Another rug bites the dust: the collateral damage of severe autism

The daily tumult of autism can discombobulate a home and drain a bank account.

By Jill Escher

Where did all my kitchen rugs go? It’s 3.20 in the morning and as usual, I’m awake. Not by choice but because, like clockwork, my sweet, nonverbal 18 year-old son with autism woke at 3 and started running, some might say rampaging, around the house. Boom, clomp clomp, tap tap tap, whoosh door opens, slam door closes, ugh.

I pat around my nightstand, reluctantly find my glasses, and head downstairs, not knowing what mischief may have transpired over the past 20 minutes. These wee-hour melees can be a bit like a suspense scene in a not-very-scary horror movie. Open the door… what will we see… probably not a severed head… but….

And there it is. My kitchen rugs are gone.

Jonny’s sitting at the kitchen table with a big grin and four iPhone 3GS’s splayed out before him. Shredded parmesan, once neatly bagged in the still-open fridge, is strewn over the table and floor, as if some yellow snow had fallen from the light fixture. With a well chewed pink toothbrush he taps at his iPhones, all synced to that 1979 tune, My Sharona.

Well, I'm happy he's so happy, but... my half-awake head buzzes, “Where are my rugs rugs, rugs rugs rugs, where did they go go, go go go? My Sharona.”

Over our north neighbor’s fence? Over the east one, aka the Corner of No Return? In the hot tub? It’s now 3.25 a.m. and I’m not exactly in the mood to treasure hunt floor coverings. And I can't help but wonder, Oh great god of missing rugs and whatnot, what reverse jackpots will the chaos of autism bring today?

"What reverse jackpots will the chaos of autism bring today?"

Depending on the mood, strength, and obsession du jour of the individual, the daily collateral damage of autism can be staggering. What amazes me is that these types of bills don't even show up when the experts talk about the costs of autism. (See, for example this 2015 study out of UC Davis, which did include lost productivity in addition to care and medical costs.) But we really need to talk about them because they can hugely impact families' quality of life and financial well being.

Just to illustrate how high this officially invisible toll of autism can be, a recent day at our home went like this. About $90 for a new sheet set to replace the otherwise perfect set he shredded (the 19th replacement of the year). A $120 iPad and iPhone repair bill. I do not exaggerate when I say that some weeks we’re a patient of Phone Doctor of San Jose every single day. Then add $240 for the housekeeper because I hardly have time for the Sisyphean task of cleaning up after my main man. In the late afternoon, add $225 for the handyman to replace the cracked casing of a door that had the misfortune to come between Jonny and his cherished iPhones. Finally, just as I looked forward to using them at the ice rink with my autistic daughter that evening, I found my new iPhone 7 earbuds torn into pieces, and poof! goes $29. In all, our daily autism-damage bill can easily top $500.

“In all, our daily autism-damage bill can easily top $500.”

Mattresses shredded. Upholstery ripped. Drywall bitten. Paint peeled. iPads shattered and iPhones dunked. Keys snapped off our piano and MacBooks. Window screens pushed out from their moorings. Down pillows punctured, with the nightmare of tiny feathers settling in all corners. Rugs denuded of their pile. Jackets ripped, shoes chewed, sweatpants with holes the size of grapefruit. Shutter slats chewed, askew and broken, giving our home a whiff of Haunted Mansion. The car’s seat gouged into a mini crater of foam.

To be abundantly clear, I don't blame my beloved son one bit. Not a speck of this Tasmanian Devilishness is his fault. You will not find a kinder or sweeter soul on this planet. He deserves the Nobel Peace Prize just for being him. It’s simply a matter of short-circuited brain wiring — blaming him would be like blaming someone for having seizures.

But understandable though it may be, no one can ignore a bill for material casualties easily exceeding $25,000 a year. If we counted all the child care, social services, schooling, therapeutics, and specialized camps and recreation, we’re talking an annual Autism Bill of many multiples of that. And that doesn't even encompass our Double Bill, as we have another child with nonverbal autism as well.

“No one can ignore a bill for material casualties easily exceeding $25,000 a year.”

For many families, massive expenses like these are just the start of their reverse lottery. Often parents must sacrifice a job, and the entire income stream that came with it, to care for children or adult children. They become unable to save for their own retirements as every excess penny from this dried up cash flow gets diverted to the never-ending Bill. The financial damage of autism can be devastating, even a one-way ticket to poverty. And now the situation seems poised to get worse.

I know, groan, these are not fun topics. Wouldn't you rather just binge watch "The Good Doctor," with its autistic genius protagonist? Perhaps instead of indulging in sugar-coated fantasies, turn your attention to the hundreds of thousands of families in our country living with harsh and often bank-draining realities of severe autism.

As I edit this blog I get a text from a friend. Her large autistic son just broke her bed, after recently breaking his own, which they had reinforced multiple times with heavy lumber and bolts, to no avail. Two beds dead. Two mattresses with mushed springs. Her Autism Bill of the day started with a whopper of about $2,000. Not to mention all the family's lost sleep and time she must devote to restoring habitability to her home.

Just before dawn, I spy my rugs over the north fence, alongside a pile of missing sheets and towels. Phew, no shopping today, just a retrieval mission. But then my gorgeous Jonny, skipping with his abundant energy and joy, darts into the front yard and yanks the rear windshield wiper off my car, breaking the arm. Ka-ching! And it’s only 6 a.m.

Jill Escher is President of the National Council on Severe Autism, Immediate Past President of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, and a housing provider to adults with autism and developmental disabilities. She is also a former lawyer and the mother of two children with nonverbal forms of autism. [A version of this post first appeared at the Autism Society San Francisco Bay Area blog.]

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.

NCSA Letter to Biden Campaign re Disability Policy

June 3, 2020

Dear Vice President Biden,

The National Council on Severe Autism (NCSA) read with interest the Biden campaign’s disability policy statement. We appreciate the campaign’s attention to the needs of disabled Americans.

NCSA is a voice for the disabled who have no voice — specifically, the growing population of Americans disabled by severe forms of autism. 

Severe autism is rapidly developing into one of our country’s greatest public health and public policy challenges — data suggests that at least 1% of all U.S. children now suffer from substantially disabling autism, in addition to another 1% who have the disability of autism but are considered higher functioning. California data show a 40-fold increase in cases of severe autism over the past 30 years (from 3,000 cases to 126,000 cases in the state today), an alarming fact mirroring trends across the country. 

Those with severe autism often have minimal language, low cognitive ability, severe functional impairments, and dangerous behaviors, including aggression, self-injury and property destruction. They typically need 24/7 care, for life, having little capacity to care for themselves or earn a living. Almost always they are found eligible for disability-based Supplemental Security Income as adults. The explosion in this population is overwhelming an outdated care system utterly unprepared to meet its extensive, intensive needs.

