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.
10/10/2025
Holiday shopping is around the corner, and if your loved one has been into the same Disney movie, favorite song, or beloved toy for yearsโฆ you are definitely not alone.
Finding something new that actually lands can feel challenging. So letโs help each other out!
What are your tried-and-true must-haves or that one unexpected item that turned out to be a surprise hit lately? Sensory favorites, adaptive tools, apps, comfort items, communication aids, toys, equipmentโฆ anything goes.
Drop your ideas below and letโs make this yearโs gift hunt a little easier (and maybe a lot more fun).
10/10/2025
Check out another great piece by Alison Singer today:
โThis isn't about labeling for labeling's sake. It's about clarity -- clarity that drives better policy, training, research, and funding.
Our current one-size-fits-all diagnosis hides the reality that some individuals' needs are so complex that they simply don't fit within the programs designed for the broader โautismโ population.โ
โโ-
MedPageToday
Science recognizes autism subtypes -- the DSM should too
10/09/2025
With all the media attention on autism, thereโs been a rise in so-called โexpertsโ who deny the realities families like ours live every day.
In our EDโs personal Substack, she breaks down seven myths that shape public narratives and offers language we can use to bring more clarity to these conversations.
โ๐ญ๐ค What myths would you add? How would you help others better understand the realities of severe forms of autism?
Your stories are far more powerful than any talking points. No one has more experiencing managing extinction bursts than our families. Thatโs all this extra noise is. The era of linguistic inversion is at a tipping point. Meet the moment with clarity instead of outrage, and the tides will indeed turn.
Weโre thrilled to announce the winners of our recent book club giveaway! Each winner will be receiving a free copy of We Hold These โTruthsโ by Casey Burgat:
๐ Samantha Horine
๐ Matthew Crome
๐ Sarah Peterson
๐ Adriana Crostley
๐ Tammie Thomas
๐ Laura Fantone-Baca
All winners were selected using a random generator.
Although entries for the giveaway are now closed, registration for the book club is still open at NCSAutism.org/book
Join us and be part of the conversation! ๐
10/05/2025
Final hours to enter the giveaway for NCSAโs next book club! Entries close at midnight ET tonight.
NCSA National Grassroots Network Book Club: Together We Learn, Together We Rise. We get it. Your life is a masterclass in superhuman endurance. This book club? It's your secret weapon for keeping your brain as flexible as your daily schedule.
10/05/2025
We deserve answers. If you donโt want answers, then kindly look away and let us do our jobs of of raising our kids according to their own individual needs.
Photo Credit: Cyndi Wall - Aliesmom
10/02/2025
In other news, water is wet.
From the article:
____________
"People diagnosed with autism later in life are genetically more similar to those with attention deficit hyperactivity disorder (ADHD)," Thomas Bourgeron, a study co-author and researcher at France's Pasteur Institute, told AFP.
โUta Frith, an emeritus professor of cognitive development at University College London not involved in the study, said she was hopeful that in the future even more subgroups within autism โwill come to light, and each will find an appropriate diagnostic labelโ.โ
"If there is talk about an 'autism epidemic', a 'cause of autism' or a 'treatment for autism', the immediate question must be: which kind of autismโ.
__________
Which ๐ kind ๐ of ๐ autism!!!! ๐
PARIS, France โ People who are diagnosed with autism later in life could have a different form of the condition than those diagnosed during childhood, a large study said Wednesday. The findings come as US President Donald Trump and his Health Secretary Robert F. Kennedy Jr have been spreading disi...
Families of people with severe autism say the repeated expansion of the diagnosis pushed them to the sidelines. A new focus on the disorder has opened the way for them to argue their cause.
09/30/2025
We feel grateful to NCSA board member Eileen Lamb for being such a courageous voice for families with severe autism and for this documentary that displays the robust diversity of experiences and priorities across the spectrum.
With US Health Secretary RFK Jnr declaring autism an โepidemic,โ Dateline reports from America on the intense societal, and political divisions surrounding a...
09/30/2025
Many of our families participated in the SPARC study funded by a PCORI award. For those that participated, check your email for an update. The research agenda created by caregivers and professionals over the last few months is now available in the portal.
We would like to thank the entire team on this project for their diligence ensuring that family voices were heard and represented in the research process.
The agenda outlines stakeholder-generated research questions, organized into broad domains. Collectively, they highlight how caregiver adherence is shaped not only by training and support but also by caregiver mental health, systemic access to services, professional quality, and social/environmental factors.
It sets a roadmap for future research aimed at improving treatment outcomes, caregiver well-being, and service delivery models for families managing profound challenges.
Do you know another caregiver who you think would like to see these research questions or become involved in the research process? Invite them to this page by sharing this link: https://canvas.instructure.com/enroll/WXMF7R
(You can find the full research agenda by clicking on the "modules" option on the left hand panel and navigating to the section title "Research Agenda".)
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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.
