by Jill Escher
As an active advocate for the burgeoning population of young adults with autism, I troubled by a trend in the neurodiversity sector to contort data, science, and history into knots to deny the existence of any true growth of this often incapacitating neurodevelopmental disability. Most recently, Bay Area autism dad and blogger Matt Carey wrote a mini-analysis to suggest we have no reason to believe there's been any true increase in autism in our great state of California. We can all rest easy now… apparently countless thousands of advocates, administrators, researchers, physicians, teachers, families and service providers have been rather hasty and delusional in their appraisal that the Golden State has experienced a dramatic surge of this neurodevelopmental disability over the past several decades.
In “If you are using California data to claim an autism epidemic, you’re doing it wrong. Or: The great anti-epidemic of intellectual disability in California,” Carey throws a lightweight punch at the idea that the scorching autism numbers maintained by the California Department of Developmental Services (DDS) are so infected by social factors and diagnostic shifts that they amount to a sloppy heap of ignorable nothing. In so doing, he implies that a 2015 report called “Autism Rising,” issued by Autism Society San Francisco Bay Area, paints a misleading picture of the DDS autism data.
Because I strongly object to Carey’s sotto voce accusation and also because his mini analysis is so Swiss cheesed with error, I believe a response is appropriate.
ATTRIBUTING THE SURGE IN AUTISM TO THE THE SLOWING OF GROWTH OF INTELLECTUAL DISABILITY IS NONSENSE
Without exactly saying so, Carey seems to assert the increase in DDS autism cases can in large part be explained by a switcheroo from what had been labeled as intellectual disability (ID) cases. Carey says, “Intellectual disability has dropped. Off about 40% of the peak value.” This is inaccurate. The birth cohort data cited reveals not that ID has declined but only that growth in this category has slowed. But even if Carey was correct that ID declined by 40%, that hardly means the increase in autism is tied to that decrease. There are several reasons for this.
First, as a commenter pointed out in his blog, even if you assume all cases formerly labeled as ID morphed into autism cases (an idea for which there is no empirical evidence) the decline in ID represents only a fraction of the long-term climb in autism cases. So where did all that other autism come from? Carey does not say.
Second, and more importantly, DDS enacted heightened eligibility criteria in 2003, wiping out entitlements to a sector the less severely affected developmental disability population. Individuals with ID generally have fewer problem behaviors but higher functional and adaptive skills than autism cases. So when DDS changed criteria, the category suffering most from the stricter entry requirements were those with the least severe disabilities, that is, many who had been classified as having mild forms of ID. Such cases used to enter the system with relative ease.
Third, and somewhat related to the point above, DDS autism cases typically, though not always, have a qualitatively different flavor than those with ID. Keep in mind that autism in the DDS system represents just a portion of the state’s overall autism cases, limited to those with substantial and permanent developmental disability, typically necessitating supervision to address their daily needs, such as making food, getting dressed, paying a bill, communicating, attending to hygiene and health needs, and traveling in the community. Often these folks exhibit challenging behaviors including property destruction, aggression, markedly impaired communication, social unresponsiveness, repetitive statements or movements, vocalizations, and various outbursts. Though there are exceptions, the system generally does not include higher functioning forms of the disorder. But the bottom line here is they are not easily qualitatively interchangeable.
Fourth, there may be organic reasons for part of the decline in ID. People both in and outside of the DDS system have suggested that ID case growth may have slowed during this period in part owing to increasing rates of selective abortions of fetuses with Down syndrome and other genetic or chromosomal defects detected by increasing screening, combined with a drop in preventable mental disabilities like fetal alcohol syndrome.
Fifth, DDS’ own study of its data did not find the alarming growth of ASD to be an artifact of diagnostic reallocation. I’ve included a summary of a 2002 study and key findings from other DDS autism reports in an appendix beneath this commentary.
