A Podcast Is Born: Welcome to Autism Confidential

NCSA has launched Autism Confidential, a podcast that shines a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from NCSA as they take on the hardest questions of autism with leading thinkers and doers.

Find it on Apple here

Find it on Spotify here

Find it (with video) on YouTube here

Tune into the trailer episode:

Episode 1 - Introducing ... Autism Confidential!

Listen on Apple Podcasts

Autism Confidential is the new podcast sponsored by the National Council on Severe Autism. We focus on the topics of importance to those impacted by severe autism, including policy, research, treatment and services.
Highlights from this episode:
• Autism Confidential is a community effort, hosted by leaders from NCSA. Your introductory hosts are Jill Escher, president, and Amy Lutz, vice president
• We will focus on topics that are under-represented and ignored in autism media
• We will tackle difficult issues with honesty, and also connect with those outside our community
• Have ideas for episodes or speakers? Please email us at info@ncsautism.org
• Interested in becoming a sponsor? Please email us at info@ncsautism.org

NCSA Grassroots Network Targets State Policy

Thanks to its nascent Grassroots Network and its Policy Committee, NCSA has been increasing its focus on state-level policies that affect individuals and families with severe forms of autism. Two recent examples come from California and Tennessee.

In California NCSA joined other disability organizations in successfully modifying an extreme “supported decisionmaking” bill drafted by the ACLU that threatened the integrity of conservatorships in several ways (AB1663). Thanks to our efforts and those of our colleagues the bill was radically amended to remove its most problematic provisions, such as reduction of the “best interests” standard and an onerous proposed “Conservatorship Diversion Program.” You can read NCSA’s letter to the CA Assembly Judiciary Committee here.

In Tennessee, NCSA joined in opposing a bill intended to criminalize aggressive behaviors by special education students. The author of the bill is now in contact with a member of our Policy Committee to revisit the bill. You can read NCSA’s TN letter here.

Our Nation Grassroots Network remains in the process of forming — there’s still time to sign up! Please visit here.

NCSA Launches State-Based Resources List

NCSA is pleased to announced the debut of its state-based nonprofit resources list. Crowdsourced from our Facebook page, it features nonprofits that serve individuals with severe autism, whether in modest or grand fashion.

Please note our list is crowd-sourced and not professionally vetted. Inclusion does not imply endorsement, and omission does not imply any sort of disapproval.

To visit a list for a particular state, please visit the page here and scroll down to that state.

For more general and national nonprofits, please click here.

Want to add a nonprofit to the list? Please email us at info@ncsautism.org.

Selected IACC Public Comments, January 19, 2022 Meeting

[Public comments to the Interagency Autism Coordinating Committee are public record. Comments submitted for the January 19, 2022 meeting can be found here.]

Lori Kay

As the parent of an adult son who has moderate/severe autism, there is a great need to provide services and housing to people like him. Services are currently directed at the mild or higher functioning population and it is almost impossible to find adequate day programs and residential settings for those with greater needs.

Lori and Alex Kay

On behalf of my son, who is profoundly affected by autism, my husband and I would like to advocate for the autism label to be changed to “Profound autism” for those like my son who requires 24 hour per day supervision and help with all daily life skills and is minimally verbal. We need research to focus on both preventing this type of autism and curing it. He needs supports which are entirely different than the supports he would need if he was “high functioning". Resources must be directed to this type of autism.

Jane McCready

I am worried that the autism debate is being dominated by the most high functioning (level 1) autistic voices, to the detriment of profoundly (level 3) autistic voices such as my own son's. To add to the worry, those same autistic voices are insisting that only autistic folk can speak with authority on autism, meaning my boy's voice is twice lost: once because he can only communicate at a basic level, and twice because his mum - and main lifelong/legal advocate - is being pushed off the platform by a relatively privileged autism 'elite'. In no other disability would the arguably least needy be taken as the voice for all. It needs bodies such as the IACC to stop kowtowing to 'Twitter autism' and start standing up for more severe, real-world autism.

John Saito

I support the proposal to create a separate DSM category for "severe" or "profound" Autism as called for by the Lancet Commission and NCSA.org. It is my hope that service providers, policymakers and lawmakers will use this new category to craft targeted goals, funding, program planning and performance metrics for this high-need group.

My daughter has profound autism. She requires 24/7 caregiving, and is at constant risk of self-injurious and physically aggressive behavior. She has been unable to develop a sense of personal safety or hygiene despite all our efforts. She is incapable of communicating with anyone other than with caregivers who have spent years with her.

Unfortunately, all of her public service and support programs seem more geared toward those with some form of higher-functioning ASD. It has been a struggle to secure items as basic as appropriate clothing, safe home modifications, and in-school services such as behavior intervention and communication support. In terms of residential care and out-of-home day programs, none of the service providers in our state are willing or able to take on the challenges of the severely autistic like my daughter.

While the creation of a DSM category specific to the profoundly autistic does not directly address the problems they face, it does force us to acknowledge that they have distinct needs, and (I suspect) are decidedly underserved by today's policies and programs.

Recognizing there is a problem is the first step toward solving it.

Cynthia Reed

The housing and medical needs for people with severe Autism continue to grow as this population ages. Is IACC research, policy and awareness efforts focused on defining the housing and medical needs accurately? IACC's work should provoke states address these needs and to promote the expansion of housing options and training for medical professionals to meet the needs of this complex population. The work of this committee must inform states' regulations for direct services to provide the most appropriate services.

Jill Escher, National Council on Severe Autism

President NCSAutism.org

Request for IACC to carve out specific recommendations regarding U.S. population disabled by profound autism

The IACC is congressionally mandated to advise the Secretary of HHS on matters regarding autism in the United States. Pursuant to statute, these matters include, among others, research on neurobiology, genetics and epigenetics, neurobehavior, causes (including possible environmental causes), prevention, services, supports, intervention, and treatment of ASD.

There is broad consensus among researchers and clinicians that "autism" is not a single disorder but rather a constellation of different impairments with varying intensities and functional capacities. Unsurprisingly, we see growing support for formally separating out subgroups in order to more accurately reflect clinical realities, improve validity of research, and facilitate identification of treatments, services and support.

In particular, the label of "profound autism" identifies a set of patients who suffer intellectual disability and such poor adaptive functioning that they require 24/7 support. This group likely exceeds one-third, and perhaps reaches nearly one half, of the autism population. According to CDC data, as well as data available from states such as California, U.S. autism rates continue to increase. Nearly 60% of children with autism have intellectual disabilities or borderline intellectual disabilities.

We urge the IACC to specifically attend to the needs of the profound autism population, needs which can diverge radically from others having ASD, particularly those who have the capacity for articulate speech, self-advocacy, and self-care.

As this body undertakes its congressionally mandated duty to advise the HHS Secretary regarding specified matters, we urge that it explicitly and intentionally identify research and activities targeted to the realities of profound autism. As mentioned above, pursuant to statute this should include, among others:

• neurobiology

• genetics and epigenetics

• neurobehavior

• causes (including possible environmental causes)

• prevention

• services

• supports

• intervention

• treatment

  In recent years, several papers have been published pointing out the woeful dearth of research on this population. As one group of researchers wrote, “Those with intellectual disability or minimal verbal ability are often systematically excluded from research on ASD,” resulting in “limited applicability to people who may need the most support.” Greater attention to the unique characteristics of profound autism will lead to greater advances in science and society.

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We also urge this committee to add additional public members who are parents of individuals with profound autism. Having strong representation for profound autism “which is notably lacking in the current IACC” is the best way to ensure that appropriate recommendations are made about those who have the least voice and most acute needs.

Thank you for your consideration.