When Modern Medicine Made Me More Autistic

Twilah Hiari
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Love and acceptance feel good.

The Engagement

When I realized in 2016 that the diagnostic label of autism described my experiences better than any of the diagnostic labels I had been offered in the past, I was excited. I reached out and found a community of autistic people who approached the world with a perspective a lot like mine. I experienced a feeling of kinship I’d never known before. There were people like me! Thousands of them. Luminous, insightful, amazing people. It felt beautiful. It felt liberating. I embraced my new diagnostic label and I also reached out to embrace ideas of autistic self-advocacy and self-determination.

The Romance

I sought out pieces written by autistic adults describing their lived experiences. With each word I read, I relived decades of my own awkwardness and alienation. I saw my struggles with communication reflected in powerful verse. I felt the pain of perpetual misunderstanding ripple from the essence of the writings illuminated on my Kindle. The descriptions of lifetimes of interpersonal challenges mirrored mine. Our souls were identical. I felt I would never be alone again.

I wish this moment could last forever.

The Wedding

I transformed the focus of my writing from criticism of health care culture to autistic advocacy and awareness. I knew I was doing the right thing. I offered the best I had to my new relationship. I set everything else aside and offered my voice to the autism community’s shared objective of self-definition. And my new community embraced me back—for the most part. There were a few voices that rose up and criticized me for being too anti-Pharma. She’s too anti-psychiatry, they said. This feels like pill shaming, they said. I’m mentally ill and autistic and those pills saved my life.

Those voices were young. They were voices from a new generation. I thought that maybe the young voices didn’t understand that in the not-so-distant past, most autistic people didn’t grow up fighting for recognition of our full humanity in the context of living with autism diagnoses. Many people roughly 35 and older grew up exhibiting autistic behaviors that got us beaten, locked up, and drugged—we were called lots of things, but we weren’t called autistic. Consent or access to medication was not part of that equation.

Love isn’t supposed to invalidate.

Denial

I told myself to be patient. I told myself that if I built relationships first, then autistic people would listen to my story and understand how complicated things really are. I hoped that the effort to learn and understand that I had extended to the other autistic people would be reciprocated. And it was—up to a point.

You see, most of the autistic community is very vigilant in its refusal to view autism as an injured state. And I understood that. I think the gifts that come with congenital autism are beautiful. I’ve found that most of the autistic people with whom I interact are brilliant and creative, original and bold. It was that love of the autistic people I met that led me to embrace my diagnosis. But in this modern world I think we’re dealing with two distinct entities. We see both congenital autism—a neurodiverse state that has been part of humanity for most of recorded history—as well as states I call pseudo-autism, which are in fact post-infectious or environmentally induced injuries to neurotypical people. Congenital autism comes with a host of gifts. People with pseudo-autism may have gifts as well, but the gifts are often overshadowed by challenges. Pseudo-autism is a product of modern industrialized environments. Congenital autism is universal.

And the truth is that I had been injured. I had been damaged. And that damage made me more autistic—perhaps even pseudo-autistic. And I hadn’t wanted to be more autistic. It made my life harder. I lost my ability to do many of the things I had previously been able to do incredibly well. I lost everything inside my mind that was familiar to me.

I’ve told the story of my injury before, but it wasn’t until very recently that I understood how all of the events contributed to the outcome I had described. I knew that in 2014, while undergoing misguided psychiatric treatment for premenstrual dysphoric disorder, I experienced several brain changes. After the changes I lost my ability to speak, read, and write. As weeks and months passed, I slowly regained those abilities, but I no longer had a mastery of them. My sensitivity to sound became so profound I had to wear earplugs and earmuffs in my own home. My ability to get meaning from speech when there was background noise plummeted. My physical anxiety and need to stim was intensified. And I concluded, based on the information available to me at the time and the feedback from the neurologists and audiologists I had seen to date, that my brain changes or injury had been due to psychiatric medication use and electroconvulsive therapy. Intracranial hypertension or elevated cerebrospinal fluid pressure in my skull also changed the way my brain worked.

While all of that is true, I now know that it wasn’t the whole story.