Though it was perhaps unintentional, the campaign’s disability agenda seems to exclude the urgent needs of the severe autism and intellectual disability population. We are writing to ask that the campaign be inclusive of this constituency and their families, and offer a few examples.

1. Guardianship. Individuals with significant intellectual disabilities and who lack the cognitive capacity to make informed decisions, including those with severe autism, need strong legal protections and advocates who will act in their best interests. Guardianship is a key protection for those who are most vulnerable to abuse, abandonment and exploitation. While guardianship should never be used to supplant the desires of people with disabilities who have the good fortune to have mental capacity, those without such capacity require strong legal representation and protection.

2.  Residential and Vocational Settings. NCSA believes all long-term supports, vocational opportunities, and housing decisions and funding must be person-centered, that is, based on specific individual needs, and not on any arbitrary one-size-fits-all policy. Medicaid funding should be applied based on person-centered plans, period. 

It should go without saying that a person-centered approach must include disability-supportive settings for those with intensive needs that cannot be served in the general community. For example, one cannot expect that an autistic young man who screams for 10 hours a day could live peacefully in an apartment complex, or that a young nonverbal aggressive woman who needs continuous supervision should be locked up with an aide inside a low-income studio unit, without access to specialty care or supervision to prevent physical and sexual abuse. 

As Together for Choice has explained, the clear fact is that many individuals with autism and intellectual disabilities require a higher standard of care, a fact recognized by the majority in the Olmstead decision. The federal and state government should focus on quality of programs and housing and whether they serve person-centered goals, not arbitrary metrics like size, type or location, metrics which only serve to de-fund programs appropriate for our most severely disabled citizens. The individual, not the government, should guide choice of HCBS setting, and the crucial option of the intermediate care facility for the developmentally disabled (ICF/DD). All viable options must be respected and preserved, particularly as the severe autism population continues to surge, far outstripping system capacity.

3.  Special Wages Under Section 14(c) of the Fair Labor Standards Act.  NCSA has written extensively about the need to retain non-competitive employment for those with severe disabilities who are incapable of engaging in competitive jobs. Work programs offering non-competitive employment such as 14(c) provide a critical option for many with cognitive disabilities. They provide purpose, community engagement, supervision, training, and friendship. Eliminating Section 14(c) would leave men and women with significant intellectual disabilities without jobs and cherished programs, a tragic compounding of our already overwhelming, unprecedented services crisis.

We are grateful to see the Biden campaign encompass such an urgent issue as disability policy. We do hope that going forward the needs of those with severe intellectual disability and autism will figure more prominently. We are happy to discuss these matters with you and your staff at your convenience.

With gratitude for your commitment to all disabled Americans,

/s/

Jill Escher
President

Prevalence of autism up in schools across the U.K.

Rate more than doubles in Northern Ireland, Scotland, England and Wales

By Jill Escher

A new report on autism in U.K. schools indicates sharp increases in prevalence rates over a nine-year period through 2019. The report saw autism rates climbing in all four countries of England, Wales, Scotland and Northern Ireland.

Northern Ireland had the highest prevalence throughout, reaching 3.20% of all students by 2018/19, more than double 1.41 nine years prior). The lowest rate in 2019 was 1.92% in Wales, a number that aligns with the rate seen in a recent study of U.S. children by the CDC. England, which has by far the largest population of schoolchildren (8,180,469 in 2019) had a rate of 2.25%, with Scotland seeing a slightly higher rate of 2.51%

The paper noted the data were based on consistent protocols for recording ASD. Every year on a specified date all pupils with special educational needs are identified by school personnel and by their type of needs, including “autism spectrum disorders.” These school census data now go back nine years. The pupils have undergone a formal process of assessment and received a statement of their special education needs. A formal diagnosis of ASD is not recorded in the census.

The four countries had some differences in recording disability categories, however. Scotland and Northern Ireland, all the types of special educational needs applicable to each pupil could be selected. However, in England, the most significant or primary need was ranked as ‘1’, with any secondary need ranked ‘2’. Wales had one special educational need recorded per pupils up to 2015/16, and then recorded all types of needs per pupil. A sharper increase in Wales’ autism prevalence was noted after this change in practice, though the rate still remained lower than in the other three countries.

Diagnostic substitution is unlikely to explain the increase. The author of the report, Roy McConkey, PhD, Emeritus Professor of Developmental Disabilities and formerly Professor Learning Disability, Institute of Nursing and Health Research at Ulster University, stated, “we have seen in the U.K. an overall rise in the number of pupils considered to have special educational needs and also with autism being identified as a co-morbidity alongside other developmental conditions and impairments.”

Data was not available to segregate cases by severity levels, and exercise that could have helped clarify some of the underlying trends. However, the reported noted a sharp increase in students with autism in special schools across the U.K., with the rate nearly doubling in England.

Though the report addressed potential administrative reason behind the increasing rates it ultimately could not identify the reasons for the full longitudinal growth or variation among the countries, but noted that “the rate of increase shows little sign of abating and may indeed be accelerating.”

Reference

McConkey R. The rise in the numbers of pupils identified by schools with autism spectrum disorder (ASD): a comparison of the four countries in the United Kingdom (2020).

An autism fact too horrible to discuss

The mother of a teenage daughter with nonverbal autism opens up about her extreme sexual vulnerabilities

Stock photo

By Meredith C.

Of all the things that are so f%#ked up about autism, how come we never hear about the one that’s the most f%#ked up of all?!

Pardon my language but I can’t help myself.

My 17 year-old daughter, I’ll call her Cathy, has autism. Not the “self-advocate” autism, or the “neurodiversity” autism, or the Daryl Hannah autism (whatever that was). Noooooooooooo. My Cathy has an autism that leaves her helpless, 100% defenseless.

Cathy is gorgeous, quite tall, with wavy bright blond hair and a face like a doll. If an actress were to play her in a movie I think Cameron Diaz would fit the part. But after that, no similarity. Cathy can’t talk, read, write, answer a phone, text, or understand a story. She can’t brush her hair or teeth, wipe herself after toileting, change her menstrual pad, or put on her clothes. If it’s freezing outside it wouldn’t occur to her to put on a coat. More than once she’s left the house totally naked.

I found NCSA because of this post on its website, A Sister’s Quest to End Sexual Abuse of the Severely Disabled. I was looking for information I could use to protect Cathy, because she is more vulnerable to sexual assault than almost anyone else in the world. Mothers like me suffer a sheer terror that rips our hearts into pieces.

If someone were to abduct her, she wouldn’t cry out, or fight back. She can’t say the word “No,” or other words. She would not be able to call us, or know to escape. If she were raped at a school or day program we wouldn’t know unless, like the girl in the NCSA blogpost, she came down with a sexually transmitted disease, or, God forbid, got pregnant. If we wanted to lodge a report or file a complaint with the police, she could not provide testimony or name the perpetrator, or be a witness on the stand.

