I WITNESS: Time to talk about autism

I have thought about writing a column on this topic for quite some time, but I wanted to wait until I had retired from full-time practice as a school psychologist before I broached the topic. After moving to Wisconsin in December 2024, I thought I might write the essay this summer, but in light of our current American moment, it seems prudent to write it now. Feel free to skip over the drier diagnostic pieces, since I will interpret as we go along.

Over the course of a decades-long career, I had a number of fraught conversations with parents who desperately wanted their children to be identified as having autism spectrum disorders. Although these conversations happened wherever I practiced (Nevada, California, Massachusetts), the demands for diagnoses were at their highest levels in Berkshire Hills Regional School District (BHRSD). This phenomenon really had nothing to do with BHRSD, but everything to do with the evolution and misuse of autism diagnoses nationwide.



Diagnostic criteria for any particular disability can be located in a weighty reference work called the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM is authored by the American Psychiatric Association and has been through several iterations over the years. At present, the most recent edition is the DSM-5-TR (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision).

The occasional revision of the DSM sometimes results in a change in criteria for any particular diagnostic profile, and this often leads to unintended consequences. Such has been the case in the diagnostic criteria for autism. In the DSM-IV, for instance, the diagnostic criteria were as follows (don’t worry, I will break this psych-speak into a more palatable form momentarily):A total of six (or more) items from heading (A), (B), and (C), with at least two from (A), and one from (B) and (C):Part A: Qualitative impairment in social interaction, as manifested by at least two of the following:Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction.

Failure to develop peer relationships appropriate to developmental level.A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g.

, by a lack of showing, bringing, or pointing out objects of interest to other people).A lack of social or emotional reciprocity.Part B: Qualitative impairments in communication as manifested by at least one of the following:Delay in or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).

In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.Stereotyped and repetitive use of language or idiosyncratic language.Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.

Part C: Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by two of the following:Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.Apparently inflexible adherence to specific, nonfunctional routines or rituals.Stereotyped and repetitive motor mannerisms (e.

g., hand or finger flapping, or twisting, or complex whole-body movements).Persistent preoccupation with parts of objects.

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years [emphasis added, and we will get to why it requires emphasis a little later]:Social interactionLanguage is used in social communicationSymbolic or imaginative playThe disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.In short, the diagnostic criteria made it clear that autism was a very significant developmental disorder, and individuals receiving the diagnosis had little ability to communicate verbally; engaged in repetitive, rote, non-purposeful behaviors; had deep social and behavioral deficits; and often had significant cognitive challenges as well. Most individuals diagnosed with autism needed significant ongoing care and support across the lifespan and across settings.

Within that same DSM, there were also separate diagnostic criteria for Asperger’s syndrome, a related developmental social disorder in which an individual with good intellectual development, despite an almost preternaturally well-developed vocabulary and very strong reading skills, had below-average social acuity and exhibited narrowly defined, specific areas of interest. Informally, Asperger’s syndrome was often referred to as “Little Professor Syndrome.” Individuals diagnosed with Asperger’s syndrome had a strong identity and culture.

They were quirky, perhaps, but absolutely capable of leading functional, independent lives.In my opinion, the richest man in the world, Elon Musk, would easily meet diagnostic criteria for Asperger’s syndrome, if only those criteria still existed.With the advent of the DSM-5, Asperger’s syndrome as a separate diagnosis disappeared.

In making this change, the American Psychiatric Association, with the stroke of a pen, erased the distinct identity of thousands of individuals. It caused real consternation to the Asperger’s community, many of whom viewed their constellation of unique strengths as their superpower. They did not particularly appreciate being lumped into a diagnostic category associated with a profound level of disability.

Within the same DSM-5, the American Psychiatric Association, in their infinite wisdom, broadened the diagnostic criteria for an autism diagnosis so ridiculously that everyone suddenly decided that they had autism. This change in the DSM coincided, sadly, with the advent of the internet and an explosion in self-diagnoses. Autism was now a “spectrum disorder” (ASD) undergoing a dramatic uptick in cases.

The revised diagnostic criteria for the newly defined autism spectrum disorder included two main categories (never fear, I will summarize at the end): Social communication and interaction, and restricted and repetitive behaviors. To receive a diagnosis of ASD at present, an individual must have serious deficits in both areas:A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.Specify current severity: Severity is based on social communication impairments and restricted repetitive patterns of behavior.

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):Stereotyped or repetitive motor movements, use of objects, or speech (e.g.

, simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g.

, extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

Hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior.C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.E.

These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.

Individuals who have marked deficits in social communication. (Emphasis added, explanation coming right up)Specify if:With or without accompanying intellectual impairmentWith or without accompanying language impairmentAssociated with another neurodevelopmental, mental, or behavioral disorderWith catatoniaAssociated with a known medical or genetic condition or environmental factorSo to recap in less technical terms, everyone previously diagnosed as having a developmental social disorder, regardless of severity, got swept into the pool. Thus, the prevalence rates went through the roof.

Children bothered by the tags in their clothes were diagnosed with autism. Children who couldn’t tie their shoes were diagnosed with autism. Children who were socially awkward were diagnosed with autism.

