National Council on Severe Autism

09/12/2026

🫶🏼

09/11/2026

25 years later, we remember those who were lost, the heroes who rushed towards danger with bravery, and the families whose lives were forever changed on September 11, 2001.

We remember. 🇺🇸

09/10/2026

💛 Today is International R U OK? Day 💛

For families affected by severe autism, sometimes the honest answer is no.

Caregiving can be relentless and isolating. And when someone is already overwhelmed, even answering “How can I help?” can feel like one more thing to figure out.

So today, don’t worry about finding the perfect words.

💛 Just reach out. 💛

Simple Options:
💡 Call a caregiver you haven’t talked to in a while.

💡 Send a text that simply says, “Thinking of you.”

💡 Drop a funny reel, meme, or video into their messages.

💡 Send an old photo or memory that might make them smile.

💡 Leave a voice message just to say hello.

💡Or send something that says, “No need to respond, just wanted you to know I’m thinking about you.”

And remember the caregiver who has gone quiet.

The one who left you on read.
The one who didn’t answer your last text.
The one who never replied to that email or message.

Please don’t assume you did something wrong.

They may have read your message in the middle of a crisis, during an appointment, after another sleepless night, or while managing one of a hundred things that needed their attention first. They may have thought, “I’ll answer this later,” and simply never made it back.

Caregiving can make maintaining relationships incredibly difficult.

💛 Silence doesn’t always mean someone wants distance. 💛

So reach out again.

You don’t have to solve anything. You don’t need the perfect words.

💛 Sometimes caring for a caregiver is simply continuing to show up, even when they can’t.💛

09/07/2026

Join us TOMORROW! Noon ET
"Tracking Outcomes of Intensive Outpatient Treatment for Dangerous Behaviors" with Dr. Mindy Scheithauer and Dr. Nate Call. Register today

Welcome! You are invited to join a meeting: Tracking Oucomes of Intensive Outpatient Treatment for Dangerous Behaviors. After registering, you will receive a confirmation email about joining the meeting.

09/06/2026

I’m Cyndi Wall, the Digital Content Coordinator for NCSA. I’m also the mother of a 35-year-old son with profound autism, and I have spent more than three decades as an autism advocate.

I asked Jackie Kancir, Executive Director of NCSA, for permission to use this platform to share my concerns about the IACC’s refined definition of “profound autism.” She agreed, but I want to establish that the concerns and opinions that follow are entirely my own.

There is much to celebrate in IACC’s new Strategic Plan. Families of people with severe autism have fought for years to bring attention to medical complexity, regression, wandering, dangerous behavior, and lifelong caregiving needs. I am one of them.

But I have serious concerns about the new definition of profound autism, particularly the decision to move away from intellectual disability as a qualifying pathway.

IACC’s definition applies to people age 8 or older with autism who have minimal or no functional speech, including those who are nonspeaking, use single words or 2 to 3 word phrases primarily for basic needs, wants, or protests, and/or have limited ability to engage in flexible, reciprocal, or generative communication. They must also require continuous or near-continuous supervision and substantial assistance with activities of daily living. Intellectual disability is neither required nor presumed.

The concern about presuming intellectual disability in nonspeaking people is legitimate. Lack of verbal speech should never automatically be interpreted as lack of understanding or intelligence.

But intellectual disability was never required under previous definitions of profound autism. It was one pathway.

That distinction is critical.

Protecting one group should not make another disappear.

The term “profound autism” did not begin with IACC. The Lancet Commission introduced the designation in 2022 to draw attention to people with autism with significant impairments and lifelong, round-the-clock support needs who were being underserved and underrepresented in research.

That approach was examined more closely in a 2026 consensus study led by Matthew Siegel and colleagues. The resulting research definition required severe adaptive impairment and adult supervision for health and safety, along with severely impaired cognitive ability, reflected by an IQ below 50, and/or extremely limited verbal communication.

Importantly, the researchers were well aware of the problems with IQ testing in this population. Ninety-six percent of respondents agreed that people with profound autism can struggle to complete IQ assessments. There was considerable disagreement over what IQ cutoff should be used, but only 32 percent agreed that IQ should be excluded from the definition altogether. The final definition therefore retained severe cognitive impairment as one pathway alongside minimal verbal ability.

We should absolutely protect nonspeaking people from being wrongly presumed intellectually disabled. But we should not accomplish that by making people with genuine, severe intellectual disability less visible. Some people with autism genuinely have intellectual disability. Recognizing that reality does not diminish the competence or potential of nonspeaking people whose cognitive abilities may have been underestimated.