An insightful immunologist recently taught me about something called the microbiome. The microbiome is the ecosystem of microorganisms—viruses, fungi, bacteria and protozoa—that live in and on our bodies and the bodies of all multicellular organisms. Our microbiome can change rapidly, sometimes adapting in ways that facilitate greater health, sometimes becoming so impaired that it promotes devastating autoimmune reactions. Lots of things can affect our microbiome. Nutrition, eating habits, stress, the people we live with, the pets in our homes.

My already tenuously functioning microbiome was destroyed in 2014. First by a series of antibiotics, then by a Clostridium difficile infection, and then by multiple rounds of vancomycin I swallowed in an unsuccessful attempt to treat the infection. And while my gut was being gutted, I was also exposed to a hormone agonist and an array of psychiatric drugs. I took volumes of SSRIs, antipsychotics, anticonvulsants, and tri-cyclic antidepressants in an attempt to keep the PMDD from killing me. I initially believed my brain changes had come about because I couldn’t metabolize those drugs due to genetic mutations.

But that too turns out to be only part of the story. Once a person’s microbiome is compromised, their ability to effectively metabolize drugs is impacted as well. Depending on their composition, the microbes in our guts can render drugs more effective, or more toxic. But what was the crowning event in this series of brain-changing episodes? In September of 2014 I had a fecal transplant to cure my C. difficile infection—and my transplant donor was the picture perfect representation of the condition formerly known as Asperger’s syndrome. You see, we share our microbiome with the people, animals, and objects we live with and encounter, and there’s no more direct way to assimilate someone else’s microbes than through a fecal transplant. Experiments on mice have demonstrated that after fecal microbiota transplants, recipient mice take on the behaviors of donor mice.

So, in 2014, after all of these changes to my microbiome, I experienced what I believe to be an exacerbation of my autism, rather than—or perhaps in addition to—a brain injury as I have previously described. I may never be able to know precisely where effects of the brain injury end and the effects of the microbial changes begin. The changes to my brain felt like an exacerbation of my autism when they happened, but my newly beloved co-autists persuaded me not to think of it that way. Posts I made in autism forums referring to studies linking autism to the neuroinflammation and immune dysregulation I had good reason to believe I was experiencing were promptly deleted. That topic was off-limits and my voice was censored. To make such a claim was to undermine autistic peoples’ mission to characterize autism as an inherent condition that exists and persists independently from immunological and environmental influence.

Bargaining

Research is uncovering relationships between behaviors characterized as autistic and certain microbial states. Most autistic people don’t want to hear this. Many view it as a threat to the notion of neurodiversity as a phenomenon that has existed with unchanging frequency since the dawn of time, rather than an anomaly that is increasing in modern industrialized environments. Others fear it may fuel more abuse against autistic children.

I understand those fears. Whatever the etiology of autism, I think autistic people should be embraced and accepted as we are. There is also a very real basis for worrying that parents of congenitally autistic or pseudo-autistic children might badly harm them in misguided attempts to “treat” or “cure” a condition that is not exclusively or inherently negative. I imagine that if I had been born with the degree of autism I experience today, I wouldn’t view my newly limited state negatively, because I wouldn’t have experienced a loss.

I will point out that those concerns are distinct from the fact that my microbiome was disrupted by modern medicine in 2014, and as a result I became more autistic. Among my losses are the fact that my exacerbated autism does not permit me to tolerate ambient sound in the ways I used to. The exacerbation of my auditory processing disorder does not allow me to hear as well as I used to, making me functionally deaf in environments with poor acoustics or multiple speakers. I can no longer work in any of the environments I previously worked because of my enhanced sensory issues. Because of other cognitive limitations that can onset with sensory events, I can no longer even live independently, and may never be able to live independently again.

Those are losses and I grieve them. And I will not accept being silenced when I report the truth of what happened to me. If some autistic people want to cling to a flat earth or creationist type paradigm in an age of transoceanic travel and evolution, I will take my leave from their company.

But I don’t place the blame for my stormy relationship solely on the autistic community. I blame the creators of the DSM. They were the ones who were comfortable cataloguing clusters of behaviors without bothering to wait until the mechanisms behind those behaviors were understood. We’ve seen oversimplified theories of chemical imbalances for depression rise and crash. We’ve seen theories that PMDD is factitious or psychogenic climb and then collapse when research revealed that the disorder is mediated by a gene complex. We’ve seen certain psychoses explained by autoimmune encephalitis.

