The neurodiversity community has a lot to learn about autoimmunity. Too many neurodiversity proponents refuse to examine current research pertaining to autism and other neurodivergent states. At first I thought this rejection of new research and theory represented a calculated ignorance and hostility reminiscent of the Catholic Church’s response to Galileo’s argument for heliocentrism. But recently I realized neurodiversity activists’ rejection of science is much more insidious, and more closely resembles the attitudes of climate change deniers. Certain neurodiversity activists like science–until they don’t. There’s a constant appeal to old, discredited, Wakefield-era junk ‘science’ accompanied by a blatant refusal to look at what real science has unearthed regarding autism and other neurodivergent states in the years since Wakefield’s research was shown to be fraudulent.
Rejecting 20-year-old fake studies is all good and well, but pretending that ends the conversation about the etiology of neurodivergence is absurd. New research into the role of the microbiome or gut microbiota of people considered to be autistic reveals new insights into one neurodivergent condition. We are learning more and more about how the microbes in our environments can affect our behavior as human beings. In the context of this new information, it is a somewhat nonsensical proposition to insist that environmental triggers play no role at all in the manifestation of behaviors that are currently described as autistic.
Many neurodiversity proponents, like climate change deniers, practice a tedious exercise of reject and divert when confronted with new evidence. The first line defense against new science goes something like this, “Why are we looking into causes of autism? We know it’s genetic. We know autistic people have always been around. We need to spend more on supporting autistic people, not on trying to learn the cause(s) of autism.”
A sensible person would counter with, “We as a society still pursue medical research into the neurology of neurotypical people, so that they may benefit from that knowledge if something goes amiss with their brains. It isn’t fully understood to what extent certain neurological conditions such as Parkinson’s or Alzheimer’s are genetic or environmental in the general population. Those questions are still being answered. Shouldn’t research into autistic brains likewise be investigated?”
In many ways, we are still in the beginning stages of human neurological research. Consider that far less is known about the female brain than the male brain. Are you surprised by that? Did you assume that brains identical regardless of gender? They aren’t. We are at a point in history where we need more research into the gender-specific ways brains respond to injury. So it is logical that we would also want more research into what makes autistic brains different. Autistic people who sustain concussions or end up affected by conditions like multiple sclerosis may end up presenting very differently from neurotypical people affected by the same conditions. For our ongoing health and maintenance, it is clearly a good idea to establish a baseline understanding of autistic brain differences.
After this question is answered, neurodiversity proponents stall and then divert. “But if you say neurodivergent brains are neurodivergent because of how they’ve been affected by the environment, medications, vaccines etc., that hurts our feelings. We don’t want to be called damaged. We’re just as fully human as anyone else.”
That response, while evading the original point, is a very valid concern. When people start talking about neuroscience, the real human beings behind the concept of autism or other neurodivergent states often get overlooked. Autism isn’t simply a condition. It is the essence of how many real people, with real lives, and real feelings identify. Most humans don’t want to be regarded as defective, and rightfully so. Despite our differences or the etiology of our differences, we all have inherent worth and are worthy of equal treatment, respect, and dignity.
Autistic and other neurodivergent people are justifiably concerned that if science discovers that their neurodivergent states are due to the impact of environmental triggers, or the intersection of genetics and environment, neurotypical people may then jump to the conclusion that they are somehow less than fully human. But that problem has nothing to do with scientific research–it has to do with history and ethics.
As a species, we have seen many devastating eras when eugenics and attempted genocides were carried out. The consequences of these atrocities cannot be overstated. When the people who hold the most power decide that some groups of people are less human than other groups of people, it can result in the worst horrors humankind is capable of.
But the correct response to historical horrors isn’t to bullheadedly reject science that reports some neurodivergent people are different because of autoimmune reactions. The solution is to reinforce that the reason for our differences is relevant in medicine but irrelevant in ethics. All humans, regardless of our neurological status, or reason for our neurological status, are still equally human and as such, are equally deserving of all inherent human rights.
