Press & Media

Covering severe autism? Start here.

The National Council on Severe Autism (NCSA) is a national 501(c)(3) nonprofit that pursues recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. Our leadership, policy staff, and state chapter chairs are available to reporters, producers, and researchers.

Email press@ncsautism.net Logos & assets

Media contact

Reach us on deadline

press@ncsautism.net

Inquiries go directly to the Executive Director. Put your outlet and deadline in the subject line and we will route your request the same day whenever possible.

General questions: info@ncsautism.org · Policy questions: policy@ncsautism.org

What we can provide

  • Interviews with NCSA leadership on federal and state policy, research, and the realities of lifelong care.
  • Families in your state. Parents and caregivers of severely affected individuals, connected through NCSA state chapters and the National Grassroots Network.
  • Data. Findings from the 2025 NCSA Family Caregiver Survey of 1,289 caregivers across all 50 states and DC.
  • Comment on the IACC, Medicaid and HCBS policy, DOJ and Olmstead developments, autism prevalence, and treatment access.
  • Background on severe and profound autism, including definitions, prevalence, and the service system.

NCSA in the news

As seen in

The New York TimesThe Washington PostThe Wall Street JournalForbesThe GuardianBloomberg GovernmentJAMANPRPOLITICONewsweekBBCMedscapeNJ.comHouston Public MediaTexas Public RadioDisability ScoopABC7 San FranciscoStraight Arrow News

Spokespeople

Who you can talk to

Every NCSA leader is a family member of someone with severe autism. They speak from the policy record and from daily life.

Jill Escher

President

Autism research philanthropist and president of the Escher Fund for Autism. Former lawyer; real estate investor providing low-income housing for adults with developmental disabilities; mother of two adult children with nonverbal autism. Focus: research into the biological causes of autism, prevalence, housing.

Full bio

Jackie Kancir

Executive Director

Leads NCSA's federal and state government affairs and public policy work. Mother of a young adult daughter with a monogenic form of severe autism, severe intellectual disability, and autistic catatonia; a third-generation family caregiver. Focus: Medicaid and HCBS, the IACC, caregiver support, crisis and treatment access.

Full bio

Amy S.F. Lutz, PhD

Vice President

Writer and historian of science (PhD, University of Pennsylvania) and author of Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children. Co-founder of the EASI Foundation; mother of five, one with severe autism. Focus: evidence-based treatment, catatonia and ECT, communication claims.

Full bio

Board members, the Legal & Policy Fellow, and state chapter chairs are also available. See the full team or email press@ncsautism.net to be connected with a family in a specific state.

Recent coverage

In the news, 2026

Selected stories that quote NCSA leadership, cite NCSA research, or feature NCSA state chapters. Links open on the publisher's site; some require a subscription.

2025 highlights

On the record

Statements and public comments

NCSA's correspondence with federal and state agencies, committees, and Congress is published in full on the Government Affairs page. Recent items:

“Authorization on paper is not access. A family filling every gap without support is not a functioning system. The most vulnerable deserve to be seen.”

Whitney Premeaux, NCSA advocate

Fast facts

The numbers behind the story

Cite these with the sources shown. Full survey results and methodology are at ncsautism.org/survey-results.

1 in 31

U.S. eight-year-olds identified with autism spectrum disorder in the most recent CDC surveillance year.

Source: CDC ADDM Network, 2022 surveillance year (report published 2025)

26.7%

Share of autistic children who meet the Lancet Commission's definition of profound autism.

Source: Hughes et al., 2023, Public Health Reports

79%

Caregivers told their family member was "too severe" or "not a good fit" for a program or service.

Source: 2025 NCSA Family Caregiver Survey, N=1,289

63%

Families that experienced a behavioral or psychiatric crisis requiring outside intervention; only 14% said the response fit their child's needs.

Source: 2025 NCSA Family Caregiver Survey, N=1,289

12%

Caregivers with a concrete plan for their family member's care after they can no longer provide it.

Source: 2025 NCSA Family Caregiver Survey, N=1,289

85%

Caregivers extremely concerned about their family member being mistreated or neglected in a placement.

Source: 2025 NCSA Family Caregiver Survey, N=1,289

Boilerplate

About NCSA

Copy-ready description

The National Council on Severe Autism (NCSA) is a nonprofit organization that pursues recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. Founded in 2018, NCSA advocates at the federal and state levels for lifespan services, supports, and supervision, and connects families nationwide through its state chapters and National Grassroots Network. Position statements, policy solutions and an FAQ can be found at NCSAutism.org.

National Council on Severe Autism · 501(c)(3) public charity, EIN 83-0665732 · PO Box 26853, San Jose, CA 95159 · ncsautism.org

Language notes

Terms we use

  • Severe autism describes people with autism who, through any combination of functional, communicative, and cognitive impairments, need constant or near-constant care for their health and safety throughout life. Many have little or no functional communication and may have dangerous behaviors such as aggression, self-injury, and property destruction.
  • Profound autism is a newer research term from the 2021 Lancet Commission; severe autism is the older and more widely understood term. NCSA uses both.
  • Related disorders are conditions, often genetic, that share the features and lifelong care needs of severe autism, such as Phelan-McDermid syndrome, Angelman syndrome, and SYNGAP1-related disorder.
  • NCSA describes its mission as serving people affected by severe forms of autism and related disorders. Please avoid "differently abled," "superpower," and puzzle-piece imagery.

More plain-language answers: Learn About NCSA.

Brand assets

Logos and images

Use the NCSA logo unaltered, with clear space around it, on a white or navy background. Do not recolor, stretch, or pair it with puzzle-piece imagery. Print-resolution files, the dark-background version, and leadership headshots are available on request.

National Council on Severe Autism logo

For reporters

Frequently asked

What is the National Council on Severe Autism?

NCSA is a national 501(c)(3) nonprofit founded in 2018 that pursues recognition, policy and solutions for individuals, families and caregivers affected by severe forms of autism and related disorders. It is led by family members of severely affected individuals and works at the federal and state levels on services, research, and treatment access.

How do I reach NCSA for a media inquiry?

Email press@ncsautism.net with your outlet, topic, and deadline. Requests go directly to the Executive Director and are routed the same day whenever possible.

Who speaks for NCSA?

President Jill Escher, Executive Director Jackie Kancir, and Vice President Amy S.F. Lutz, PhD, are NCSA's primary spokespeople. Board members, the Legal & Policy Fellow, and state chapter chairs are available for specific topics and local stories. NCSA can also connect reporters with families in most states.

What is the difference between severe autism and profound autism?

Profound autism is a research designation introduced by the Lancet Commission in 2021 for autistic people who need 24-hour support, typically with intellectual disability, minimal language, or both. Severe autism is the older, more widely understood term for the same population. NCSA uses both.

Does NCSA take a position on autism causes and treatments?

NCSA supports rigorous research into the biological causes of autism and access to evidence-based medical and behavioral treatments. Its formal positions are adopted by the Board of Directors and published as position statements.

Get NCSA news first.

Statements, public comments, survey releases, and event announcements, by email.

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