I think future research will reveal that autism is also more complicated than neurodiversity advocates would like to admit. Environmental factors affecting our microbiomes can very clearly influence the extent to which people’s behaviors correspond with the current diagnostic criteria for autism.

Perhaps we should simply suspend psychiatric diagnostics until science has sorted through the multitude of mechanisms that can contribute to the vastly varied and ephemeral states we find described in the DSM. It’s a somewhat absurd proposition to attempt to treat or cure conditions for which the causes remain unknown. Many of the conditions described in the DSM aren’t even inherently problematic, so shouldn’t even be approached as requiring treatment. I’m beginning to think it’s ludicrous to even continue to try to classify the myriad conditions contained within that text. I even question my decision to describe myself using the diagnosis of autism that was canonized by the American Psychiatric Association.

I’m leaving, but my love remains.

The Break-Up

As for my relationship with the autism community—I’d like a trial separation. I love you too much to ask for a divorce. I’m open to reconciliation if you stop your gaslighting. What happened to me in 2014 is real. It’s documented, and I have witnesses. When you ask me to pretend that my experiences are other than what they are I feel dismissed and dehumanized. I will not suppress the truth to support any agenda, no matter how well-intended.

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32 COMMENTS

  1. My condolences Twilah. I have wondered if I have something akin to Aspergers.

    I actually am great at figuring out social situations and what motivates people. Yet I stink at picking up social cues and am very awkward even in casual settings. I hate small talk but use it like a mask to hide how weird I am.

    I read a lot of quality “literary” fiction. I understand human behavior–but in an analytical way. Like some foreigner talking to natives. I could study French for four years and spend another 10 in Paris. But I would never speak like a native. English will always be my first language.

    For the reasons you listed I don’t self identify as autistic. I see no benefits. The drugs and “therapy” offered do not work.

  2. Given your own experience of profound brain changes and brain damage from ECT, what is your opinion of the increasing use of ECT to “treat” self-harming autistic children? ECT seriously injured Carly Fleishmann, a very accomplished autistic young woman. And yet there are parents writing books on the benefits of ECT for their children. The children aren’t given a voice in these assumptions.

    • truth- I think ECT is just one of the more recent manifestations of inherently damaging modalities that are being tried in attempts to “treat” any neurodivergent behaviors labeled autistic. I think it is child abuse and that anyone involved, practitioners, parents or otherwise should be charged with child abuse.

      The precise mechanisms of ECT aren’t completely understood when it is used on neurotypical people, so to use it on neurodivergent minor children is to plunge headfirst into a clinical experiment that can offer no valid information. If we don’t know how or why autistic brains are different, and we don’t know how ECT changes any brains, then the effect of ECT on an autistic brain is an unknowable outcome.

      But it brings up a really interesting point. We as humans have a long way to go before we achieve a thorough understanding of any brain, neurotypical or neurodivergent, but we have a medical industry that doesn’t hesitate to promote “treatments” for brain conditions that are not at all understood.

  3. I think the “precise” mechanism of ECT is simply extensive brain injury that causes petechial hemorrhages, breeches the blood brain barrier, kills neurons through excitotoxicity, destroys connectivity, etc.
    It is simply a form of barbaric torture that constitutes abuse. It should be banned.
    Your article was beautifully written and because you are such a bright, articulate, and accomplished writer, it must make people question your claims of brain injury and harm at the hands of psychiatrists and medical doctors.
    What were the things you did to help you recover and regain functioning?

  4. Hi Ms. Hari – thanks for writing this, I relate to it a lot as I have both a childhood autism diagnosis (which I ignore as I generally see psychiatric authority as illegitimate) and current personal experience of lots of the things known as the autism spectrum. Would it be okay for me to contact you by email to talk more about this?

  6. Generally speaking I like spending time with people who have Aspergers. I dated a guy with it once. Handsome, brilliant, and rich. I broke up with him because he proved abusive and drank too much. That wasn’t related to his autism though. I would be willing to date an “Aspie” again if I weren’t sick of dating altogether. Too old for the silly mind games single men my age want to play.

