Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism.
We are committed to improving the long-term welfare of individuals, families and caregivers affected by severe forms of autism and related neurodevelopmental disorders. To that end, we
โข ๐๐ฑ๐๐ฐ๐ฎ๐๐ฒ ๐๐ต๐ฒ ๐ฝ๐๐ฏ๐น๐ถ๐ฐ about these disabilities, and how they require special attention and services.
โข ๐ฃ๐ฟ๐ผ๐๐ถ๐ฑ๐ฒ ๐ฎ ๐ฝ๐น๐ฎ๐๐ณ๐ผ๐ฟ๐บ for think tanks and serious discourse addressing policy and services.
โข ๐๐ฑ๐๐ฐ๐ฎ๐๐ฒ ๐ฝ๐ผ๐น๐ถ๐ฐ๐๐บ๐ฎ๐ธ๐ฒ๐ฟ๐ about the impact of legislation and policy on our vulnerable, growing, and often overshadowed population.
โข ๐ฃ๐ฟ๐ผ๐บ๐ผ๐๐ฒ ๐ฟ๐ฒ๐๐ฒ๐ฎ๐ฟ๐ฐ๐ต into therapeutics, neurobiology, and causes of severe forms of autism and related disabilities.
โข ๐ฃ๐ฟ๐ผ๐บ๐ผ๐๐ฒ ๐ฎ๐๐๐ต๐ฒ๐ป๐๐ถ๐ฐ ๐ฎ๐๐ฎ๐ฟ๐ฒ๐ป๐ฒ๐๐ of individuals, families, and caregivers affected by severe forms of autism by giving voice to their realities and needs. The nonprofit NCSA is the nation's leading voice pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. More information: www.NCSAutism.org
๐๐ผ๐บ๐บ๐๐ป๐ถ๐๐ ๐๐๐ถ๐ฑ๐ฒ๐น๐ถ๐ป๐ฒ๐
โข Focus discussions on severe autism and related support needs
โข Respect the lived experiences of families and caregivers
โข Acknowledge the distinct challenges of severe autism versus other parts of the spectrum
โข Maintain civil discourse even in disagreement
โข Share personal experiences respectfully and constructively
โข These guidelines aim to create a supportive, focused space for our community.
๐ง๐ต๐ฒ ๐ก๐ฎ๐๐ถ๐ผ๐ป๐ฎ๐น ๐๐ผ๐๐ป๐ฐ๐ถ๐น ๐ผ๐ป ๐ฆ๐ฒ๐๐ฒ๐ฟ๐ฒ ๐๐๐๐ถ๐๐บ (๐ก๐๐ฆ๐) ๐บ๐ฎ๐ถ๐ป๐๐ฎ๐ถ๐ป๐ ๐ฎ ๐๐ฒ๐ฟ๐ผ-๐๐ผ๐น๐ฒ๐ฟ๐ฎ๐ป๐ฐ๐ฒ ๐ฝ๐ผ๐น๐ถ๐ฐ๐ ๐ณ๐ผ๐ฟ ๐ฐ๐ผ๐ป๐๐ฒ๐ป๐ ๐๐ต๐ฎ๐ ๐๐ป๐ฑ๐ฒ๐ฟ๐บ๐ถ๐ป๐ฒ๐ ๐ผ๐๐ฟ ๐บ๐ถ๐๐๐ถ๐ผ๐ป ๐ผ๐ณ ๐๐๐ฝ๐ฝ๐ผ๐ฟ๐๐ถ๐ป๐ด ๐ถ๐ป๐ฑ๐ถ๐๐ถ๐ฑ๐๐ฎ๐น๐ ๐๐ถ๐๐ต ๐๐ฒ๐๐ฒ๐ฟ๐ฒ ๐ฎ๐๐๐ถ๐๐บ ๐ฎ๐ป๐ฑ ๐๐ต๐ฒ๐ถ๐ฟ ๐ณ๐ฎ๐บ๐ถ๐น๐ถ๐ฒ๐. Our moderators have full discretion to take immediate action against any violations of our community guidelines, including but not limited to:
โข Harassment of families and caregivers
โข Dismissal or minimization of severe autism challenges
โข Hate speech or discriminatory comments
โข Trolling or intentionally disruptive behavior
โข Spam or promotional content
While warnings may be issued, moderators are not required to provide prior notice before taking action. Comments may be removed and users may be banned immediately based on the severity of the violation. This discretion is necessary to maintain a safe, supportive environment for our community.
