported carefully selected researchers in 2025 to improve understanding of self-injurious behaviors, caregiver burden, and family adherence to provider plans. Families affected by severe autism across the lifespan were provided opportunities to participate in meaningful research, ensuring that disability policy is guided by the authentic experiences and unique needs of this population.
In 2025, NCSA honored Cyndi Wall with the Authentic Awareness Award in recognition of her sustained, independent leadership in public discourse on severe autism. For years, Cyndi has used digital platforms to challenge misinformation, confront stigma, and insist on honesty about the realities families face when autism is severe. Long before joining NCSA, she built a national audience by addressing topics many avoid: aggression, crisis response failures, service exclusion, caregiver burnout, and the consequences of policies that prioritize comfort over truth.
Cyndi's advocacy is notable not only for its reach, but for its discipline. Her content is direct, accessible, and grounded in real policy and service failures. She does not dilute hard realities for approval, nor does she sensationalize them. Cyndi also serves as NCSA's Digital Content Coordinator, helping translate complex policy issues into short-form video content that amplifies family priorities across platforms.
When prominent self-advocacy groups oppose the supports our loved ones need, such as GPS trackers, specialized police training, and guardianship protections, NCSA rejects those trendy narratives and advocates for the actual needs of people with severe autism and their families. Through this community, I have gained confidence as an advocate and felt less alone carrying experiences that are often dismissed or misunderstood. NCSA has given my son and my family a place where we truly belong.
— Cyndi Wall, 2025 Authentic Awareness Award Recipient
NCSA's work is grounded in the lived experiences of the families it serves. The following testimonials are drawn from our 2025 community.
The kind of autism our family experiences all the time, 24/7/365, is a very serious problem. Countless other families have similar experiences, and their numbers are growing rapidly. But you would not know that from the big autism charities or most news and op-eds. While they engage in autwashing — pretending that autism is not a real problem and does not need solutions — NCSA is a rare breath of fresh air. NCSA tells what families know from daily first-hand experience with severe or profound autism. NCSA speaks for us when others do not. They advocate for actually doing something about it, including lobbying the federal government to actively seek real solutions. NCSA is one of the most important charities and it deserves our support.
As a parent and caregiver to multiple children with autism, including children with severe autism, I know firsthand that no two children have the same needs. The levels of support, complexity, and intensity required can be vastly different, even within the same household. Yet too often, these differences are ignored. Through NCSA, I found camaraderie, practical guidance, and meaningful opportunities for grassroots advocacy. Advocating alongside other families at our national conference in Washington, D.C., and meeting directly with legislators at the Capitol, has been nothing short of inspiring. NCSA fills a critical gap by recognizing the realities of severe autism and organizing families to push for real solutions.
What I have learned this past year could not have been replicated in a classroom or a conference. It simply would not have meant what it did, if I hadn't come to Washington with arms purple from scars and that MOTIVATION to play the game. No other organization would have taken me in that condition or even understood where I came from.
Additional testimonials and family stories from the communities NCSA serves are available on our Crisis Care and Take Action pages, and in the full 2025 Annual Report PDF.
The National Council on Severe Autism is governed by a volunteer Board of Directors with expertise spanning law, medicine, public policy, education, research, and advocacy. The Board provides fiduciary oversight, sets strategic direction, and ensures that organizational activities align with NCSA's mission and policy priorities. NCSA maintains a Platinum Seal of Transparency from Candid (formerly GuideStar), the highest level of public disclosure recognized by the nation's leading nonprofit watchdog.
Jill Escher, JD — President
Amy Lutz, PhD — Vice President
Gloria M. Satriale, EdD, JD, LBS-PA, ACRE, QM, MCPP — Secretary
Mark Kendall, BA — Treasurer
Alison Singer, MBA
Lisa Parles, JD
Lee Wachtel, MD
Eileen Lamb
Arthur Westover, MD
Shaji Haq, PhD, BCBA-D, NCSP
Lori Ireland
Jonah Zimiles, JD, MBA
Jackie Kancir — Executive Director
Cristina Gaudio — Legal & Policy Fellow
All board members serve in an unpaid, volunteer capacity. Core operational roles are supported through independent contractor agreements. The organization operates without employees, directing the majority of its financial resources toward mission-critical work through a lean model that avoids duplicative administrative overhead.
NCSA operates with a deliberate focus on mission alignment, fiscal responsibility, and impact. Despite a comparatively modest annual budget, NCSA's financial structure supports sustained national engagement, professional policy capacity, and programmatic reach across federal and state systems.
Revenue was derived from individual contributions, foundation support, and mission-aligned event revenue. NCSA does not rely on large institutional fundraising infrastructure or mass-market campaigns. Financial records are managed by professional bookkeeping and accounting services, and required federal filings including IRS Form 990 are completed annually.
In 2025, NCSA elected to operate under IRS Section 501(h), providing clear and transparent guidance for permissible lobbying expenditures while maintaining full compliance with 501(c)(3) charitable status.
✓ Candid Platinum Seal of TransparencyThe progress reflected in this report marks a shift from emergence to durability. In 2025, NCSA moved from building credibility to sustaining national influence across policy, public discourse, and family-centered solutions. The work ahead is not about expansion for its own sake, but about ensuring that systems, policies, and services evolve in ways that genuinely meet the needs of individuals with severe autism and their families.
Beginning in early 2026, NCSA will launch three monthly working groups focused on safety and criminal justice, healthcare access, and the school-age years. Each group will bring together families, subject matter experts, and aligned organizations to identify persistent system gaps and develop one tangible, evidence-informed solution by Q4 2026, followed by a public webinar sharing findings and recommendations.
Structured advocacy opportunities continue with a virtual advocacy week in April 2026 aligned with Autism Awareness Month, a second Voices for the Voiceless virtual legislative initiative in September 2026, and the second Authentic Awareness Autism Assembly fly-in scheduled for July 14-15, 2026 in Washington, D.C.