At her recent IEP meeting I said my top priority was to define all the ways to make sure Cathy was never raped or otherwise assaulted, at school now or when she graduates. To me, everything else was secondary.

Well, that went nowhere. There were programs for intellectually disabled girls who could learn about sex, saying no, and reporting. And some about romantic relationships. But none of those apply to Cathy. It seems to me there are no real answers to ensure protection of our severely autistic females.

Forgive me for screaming bloody murder, but WHY ISN’T THIS ONE OF THE MOST IMPORTANT TOPICS IN AUTISM TODAY?

Realistically I think the only insurance against sexual abuse would be for me to keep her with me at all times. My husband and I are considering it (we are doing this now because of coronavirus), and fortunately I do not work. But Cathy also deserves a life without her mother (and I will pass away at some point anyway) — a SAFE life, free from any threat of sexual abuse. How are we going to make this happen for our severely autistic women? AND WHY ISN’T EVERYONE TALKING ABOUT THIS?! NO ONE HAS ANY ANSWERS!

Thank you NCSA for letting me share, and scream.

Meredith C is the pseudonym for a mother who lives in the Pacific Northwest. She and her husband have one child, a daughter with severe 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.

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New study shows sharply increasing numbers of adults with autism in SSI system

By Jill Escher

Over the past three decades, autism caseloads have increased dramatically across public programs, including special education, vocational rehabilitation, state developmental disability services, and Medicaid. This phenomenon has also been witnessed in the welfare program called Supplemental Security Income (SSI), which provides cash benefits to poor elderly people and people with severe disabilities who cannot earn a living: between 2004 and 2014, the proportion of children with autism surged from about 8% to nearly 21% of those with major mental disorders, the largest increase for any diagnostic group.

Now a new study has found that adults, age 18 and up, with autism also represent a growing share of SSI awards. Recipients with autism increased from 37,041 in 2005 to 158,105 in 2015, a 327% jump. The lead author was Kristy Anderson, who worked with Paul Shattuck, Ph.D of the A. J. Drexel Autism Institute in Philadelphia. The Drexel group is one of the few looking at crucial questions of economic and program burden posed by the growing population of adults with autism.

Under Social Security rules, eligibility for federal SSI payments — which for this group with autism averaged $6,527.40 per year in 2015, a sum which is often supplemented by state payments — depends on the applicant having a documented disability which prevents the individual from engaging in substantial gainful activity. The disability must have lasted or is expected to last a minimum of 12 months or result in death. The system is notoriously picky, and routinely blocks applicants who are seen to have any capacity for gainful work.

The study showed a steady increase in the number of SSI recipients with autism from 2005 to 2015, despite overall declines in total SSI awards given to adults with mental disorders. The study also found that total SSI payments to adults with autism amounted to nearly $1 billion in 2015, almost a $820 million increase from 2005 when adjusted to 2015 dollars.

Although the authors at one point tossed out a speculation — seen far too often in papers like this — that the striking autism caseload growth could perhaps be partly attributable to diagnostic shifts or “awareness,” the paper provided no evidence this could be the case. Indeed, SSI eligibility is a high bar, an objective standard based on carefully ascertained functional incapacity of the applicant, not on any amorphous diagnostic category. Most adults with autism had ASD listed as the primary impairment in both 2005 and 2015 (72.2% and 75.3%), suggesting that even co-occurring ID did not influence the categorization. In addition, while there was a decline of new awardees in the intellectual disability and other mental disorder categories, the authors noted that the magnitude of growth seen in autism far outstripped those decreases. Also the number of new awardees classified as having other mental disorders who were also identified as having ASD increased, from 1,037 to 2,169, or 109.2%. Indeed, the researchers themselves noted that diagnostic substitution or expansion was unlikely to explain the increase.

The researchers also found that in 2015, adults with ASD were generally younger (mean age of 21 years) and had a higher percentage of males (79.1%), compared with recipients with intellectual disability and other mental disorder, which is consistent with trends seen in numerous autism prevalence studies.

As background, a claimant may quality for SSI benefits under 11 categories of mental impairment:

• Neurocognitive disorders
• Schizophrenia spectrum and other psychotic disorders
• Depressive, bipolar, and related disorders
• Intellectual disorder
• Anxiety and obsessive-compulsive disorders
• Somatic symptom and related disorders
• Personality and impulse-control disorders
• Autism spectrum disorder
• Neurodevelopmental disorders
• Eating disorders
• Trauma- and stressor-related disorders

Autism was added in 2001. An adult with documented autism and intellectual disability would be counted in both groups.

In sum, this paper adds more evidence of the increasing U.S. population with incapacitating autism in need of lifespan supports. While the numbers for 2015 should be alone to sound the alarm bells, surely 2020’s numbers will bring even more devastating news. Because SSI provides only a drop in the bucket compared to overall financial and programmatic needs to support disabled autistic adults, the overall implications of this growth in serious mental disability are dire.

Jill Escher is president of National Council on Severe Autism, and founder of Escher Fund for Autism, which promotes research in non-genetic inheritance in autism and other neurodevelopmental disorders. Based in the San Francisco Bay Area, she is the mother of two children with idiopathic nonverbal forms of autism.

Reference:

Anderson KA, Hemmeter J, Rast JE, Roux AM, Shattuck PT. Trends in Supplemental Security Income Payments to Adults With Autism [published online ahead of print, 2020 Apr 8]. Psychiatr Serv. 2020;appips201900265. doi:10.1176/appi.ps.201900265

Related posts:

Autism researchers just threw you under the bus (2020)
CDC Study Estimates 2.2% of U.S. Adults Have Autism — Don’t Believe a Word of It (2020)
The torrential surge in autism continues unabated (2020)
1 in 54: Autism's Continuing Climb, with Dr. Walter Zahorodny (2020)
What the autism needs now is truth, sweet truth (2019)
‘Denial’: Serving Up Devastating Autism Truth With a Side of Dumdum (2019)
NeuroTribes: One Step Forward, Two Steps Back for Autism (2016)

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.

Autism researchers just threw you under the bus

A major new review, with a stamp of approval from Autism Speaks, denies any increase in autism. The autism community should be aghast at the incompetence.

By Jill Escher

In spite of overwhelming evidence of skyrocketing autism rates, a coterie of autism researchers just announced in a key and influential publication that there has been no actual increase in autism.

Nature is the crème de la crème of scientific journals. It is also an umbrella, publishing many other journals, including one called Nature Reviews Disease Primers (NRDP). These primers are highly respected in the scientific and medical fields and are often cited as gold-standard authority regarding a variety of diseases and disorders.

Cathy Lord, PhD, left, was lead author of a major review contending there has been no true increase in autism. Traolach Brugha, MD, middle, penned the section. Tom Frazier, MD, Chief Science Officer of Autism Speaks, right, was among those who signed off.