  7. Same thing, I have no tolerance for noise. Boom boxes, television especially, loud stereos, loud Muzak that plays in the mall (so I really can’t stand malls), and if I am on the bus I can’t stand the loud conversations. I wish I could tell people the effect their loud cellular telephones have on me. “Please turn off Walkie-Talkie mode!” Why do they do that if they’re not hard of hearing? I have gotten off buses early and gotten on the next bus just to get away! If I live in a home the footsteps up above sound like CRASH CRASH CRASH. That sounds to me like torture. I am grateful forever for insulation. God bless whoever invented it. If the bus engine is loud since that causes the passengers to shout. Screaming kids, especially squealing teenage girls, they are capable of screaming louder than than any human being should ever tolerate. Ear plugs do nothing, unfortunately.

    The solution? I never say anything. I have tried, and it only gets me labeled with a disorder. I have found the the best thing is to get away from the noise, saying nothing. Just quietly leave. I don’t even bother with lengthy explanations that no one will ever understand.

    • I completely understand, that is my exact relationship with sound also. Audiologists in the know would call that hyperacusis, but as you clearly have experienced, others in different branches of the medical profession might be tempted to become much more creative in their labels for what you experience.

      • I think I was always that way. I was not scared of loud noises as a child out of the ordinary, but I am certainly bothered by them. When I was small I complained to my dad about my baby brothers’ screeching voices. He promised me that I was lucky that they were boys because they would grow up and their voices would change. This came true, but I had to wait many years. I recall this story with much amusement. If either of my brothers ever read these words I hope they have a good chuckle.

  8. Yes people jump on those kinds of labels, because they seem to explain and exonerate. But in fact all they do is exonerate abusers. Autism advocates like John Elder Robison and Nick Dubin are idiots and they owe apologies to all of those who have ever been handed such labels.

    There is no such thing as Autism, “Autism does not exist.”

    https://www.amazon.com/Myth-Autism-Medicalising-Emotional-Competence/dp/0230545262/ref=asap_bc?ie=UTF8

    As Timimi and his co-authors explain, the epidemic of diagnoses is caused by neo-liberal capitalism.

    And I explain that the middle-class family only exists because it is expected to exploit children.

  9. Loud noises have always triggered a fight or flight response in me. I grew up in the eighties. Lucky me!

    My earliest memories are of my dad throwing angry temper tantrums and making lots of noise while they lasted. This association of loud noise with parental wrath did not help my problem.

  10. I just wanted to add that “oversensitivity disorder” (which goes by a couple other names, too) does not exist, nor by any of the other names, either. This is a crime in the pop psychology world, mostly done by coaches and the like. I know a few who were taken in by this so badly that upon learning of this “disorder” they then became more “oversensitive.” Oh no! Then, they began “monitoring” their “oversensitivities.” The problem was this made them almost completely unemployable and unable to handle most social situations. It’s very sad. While it’s great to be sensitive, these pop psychology articles and life coaches who call it a disorder are really harming people. All they do is suggest it, then, suddenly, people get hooked on it, monitoring their overreactions and they’ll nearly strangle anyone who triggers them. “I’m special” becomes a label. Ditch the label and you’re recovered and ditch the life coaches, too. And stop acting like people who trigger you are criminals. This article reminds me of that, yeah, how it can all go overboard.

    • In the old days before they took to diagnosing thumb twiddling and nose picking as disorders, people who didn’t like loud noises would simply avoid noisy concerts and similar entertainments. They also would remember this when looking for jobs. Operating noisy equipment all day would make a poor career choice. No diagnosis or treatment needed!

      • This is PRECISELY what I do! I don’t go to loud places. I live in the quietest apartment imaginable and I do not have loud neighbors. I managed to find a low-rent place that actually isn’t near screaming kids nor near a loud bar, nor near a loud TV. I am so, so blessed, I can’t believe it. I don’t go to bars. And if I am on a bus and people start screaming into their cell phones, I move! I really do, I change seats and move from their noise. This sometimes works and sometimes does not, and it MIGHT even give them a hint. I’ve been trying to reach this one bus company to tell them to please enforce the rules but they have not been answering at their administrative offices. My plan is not to say, “I have a disability and…” But simply to say, “If this is the rule, then it should be enforced,” emphasizing respect for all, quiet for the sake of bus driver safety, and for the sake of those that enjoy a reading a good book.