So we return to our original point. The neurodiversity community needs to understand that autoimmunity can play a big role in neurodivergent states. The issue we need to examine isn’t whether adverse autoimmune mediated reactions to medications, vaccines, and other medical or environmental triggers are legitimate. Valid and current science demonstrates they are. The issue lies the conflation of these autoimmune processes with congenital autism, which I want to distinguish from autistic states resulting from environmental causes, which I will call pseudo-autism.
According the cdc.gov website, the DSM-5 criteria for diagnosis of autism include persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by the following 3 symptoms: 1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure to normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction. 2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures. 3. Deficits in developing and maintaining relationships appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social context through difficulties in sharing imaginative play and in making friend so an apparent absence of interest in people.
Two of 4 of these additional symptoms must also be present or have been present historically: Stereotyped or repetitive speech, stereotyped or repetitive motor movements, stereotyped or repetitive use of objects, excessive adherence to routines, ritualized patters of verbal or nonverbal behavior, or excessive resistance to change; highly restricted, fixated interests that are abnormal in intensity or focus; hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment.
The symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies late in life). Symptoms cause clinically significant impairment in social, occupational and other important areas of current functioning, and these disturbances are not better explained by intellectual disability or global developmental delay. It is acknowledged that intellectual disability and autism frequently co-occur.
Clinicians are asked to report if their diagnosis of autism is associated with a known genetic condition or environmental factor.
It is well known that people with autoimmune disorders often go years before getting correctly diagnosed. If over the course of those years of misdiagnosis a child were to be called autistic, when they were actually having a neuropsychiatric reaction or a dysregulated immune response, we find our answer as to how and why the vaccine, medication, and environmental triggers for autism debate persists. Because the truth is the vaccines, medications, and other substances that are lifesaving, helpful, or completely innocuous for many people cannot be tolerated by a minority of other people.
I suspect the culprits behind the mischaracterization of medical injuries as congenital autism are conditions like pediatric acute neuropsychiatric syndrome (PANS). According to the Stanford Medicine Department of Pediatrics-Division of Allergy, Immunology and Rheumatology website, PANS is a clinical diagnosis given to children who have a dramatic – sometimes overnight – onset of neuropsychiatric symptoms including obsessions/compulsions or food restriction. They are often diagnosed with obsessive-compulsive disorder (OCD) or an eating disorder, but the sudden onset of symptoms separates PANS from these other disorders. In addition, they may have symptoms of depression, irritability, anxiety, and have difficulty with schoolwork. The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions.
Most clinicians and laypeople are at least somewhat familiar with the diagnostic concepts behind autism, but I suspect many have never heard of PANS. And this opens the door to a significant problem. When a child who has been reaching standard milestones of development has an acute inflammatory response to a medication or vaccination, the child’s subsequent behavioral changes are sometimes erroneously characterized as acute onset autism by clinicians who are unfamiliar with PANS or similar conditions.
PANS isn’t the only process that can cause behavioral changes in children. Other autoimmune mediated mechanisms can cause manifestations of behaviors that have commonalities with behaviors observed in autistic children as well as autistic adults. There’s PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections), autoimmune encephalitis, systemic lupus erythematosus, Epstein-Barr virus encephalitis, and rheumatic fever.
Most of these conditions aren’t very controversial in and of themselves, but when children or adults affected by these dysregulated immune responses are diagnosed with autism after autoimmune episodes, simply because they went to a mental health professional instead of to a skilled and currently educated neurologist or immunologist, we end up with a big ugly problem.
We end up with the persistent notion that viruses, infections, medications or vaccines can cause autism. And despite piles of research indicating that they can’t, people who have witnessed such injuries will insist they can because their child has been professionally diagnosed as autistic when the child actually had PANS or something like PANS. I think we should call post-infectious or environmentally induced neurological changes to neurotypical children pseudo-autism to distinguish them from congenital autism.