And sixth, even UC Davis MIND Institute researchers found only a fraction of autism growth possibly attributable to things like diagnostic shift—and that was back when the numbers were far smaller than today. (See “UC Davis M.I.N.D. Institute study shows California's autism increase not due to better counting, diagnosis.”) Most of the autism growth in California was not explained by the “social factors” of which Carey complains.
The point is this: it is laughably simplistic to merely assume that recategorization resulted in the bulk, or all, of the autism explosion. Some of it? Sure, I’ll give Carey that. But there is no evidence of this as a significant driver of the autism trends.
THE MYTH OF THE HIDDEN AUTISTIC ADULTS
The only important implication of the DDS autism data, Carey seems to insist, is not that that we should be worried about the upswing in autism, but rather that DDS and regional center staff have failed to include tens of thousands of adults with severe enough developmental disability-level autism to render them eligible for DDS services, thereby artificially skewing the population curve toward the young end of the population. Apparently we should start scouring of our state to locate a football stadium’s worth of dependent and disabled adults with severe autism … who don’t know they have severe autism … autism so bad it would render them developmentally disabled and eligible for DDS services… but were never noticed before … or something like that.
Okay, let’s go find those hidden severely affected adults! If they exist at the same rate as our kids, they must be everywhere. Except, of course, they aren’t. Our state has, for example, just 140 45 year-old DDS autism cases, but a whopping 3,196 15 year-old such cases. Did DDS really miss approximately 3,000 45 year-olds with DDS-level autism? Not to mention all the other adults of all ages? The idea is preposterous. No one who works in this system thinks there exists an appreciable number of severely affected adults with autism lurking in the shadows, hiding in basements or attics, or otherwise hidden from our system. These people would have been diagnosed with something in the developmental disability orbit, and likely would have been institutionalized. But at its peak in the 1960s California institutionalized just 16,000 people. We have 300,000 in the DDS system today. Where could those hidden people be?
CAREY’S PREMATURE BURIAL OF ENVIRONMENTALLY INFORMED CAUSATION
Carey seems to believe something to the effect that if you want to say there's a real increase you have to explain what caused it. On the contrary, if you want researchers and funding agencies to look hard enough in the right places to find the actual causes you have to show them that there is a rising true prevalence, and birth year data helps. Carey is quick to suggest complex social factors are to blame for a faux autism surge and not “vaccine (sic), toxins, epigenetics, or whatever the claimed causes of the rise are.”
Carey is obviously right that vaccines have not contributed to rising prevalence of the disorder. No argument there. But he is too quick to dismiss other potential contributors. Certainly, the mainstream of science has not yet ruled them out, including dozens of scientists with whom I recently met at IMFAR, the International Meeting for Autism Research. For example, we know that adverse perinatal events such as prematurity, early maternal infection, and exposures to certain powerful drugs like anticonvulsants can raise the risk for ASDs. But what else? The case is far from closed. Based on many years of work as an autism research philanthropist it’s clear we are barely scratching the surface of probing potential routes of ASD causation, including those based on gene-environment interactions and genetic toxicology (okay, full disclosure, my specialty). Carey rolls his eyes at causation inquiry, but that view seems grounded in a sort of religiosity and not science.
MISCHARACTERIZATION OF SFASA’S "AUTiSM RISING" DATA REPORT
I must also lament that Carey mischaracterizes our “Autism Rising” report. Birth year trends for disorders like autism are good for identifying causes and for predicting future case loads. He sort of accuses us of hiding ID data, and asserts, with no nuance or explanation regarding the purpose of our report, “The Autism Society of San Francisco made the argument that the [DDS] data are accurate and show an epidemic.”
This is what the report actually says:
“Because of the entitlements and case-finding provisions of its unique Lanterman Act, California is routinely acknowledged as maintaining the most robust and reliable statewide population autism and developmental disability data in the country. While the data is not perfect —consensus holds that the DDS system omits a portion of the state’s overall clinically-defined autism population and that eligibility criteria vary slightly by region—the case information in DDS databases is detailed, subject to ongoing review, and based on probing eligibility assessments that have grown more stringent over time. While the DDS data may not provide exact reflections of autism growth patterns, they paint a sufficiently thorough picture from which reasonable people can draw reasonable conclusions about growth and implications for public policy.”
