The Autism Mom is an infamous villain in the autistic community. We love to make fun of her, to write angry think pieces about her, to fight her on Twitter.
We are outraged that she wants to cure or fix her children, that she supports Autism Speaks, that she blames autism on vaccines and tells us how to refer to ourselves.
Some Autism Moms support abusive therapies and fringe, dangerous treatments. Some Autism Moms are murderers.
It’s upsetting, but I also understand that no Autism Mom is an island. So I couldn’t help but wonder: Why is she like that? Who hurt her?
History tells us that the Autism Mom is a product of social forces, and she’s not alone; she is joined by the rarely-discussed Schizophrenia Mom and the somewhat new-on-the-scene ADHD Mom, all of which advocate for biomedical models of disorder and treatment for their children, and all of which built powerful lobbying organizations like Autism Speaks, NAMI, and CHADD to do so.
To understand where these parent advocates came from, we have to go back to the beginning of the 20th century, when conceptions of mental illness were first formed.
The early psychiatric institution in the US, bankrolled by the Rockefellers, located the cause of mental illness in the individual, and looked to the family for clues as to how it developed.
They did this to avoid addressing large-scale social issues that caused distress — it was easier to frame everything as a personal problem, to “cure” people and return them to their roles as “productive members of society”, without ever questioning what role that society played in their mental health.
The early days of psychiatry were also marked by the Freudian concept of psychoanalysis, which reigned in the field for most of the last century. For Freudians, all mental conditions were caused by adverse reactions to events in the first few years of life.
This meant if your kid was schizophrenic, it was because you came from a “schizophrenogenic family”, and specifically, it was because you had a shitty mom.
World War 2 complicated everything further. Men were coming back from war psychologically damaged, and the women who had gone to work in factories in their stead were resistant to return to their roles as housewives.
This led to a moral panic about masculinity, and who got blamed for emasculating their sons and husbands? Not the fear and trauma of war and widespread social upheaval, nope, it was moms!
Mothers became the scapegoats for all kinds of social ills. In her book Autism and Gender, Jordynn Jack details the “stock characters” that society constructed to blame.
The smother mother was a middle-class white mom who read too many parenting books, and whose overprotectiveness literally drove her children into “schizophrenic reactions” (autism was called “childhood schizophrenia” back then).
Leo Kanner’s refrigerator mother was a cold career woman who “lacked the emotional skills necessary to raise children”, and allegedly turned her kids autistic as a result.
The brains of mothers did not escape this post-war period unscathed. Pharmaceutical companies started marketing tranquilizers to housewives, hoping that if they chilled out the overbearing moms that were supposedly causing all these psychological disorders, perhaps society would benefit.
Thus, “Mother’s Little Helpers” drugged moms for the good of America.
It’s important to note that the archetype of the Autism Mom was not universal; she was specifically middle or upper class and white. (Psychoanalysis, after all, was for the privileged.)
Psychiatric diagnoses were originally based in class and race — rich white families had psychological problems because of “reactions” to the mental stress of being “civilized”, while poor and racialized families were considered “feebleminded”, their disabilities based solely in bad genes (Never forget: the history of psychiatry is also the history of eugenics.)
Poor moms and mothers of color saw their kids labelled “emotionally disturbed” and were denied services altogether. The idea that autism was something that only affected white middle-to-upper-class families is one that persists to this day, and causes autistic children of color to be underdiagnosed and struggle to access support.
Autism Moms Take Back Their Stories
With the entire world accusing these white, well-off moms of causing their child’s disabilities, they desperately wanted another answer.
Enter: the 1967 Autism Mom Memoir The Siege by Clara Claiborne Park, one of the first of many of these kinds of books that would offer moms a different story.
Park took the refrigerator mother villain and turned her into a hero, a mom that was battling to save her child from “the fortress” of autism. (This is where we get the trope about children being “trapped” inside their autism, an idea previously presented by problematic child psychologist Bruno Bettelheim’s book The Empty Fortress.)
This book inspired a generation of Autism Moms to reframe their personal narratives, and the advent of Applied Behavior Analysis (ABA)— still the only therapy most health insurance companies will cover for autism, but which most autistic people consider to be abusive — gave them a new weapon with which to fight the “enemy” of autism.
Jack points to the character of the “Total Mother”, a product of neoliberal shifts in healthcare that made citizens, and not the state, wholly responsible. Total Moms were expected, then, to become experts in medicine, education, child psychology, you name it — the Total Mom had to do it all.
This is a common narrative we see in the memoirs of Autism Moms. Doctors can’t or won’t help them, so they have to become their own experts on autism, implement their own treatments, and even become their child’s own personal ABA therapist. This is framed as a virtuous endeavor, an “Autism Super Mommy” saving the day.
Meanwhile, in 1965, Bernard Rimland, a psychologist and parent of an autistic child, founded the Autism Society of America with Ivar Lovaas (the man who developed ABA) to advocate for a biomedical approach.
Autism Moms suddenly had a new narrative that absolved them of blame, and an official organization for support.
The Biomedical Shift
Something similar happened with the parents of schizophrenic adults in the 1970’s.
When patients were released from institutions en masse in the 60’s, due to an idealistic but under-funded and ultimately failed plan to shift care from state institutions to community-based clinics, many parents of schizophrenic adults were left having to care for their kids with no support, in addition to being saddled with a whole ton of guilt for supposedly causing their conditions in the first place.
Remember how I said Freudian psychoanalysis was the name of the game for most of the 20th century?
By the late 70’s this was shifting, and biological psychiatrists were looking to take over. Their mission to shift psychiatry toward a more “legitimate” biomedical approach focused on genetics and neurology aligned perfectly with these parents’ needs.
