AutismLand 2021 in 5 Words: So, So Sick of It

Severe autism families were not shy this past year, and here’s what they had to say.

Autism families have spoken out, and they are not happy. (Stock image).

By Jill Escher

I’m grateful that in my role as president of National Council on Severe Autism that I’ve been able to connect with thousands of families and professionals in AutismLand about their lives, worries and hopes. And based on what I’ve heard, I think I can sum up 2021 pretty easily, in just five words: so, so sick of it.

Sick of making desperate calls for help, and being told there is nowhere to go.

Sick of the chaos, repair bills, therapy bills, medical bills, marital strife, isolation, the bruises.

Sick of not sleeping.

Sick of a medical system that just doesn’t know what to do with our kids, and a mental health crisis system that says “sorry, we don’t serve autism.”

Sick of getting little support through the pandemic.

Sick of insurance companies that deny treatment for extreme, destructive, and deadly behaviors as not medically necessary.

Sick of knowing that a system that pays staff minimum wage for difficult and demanding jobs is set up to fail.

Sick of hearing their child’s overwhelming neurodevelopmental impairment is just “neurodiversity.”

Sick of reading news stories that repeat ad nauseam that the skyrocketing rate of autism — even limited to severe autism — is merely due to awareness and diagnostic factors, and of seeing that autism now affects about 1 in 44 U.S. children and more than 10% of boys in parts of New Jersey, but that “we must have not noticed this before.”

So, so sick of the anti-vaxxers.

Sick of disability rights militants who work to axe residential and long-term care programs for the most severely disabled Americans under the pretext of advancing their civil rights. Sick of same who de-fund non-competitive employment options, leaving severely autistic adults with zero ability to access employment, limiting their adult lives to mere babysitting, at best.

Sick of the fantasies about autism.

Sick of screams, the broken iPads, the clogged toilets.

Sick of online activists who blame parents for their children’s extreme behaviors, who purport to speak on behalf of our children, who seek to quash realistic images of severe autism online.

Sick of a diagnostic scheme that lumps together articulate law school graduates with mild social eccentricities, Elon Musk, and successful celebrities with our nonverbal adults who function at a preschool level.

Sick of the idea that autism is “gift,” a “different way of being in the world,” or merely a social construct. As much as we adore our children, their neurobiological abnormalities which render them helpless and dependent are hardly gifts or social artifacts.

Sick of the stories of neglect and abuse in group homes and community programs.

Sick of an antiquated system that offers no roadmap for families, leaving them fend for themselves, with only the very wealthiest having hope of creating quality care programs.

Sick of a research agenda that has produced little of consequence to help in the most acute areas of need, such as severe behaviors and long-term care.

Sick of the snake-oil salesmen who prey on desperate families.

Sick of hearing about the importance of “community-based” housing but seeing zero housing vouchers available for our severe kids.

So, so sick of panicking about what will happen to our children when we die, while mainstream autism advocacy seems fixated on trivial matters, or appeasing strident self-advocates.

Now, some will say this is all too bleak, while others will say I’ve only touched the tip of the iceberg. And while I apologize for the mood of despair, I must say that for better of worse, this captures a big slice of reality you’ve shared.

All we can do is march forward, and I know that in 2022 we can make real progress — we are already seeing the pendulum swinging back toward sanity, for example with respect to diagnostic categories, and more attention to the research needs for severe autism. The future of autism, the future for our beloved children and the growing numbers who will follow, will depend on your true stories — thanks for shouting out to NCSA during 2021, and let’s look forward to a 2022 filled with realistic, mature, and fully informed discourse around autism.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

Lancet Report: Momentum builds toward breaking up the autism spectrum

Dear NCSA community, 

In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD." 

This galactic overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, and research.

We are hardly the only voices decrying the DSM-5's nonsensical scheme. And today a prestigious commission from The Lancet endorsed the use of the term “profound autism” to distinguish and support individuals who have high dependency needs and are likely to need 24-hour care throughout their lives. 

Below are commentaries on this direction from NCSA board members Alison Singer, Amy Lutz and Jill Escher.

We are excited to see a larger movement toward a diagnostic scheme that reflects the realities and needs of this population, which includes some of the most devastatingly disabled patients in the entire field of psychiatry — and who must no longer be hidden in a category increasingly associated with "differences" and "strengths."

—NCSA

Labels can harm, but they also can help: See ‘profound autism’
From Stat News

A Lancet Commission report sets out priorities for autism research and practice, including a new designation for “profound autism.”

By Alison Singer

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions....

This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."... Read more


Lancet Commission Calls for New Category: "Profound Autism"

Pressure mounts to split the broad autism diagnosis created by the DSM-5.

By Amy Lutz, in Psychology Today

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”... Read more

Podcast interview calls out absurdity of over-broad autism spectrum

Thanks to Mary Barbera for hosting NCSA President Jill Escher on her latest podcast episode. In addition to the failings of autism diagnostics they discuss new directions for autism research, exponentially increasing autism rates, NCSA, and national autism policy (or lack thereof). Listen in

Have an opinion about breaking up the autism spectrum? Join the conversation on NCSA's very active Facebook page.

See NCSA's position statement on the need for categorical recognition of severe autism in the DSM.