The report later provides more clarity about our purpose:
“California’s developmental services system has experienced a staggering increase in cases of autism, a demographic phenomenon that carries profound implications for California’s future, given the severe functional limitations presented by individuals with this level of disability.... We must actively plan for the intensive needs of this growing adult population. The influx of adult DDS autism cases, combined with the declining ability of parents to provide care, will require a structural overhaul and significant bolstering of our developmental services system. Current community resources are already documented as insufficient to address even the current population.”
Apparently this restrained characterization and emphatic statement of purpose eluded Carey. We never saw or presented the data as perfect — certainly it is not. But we, along with most people who are knowledgeable about the dataset, do see it as remarkably encompassing and powerfully foreboding of a grave crisis which we must address with the utmost urgency.
FANTASIES LIKE CAREY’S CAN FUEL A DANGEROUS COMPLACENCY
Finally, Carey is hardly alone in engaging in flippant distortions to support ideological ends. For example, Steve Silberman makes something of a sport of autism increase denialism in his neurodiversity manifesto NeuroTribes. (Feel free to read my personal review, “NeuroTribes: One Step Forward, Two Steps Back for Autism” for a more detailed explanation of some of its shortcomings).
So here's what I think: No matter how you slice California’s autism data, it sounds loud alarm bells about the current and coming crush of those reaching adulthood. It shows that in 20 years, we will have more than quadruple the total number of DDS autism adult cases as we have today, a fact that is particularly sobering considering our beleaguered system is already bursting at the seams. Even if some of this is a shift from ID, the growth is still shocking, particularly considering the magnitude of functional disability that lies behind the label.
We are facing a public health and social services crisis of epic proportions—and not because there is a hidden horde of autistic adults as Carey suggests, but rather because we have an unprecedented surge of severely incapacitated young people who will never be able to care for themselves. As the need for system-wide reform becomes increasingly urgent, whitewashing this dire reality with superficial but provocative attacks on our state's extremely important data is a sideshow we can ill afford.
Jill Escher is an autism research philanthropist with the Escher Fund for Autism, a housing provider to adults with developmental disabilities, president of Autism Society San Francisco Bay Area, and the mother of two children with severe, nonverbal forms of autism. The foregoing is her personal opinion which does not necessarily reflect the views of any autism organization with which she is affiliated. She can be reached at [email protected].
Appendix: Summary of 2002 Study and Key Findings in DDS Autism Reports
• In March 1999, alarmed by the unexpectedly sharp increase in the autism caseload since the 1980s, DDS issued a report summarizing the rise in DDS-eligible autism between end of the year for years 1987 and 1998 (“1999 Report”).
• The 1999 Report concluded that the number of persons entering the system with autism had increased dramatically between 1987 and 1998 relative to the other developmental disabilities.
• The 1999 Report showed that at end of 1987, there were 3,902 persons with DDS autism, or 4.85% of the entire DDS caseload. By the end of 1998, there were 12,780 such individuals, representing 9.37% of the overall DDS caseload.
• The 1999 Report found that the rate of the autism increase was more than four times as great as the other diagnostic categories.
• The 1999 Report found that in 1998, there were 1,685 persons with autism enrolled in the DDS system, a “number of persons far exceed[ing] the expected number determined by traditional incidence rates.”
• The 1999 Report cautioned, “If present rates of intake continue, there will be a need for: (1) greater emphasis on long range planning to develop suitable methods of delivering services, [and] (2) strategies for development of new and abundant resources.”
• The 1999 Report documented the birth dates of Regional Center eligible persons with autism, and reflected that the increase in autism births began slowly in about 1980, spiking sharply by 1990.
• The data shown in the 1999 Report also reflected that from about 1960 through about 1977 there were 200 or fewer autism births per year comprising the California DDS population.
