National Council on Severe Autism

04/28/2026

Case Report that showcases the need for healthcare providers to perform a thorough workup when tending to patients with severe autism and to facilitate caregiver involvement for better outcomes.

What causes a sudden onset of behaviors? For those unable to communicate symptoms, any common treatable condition can become a crisis quickly. In this case, a 36 year old nonverbal male with ASD had an earache that led to being admitted for severe agitation, SIBs, and aggression towards his family.

Doctors tried sedating him while they ran tests searching for the cause, but none of the heavy medications could keep him or the staff safe from himself. He ended up needing to be restrained. Still an ear exam wasn't safe to perform. With his caregiver bedside, the patient calmed and the doctor was finally able to perform an ear exam.

After treating the ear, the patient improved within 12 hours.

“Agitation in ASD patients requires a multidisciplinary approach that considers sensory, medical, and environmental factors."

Read case study here: https://pmc.ncbi.nlm.nih.gov/articles/PMC13108411/

Download ER Stabilization Protocols here: NCSAutism.org/hospital

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition often associated with communication barriers, sensory sensitivities, and behavioral challenges, including agitation. Identifying the underlying causes of acute agitation in ...

04/28/2026

Paid Study for Parents of 11-17 year old children

The Baylor Center for Disability and Flourishing at Baylor University is starting a new study about patience and wants to hear from parents.

The study is for parents who are raising a child with a developmental disability. Your child must be between 11 and 17 years old. This includes children with autism or an intellectual disability.

The study wants to learn:

What does patience look like when you are raising your child?
How does patience help you?
What makes patience hard?
The people doing this study want to find better ways to support parents.

What’s involved:

The survey takes about 45 minutes.
You will take the survey each spring, for 4 years. (2026 – 2029)
You will be paid for your time.
If you are interested in signing up or want to learn more, you can go to: disability.research.baylor.edu/patience.

Have questions?

Email: patience_disability@baylor.edu
Call: 254-710-3103

04/28/2026

Tomorrow! 4/28: IACC 9-5pm ET. Are you going to watch live?

Read IACC proposal and attachments: https://iacc.hhs.gov/meetings/iacc-meetings/2026/full-committee-meeting/april/

Watch Live VideoCast: https://videocast.nih.gov/watch/d12c5062-287f-11f1-82c0-124f0a52e769

04/27/2026

Tomorrow, April 28th, 2026, is the first meeting of the newly appointed Interagency Autism Coordinating Committee (IACC), after being postponed in March.

The IACC mission is to:

-Provide advice and recommendations to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
-Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
-Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research, services, and policy.

Recently, we announced a way for you to submit your public comments for the meeting.

This link provided has the link to the meeting, the agenda, and the business material attachments, as well as the public comments. There are mentions of elopement, profound autism, and many other topics you may be satisfied knowing are going to be discussed.

While the agenda itself only includes a brief summary of public input, the full set of public comments spans 539 pages. That alone sends a clear message that families, individuals, and advocates are showing up, and will continue to show up, to make their voices heard.

Link here:
https://iacc.hhs.gov/meetings/iacc-meetings/2026/full-committee-meeting/april/?fbclid=IwY2xjawRcyz5leHRuA2FlbQIxMABicmlkETFhN1RnSjZPUVFCT0lERk1Hc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgAB

04/25/2026

Do you know about catatonia?

Systematic Review: Catatonia in Autism and Neurodevelopmental Disorders: A Scoping Review for Advancing Identification, Practice, and Research (Trelles et al., Journal of the American Academy of Child & Adolescent Psychiatry, 2026)

“Catatonia in autism and other NDDs is underrecognized, causing delays in care and suboptimal outcomes.”

Key pathogenic factors:
• excitatory/inhibitory neurotransmitter imbalances
• neuroimmune dysregulation
• genetic vulnerabilities
• environmental exposures

https://www.jaacap.org/article/S0890-8567(26)00118-8/fulltext

To systematically review the clinical presentation, prevalence, neurobiological mechanisms, and treatment strategies for catatonia in individuals with autism spectrum disorder (ASD) and related neurodevelopmental disorders (NDDs) to inform care and research.

04/25/2026

HELPipedia a free-to-use platform empowers individuals and families affected by special needs conditions to find qualified professionals, access critical resources, and connect with supportive communities — all from a single, easy-to-navigate website.

