The exponential increase in the autism caseload in the California Developmental Services system, which is limited to cases of autism with substantial developmental disability.

On Thursday, September 12, 2024, the New Jersey chapter of the National Council for Severe Autism (NCSA) held its inaugural in-person mixer. The event was marked by a palpable sense of energy and excitement. Parents of individuals with profound autism from across New Jersey gathered alongside experts in the field to unite with the goal of advancing policy in critical areas and effecting actionable change.

What’s a grassroots network anyway? How can it help me? These are valid questions. Let’s talk about it.

Jail is not the place for someone with developmental disabilities, not anywhere, and certainly not in Tennessee. While most the news coverage on Jillian’s law is referencing the challenges in staffing and facility availability, none are discussing the problem of those individuals who are refused care by hospitals even when beds and staffing are available.

In this new role, Kancir aims to foster authentic recognition of the disparities faced by the severe autism community and partner with other groups to break access barriers, fill service gaps, and enhance the overall quality of life for individuals with severe autism and related disorders.

NCSA recommends the IACC authorize a report on autism caregiver burden across the lifespan, including specific analysis for the profound autism population. Concerns should include caregiver physical health, mental health, financial stability, educational and vocational opportunities, food and housing security, and overall quality of life. The report should include a strategic plan outlining specific solutions to secure the well-being of autism family caregivers.

NCSA joined IDD healthcare leaders in Chicago last week to challenge the status quo of antiquated, siloed health systems – calling for a reimagining of specialized integrated multidisciplinary healthcare. NCSA Policy Director Jackie Kancir attended the One Voice Conference hosted by the American Academy of Developmental Medicine & Dentistry (AADMD).

As part of UCSF’s 2024 Developmental Disabilities Conference, Vikram Jaswal, Professor of Psychology at the University of Virginia, promotes facilitated communication.

People with I/DD will have more choices coming, in spite of the heavy campaigning of ad hominem attacks and fear-mongering false equivalencies in the name of disability “justice.”

NCSA president Jill Escher shares her experience advocating for severe/profound autism on Capitol Hill with four other fierce advocates.

Autism rates in the California DDS system have reach shocking new heights according to data released this week.

NCSA leaders helped write a new review paper highlighting some of the overarching issues affecting individuals and families affected by profound autism, and directed at pediatric clinicians. We thank in particular Dr. Lee Wachtel for leading this effort.

Amid the growing national autism crisis, the Autism CARES Act should be re-invented to address our most pressing needs and explicitly address objectives around profound autism.

NCSA comments in response to the NIMH’s call for comments on co-occurring conditions in autism.

“As difficult as the trip was, I know so many families have even more challenging situations. Many are no longer able to attend family events or venture into the community because of behaviors. In some cases, they are no longer invited or included.”

“We cannot have equity without development of waivers that consider the basic realities of profound autism. Our children have very different needs than the people opposing use of the term.”

The new memoir Girl Storm by Peg Kerswell reveals a hidden world where inclusion doesn’t apply.

“Essential Lexicon and Resource Guide” offers an overview of our I/DD system in an easy-to-access format.

With this proposal the NIH threatens to jump into a foreign moral universe detached from its core duties and in conflict with its congressional mandates and the urgent needs and desires of American citizens and taxpayers. We oppose it in the strongest terms possible.

“The ‘autism’ I see in general on TikTok is hardly recognizable to me. The misinformation being shared is becoming increasingly dangerous to the autistics with more profound needs.”

“If he moved in with me, not only would I live with constant danger and isolation, but I would also face financial and social ruin.”

“The volatility of the environment I grew up in permanently altered my brain…. The world does not seem to understand, nor care, that autism affects more than my brother. Autism has had a severe impact on how I grew up, and the mental health issues I will have to face for the rest of my life.” First of a two-part series.

The family was incredibly lucky that Sandhya was home and outside; that the fire did not start at night while the family slept ("It would have likely been fatal," she said).

When disaster strikes, "sometimes, the outcome is senselessly tragic, forever altering the quality of life for the entire family unit. The September 26th Project is dedicated to raising awareness about emergency preparedness for all families."

NCSA submitted the following public comment to the federal Interagency Autism Coordinating Committee for consideration at its October 11, 2023 meeting.