Is Autism an Epidemic - or Not? Источник: https://drlou.substack.com/p/is-autism-an-epidemic-or-not ============================================================ Is Autism Really a ‘Public Health Crisis? Looking Through the California Blue Ribbon Commission’s Report on Autism | Published in California Journal of Health Promotion Though my above article was published about 25 years ago, it is as relevant now as it was then. Issues related to autism prevalence is hardly a new issue or point of discussion. Free Thinking is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. I read the Washington Post commentary, ‘The Autism Epidemic is a Myth’ which apparently and unfortunately has been taken by many on LinkedIn (and elsewhere, no doubt) with great offense. While several of the author’s observations seem to be misinterpretations to me while others can/should be questioned, I do not dismiss the commentary or its overall conclusions. And I most certainly don’t see it as any kind of attack on or attempt to mislead readers or the autism community. I’d suggest folks take a breath and read it again but in a more objective manner. Philosophic doubt is good and folks may still disagree with specific conclusions offered, but at least agree that the Post article is not driven by that author’s random biases or as “a deplorable attempt to manipulate public attitudes,” but is thoughtfully presented and connected to relevant literature. The Autism Epidemic is a Myth That autism has a high prevalence is not in doubt. Reasons for and explanations of these prevalence numbers, however, are open to question. The primary figure in the US who has long profiteered off of, manipulated and pushed deeply biased conspiracy theories helping to drive a dangerous anti-vax movement, to include a frontal assault on autism and public health overall, is RFK Jr. That RFK Jr is singly handedly reinvigorating dangerous anti-vax and autism pseudoscience along with the Bio-Medical Autism Industrial Complex should be of far more concern than reasonable academic and clinical discourse on autism prevalence since science and facts are no longer the purview of HHS. The author of the Post commentary, for instance, writes ‘like the rise in ADHD, anxiety and depression diagnoses among young people, the surge in autism labels may reflect shifting norms, looser diagnostic criteria and excess therapeutic attention directed toward ordinary struggles.’ This not only references autism but autism as a member of larger and hugely overly diagnosed mental health categories in children (and adults). It also references the DSM which can improperly take what are often normative life events in order to create psychiatric illnesses framed by and for Big Pharma. Such discussion and debate with regards to the DSM comes with a long history and excellent literature which I’ve followed (and written about myself) for years. The diagnosis of autism is not somehow independent of this larger and too often flawed DSM diagnostic model Share Anxiety, for instance, is much less neurological and far more often the result of cumulative and specific life events. Behaviorally, anxiety can quickly increase when folks work very hard for a certain outcome/reinforcer in the way they were told would be effective but then repeatedly fail to access that reinforcing outcome. The long misrepresented BCBA exam (which I’ll discuss more in another post) is one exact example of such a dynamic with which many here are very familiar. Alternately, while chronic depression can lead to and be correctly identified as an explicit diagnostic and neurological need, it more often is driven by - life - and naturally occurring life events. With consideration to the behavioral analytic dimension of Parsimony, depression should first be identified through and across the environment rather than as a presumed ‘disease process’ with the subsequent need for medication. It must first be considered to be more normative and environmentally constructed. Similarly, ADHD could be considered a specific learning and social profile rather than as an explicit diagnosis or neurology impacted by a wide range of contextual events and circumstances. Attentional deficits, higher motor rates and disinhibition can be driven by a range of conditions to include disrupted/dysfunctional environments, social trauma and resulting hypervigilance, functional relationships and ineffective teaching and support strategies to list but a few. Humans have long rushed to attach a label to human behavior especially anytime that behavior does not fit in with what is expected by the prevailing majority culture. And autism is part of this same broader dynamic. The author of the Post article cites a study from the Society for the Experimental Analysis of Behavior called ‘Trends Over Time in the Prevalence of Autism by Adaptive and Intellectual Functioning Levels.’ Even though the Post author concludes that ‘between 2000 and 2016, there was a 464 percent increase in diagnoses among children with no significant functional impairment,’ the authors in the cited article identify it a bit differently, writing that The increase in autism prevalence between 2000 and 2016 was disproportionately among those with mild or no significant adaptive limitations and without co-occurring ID. These trends could indicate improved identification of autistic children with milder phenotypes over time as well as improvements in functioning due to increased access to effective therapies. This study demonstrates the importance of incorporating adaptive behavior scores in epidemiologic studies of autism to better identify the strengths and support needs of this population. I think the author of the Post commentary misinterpreted aspects of this study in that he was far to quick to dismiss such ‘milder phenotypes’ presumptively writing that these children have ‘no significant functional impairment.’ The study, on the other hand, writes about subsequent improvement ‘in functioning due to improved identification and the resulting increased access to effective therapies. As a Clinical Behavior Analyst with 45+ years of experience who has made countless ‘house calls’ across a very wide range of communities, I will clearly identify that children who are - technically - considered on the ‘mild’ end of the ASD spectrum, and are often more advanced learners (I do not use high and low functioning), can frequently bring their own sometimes rather intense and unique behavioral, social, adaptive and interactive challenges. Dismissing them as ‘mild’ as does the Washington Post author (and as many others do as well) can be a substantial disservice to them, their families and providers to include classroom teachers while being used as an excuse by insurance, schools, and other professional providers to incorrectly deny services. At the same time, it is absolutely correct to say that ‘quirky’ children; children with sometimes more naturally challenging personalities and temperaments can too quickly be diagnosed and incorrectly labeled. That they may respond differently from what is considered normative does not/should not presume a developmental and/or psychiatric diagnosis. And it is also true that autism has become a more preferred category to use in this regard where then can drive prevalence numbers. In my article, ‘Is Autism Really a ‘Public Health Crisis?‘ linked at the beginning of this essay, I wrote that ‘a range of issues from demographics to preference (yes, preference) must be considered in the identification of ASD.’ And what percentage of ASD diagnoses, particularly for young children, are driven by the ‘ABA’ service sector and the dominance of private equity? That many larger ‘ABA’ agencies (others, too) can have their own licensed clinical diagnosticians to assess and diagnose children has always seemed to be an ethical quandary. A first question to ask is exactly what criteria has led to these hugely increased prevalence numbers. While current rates of autism are certainly and legitimately far higher than once identified, I strongly believe that the more extreme prevalence numbers routinely identified are misrepresentative. As the author of the Post article references, I’ve also written about the ‘looseness’ of the CDC’s original diagnostic criteria for autism and that subsequent prevalence numbers are driven more by self reports from parents, teachers and other primary providers based on isolating out what are, in effect, behavioral observations as opposed to administering comprehensive diagnostic assessments. Some of the CDC’s data documenting the supposed rise in the characteristics of autism, meanwhile, comes not from gold-standard in-person psychiatric assessments but from parent-reported surveys such as the Social Responsiveness Scale. which includes such questions as Would rather be alone than with others,” “Has difficulty making friends,” and “Is regarded by other children as odd or weird.” These are primary examples of isolating out behavioral characteristics and observations which can commonly occur across many children - and adults - which may more often identify personality traits and individual preferences rather than specific diagnostic markers. More fixated or perseverative behavior is another behavioral characteristic often isolated out as uniquely aligned with an autism diagnosis - when it is not. Share The child who might fixate on cars, may become a highly successful and skilled automobile mechanic while another child who may perseverate on how computers work could be the next IT wizard. While such characteristics can certainly occur in children who do have ASD and interfere in the child’s independence and learning, they are also human behaviors rather than presumptive signs of any kind of specifically aligned dysfunction, diagnostic category or overt need for specialized services. Instead - it depends. Each child must be assessed and understood one at a time. The world and environment in which each child lives and interacts must also be understood one at a time With regards to autism prevalence, a wider range of issues from demographics to preference (yes, preference) must be considered. And what percentage of ASD diagnoses, particularly for young children, are driven by the ‘ABA’ service sector and the dominance of private equity? For PE in autism services, children with autism can quickly become just another product rather than being children first. The many adults who fly the flag of neurodiversity while literally putting both self and professionally identified ASD, and related, diagnoses on business cards and social sites is something I still find odd. Prevalence numbers and rates are far more complicated than often identified and this discussion must continue without reactivity and internalization. Free Thinking is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.