Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.
2024 NCSA Webinar Series - Register
Ending Systemic Discrimination Against Severe and Profound Autism
These handouts address the widespread crisis of discrimination against severe and profound autism across the disability landscape: including Medicaid HCBS, housing, research, and medical care. Please download them and use them as may be helpful in local, state or national efforts.
NCSA Blog
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.
The story of one mother’s difficult decision to place her son in a residential program
A young woman is suffering in a group home. Her mother makes an appeal to Kentuckians who have adult loved ones with severe and profound autism.
Letter by Dawn Kovacovich to the President’s Committee for People with Intellectual Disabilities (PCPID) points out the committee’s discrimination against those with the most severe cognitive disabilities.
“While everyone “celebrates” autism, no one is coming up with desperately needed solutions for the adults who are most severely affected.” By Alicia Mesa
“It profoundly disturbs me that choices are limited for those who have the greatest disabilities.”
Amy Lutz argues that we must turn to objective science, not slickly edited documentary films, to test the agency of people with autism using facilitated communication.
While we embrace the progress of the profound autism label, we must be vigilant to ensure the term does not obscure the broader population clearly and often severely disabled by autism but who do not meet criteria for "profound" — or be used to trivialize the skyrocketing rates of autism.
In an April 2023 TEDx talk, NCSA president Jill Escher counters the feel-goodism of Autism Awareness Month by highlighting five difficult truths about the rising national autism crisis.
“Autism can be shockingly expensive. Not just the therapies and schools and housing, but the everyday Tasmanian Devil-like damage for which there is no insurance or help.”
“Awareness of and advocacy for the realities of autism. We don’t need propaganda. We can educate without being preachy. We can advocate, telling our truths, while being kind to one another.”
Autism caseload in California’s Department of Developmental Services continue to soar, as of the end-of-2022 count.
NCSA Position Statements
NCSA has adopted the following positions on pressing issues facing our community.
Personal Safety and Abuse Prevention
Access to Appropriate Health Care and Crisis Care
Medicaid HCBS Residential Policies
Educational Placements
New! Language, Images and Depictions Concerning Severe Autism
NCSA Podcast
NCSA National Network
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NCSA on Facebook
NCSA is very active on Facebook, please follow us for news and updates.
September 26th Project
Learn about emergency preparedness
INSAR: Decreasing Severe Behaviors
Coming soon.
NCSA Film Series
Register here
NCSA YouTube Channel
Dozens of videos. Subscribe
Video: Act Now for Severe Autism
Learn more at Act Now for Severe Autism.
NCSA Webinars
2024 Archive
4/10/23 Insurance Coverage for Autism here
3/27/24 Seizures and Epilepsy in Severe Autism here
2/28/24 Discrimination by Design here
2/15/24 Autism’s Rising Rates here
2/8/24 Reauthorization of the CARES Act here
2023 Archive
11/8/23 Autism & Psychiatry: Guide to Navigating Treatment here
10/11/23 Chasing the Intact Mind here
9/13/23 Intro to State Advocacy here
3/14/23 The Case for Profound Autism here
2022 Archive
1/11/22 The Crisis in Crisis Care here
1/27/22 Supported Financial Planning here
2/17/22 ABLE Accounts here
3/11/22 Homeless by Design here
4/14/22 After Parents Are Gone: Building a Circle of Support here
9/23/22 Autism Family Safety here
2021 Archive
2/19/21 What’s Wrong With Facilitated Communication? here
3/25/21 NCSA Policy Summit here
4/27/21 Treating Challenging or Dangerous Behaviors, Part 1: Medical Support here
5/27/21 Treating Challenging or Dangerous Behaviors, Part 2: Insurance here
6/24/21 Treating Challenging or Dangerous Behaviors, Part 3: Behavioral and Sensory Support here.
8/26/21 Transition Plans here.
10/13/21 Reforming the DSM here
NCSA Newsletter
June 2019 here
August 2019 here
January 2020 here
March 2020 here
April 2020 here
June 2020 here
July 2020 here
August 2020 here
September 2020 here
October 2020 here
November 2020 here
December 2021 here
January 2021 here
February 2021 here
March 2021 here
April 2021 here
April 2021 Update here
May 2021 here
June 2021 here
July 2021 here
August 2021 here
September 2021 here
October 2021 here
November 2021 here
December 2021 Research Roundup here
January 2022 here
February 2022 here
March 2022 here
April 2022 here
April 2022 v2 here
April 2022 v3 here
May 2022 here
June 2022 here
July 2022 here
August 2022 (no newsletter)
September 2022 here
October 2022 here
October 2022 v2 here
November 2022 here
December 2022 here
2022 in Review here
January 2023 here
February 2023 here
March 2023 here
March 2023 (CDC) here
April 2023 here
May 2023 here
June/July 2023 here
August 2023 here
September 2023 here
October 2023 here
November 2023 here
December 2023 here