๐๐ ๐ฝ๐ฎ๐ฟ๐๐ถ๐ฐ๐ถ๐ฝ๐ฎ๐๐ถ๐ป๐ด ๐ถ๐ป ๐๐ต๐ถ๐ ๐ฝ๐ฎ๐ด๐ฒ, ๐๐ผ๐ ๐ฎ๐ฐ๐ธ๐ป๐ผ๐๐น๐ฒ๐ฑ๐ด๐ฒ ๐ฎ๐ป๐ฑ ๐ฎ๐ฐ๐ฐ๐ฒ๐ฝ๐ ๐๐ต๐ฒ๐๐ฒ ๐๐ฒ๐ฟ๐บ๐. All moderator decisions are final. NCSA reserves the right to modify these guidelines at any time to protect our community members.
03/08/2026
NCSA's executive director Jackie Kancir has stood at the forefront for many years of improving crisis care for families affected by severe autism. When in crisis, families need help to help and not to hurt. These protocols can be used as a guide when communicating with Emergency Department staff during those frightening moments. Even better, your hospital can join the many others who have formally adopted them to proactively train staff before receiving a patient in crisis. Print copies to keep in your car and home, and talk with your local hospital about adopting these protocols. These protocols are a tool, not the full solution, but better days start with collaborative and informed conversations on the unique needs, barriers, and approaches to care for individuals with severe forms of IDD, autism, and related disorders.
If your hospital has adopted these protocols, or if you would like to discuss how to start advocating for them to be adopted in your local hospital, reach out to Jackie at policy@ncsautism.org
03/05/2026
TODAY 3/5 is the deadline!
Parents and caregivers, hereโs your chance to be heard! Email your thoughts, experiences, and concerns for your loved one with severe/profound autism and your family to the IACC. Feel free to talk about:
Housing crisis
Lack of respite
No help for unmananageable behaviors
School issues
ANYTHING else that impact you and your family
Let them know where you live. Make specific asks that you would like to see. For example โMy son is on a 5 year-wait list for services, he needs x, y, z.โ
The Interagency Autism Coordinating Committee is the bridge between you and HHS funding for autism services and research.
After you send your email, let us know in the comments what your biggest needs are. What would you like to see IACC advocate for?
03/03/2026
9 year-old with autism designed a backpack that could help first responders comfort a child with autism in a stressful situation. Love this idea!! Good work Ledger! Every first responder needs one of these!
From the article:
The backpacks, which are now named after Ledger and known as "LGM" Bags, are filled with sensory and communication tools carefully chosen by the elementary schooler himself. Inside are noise-canceling Bluetooth headphones that allow a child to connect to a phone or tablet to watch a show or play a game. There are stuffed animals, fidget spinners, a small ball, a blanket, sensory fidgets, a dry-erase board and flash cards with pictures to help nonverbal children communicate their needs.
The goal is to provide comfort and bridge communication gaps until a child can be reunited with a trusted adult. The bags are designed to be worn by emergency responders on duty and easily carried into wooded or rural areas, ensuring they are easily accessible during searches.
After a Sergeant for the Prince George County Police Department reunited a missing child with autism with their family in October 2025, his 9-year-old son, who also has autism, was inspired to create emergency kits to help first responders support other children.
03/02/2026
Tennessee Act NOW! Final Hour! SB2167 quickly moved through the senate committees and is going to the Senate Floor for vote today. The Senate goes into session at 4pm CT. Last chance to tell your Senators to vote YES on SB2167 by Senator Ken Yager.
Act Here:
Let's close the accountability gap in TN disability waiver oversight.
03/02/2026
Check out NCSA's latest newsletter to stay up-to-date on the key events for our community.
Be sure to subscribe to always stay informed.
The Authentic Awareness Autism Assembly returns July 14โ16, 2026 in Washington, D.C. โ three days of training, advocacy on Capitol Hill, and community. Space is limited.
02/27/2026
๐จTennessee residents, we need YOUR voice! Please click to participate in our call-to-action for SB2167/HB2411๐จ
NCSA is proud to SUPPORT this measure because TennCare accountability is long overdue. For families of individuals with severe autismโwho often rely on intensive, long-term supportsโthese policies directly affect daily life: access to care, staffing stability, safety, and long-term planning. We deserve a system where responsibility is clear and leadership cannot remain absent from the conversations that shape our loved onesโ care.