In January of this year, lead author Cathy Lord, PhD, and co-authors published the NRDP Primer on autism spectrum disorder (1). This Primer will be cited as reliable authority for years to come on many issues related to autism. It has a lot of outstanding content and I would actually recommend 90% of it.

But then, there’s the crackpot part denying that autism rates have increased. 

The paragraph acknowledges that “Many individuals and groups presume that rates of autism are increasing over time” (well, yeah), but then goes on to deny any evidence of a true increase, saying flatly that studies have “confirmed the lack of significant change in prevalence rates” over time.

Say what? On what planet?

Because actual data from planet Earth paints a cataclysmic picture. The latest report from the California Department of Developmental Services, for example, indicates its autism caseload (which is limited to developmental disability-level autism) has grown 4,000% from 1989 to 2020: from about 3,000 cases to about 126,000 (2), an eye-popping number far exceeding prior increases (3, 4). Heck, in my County of Santa Clara alone, DDS-eligible autism has soared from 147 cases in 1990 (5) to 4,505 today (2). These California data compare apples to apples, relying as they do on objective measures of mental and adaptive functioning. Though some small amount may relate to diagnostic shifts (4), eligibility criteria narrowed in 2003 and have not broadened to encompass milder cases.

Autism cases sufficiently severe to be included in California’s developmental disability system have skyrocketed, vastly outstripping population growth, from a few hundred births per year in the early 1980s to more than 7,200 births per year in 2014. For a recent prevalence analysis by the California Department of Public Health, see here.

And of course, the U.S. Centers for Disease Control has famously found steady increases in childhood prevalence, from 1 in 150 in 2000 to 1 in 54 in 2016 (6, 7), including an unprecedented 3% rate among New Jersey children (7, 8). A study in Atlanta found ID and CP rates fairly stable from 1996–2010, but ASD average annual prevalence increased 9.3% per year. The prevalence of ASD both with and without co-occurring ID increased (9), a trend widely seen in the literature (for example 6, 7, 11).

Outside the U.S., we’ve seen similar trends. In three regions of Canada, the estimated average annual percent increases in prevalence among children 2–14 years of age ranged from 9.7% to 14.6%. “[W]e cannot rule out the possibility of a true increase in incidence,” said the researchers (10). The prevalence of ASD in Western Australia was seen to increase by 11.9% per year, from 8 cases per 10,000 births in 1983 to 46 cases per 10,000 births in 1999. A rise in all types of ASD was seen and a “true increase in ASD cannot be ruled out,” said the authors (11). 

Finland saw an eight-fold increase in the incidence rates in children of diagnosed ASD born between 1987 and 1992 (12). In Israel, prevalence data indicated an increase from 1.2 per 1,000 in those born in 1986 to 3.6 per 1,000 in 2003 (13). A new report from Northern Ireland showed an increase from 1.2% in 2008 to 4.2% in 2019 of children identified with autism. Among boys, the prevalence was the stuff of nightmares, about 6.4% (14). Again, most studies that look find increases across all levels of autism. Moreover, this phenomenon of increasing prevalence is seen in many childhood neuropsychiatric disorders, not limited to ASD (for example, 15).

And that’s just a sampling of hundreds of such reports and studies. So what gives with the Primer? While it indicates that “All authors read and edited the full document,” it also says the epidemiology section was penned by Traolach S. Brugha, MD, an adult psychiatrist at University of Leicester, U.K., who has been an outspoken increase denier.

“The vast majority of epidemiological literature was simply ignored.”

Of the six papers cited in the Primer’s paragraph contending there has been no increase in autism (anywhere in the world, it seems), four were to Brugha’s own work, and none supported the claim. The vast majority of epidemiological literature was simply ignored.

Of the Brugha papers, one was irrelevant to the question (16). Another, a U.K. administrative report on various mental disorders, was based on a minuscule sample, acknowledged its own methodological shortcomings and stated, contrary to the Primer, that one cannot “rule out the possibility that the prevalence of ASD has increased” (17). The third suggested a .98% rate of suspected autism in a sample of people aged 16 and up in England (18), using experimental methods. Even if true, this rate falls far short of the nearly 2% rate now seen among U.S. children. Not to mention the 2.64% rate among Korean children (19), the 3% rate in New Jersey, or the 4.2% rate in Northern Ireland.

The Global Burden of Disease study (20), to which Brugha contributed, which surveyed 354 diseases, and on which the no-increase argument primarily relies, is so opaque one cannot ascertain the methodologies used, and was clearly not intended to show changes in autism prevalence over time in any identified regions or countries. The other U.K. report (21) found increasing autism rates among younger cohorts of children, again contradicting the assertion of no increase. Finally, a study on Swedish children (22) did not ascertain prevalence changes, but rather behavioral characteristics that are related to autism, over a constrained period of time. Indeed, a recent study in neighboring Denmark saw no sign of a plateau in increasing autism prevalence (23). 

So why would Autism Speaks' Chief Science Officer Tom Frazier, MD (not to mention other co-authors) have signed off on a section so cherry-picked and extravagantly misleading? I mean, how much higher do the ASD numbers have to be before the Ivory Tower sounds an alarm? Five percent of children? Ten? Armageddon? Perhaps Dr. Frazier — who is one of the nicest people I know, I should clarify — was unwilling to counter a colleague, was too busy to notice, or assented in a noble effort to help quell anti-vaccine sentiment. 

“Just because we’ve identified few of autism’s causes does not justify fabricating a false narrative of no increase.”

This motive, if true, has my sympathy, but the debunked vaccine theory has no bearing on the reality of the unrelenting ascent of serious, permanent brain dysfunction in our children. Just because we’ve identified few of autism’s causes does not justify fabricating a false narrative of no increase.

This is no obscure academic dispute. This Primer will be used by researchers, policymakers and media as authority for the proposition there has been no growth in autism. No crisis to address. No reason to seek non-genetic causes or pursue prevention. No reason to panic about our flood of dependent, mentally and functionally incapacitated adults biting the furniture and needing 24/7 care. Hey, autism’s always been here in these numbers, Maybe We Called It Something Else (though records are devoid such evidence), so Calm Down, Celebrate “Neurodiversity,” and Go Away. 

Autism’s increase — particularly the scorching surge in severe disability — is an urgent, foundational fact that should drive public communications, policy and research. But here a cloak is thrown over the truth. We in the autism community have been betrayed, and will be paying for this act of scientific misconduct for many years to come.

Jill Escher is president of National Council on Severe Autism, and founder of Escher Fund for Autism, which promotes research in non-genetic inheritance in autism and other neurodevelopmental disorders. Based in the San Francisco Bay Area, she is the mother of two children with idiopathic nonverbal forms of autism.