In her book Mind Fixers, Anne Harrington writes:
“The families, keen to be absolved as the toxic source of their children’s illness, could not have been more receptive to that mission. Biology, both groups were realizing, was a road to redemption not just for psychiatry but for families.”
Many of these parents, with the support of bio-psychiatrist Herbert Pardes, director of the National Institute for Mental Health, joined together to form the National Alliance on Mental Illness (NAMI), which today is one of the most powerful biomedical advocacy groups for mental illness in the United States.
The advocacy group CHADD was formed by parents of children with ADHD for similar reasons.
In the mid-90’s, a PBS documentary exposed that they had received $1 million in funding from the makers of Ritalin — no small revelation, considering the group had successfully lobbied the DEA to “loosen controls on Ritalin production” and pushed the Department of Education to put out public service announcements on ADHD that were essentially ads for Ritalin.
The Autism Mom’s love of fringe treatments is infamous, but the Schizophrenia Moms of NAMI also turned to alternative medicine. Still deeply hurt by and skeptical of the medical system, they tried giving their kids massive doses of B vitamins in the 1980’s, according to Harrington.
This deep distrust of the establishment combined with the job of being a Total Mom Expert resulted in parents who feel more comfortable with alternative medicine and laid the foundation for anti-vaccine ideas to take hold.
Rise of the Anti-Vax Moms
In the 80’s, Americans started suing pharmaceutical companies for diphtheria-pertussis-tetanus (DPT) injuries and winning large settlements.
Lawsuits became so prevalent that insurance companies stopped wanting to insure vaccine producers — by 1984 only one company was still manufacturing the DPT vaccine.
The US government, realizing they could have a serious public health shitshow on their hands, passed the National Childhood Vaccine Injury Act in 1986, which made it illegal to sue a pharmaceutical company for a vaccine injury.
To appease insurers, the government took on the risk, setting up the Vaccine Adverse Event Reporting System (VAERS), and a special vaccine court where people could go to present their vaccine-injury cases and be compensated.
Across the pond in 1998, Andrew Wakefield published his infamous study on the MMR vaccine, claiming it caused “leaky gut syndrome”, which in turn caused autism.
It took several years before journalist Brian Deer discovered the damning conflicts of interest Wakefield failed to disclose — that his study was paid for in part by lawyers who wanted to sue vaccine companies on behalf of — you guessed it — Autism Moms.
The paper was pulled and Wakefield lost his license, but the damage had been done.
In 2001, the anti-vaxx movement got more fuel. Jack explains how the founders of the group SafeMinds (also Autism Moms) published a paper in a pseudoscientific journal called Medical Hypotheses that claimed autism was caused by mercury poisoning.
All the paper really did was compare similar symptoms of the two, but it was written in scientific language that made it look legit to anyone who wasn’t a researcher.
When it made the rounds in autism parent groups, this tricky faux-study converted a lot of unsuspecting moms.
This points to another social issue that often gets blamed on individuals — we don’t teach people media literacy in the US, which means many people (but especially the older generations, who did not grow up looking at the internet every day) don’t know how to discern if blog posts, articles or studies are factually sound. This makes people extremely susceptible to propaganda and pseudoscience.
Add in the fact that social media platforms actually promote fringe, conspiracy content because it keeps people engaged longer, which generates more ad dollars, and you have a perfect storm for movements based in weak evidence and faulty claims to proliferate. (see: Qanon)
Jack notes that language is an important tool in the anti-vaxx movement, too.
Mothers latched onto the very American values of individual choice and private rights, blending their Total Autism Mom Expertise with their “science facts” and their righteous civic duty to save America’s children to present an emotionally-charged argument against this new enemy in the Battle with Autism, The Vaccine.
The Limits of Blaming Biology
Many parent advocates love the biomedical model because it’s an easy answer in an absurd world that takes the blame off their shoulders and gives them enemies to fight.
But instead of blaming families, it locates that blame within the bodies of autistic people.
People often turn to the biological model of mental conditions because they think it will relieve stigma. Nancy Andreasan’s 1984 book “The Broken Brain” popularized this notion; she believed that if people just understood the biology of things like schizophrenia, they would be more accepting.
Andreasan may have had good intentions, but as anthropologist Roy Richard Grinker points out in his book Nobody’s Normal, stigma isn’t caused by ignorance.
Stigma happens when someone fails to live up to a society’s notion of the ideal person, and in our capitalist society, that means the ability to support yourself financially.
We can see this in the fears of Autism Moms: they worry that their child will never be able to get married, work a regular job, and live on their own. They fear the stigma of having a child who has to live with them for life, this deviation from what Western individualism accepts as normal and good.
You can educate people all day about biology, but unless we change the way we value humans, stigma will remain.
Grinker says that when we blame the broken brain, “we risk providing reasons to fear that person, to see them as permanently damaged; it is the person’s brain, and not the social context, that needs to be fixed.”
The biological model is seductive because it’s a simple answer to a complicated issue, and it doesn’t require any major changes to society as a whole. But what parents are doing when they adhere to this model may actually be worsening stigma against their children, not alleviating it, and on top of this, they reinforce the ableism that denies them support and services.
I have hope that we can shift this blame off moms, off the brains of disabled people, and put it on the system where it belongs. We can demand accommodations and acceptance.
Moms don’t have to feel like the tortured protagonist in an epic quest against “the fortress of autism” anymore, and we don’t have to be enemies. Many Autism Moms are also autistic, after all, and many autistic people are also moms.
As Jim Sinclair said in the seminal autism rights text “Don’t Mourn for Us”:
“This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support.
Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it — and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be.”
Further Reading:Autism and Gender by Jordynn Jack
Mind Fixers by Anne Harrington
ADHD Nation by Alan Schwarz
Nobody's Normal by Roy Richard Grinker