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.
03/15/2026
NCSAโs Board President Jill Escher has been named the 2026 recipient of the Caryn Schwartzman Spirit Award from the Autism Science Foundation, an honor recognizing outstanding advocacy advancing autism research by family members of individuals with autism.
Jill will receive the award at ASFโs 13th Annual Day of Learning on March 26 in New York City, an event featuring leading autism researchers sharing the latest developments in science and clinical research.
The Schwartzman award recognizes outstanding autism research advocacy by family members of individuals with autism.
03/14/2026
This is my son. Alex is 35 years old. He has struggled with basic communication his entire life.
This is severe autism.
Alex has tried many forms of communication: typing, spelling, AAC device, picture cards, icons, gestures, and other nonverbal methods. None of it comes easily. Communication is effortful, limited, and inconsistent. He amazes me every day at how hard he works to be seen and heard.
That reality matters.
National Council on Severe Autism exists because people like Alex are too often spoken for by people who do not understand what severe autism actually looks like.
What happens when the public is taught to expect all autistic people to advocate for themselves in the same way as the most prominent self-advocates?
What happens when people with the fewest impairments are treated as representatives of those with the greatest needs?
IT IS ALREADY HAPPENING.
As the autism spectrum becomes more heterogeneous, people with severe and profound autism are being pushed further out of view. Their needs are being minimized, their families are being dismissed, and their realities are being overwritten by voices with very different lived experiences.
Please share this post and support NCSAโs work to ensure people with severe and profound autism are not erased from autism advocacy and policies.
Thank you.
Cyndi Wall
NCSA Digital Content Coordinator
03/13/2026
We are saddened by the death of Alex LaMorie and extend our condolences to all who are grieving.
This tragedy highlights the need for better crisis response for people with autism and others with serious developmental and psychiatric disabilities. It also underscores an important truth: autism is not monolithic, and crisis response must reflect the full range of support needs, communication differences, and co-occurring conditions that can shape these situations. People with autism and their families deserve systems that are safe, informed, and prepared for complexity.
โ ๏ธ Alex LaMorie was autistic, suicidal, and trying to follow the safety plan he had built to stay alive. That plan included calling 911. He followed it, and did not survive what happened next.
It started march 1st - Alex was experiencing a mental health crisis and told his mother he was feeling suicidal.
Next, he called 911 to request a wellness check on himself, which was part of the plan he had developed for situations like this.
His mother also contacted authorities and made sure they knew he was autistic and at risk of harming himself.
When the police arrived, Alex approached them holding a knife and did not respond to commands to drop it.
Despite two of the officers having crisis intervention training, they still shot and killed him.
Alex was an autism advocate who helped create resources for autistic adults navigating loss.
The man who spent his time helping others cope with grief is now someone the autism community has to grieve.
03/12/2026
ADVOCACY WORKS!!! We are pleased to announce that SB 418 and HB 365 have passed both chambers and is now on the way to the governor's desk for signature! Thank you to everyone who took the time to call their legislators, testified at the hearings, made trips to Tallahassee, and helped get this bill over the finish line. A huge shout out to Senator Shevrin Jones and Representative Susan Valdรฉs for sponsoring this vital bill! It's a great first step in making both the autism community and law enforcement officer community safer! Next year, we will perfect the bill and add in corrections officers! Our job isn't done! But it is time to enjoy the win then its time to regroup and refocus our energy for more bills that make a greater difference for those on the autism spectrum! Great job everyone!!
03/11/2026
From the article: Jackie Kancir, executive director of the National Council on Severe Autism, said many members of her group advocated for greater attention to the needs of those with profound autism when the Autism CARES Act was renewed in 2024. More recently, they submitted public comments to the IACC and were eager to see how the remade committee would address their concerns.
โFamilies โ already holding the weight of safety nets that have systematically collapsed upon their shoulders โ sacrificed and exerted great energy into advocating for improvements to the Autism CARES Act of 2024. Fifteen months later, they are still waiting for the first public meeting of IACC to hear how โ or if โ their efforts had a meaningful impact,โ Kancir said. โThe committee charged to direct nearly $2 billion in autism research funding must be expected to show up also, without delay.โ
Disability Scoop
"Federal Autism Panel Cancels Meeting Without Explanation"
by Michelle Diament | March 11, 2026
For the first time in a year, a panel tasked with helping to direct nearly $2 billion in autism funds was supposed to meet, but now the gathering has been abruptly called off and it's unclear why.
03/10/2026
IACC News: At NCSA, we are proud of how many families participated in submitting public comment for the first public IACC meeting since the reauthorization of the Autism CARES Act in December 2024. Thus, the disappointment many of you expressed when the March 19th meeting was cancelled is understandable. Please know, the meeting is being deemed postponed, and IACC has asserted it will be rescheduled and all previously submitted public comments will be considered. A new window of submitting comments will also be added prior to the new meeting date.
In the meantime, NCSA Board President Jill Escher submitted a public letter to IACC in her personal capacity on her Substack. The incoming IACC Chair Sylvia Fogel MD graciously provided a thorough public response to Jill's letter on X(Twitter), which we provide to you here to keep you informed and up-to-date.
We encourage families to use this extra time from the delay of IACC's meeting to deepen understanding on any topics you find relevant, and when the new public comment period opens, we support your submission of new or updated comments that best reflect the needs and concerns of your family.
This! ๐๐ป "When people suddenly 'discover' these issues or more accurately decide itโs now mainstream enough for them to address the issue, many of us are left with the same reaction: WHERE HAVE YOU BEEN?"
For more than a decade, advocates have been pushing for better crisis response for people with disabilities and mental health needs. The truth is, much of this work has been happening long before anyone decided it was worth paying attention to. Weโve sat in courtrooms with individuals who were cri...
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.
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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.