Needless to say, year-to-year autism prevalence rates mushroomed out of control. A year-by-year review of prevalence rates are as follows, courtesy of the Centers for Disease Control (CDC):Reading the chart from the bottom up, prevalence rose from one in 150 in 2000—the year that work on the DSM-5 began—to one in 31 in 2022. I contend that we did not see an explosion of autism during that time; we saw an explosion of over-diagnosis, thanks to the American Psychiatric Association, among others.

It is particularly curious that Robert F. Kennedy Jr. continues to blame autism on childhood vaccinations, since as autism diagnoses exploded, childhood vaccination rates receded.

The chart below, also provided by the CDC, illustrates the rise in number of vaccine exemptions requested and granted during the same period.It is important to note here that valid medical exemptions (allergies to eggs, or some other sort of complication) have remained relatively static, while basic refusal of parents to vaccinate their children increased. So as vaccination rates decreased, autism diagnoses increased.

In RFK Jr.’s twisted logic, wouldn’t this serve as an indication that a reduction in vaccination rates increases the likelihood of developing autism?To be clear, that would be an absolutely insupportable theory of the case, but just as insupportable is his belief that vaccines caused autism to begin with.Why the decrease in vaccination rates? Because a group called “Autism Speaks,” who falsely claimed that they could cure autism, alleged in 1998 that childhood vaccines cause autism.

This allegation was based on the now completely discredited claims of Andrew Wakefield, a British quack, who falsely linked the MMR (measles, mumps, and rubella) vaccine to autism. According to Time Magazine, “The paper eventually was retracted by the co-authors and the journal. Wakefield was de-licensed by medical authorities for his deceit and ‘callous disregard’ for children in his care.

”Robert F. Kennedy Jr. has spent the past 27 years amplifying this grotesque betrayal of basic science.

Part of the problem, in the beginning, was the DSM-IV’s criterion that autism had to be identified by the child’s third birthday. Guess what else typically happens by a child’s third birthday? Vaccinations. But the mere fact that two separate events happen to occur within the same time frame doesn’t mean that one event causes the other.

Adjacence doesn’t imply causation. I recently caught a cold during my spouse’s birthday. Her birthday did not cause my cold, and my cold did not cause her birthday.

They just happened to occur within the same window of time. In other words, sometimes stuff just happens, coincident but unrelated.Although the DSM-5 jettisoned the “diagnosis by 3 years of age” criterion in the DSM-IV, the false correlation between vaccines and autism had already been made by Kennedy and his ilk, and they have continued to pursue this faulty and dangerous misinformation campaign throughout the intervening years.

A final feature in the steady rise in autism diagnoses is parental demand. It is an interesting phenomenon, because there is a certain subset of parents whose children are behaviorally dysregulated at home but relatively well behaved at school. This is because school provides structure, predictability, routine, consistent behavioral expectations, and consistent consequences for bad behavior.

The parents who demand autism diagnoses for their children have often been stymied as to how to provide those same building blocks for good behavior at home.While still practicing, I pointed out to a number of parents that, even though they had decided to auto-diagnose their children via internet search (always a mistake, by the way—I have diagnosed myself with every illness known to mankind by looking up symptoms on the internet when in reality I had no illness at all), autism is neither elective nor selective; it is not possible to be autistic at home but not at school. If you have autism, you have autism everywhere; your presentation is relatively consistent across environments and settings.

We have seen a particular explosion of problematic home behaviors impacted by a variety of potential parental challenges: drug use, perhaps; or the advent of “gentle parenting,” the theory of which is to negotiate and collaborate with your child instead of disciplining them; or that parents are simply too busy and too stressed with their work lives to provide the level of consistent structure and behavioral correction that children need to feel secure. Because of this, there is now a very high demand for in-home behavioral healthcare for out-of-control kids.But such services are expensive, and insurers will only underwrite in-home behavioral health services for students diagnosed with autism.

Sadly, I have seen an increasing number of false autism diagnoses for the purpose of duping insurance companies into providing home-based services for naughty children. I was completely horrified when, within the context of a particular meeting, a participating pediatrician, hearing that there was no finding of autism, gave a false diagnosis anyway to facilitate payment for a behavioral home health aide.Let’s be unambiguous: This is insurance fraud and of course only serves to increase the number of children diagnosed with autism.

And if this particular practice is happening in the Berkshires, it is undoubtedly happening everywhere.So today, I have a request: Please vaccinate your children unless they have a specific allergy to vaccines. Vaccines will not give them autism but will prevent them from dying of preventable illness.

If you live with a particularly difficult child, abandon “gentle parenting” practices—they might work perfectly well for children who are compliant by nature, but they are not appropriate for extremely challenging children. Those children do best with unassailable boundaries, consistent reinforcement of preferred behaviors, and consistent consequences for misbehavior.Never negotiate with terrorists—you give away your authority and your power, and why anyone would sacrifice their parental power to an out-of-control six-year-old is beyond me.

Your children need you to run the show. They like it when you run the show. If you have a challenging child at home, take back your power and do not look to psychologists for false diagnoses.

Taking kids who have no autism out of the autism pool may be a good first step to addressing the prevalence problem..