NCSA extends our deepest gratitude to TNCO, Senator Ken Yager, State Representative Renea Jones TN-04, and all of Tennessee Department of Disability and Aging SPPC for their initiative and leadership on these bills.
Families, providers, professionals, and allies, now we need YOUR voice to tell your legislators to PASS SB2167/HB2411 in Tennessee.
Let's close the accountability gap in TN disability waiver oversight.
02/27/2026
02/25/2026
"After a twenty-one month investigation, the Department concluded that the District discriminates against students with disabilities by routinely subjecting them to ineffective seclusion practices that are highly susceptible to abuse and restraints without justification, rather than providing the interventions and supports they need to receive the education they are guaranteed by federal law."
WASHINGTON โ Today, the Justice Department (โthe Departmentโ) notified the Special School District of St. Louis, Missouri (โthe Districtโ) that it found the Districtโs seclusion and restraint practices violate Title II of the Americans with Disabilities Act. After a twenty-one month inve...
02/23/2026
From the article discussing the needed creation of a to help find missing vulnerable people like Jonathan.
_________
Jonathan's family is supporting Senate Bill 6070, or the "Purple Alert Bill." The proposed legislation would create Purple Alerts for missing adults with cognitive or developmental disabilities.
"With the Purple Alert, it's going to set a standard set of protocols that require the alert to be issued immediately," Thao explained. "It's not subject to local law enforcement. It takes the guesswork out."
The hope is that designated Purple Alerts would become widely recognizable by law enforcement and the public, eventually becoming comparable to Amber Alerts, which are issued for missing children.
Help Us Find Jonathan Hoang - Endangered & Missing Person
Nearly a year after Jonathan Hoang was first reported missing from his Arlington home, his family is continuing to fight for change in Olympia.
02/23/2026
Wow! Thank you to everyone who has secured your event tickets and hotel rooms. Some room types are already sold out in less than a week. ๐ฒ If you're planning to attend, please order sooner rather than later because space is limited.
NCSA's Authentic Awareness Autism Assembly needs YOUR voice, so join us July 14-16th in Washington, D.C. for advocacy, fellowship, and fun. We are so excited to walk Capitol Hill again this year with you as we pursue policy, recognition, and solutions for individuals, families and caregivers affected by severe forms of autism and related disorders.
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Contact The Practice
Send a message to National Council on Severe Autism:
many millions of people have traits associated with autism. The NCSA, however, focuses on the burgeoning population of children and adults affected by severe forms of autism or related disorders. This population includes those who, by virtue of any combination of cognitive and functional impairments, require continuous or near-continuous, lifelong services, supports, and supervision. Individuals in this category are often nonverbal or have limited use of language, have intellectual impairment, and, in a subset, exhibit challenging behaviors that interfere with safety and well-being.
We face an urgent, mounting crisis. Due to its rapid increase in prevalence and the severity common in this disability, severe autism has developed into an urgent public health and social services crisis. Pragmatic policy reform to address the lifespan needs posed by severe autism-associated disability is needed, including empowering the nonprofit sector to provide a full continuum of programs, facilitating family and private investments in a wide array of housing and long-term care options, and crafting more efficient federal and state funding mechanisms.
We believe in the importance of treatment and intervention. Individuals and families affected by severe autism and related neurodevelopmental disabilities often suffer very low quality of life due to disruptive and dangerous behaviors and emotional, physical, and financial stress. Innovation in treatment across the lifespan is urgently needed, both to improve autism-associated functional deficits and also the variety of co-morbidities and health conditions affecting the majority of people with severe forms of autism.
What We Do
We are committed to improving the long-term welfare of individuals, families and caregivers affected by severe forms of autism and related neurodevelopmental disorders. To that end, we:
Educate the public about these disabilities, and how they require special attention and services.
Provide a platform for think tanks and serious discourse addressing policy and services.
Educate policy makers about the impact of legislation and policy on our vulnerable, growing, and often overshadowed population.
Promote research into therapeutics, neurobiology, and causes of severe forms of autism and related disabilities.
Promote acceptance and awareness of individuals, families, and caregivers affected by severe forms of autism by giving voice to their realities and needs.
For more information, please see our FAQs and Position Statements.