Related posts by Jill Escher:
CDC Study Estimates 2.2% of U.S. Adults Have Autism — Don’t Believe a Word of It (2020)
The torrential surge in autism continues unabated (2020)
1 in 54: Autism's Continuing Climb, with Dr. Walter Zahorodny (2020)
What the autism needs now is truth, sweet truth (2019)
‘Denial’: Serving Up Devastating Autism Truth With a Side of Dumdum (2019)
NeuroTribes: One Step Forward, Two Steps Back for Autism (2016)

References

(1) Lord C et al. Autism spectrum disorder. Nat Rev Dis Primers. 6:5 (2020). Paywalled at https://www.nature.com/articles/s41572-019-0138-4.

(2) State of California Department of Developmental Services. Quarterly Consumer Characteristics Report Index for the end of March 2020 (2020) (latest figure at nearly 126,000). The 3,000 caseload figure from 1989 is also from DDS data, see https://www.sfautismsociety.org/uploads/1/1/7/4/11747519/autism_rising_2015.pdf (2015).

(3) Nevison C et al. California Autism Prevalence Trends from 1931 to 2014 and Comparison to National ASD Data from IDEA and ADDM. J Autism Dev Disord. 48, 4103–4117 (2018) (prevalence of autism in the California Department of Developmental Services increased from 0.001% in the cohort born in 1931 to 1.2% among 5 year-olds born in 2012).

(4) Hertz-Picciotto I et al. The Rise in Autism and the Role of Age at Diagnosis. Epidemiology. 20(1), 84–90 (2009) (the incidence of autism rose 7- to 8-fold in California from the early 1990s through 2006. Changes in diagnostic criteria cannot fully explain the magnitude of the rise in autism).

(5) Autism Society San Francisco Bay Area, Autism by The Numbers, data from California Department of Developmental Services. Retrieved from https://www.sfautismsociety.org/sf-bay-area-autism-by-numbers.html.

(6) U.S. Centers for Disease Control. Website https://www.cdc.gov/ncbddd/autism/data.html.

(7) Maenner MJ, Shaw KA, Baio J, Washington A, Patrick M, DiRienzo M, Christensen DL, Wiggins LD, Pettygrove S, Andrews JG, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ 69:4;1–12 (2020).

(8) U.S. Centers for Disease Control. A Snapshot of Autism Spectrum Disorder in New Jersey (2020).  https://www.cdc.gov/ncbddd/autism/addm-community-report/new-jersey.html

(9) Van Naarden Braun K et al. Trends in the Prevalence of Autism Spectrum Disorder, Cerebral Palsy, Hearing Loss, Intellectual Disability, and Vision Impairment, Metropolitan Atlanta, 1991–2010. PLoS One. 2015; 10(4): e0124120 (2015).

(10) Ouellette-Kuntz H et al. The changing prevalence of autism in three regions of Canada. J Autism Dev Disord. 44, 120–136 (2014).

(11) Nassar N et al. Autism spectrum disorders in young children: effect of changes in diagnostic practices. Int J Epidemiol. 38(5), 1245–1254 (2009).

(12) Hinkka-Yli-Salomäki S. The incidence of diagnosed autism spectrum disorders in Finland. Nord J Psychiatry. 68, 472-480 (2014).

(13) Gal G et al. Time Trends in Reported Autism Spectrum Disorders in Israel, 1986–2005. J Autism Dev Disord. 42, 428–431 (2012).

(14) Rodgers H et al. The prevalence of autism (including Asperger syndrome) in school age children in Northern Ireland 2020. (2020) Retrieved from https://www.health-ni.gov.uk/publications/prevalence-autism-including-aspergers-syndrome-school-age-children-northern-ireland-2020.

(15) Atladottir HO et a. The increasing prevalence of reported diagnoses of childhood psychiatric disorders: a descriptive multinational comparison. Eur Child & Adolescent Psych. 24;173–183 (2015).

(16) Tromans S et al. The prevalence of autism spectrum disorders in adult psychiatric inpatients: a systematic review. Clin. Pract. Epidemiol. Ment. Health 14, 177–187 (2018).

(17) Brugha TS et al. Autism Spectrum Disorder, in McManus S, Bebbington P, Jenkins R, Brugha T. (eds.) Mental health and wellbeing in England: Adult Psychiatric Morbidity Survey 2014. Leeds: NHS Digital (2016). Retrieved from https://discovery.ucl.ac.uk/id/eprint/1518055/1/APMS%202014-full-rpt.pdf. (Based on “experimental statistics,” prevalence of adult autism estimated to be .8%, with a wide confidence interval, based on … 31 cases. Note that Brugha is content to cite to a report on 31 cases, while ignoring California data, now including 125,000 developmental disability level autism cases.)

(18) Brugha TS et al. Epidemiology of autism in adults across age groups and ability levels. Br. J. Psychiatry 209, 498–503 (2016).

(19) Kim YS et al. Prevalence of Autism Spectrum Disorders in a Total Population Sample. Am J Psychiatry. 9,  904-912 (2011).

(20) GBD 2017 Disease and Injury Incidence and Prevalence Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 354 diseases and injuries for 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet 392, 1789–1858 (2018). 

(21) Marcheselli F et al. Mental health of children and young people in England, 2017. NHS https://digital. nhs.uk/data-and-information/publications/statistical/ mental-health-of-children-and-young-people-inengland/2017/2017 (2018).

(22) Lundstrom S et al. Autism phenotype versus registered diagnosis in Swedish children: prevalence trends over 10 years in general population samples. BMJ 350, h1961 (2015).

(23) Schendel DE et al. Cumulative Incidence of Autism Into Adulthood for Birth Cohorts in Denmark, 1980-2012. JAMA. 320(17):1811-1813 (2018).

Appendix 1: Full list of NRDP Autism Spectrum Disorder authors

Catherine Lord1*, Traolach S. Brugha2, Tony Charman3, James Cusack4, Guillaume Dumas5, Thomas Frazier6, Emily J. H. Jones7, Rebecca M. Jones8,9, Andrew Pickles3, Matthew W. State10, Julie Lounds Taylor11 and Jeremy Veenstra VanderWeele12

1 Departments of Psychiatry and School of Education, University of California, Los Angeles, Los Angeles, CA, USA.
2 Department of Health Sciences, University of Leicester, Leicester, UK.
3 Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK.
4 Autistica, London, UK.
5 Institut Pasteur, UMR3571 CNRS, Université de Paris, Paris, France.
6 Autism Speaks, New York, NY, USA.
7 Centre for Brain & Cognitive Development, University of London, London, UK.
8 The Sackler Institute for Developmental Psychobiology, New York, NY, USA.
9 The Center for Autism and the Developing Brain, White Plains, NY, USA.
10 Department of Psychiatry, Langley Porter Psychiatric Institute and Weill Institute for Neurosciences, University of California, San Francisco, CA, USA.
11 Department of Pediatrics and Vanderbilt Kennedy Center, Vanderbilt University Medical Center, Nashville, TN, USA.
12 Department of Psychiatry, Columbia University, New York, NY, USA.