A recent study demonstrated a temporal association of some neuropsychiatric conditions such as OCD and ADHD with vaccination in a sample of children and adolescents. Neurodiversity advocates cannot not bury their heads in the sands of denialism in the face of such research. Logical people have to accept science. The focus should be on rejecting the conflation of neuropsychiatric autoimmune and inflammatory conditions with congenital autism, rather than embracing the false notion that all modalities of modern medicine are benign agents to the brains of all people.
To distinguish congenital autism from immune mediated neuropsychiatric responses, the diagnostic criteria for autism need to change. New criteria would need to exclude any circumstances of acute onset of autism like states associated with genetic, immune, autoimmune, or environmental factors. The DSM would have to define autism as an exclusively congenital condition and use other diagnoses to describe the onset of pseudo-autistic states. If that doesn’t happen, autism will continue to be associated with manifestations of immune or autoimmune responses, and autistic self-advocates will continue to gaslight and deny the legitimate experiences of people like me who have lived through the reality of having neuropsychiatric changes due to statistically unusual autoimmune events.
But in the context of how little we understand about autoimmunity, as well as autism and other neurodivergent states, the difficulty in distinguishing congenital cases of autism from autoimmune conditions that result in pseudo-autism will continue to fuel the vaccine, infection, and environmental trigger debate. Our responses as autistic people to that misunderstanding should be informed rather than ignorant. We need to be aware of these diagnostic dynamics so that we can advocate for ourselves as rational people, rather than people who reject facts and evidence.
Neurodiversity proponents also need to recognize that there are people who have pseudo-autism due to autoimmune responses in our midst. Should they be welcomed as cousins who share many of the same challenges that autistic people experience, or will they be refused community? Will their adverse reactions to medications and vaccines be denied and politicized? That sort of rejection and othering would be roughly equal to standing on the side of those who call them lesser beings? Or will advocates be wise enough to see through the manipulations the creators of the DSM have orchestrated and embrace people on the basis of common struggles, rather than nuances of diagnosis or the mechanisms underlying the challenges we face?
Congenital autism is a natural neurodivergent state. Congenitally autistic people view the world differently than neurotypical people, so we bring a lot of unique contributions and insight to the table of humanity. Congenital autism can be disabling because of larger society’s rigid behavior requirements, but it is not inherently disabling. Pseudo-autism is an environmentally mediated change to an originally neurotypical state, which means it can also be disabling but might not also be accompanied by the inherent autistic gifts you find in congenitally autistic people. This does not make pseudo-autistic people lesser in any way, it just means they have a unique psychological profile.
In my case I’ll clearly state–I’m autistic. Congenitally autistic. I was born different. Incidentally, my abnormal immune responses were recognized when I was a child, but my autism was not likewise identified, due at least in part to evolving diagnostic criteria, my gender, my ethnicity, and the lower prevalence of neurodivergent children in the 1970s and 1980s. Due to my odd immune characteristics, I was not vaccinated until age 5–two years after I showed clear signs of autistic behaviors. I am living proof of a case where autism preceded vaccination.
However, in 2014, my abnormal immune responses did change my brain. My responses to a series of medical events made my behaviors more autistic. At age 38 I experienced a regression to autistic behaviors I hadn’t experienced since my childhood, such as involuntary vocalizations and an urge to bang my head. In the context of my experience I do not deny the possibility that environmental agents can change the extent to, or manner in which one experiences autism. Perhaps we need a third term to describe a state like mine, where a congenitally autistic person becomes more or differently autistic due to environmental stimuli. Whatever label we settle on to describe experiences like mine, I will embrace anyone who asks for my support in learning how to navigate life successfully with a brain difference. I will not turn my back on someone whose brain is neurodivergent due to a different etiology.
To be clear, I am not wholly against vaccines, medications, or most modalities of allophatic medicine. For the vast majority of people, they can prevent or help cure potentially deadly diseases. But a small number of real human beings such as myself have adverse and inverse reactions, and the validity of our experiences should not be dismissed or denied. If we are to embrace neurodiversity, we should be ready to embrace immunodiversity also.