• The State commissioned a study, published in 2002, to examine whether expanded diagnosis, immigration, or other factors could have caused the sharp spike in autism cases (“2002 Study”).
• The 2002 Study stated: “It is natural to discount that which we do not understand or force it to fit a paradigm with which we are comfortable. This study has been an attempt to determine whether or not the increased numbers are due to a real epidemic, or if the rise in autism cases can be explained by factors that have artificially created that increase.”
• The 2002 Study stated: “Has there been a loosening in the criteria used to diagnose autism, qualifying more children for Regional Center services and increasing the number of autism cases? We did not find this to be the case.”
• The 2002 Study stated: “Has the increase in cases of autism been created artificially by having ‘missed’ the diagnosis in the past, and instead reporting autistic children as ‘mentally retarded?’ This explanation was not supported by our data.”
• The 2002 Study stated: “Without evidence for an artificial increase in autism cases, we
conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California, and the number of cases presenting to the Regional Center system is not an overestimation of the number of children with autism in California.”
• The 2002 Study summarized as major findings the following:
—”The observed increase in autism cases cannot be explained by a loosening in the criteria used to make the diagnosis.”
—”Some children reported by the Regional Centers with mental retardation and not autism did meet criteria for autism, but this misclassification does not appear to have changed over time.”
—”Children served by the State's Regional Centers are largely native born and there has been no major migration of children into California that would explain the increase in autism.”
• In 2003, DDS issued another report, called “Autistic Spectrum Disorders, Changes In The California Caseload, An Update: 1999 Through 2002,” published April 2003 (“2003 Report”),
• The 2003 Report found that the number of persons with autism entering the system continues to increase dramatically, and that, “In fact, the rate first documented in the 1999 Report has accelerated in the last four years. Autism is and will most probably continue to be the fastest growing disability served by the regional center system.”
• The 2003 Report stated that the DDS autism population had grown to 20,377 as of December 2002.
• In 2007, DDS issued a report called, “Autistic Spectrum Disorders, Changes in the California Caseload An Update: June 1987 – June 2007” (“2007 Report”).
• The 2007 Report found that from June 1987 through June 2007, California experienced a 12-fold increase in individuals with autistic disorder being served by DDS.and that this number did not include those on the autism spectrum subject to a broader definition.
• The 2007 Report found that, “Currently there are more than 38,000 people in California receiving services for ASD, growth that has averaged 13.4 percent annually since 2002.”
• Regarding adults with autism, the 2007 Report found that “Currently, approximately 6,000 adults with a diagnosis of autism receive services from DDS,” and that by 2018, “the number of adults with autism being served by DDS will triple, to more than 19,000.”
• The 2007 Report found that between 1990 and 2000, “the number of persons with autism being served by regional centers rose 26 times faster than that of the general California population.”
• The 2007 Report found that “The ratio of males to females with autism in the DDS system is 4.6 to 1, consistent across all counties and with the scientific literature.”
• The 2007 Report concluded: “This document represents 20 years of longitudinal data about people with ASD who are served by the state’s DDS through care coordinated by 21 nonprofit regional centers. During this time in California, unprecedented growth occurred in the number of people with this neurodevelopmental disorder. Currently, nearly 39,000 people in California receive services from DDS for ASD. Many findings emerged during these two decades, including a decline in the average age of people with autism, a sizeable age wave of youth approaching adulthood, an increasing proportion of males who have ASD, and a diagnostic stability over time.”
Note: At the end of 1987, the Department of Developmental Services (“DDS”) identified a total of 3,902 Californians with functionally and substantially disabling autism meeting the strict threshold of eligibility for DDS services. The entire DDS population at the time was 80,483. DDS now identifies more than 83,000 Californians with DDS-eligible autism meeting the same, or even more restrictive, criteria. Outside of DDS, the California Department of Education counted 13,979 students aged 3-21 with autism in end of year 2000 and 84,526 such students at the end of 2013.