Appendix 2: The paragraph of the Primer (paywalled) discussed in this blogpost

Many individuals and groups presume that rates of
autism are increasing over time, but this supposition is
based on data from administrative records rather than
community-based studies. Indeed, after accounting for
methodological variations between studies, there was no
clear evidence of a change in the prevalence of autism in
the community between 1990 and 2010 (ref.13). In addition,
general population and systematic case-finding
community-based surveys (including testing of representative
populations) have also confirmed the lack of
significant change in prevalence rates in childhood14 and
adulthood15 over time. No significant evidence is available
supporting that autism is rarer in older people, which
provides further evidence against the suggestion that
autism is increasing in prevalence over time4. Even in
high-income countries with strong autism public health
policies, there is evidence that autism in adults goes
largely unrecognized, whereas administratively recorded
diagnoses in children increase year by year16. This finding
highlights the importance of obtaining information
on autism rates in settings where professionals may be
able to improve its recognition. The prevalence of autism
in mental health inpatient settings is estimated to be
far higher than in the general population, ranging from
4% to 9.9%17.

(Refs as cited in the paper)

4. Brugha, T. S. et al. Epidemiology of autism in adults
across age groups and ability levels. Br. J. Psychiatry
209, 498–503 (2016).
This paper uses active case-finding to provide
representative estimates of the prevalence of
autism and demonstrated that rates of autism in
men and women are equivalent in adults with
moderate-to-profound intellectual disability.

13. GBD 2017 Disease and Injury Incidence and
Prevalence Collaborators. Global, regional, and
national incidence, prevalence, and years lived with
disability for 354 diseases and injuries for 195
countries and territories, 1990–2017: a systematic
analysis for the Global Burden of Disease Study 2017.
Lancet 392, 1789–1858 (2018).

14. Marcheselli, F. et al. Mental health of children and
young people in England, 2017. NHS https://digital.
nhs.uk/data-and-information/publications/statistical/
mental-health-of-children-and-young-people-inengland/
2017/2017 (2018).

15. Brugha, T. C. et al. Autism Spectrum Disorder,
Adult Psychiatric Morbidity Survey 2014. (2014).

16. Lundstrom, S., Reichenberg, A., Anckarsater, H.,
Lichtenstein, P. & Gillberg, C. Autism phenotype
versus registered diagnosis in Swedish children:
prevalence trends over 10 years in general population
samples. BMJ 350, h1961 (2015).

17. Tromans, S., Chester, V., Kiani, R., Alexander, R.
& Brugha, T. The prevalence of autism spectrum
disorders in adult psychiatric inpatients: a systematic
review. Clin. Pract. Epidemiol. Ment. Health 14,
177–187 (2018).

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.

Three Strikes... and He's Out?

What happens when the regular world has had enough of my son's autism

[This piece is reprinted from a 2018 blogpost at Autism Society San Francisco Bay Area]

By Feda Almaliti

Oh Muhammed, or Mu, as we like to call him… my sun-shiny 13 year-old autistic boy, with his big smile, bigger hugs, and that mischievous sparkle in his eye. I’m literally kvelling just thinking about him. 

But the rest of the world? Its patience seems to be wearing thin. As I explained in a post last year, Inclusion Sucks, Or Why My Son Has Nowhere to Swim this Summer, Mu has the sort of autism that makes him welcome, well, not a whole lotta places. So naturally we’ve had another summer of rejection.

Here’s how it started. Mu can speak some sentences, though usually only when the planets and Ben & Jerry’s align, and even then he’s not understood by non-familiar listeners. Therefore he is considered functionally nonverbal. So to help him communicate he uses an Augmentative and Alternative Communication device (AAC). The AAC has been a godsend. It reduces his frustration and lets him bark at me like a regular teenager. His device shouts, “Want fries!" (his favorite vegetable) and “Want bubble water!” (In my experience, the word “please” drops from the English vocabulary between ages 13-17, autism or no.) 

And it’s not just about food. He can use it say, “Fix that!”— “that” being soap dispensers (three of them, yes, there must be three) when not placed at perfect 90-degree angles. Not to mention helping him medically, since he can usually use it to tell me where the “hurt” is. Mu wears the device pretty much all day long. It’s his voice, an essential. 

Now, Mu’s autism is really severe. He can be aggressive at times, have tantrums, and massive meltdowns. And when he does, you better believe the device is right there through it all. So our insurance policy includes getting a loaner during repairs. But recently the company that makes the device denied Mu one. Why? He was on the “Do Not Loan List.”

I mean I’m an Arab and a Muslim so I’ve totally heard of the Do Not Fly List. I’ve even heard of the Do Not Call List. But a Do Not Loan List? What’s the heck is that? Like a three-strikes law for autistic people?

"I'm an Arab and a Muslim so I've totally heard of the Do Not Fly List.... But the Do Not Loan List? What’s the heck is that? ​Like a three-strikes law for autistic people?"

I pleaded with the rep, telling him the AAC is his voice, not a vacuum cleaner! The rep still wouldn’t budge. Too many loans, and my son was Out.
 
Anyway, even without a loaner, Mu managed to ask to go swimming about 100 times. But guess what, we can’t go. Because, wouldn’t you know, we are also on the Do Not Swim List.
 
We recently took Mu to a nearby community pool, and let’s just say things didn't go so smoothly. We were asked to leave.

"Let's just say things didn't go so smoothly. We were asked to leave."

As soon as he blasted through the door, Mu jumped on, and broke, the pool’s handicap chair. Yes, you know that something that exists to make the pool more inclusive.

​I gotta admit… not cool Mu. That was way outta line and I laid it down to him. But believe it or not, that’s not why we were asked to leave. It’s because he was bothering the “moms and their young children” and taking “bites out of the swim noodles.” First off, I’m fairly certain there were chunks missing in the swim noodles when we got there—hey, it’s not like typically developing kids are all well behaved angels. And second, if allowed to return I would bring an armful of new ones as gifts—the Dollar Store is, after all, an autism mom’s best friend. But for now, it’s no AAC and no pool for Mu.
 
Now, I know what you are thinking—if Mu can’t behave in a way the public expects, at least there's help at home, right? 

Well, think again, because our behavioral agency recently put Mu on the Do Not Serve List.
 
After years of working with us they decided they wanted to drop Mu because they couldn't “appropriately” serve him (code for we don't get paid enough to deal with your kid). So, after much advocating we were able to secure help of another agency.
 
Then, within a week we faced another walkout. 

It started with the toilet. If something has a moving part, Mu will most certainly figure out a way to break it. It’s not that he means to or does it on purpose. He’s just very strong and doesn’t realize his own strength most of the time, some of the time, okay… all of the time. 