"Presuming competence" is a principle for how we treat and communicate with someone. It is not a determination that the person does not have an intellectual disability.

There is another tension here that deserves consideration. We are increasingly hearing that many nonspeaking autistic people have sophisticated language and cognitive abilities that they express through spelling, typing, AAC, or other forms of communication. I am not here to debate those claims.

However, if we accept that a nonspeaking person is independently expressing complex thoughts, feelings, academic knowledge, or written language through another modality, then that communication should matter. The fact that the words do not come out of the person’s mouth should not, by itself, make their autism more “profound.”

At the same time, someone with more spoken language may have severe intellectual disability, extremely low adaptive functioning, profound behavioral and safety challenges, and require lifelong 24-hour care.

Why should the first person have a clearer pathway into profound autism than the second?

There is no one in the autism community who fights harder for caregivers of people with severe and profound autism than Jackie Kancir. Her commitment to making caregivers and their children visible is unparalleled.

I spent time with Jackie’s daughter, Jadyne, during NCSA’s Washington, D.C. trip last year. She has a bit more spoken language than many people I have met with severe or profound autism. She also has significant communication/articulation challenges that leave her extremely vulnerable and difficult to understand, even with AAC assistance.

Whether Jadyne meets IACC’s new definition may now depend on how broadly “limited ability to engage in flexible, reciprocal, or generative communication” is interpreted.

Yet there is no ambiguity about the severity of her disability or the intensity of her lifelong support needs.

If someone like Jadyne has profound adaptive impairment, requires lifelong supervision, and has a genuine intellectual disability, should her place within “profound autism” depend on whether her communication is judged limited enough?

That should concern us.

The strongest consensus in the Siegel study was actually around something other than IQ or language. There was 97 percent agreement that people with profound autism require adult support for basic needs and 24/7 access to an adult for safety. There was also 97 percent agreement that adaptive functioning is significantly below age expectations. The authors described the need for adult support as a core defining feature of profound autism.

Perhaps that is where our main focus should be.

Communication matters. Cognition matters. Presuming competence matters. But so do adaptive functioning, safety, independence, behavior, and the intensity and permanence of lifelong support.

Profound autism was created because people with the greatest disabilities were becoming nearly invisible within an autism spectrum that had grown extraordinarily broad.

We should not solve one problem of exclusion by creating another.

If a narrowed definition of profound autism leaves profoundly disabled people with intellectual disability outside the very category created to make their needs visible, then the definition needs more work.

The definition of "profound autism" was always AND/OR Intellectual Disability. It did not need to be removed from the definition.

Sincerely and respectully submitted,

Cyndi Wall - Aliesmom

09/05/2026

Today is the International Day of Charity.

For too many families affected by severe autism, finding appropriate care and services means hearing the same answers over and over:

“Too severe.”

“Not a good fit.”

“We can’t meet their needs.”

Denial should not be the default.

People with severe autism, including those with significant cognitive and functional impairments and the greatest support needs, deserve access to specialized care and services equipped to meet their needs.

NCSA works to bring these realities to the people and institutions with the power to change them. We advocate for recognition, policy, and solutions that address the needs of people with severe autism and the families who care for them.

This work depends on charitable support.

On this International Day of Charity, your gift helps NCSA continue fighting for families who have too often been excluded from systems that were supposed to serve them.

If NCSA’s mission matters to you, please consider making a donation today.

Tap the fundraiser button or visit NCSAutism.org/donate to support our work.

09/04/2026

📣 ALL CALL! 📣The National Grasssroots Network has exploded over the past two years, and it’s time for a major leadership drive to support the incredible foundation laid by the original pioneers. NCSA’s Legal & Policy Fellow Cristina Gaudio, starting her second year with NCSA 🎉, is leading this massive effort.

One of our strongest state chapters started with a mother who did not think she was qualified to lead a state.

She said yes anyway. A year later, she told us she had never felt more empowered in her life. When life called her elsewhere, the chapter she had skillfully built carried on without missing a step, and today it’s nipping at the heels for the NJ Chapter title, who took home the award from D.C. for 2026 Best Chapter of the Year.

That is how the NCSA grassroots network grows: one person in one state deciding to lead and others coming alongside to effect meaningful change at the state and local levels.

Our state chapters set their own priorities. Some are pushing for caregiver respite. Some are pushing for police training. New Jersey has passed multiple group home safety bills. Others are tackling restraint in schools and the housing shortage.

State chairs are not expected to work alone. NCSA provides advanced advocacy software, communication tools, a monthly virtual meeting with chairs from across the nation, and the backing of a national organization who takes your concerns seriously, at no cost to you. Plan on ten hours a month or less. Travel is not required.