What HELPipedia Offers
• Comprehensive Condition Directory: In-depth pages for dozens of neurodevelopmental, genetic, neurological, sensory, behavioral, and chronic conditions — each with curated guidance, related professionals, and community resources.
• Professional Finder: A searchable directory of doctors, neurologists, therapists, psychologists, attorneys, advocates, educators, coaches, financial advisors, and many more — filterable by state, specialty, insurance, and more.
• State-by-State Resources: Localized information including state laws, financial benefits, support groups, advocacy organizations, health centers, and assessment providers for every U.S. state and Washington, D.C.
• Life-Stage Playbooks: Step-by-step guides for families at every stage — from Early Intervention (ages 0–3), through school age (IEP & 504 plans), transition to adulthood (18+, 21+), college, vocational training, military pathways, career planning, and aging (55+).
• Financial & Legal Resources: Guides to financial benefits, grants, tax credits, legal rights, ADA compliance, and IDEA compliance.
• Community & Events: Support groups, disability conferences, and opportunities to volunteer as a mentor or sponsor.
• AI-Powered Live Help: An intelligent chat assistant that helps users find relevant resources, professionals, and answers in real time.

Find trusted special needs professionals, organizations, support groups, and state-specific benefits in seconds. 100% free.

04/25/2026

TN families, NewsChannel 5 Nashville is asking: 𝑰𝒇 𝒚𝒐𝒖𝒓 𝒇𝒂𝒎𝒊𝒍𝒚 𝒅𝒐𝒆𝒔𝒏’𝒕 𝒓𝒆𝒄𝒆𝒊𝒗𝒆 𝒔𝒖𝒑𝒑𝒐𝒓𝒕 𝒇𝒐𝒓 𝒂 𝒍𝒐𝒗𝒆𝒅 𝒐𝒏𝒆 𝒘𝒊𝒕𝒉 𝒅𝒊𝒔𝒂𝒃𝒊𝒍𝒊𝒕𝒊𝒆𝒔, 𝒘𝒉𝒂𝒕 𝒉𝒂𝒔 𝒕𝒉𝒂𝒕 𝒎𝒆𝒂𝒏𝒕 𝒇𝒐𝒓 𝒚𝒐𝒖?

Key Takeaways in Article:
• In TN, only 1 in 11 people who need long-term disability supports receive some type of service through the state. 𝗧𝗵𝗲 𝗼𝘁𝗵𝗲𝗿 𝟭𝟬 𝗿𝗲𝗹𝘆 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗼𝗻 𝗳𝗮𝗺𝗶𝗹𝘆, 𝗼𝗿 𝗴𝗼 𝘄𝗶𝘁𝗵𝗼𝘂𝘁 𝘁𝗵𝗲 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 𝘁𝗵𝗲𝘆 𝗻𝗲𝗲𝗱.
• Of an estimated 160,000 adults with developmental disabilities in TN, only about 15,000 people with developmental disabilities get long-term daily support for their needs, which is only about 𝟵% 𝗼𝗳 𝘁𝗵𝗲 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗵𝗼 𝗻𝗲𝗲𝗱 𝗶𝘁.

📩 TN families may respond to Hannah at: Hannah.McDonald@NewsChannel5.com

When support systems fall short for adults with intellectual disabilities, families are often left to find solutions for problems that do not always show up clearly in the data.

04/25/2026

04/24/2026

In their latest three part series, Undivided: Supporting Parents Raising Kids with Disabilities consulted seven experts, including NCSA's ED Jackie Kancir, to explore stimming across the spectrum. They went beyond the generalized idea that stimming is just something to passively leave be.

What is stimming? Can it be used as an effective tool to help with learning and coping? Can stims be harmful, and what can be done if they are? And lots more! Share this extensive resource with your child's educators.

Explore all three parts for free in their resources library (requires free login to view)
• What Is Stimming?
https://undivided.io/resources/what-is-stimming-3816
• Stimming at School
https://undivided.io/resources/stimming-at-school-3818
• Should You Stop Your Child's Stimming?
https://undivided.io/resources/should-you-stop-your-childs-stimming-what-parents-need-to-know-3817

Excerpt:
Kancir adds, “When I first started having these conversations, the teachers said, ‘We’re not seeing these behaviors yet in school.’ And I said, ‘Great, hopefully you never do. But if you do, I want you to know how to respond to this so that you’re not instinctively reacting.’ How do you safely back away without harming that individual and then at the same time be working to de-escalate them? Those are conversations we have to be more willing to openly have."

Understand the nuances of stimming, how it relates to children with autism, and how parents can adopt a neurodiversity-affirming approach.

04/24/2026

The Cambridge University paper on the "Plural Autisms" by Paul Whiteley et al is presently open access. We don't know for how long, but if you've been locked behind a paywall, now is your opportunity to access it in its entirety.

_________________________
Whiteley P, Carr K, Shattock P, et al. From autism to the plural ‘autisms’: evidence from differing aetiologies, developmental trajectories and symptom intensity combinations. The British Journal of Psychiatry. 2025;227(1):492-498.

https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/from-autism-to-the-plural-autisms-evidence-from-differing-aetiologies-developmental-trajectories-and-symptom-intensity-combinations/4D9B0B35DCF03FDBA4E001F7DC9B02D6

From autism to the plural ‘autisms’: evidence from differing aetiologies, developmental trajectories and symptom intensity combinations - Volume 227 Issue 1