[Although I feel in a recent case he was plotting against me. Seriously, how did he even think to remove the toilet tank cover and stick in whole roll of toilet paper, then put the cover back on, and don’t even ask me what the plastic thing was in the middle of the roll. Again, not cool, Mu.]

Anyway he broke the toilet handle and tank so often our handyman finally insisted on installing a commercial version made of one solid piece.
​
Problem solved? Hardly, because then Mu broke off one of the sink handles, and then the doorknobs to the bathroom. Three strikes, again. ​​

Even the handyman had enough. He quit, too. Yes, the ultimate nightmare for us autism parents—the Do Not Fix List.

Inclusion is a hot topic in disability circles, but when our kids can’t play by society’s rules, inclusion can truly suck. Instead of some fantasy of joyful acceptance, we get black-listed. Over and over and over. How I dream of places, spaces and programs fully accepting of our special children. Autism-friendly rules, not “If you act autistic you’re out” rules.

 "Instead of some fantasy of joyful acceptance, we get black-listed."

With that in mind I end on a more positive note. At Autism Society San Francisco Bay Area’s Summer Pool Parties we make sure an autistic kid can be him or herself. Where they can chew on pool noodles, bellow and flop around, and no one judges them. ​So here we are, me in the burkini and Mu in his element. A place, however small, where everyone with autism belongs... on the VIP List. If only the rest of the world were so accommodating.

[End note. Please read before you send me hate mail. I believe all persons with autism should be accepted as they are anywhere they go, while I’m still holding out for my autism kibbutz or island. Whichever comes first. It’s all about choices. I respect everyone’s choices. Even yours.

And yes I’m a Muslim who likes to speak some Yiddish, okay? Kvell = to gaze upon with love and pride.​​

And finally, for those who don't like realities of autism discussed in public, I'm not shaming my son. There is no shame in behaviors one cannot control, it's like saying there's shame in a seizure for someone who has epilepsy. If you are ashamed for Mu, well shame on you.]

Feda Almaliti is Vice President of NCSA and Vice President of Autism Society San Francisco Bay Area.
​

Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer

An autism mom stuck at home with her son on a hot summer day meditates
on the smallness of his world when inclusion is the only option.

Stock photo

By Feda Almaliti

It’s 95 degrees outside and I’m here at home with my little guy Muhammed. I call him my little guy because he is the youngest of my children, but little guy is 12 years old and already 5’10”. Muhammed has autism, the kind that most people don't like to talk about. He is constantly moving, vocalizing, and “fixing things” (because everybody knows that coffee mugs can only be on the left side of the middle shelf in the cupboard next to the sink, right?).

His language is limited but every other phrase is “want eat.” He is perpetually hungry, and did I mention he already weighs about 200 pounds? He finds solace in watching Dora videos, which he requests about 100 times a day. He grabs food at times when he’s not supposed to so we nicknamed him “Swiper the Fox,” but unlike the cartoon character he doesn't stop when we say “Swiper, No Swiping!” three times. He can charm the pants off you once you get to know him, and he is legit the coolest kid I know, and believe you me I know A LOT of kids ;).

Muhammed is never going to be a Sheldon or pass as a quirky kid with autism. He has his awesome days and the not so awesome ones where he’s a whirl of mental and physical chaos. But this boy has a calm and happy place, and it’s smack in the middle of a cool blue pool. But like most autism moms, I don't have a pool. I will not be blessed with a pool anytime soon unless some reality show takes pity and surprises me with an Extreme Backyard Makeover.

So, given the stifling weather and the long weekend day ahead, I desperately want to take him swimming, but where can I go? In theory we could hop to a public pool, Y, hotel, or friend’s house. But reality is hardly so accommodating. No matter how much we may opine that severely developmentally disabled people like Muhammed deserve equal access to the community (which they absolutely do!) invisible signs everywhere tell us to "Go away."

Let’s face it, when he’s having one of ‘dem days, people don’t want kids like Muhammed near their calm and carefully maintained pools and manicured gardens. He scares little kids. He scares adults. He might take off his bathing suit in public. He sometimes pees on the ground when we can’t get to the bathroom fast enough (it would be better if he did it in the pool like everyone else though, and don't pretend your kid doesn't). Sometimes he grabs strangers' food and eats or throws it. He annoys other pool-goers as he “sings” and yelps unintelligibly.

So, as you can imagine, we get evil stares. We are treated rudely or asked to leave. And he's not exactly invited back to my friends' pools. They are worried about "liability" or "disturbing the other tenants" or neighbors. Even my famous homemade hummus is not enough to persuade people to reopen their doors. So here we sit, dry-docked while the rest of the world frolics in the blue. Thank god at least we have air conditioning.
 
The idea of full inclusion is all too often an illusion for severely autistic people like Muhammed. Heck, if he attended a conference about autism discrimination he'd be kicked out in two minutes. So we should be alarmed by the rise of the militant inclusionista ideology that says no matter how profound their cognitive impairments or disruptive their behaviors, people like Muhammed should be included in the mainstream of community life at all times instead of "segregated" in special programs designed for them.

Segregated. Ouch, it sounds like such a horrible word. Brings to mind Jim Crow and whites-only drinking fountains.

But that's not what I'm talking about. I'm talking about self-imposed segregation …like nudist colonies, senior living facilities, women-only gyms or even smoking lounges in airports. Gosh, how I yearn for it. How desperately we need it! I literally have dreams of an autism island, but I'd totally settle for an autism kibbutz.

I imagine programs and places, away from the rules and consternation of the general community, where all of Muhammed's exuberance was welcome. Where he could be safe, and be totally himself, splashing and yelling to his heart's delight. This sort of positive segregation would open doors for Muhammed, instead of closing them.

"Heck, if he attended a conference about autism discrimination 
he'd be kicked out in two minutes."

Of course my pool predicament is a microcosm of a bigger problem: disability-friendly day programs, jobs, housing, and therapeutic care—vital lifelines for parts of our population—are at risk given the direction of federal policy. The trendy mantra is "community integration" while options for the severely disabled slowly disappear into the black hole of red tape and de-funding.

It’s not that I don't want my son to be included, to the contrary, we work with him at home every day, and let’s not forget the various therapists, aka uncanonized saints, to come closer and closer to that goal. But I’m a realist, and Muhammed will never live independently in the community and I’m never going to be the next Beyoncé. So, if inclusion is the only answer for Muhammed, his future will look like today: isolated inside our house, with nowhere to go.

"But I’m a realist, and Muhammed will never live independently in the community
and I’m never going to be the next Beyoncé."

They say, “Why maintain an autism day program when Joe could just go to the local Y?” or “Why have sheltered workshops when Sam can get a competitive job at Safeway?” Please tell me, what are these people smoking and in which smoking lounge can I find them? Have they ever tried caregiving for someone like my son? 