Our chairs are parents, siblings, BCBAs, social workers, and others who came with a skill and a reason. No CV. No government experience required. No polish required. Everyone brings something unique to the table. That’s what makes it work so well.

A state chair leads the chapter. A leadership team makes it last.

Our most effective chapters share a structure. Each role carries one piece of the work, so no single volunteer carries all of it. Here are some examples of roles in various chapters:

🥇 Chair sets the chapter's direction, runs its meetings, selects his/her team, and represents the state in the national network as a voting member of the NCSA Policy Committee, which provides the NCSA Board of Directors guidance on official position statements. The Chair is most often the public face for NCSA at the state level.

🥈 Vice chair or co-chair. Shares the chair’s load and steps in when the chair cannot. Chairs choose the arrangement that fits them. This is a crucial role for chapter sustainability. If a chair needs to move onto different ventures, a vice or co-chair should be ready and able to step up into the role of the chair.

🏛️ Legislative director. Tracks bills, builds relationships with lawmakers, testifies at state hearings, and leads the chapter's state campaigns. Works closely with NCSA’s Legal & Policy Fellow, Government Affairs Coordinator, and/or Executive Director to utilize the power of our Quorum software.

🏘️ Long-term care director. Communicates with the state adult protection service, protection and advocacy service, human rights committee, provider agencies, ICFs, and group home directors. Covers residential services, group home safety, and adult care.

📚 Special education director. Communicates with the state special education department, organizations offering IEP training or free advocacy, and the state early intervention department. Covers restraint, seclusion, 504, IDEA, IEP advocacy, and placement in schools.

🏥 Public benefits director. Communicates with the state LTSS director, disability department / regional centers, ombudsman, and Medicaid administrators. Covers Medicaid waivers, respite, and eligibility.

🎟️ Outreach director. Manages cross-organizational collaboration, member recruitment, mixers, and virtual meetups.

🎤 Communications director. Manages newsletters, social media, and the chapter's public presence. Works closely with NCSA’s Executive Director for press engagement and utilizing our Meltwater tools. May serve as the public face for the press, in lieu of the state chair, at the chair’s discretion.

💻 Technical director. Keeps the chapter's tools, data, and accounts in order. Works closely with NCSA’s Executive Director for Microsoft software needs and troubleshooting.

👩🏽‍🔬👨🏻‍⚖️👩🏼‍⚕️👮🏼‍♂️👩🏼‍🏫👨🏾‍🚒🧑🏻‍💼Scientific and policy advisory boards. Clinicians, researchers, attorneys, developers, administrators, teachers, first responders, and other experts who advise on positions and testimony.

No chapter fills every seat on day one. Not all chapters have a need for every role. Most begin with a chair who finds one or two partners, then grow as members find the role that fits their skill. The strongest chapters meet virtually at least once a month. Smaller states add in-person mixers; larger states lean on virtual gatherings. Both work.

Every role is volunteer and remote, operating under NCSA's nonprofit status with national tools and the monthly chair meeting behind it. If you bring a skill a chapter has not thought to ask for, tell us. Most chapters will create a role around it.

If you are ready to chair a chapter in your state, or to serve on a state leadership team, apply today. Apply for any and all roles you’d like. If it’s already filled, we can always discuss alternative state leadership roles that value your unique skills and interest.

👉🏼 Apply today: NCSAutism.org/join-the-team
Select State Leadership
Click Apply for a State Role

📩 Questions? Email [email protected]

Apply for a volunteer national or state leadership role with NCSA and help ensure the most severely affected are seen, heard, and served.

09/04/2026

Thank you, Autism Science Foundation, for these weekly digestible updates on science advancements. NCSA is diligently working behind the scenes to infuse greater understanding and support for caregivers. We know many of you feel you’re treading water; please know we hear you, and we’re putting all we have into finding ways to pull you out of the water. Meanwhile, we encourage each and every one of you to find another caregiver, even one, someone who understands what a 2am on a Wednesday looks like for you because they live it, too. We learn the buddy system in kindergarten. U.S. Seals, some of our fiercest warriors, get assigned a swim buddy. It’s time for caregivers to buddy up. Tag one of your buddies below. Don’t have one? Comment and let the community know. See someone who needs another caregiver to buddy up with, offer to be theirs. Help *is* coming, but we’re not here to sell fairy tales that it’s coming quickly. You’ve already carried too much too long on your own. Commit TODAY to finding even one other caregiver to keep getting through this wild ride together.