So let's make a deal. Let's ensure inclusion and integration for all those who want it. And let's support acceptance of all, including acceptance of alternative options for the Muhammeds of our world. Don't let narrow ideology throw our babies out with the bath, or, er, pool water. It's just common sense. In the meantime if you'll invite us over for a swim, we'd appreciate it.

(This is only MY opinion obviously but undoubtedly some people will misinterpret this piece to mean I believe that all people with autism should be segregated from the community, which I am not saying nor implying nor do I believe! But let the hate mail begin in 3, 2, 1….)

Feda Almaliti is an autism mother who lives in the San Francisco Bay Area.  This blogpost was reprinted based on the original 2017 post at Autism Society San Francisco Bay Area.

Coronavirus Crisis: NCSA's Feda Almaliti on NPR

THE CORONAVIRUS CRISIS

'He's Incredibly Confused': Parenting A Child With Autism During The Pandemic

Thank you to NPR’s All Things Considered for speaking with NCSA Vice President Feda Almaliti about how the stresses of the coronavirus crisis on families with severe autism.

———————————————

Living with the pandemic has been difficult for everyone: the isolation, the need to wear protective gear like masks and gloves, the adjustment to working or learning from home.

For those living with or caring for someone with severe autism, those challenges can be exponentially more difficult.

"Wearing gloves or masks, you know, things like that? That's just not going to happen here," says Feda Almaliti….. Hear the radio program on NPR here

CDC Study Estimates 2.2% of U.S. Adults Have Autism — Don’t Believe a Word of It

The paper’s adult autism numbers are wildly overblown, and worse than useless.

By Jill Escher

Autism research has long been something of a spectacle. For every study that actually moves the field forward, it seems a dozen are fairly worthless, same-old same-old, or totally bizarre.

But I never expected that work from our own U.S. Centers for Disease Control (CDC) would fall into that last category.

This week the Journal of Autism and Developmental Disorders published a paper, “National and State Estimates of Adults with Autism Spectrum Disorder,” by the CDC’s Patricia Dietz, Charles Rose, Dedria McArthur, and Matthew Maenner. The news sites blared across the internet: “First United States Study Of Autism In Adults Estimates 2.2% Have Autism Spectrum Disorder,” or “CDC Researchers: Over 5 Million US Adults Have Autism.”

But the study estimating a supposed 2.2% prevalence in adults, was, how can I put it mildly, utterly preposterous.

It was, in essence, nothing more than a glorified back-of-the-envelope type of exercise that did not actually look at any data pertaining to autistic adults. Rather, it used data for children with ASD and, adjusting for mortality rates, projected what adult rates might be based on current childhood rates.

The obvious flaw? The method was based on the fundamental assumption that the birth year autism prevalence is constant over all ages considered, going back to 84 years before 2017. Yep, they assumed autism rates were the same in 1933 as 2017, and all years in between.

Never mind that there’s not a shred of evidence for this — not in medical, academic, institutional, military, court, social security or any other records, whether pegged under autism or any other label. And never mind that the CDC itself has published numerous studies indicating increasing autism prevalence over successive birth years.

But apparently at the CDC it’s cool to ignore actual facts. So, simply assuming current rates apply to all ages, even 87 year-olds, the paper estimates that in 2017 the U.S. adult prevalence of autism was 2.21%, or 5,437,988 U.S. adults (!) aged 18–84 years. Five and a half million autistic adults? What? How? Where?  Anyone with eyes can see that’s just not true.

It also estimates the states with the greatest number of adults with ASD included California, at 701,669 cases, Texas with 449,631, New York, with 342,280, and Florida, with 329,131.

Validity check, anyone? These numbers are absurd on their face. For example, in California we obviously have nowhere near 701,669 cases of adult ASD.

California is known for maintaining the country’s best records on autism in the population. In our Department of Developmental Services (DDS) there are currently about 39,000 cases of autism for ages 18 and up. Outside of DDS, which would include milder cases ineligible for developmental services, the population has been estimated to add about 30% more than that number, so perhaps we have about 50,000-60,000 total adult ASD cases. It boggles the mind that any researcher who knew anything about autism in the real world would estimate that California has 701,669 diagnosable adult ASD cases.

Moreover, California has kept close tabs on autism for many decades. And what does that data say about autism by birth year? That the rates have skyrocketed beginning with births in the early 1980s, something even the California Department of Public Health has verified in prevalence studies. The graph to the left shows the DDS autism cases by birth year: about 200 per year through the early 1980s to more than 7,200 by 2014. In other words, real-world data show unequivocally a massive upsurge in cases over time.

In fact, DDS data show there are only 4,000 developmental disability-qualifying autistic adults born before 1980 in the entire state. If rates remained constant over time, as the CDC suggests is the case, the state would have about 250,000 such adults instead of the actual 4,000. But there’s not a shred of evidence our robust system has missed even a tiny fraction of the supposed 246,000 missed cases.

So, how did this new CDC paper get away with such absurdities?

The authors say they assume ASD prevalence among children and adults (of all ages) is similar because there is no evidence that environmental factors associated with ASD have changed over time. They say “few risk factors have consistently been associated with ASD and those that have been identified have accounted for a very small percent of increases in diagnosed ASD.”

Actually, they are correct, to a point. With rare exceptions (like fetal exposure to anti-seizure medication and prematurity), exposures investigated to date (and this includes vaccines, which obviously do not cause the dysregulated brain development of autism) cannot explain the colossal increases in autism witnessed across our country.

But — and I can’t believe this needs stating — it makes no sense to dismiss an increase by birth year simply because you don’t know what caused it. That’s like saying that people were not getting sick and dying of Covid-19 if we didn’t know what caused it. Or children were always born with high rates of microcephaly because we didn’t know about Zika. 

Epidemiology works the other way around, of course. First you identify changes in disease incidence, which for disorders like autism means birth year prevalence, and you use that information as a clue as to causes. The CDC’s role is to identify risk factors driving pathologies afflicting Americans. But in a move that should outrage anyone who cares about autism, it is now waving the white flag of scientific surrender, saying basically, “We don’t know what is causing this autism increase and we assume there’s nothing more to discover.” An abdication of its core responsibility to the U.S. people.

In the good news department, it seems this paper had some noble intentions. “National and state-based estimates of adults living with ASD could inform planning for programs,” say the authors. And yes, we desperately need policymakers to understand the prevalence and number of cases so we can support the legions of disabled adults. But this study offers nothing of value, and, worse, signals an alarming level of apathy about causation of very serious neurodevelopmental pathology that has flooded our communities.

Jill Escher is founder of the Escher Fund for Autism, which promotes research in the genetic toxicology of autism, GermlineExposures.org. She is also President of the National Council on Severe Autism and Immediate Past President of Autism Society San Francisco Bay Area.

Disclaimer: All blogposts on NCSA represent the views of the authors and are not necessarily the views of NCSA.