        As for TV, I am sure the noise, not the violent shows, causes seizures in kids and adolescents, never mind the flickering light, also too much noise will probably cause headaches, migraines, and a host of other problems. Toss it out and you’ll solve a lot of problems and save on the cable bill.

        • Too much darn noise everywhere anyhow nowadays! Sensitive or not, I don’t think it’s good for anyone. For those who want noise all the time, they should determine if it’s an unhealthy desire–like drinking too much or gambling.
          Levels of noise pollution are sky-rocketing. But almost no one talks about that kind of pollution.

  11. oh wow, I love this. Pseudo-Autism…I noticed a long time ago in my recovery process from psych drug injury that I had much in common with folks who identify with the autistic label. I always had some manner of these issues but the drug damage put them on steroids, and yeah, added some heinous qualities to the picture. I have to say that while they are indeed challenging and awful at times there are many gifts and I continue to heal from the heinous aspects of it all.

    And yes, gut and microbiome issues are central to that picture. For me early over-use of antibiotics also played a large part as well as later multiple infections.

    Thank you so much for expressing this variant and injury from your experience. I find it very helpful and validating too.

  12. if anyone is interested I did a short little post at beyond meds…it deserves much more but I don’t have the energy to put into it now. I have been noticing similarities with autism for many years…so have some of my friends. of note is one man who works with autistic folks and has this same psych drug injury manifested much like mine.

    the article at Beyond Meds:
    “Pseudo-Autism” as a result of psych drug injury (another consideration in protracted withdrawal syndrome from psych meds) https://beyondmeds.com/2017/04/10/pseudo-autism/

    • Monica- an autistic adult friend and I have come to the conclusion that many of us with behaviors/symptoms that are associated with autism are in the same style of boat, but the boats have different builders. I’m glad you understand the spirit of what I’m trying to describe with the term pseudo-autism.

  13. I’m not even sure Asperger’s and other mild forms of Autism should be considered disabilities. The only major difficulties people with these neuro-variations have are being accepted and respected by those around them. That makes it more of a societal problem than a pathological one.

    I have learned to overcompensate for my different thinking styles. My “thing” seems to be hyperfocus. I’m not truly an Aspie because I can understand human thoughts and motivations very well–better than most people. Still social cues like subtle changes of tone and body language confuse me.

    STEM subjects that would actually pay are not my forte. I am not Dr. Sheldon Cooper off The Big Bang Theory.

    • Ditto. I often have a hyper focus and can be very analytical, but I would rather die than do STEM. I am much more interested in psychology, in a way that combines left brain and right brain in what I feel are the proper amounts. I am interested in the role of attachment in autism-like states (ever since discovering how attachment is – imo – the biggest & most tragically kept secret in human life/psychology/development). Ive recently been made aware of a few works on this autism-attachment connection, which I hope to look into at some pt, including “Arctic spring,” “The Protective shell in children & Adults,” & “Working the Organizing Experience – Transforming psychotic, schizoid, & Autistic states.” (Thanks, Matt S.!)

  14. At first I thought this was going in the direction of intersectionality, criticizing people who say things like “I’m Autistic and mentally ill”, applying critical thinking to autism and nothing else, and as a result throwing the Mad community under the bus. That’s exactly the sort of presentation we need to bring into Autistic spaces, such as at the Association for Autistic Community conference, but that’s not this article.

    What quickly tipped me off that this was going in the wrong direction was the phrase “more autistic”. I was really hoping the title was ironic. To use such a phrase indicates a fundamental misunderstanding of what autism is. In this case it’s not the “autism=toxins” line of thought but rather looking at someone who’s having fewer meltdowns because their gluten-free diet no longer triggers their celiac disease and describing that as “less autistic”. The problem isn’t that cutting gluten wasn’t beneficial, in fact it WAS- the problem is perpetuating the notion of a linear sliding scale of autisticness, and implying that sliding the scale in one direction is automatically preferable.

    The author claims, in a sort of repeated disclaimer-y way, the belief that autism is not inherently bad, yet by conflating disease and injury states with being “more autistic”, asserts the opposite. If “more autism” is intrinsically worse than less autism, then you’re saying autism is intrinsically bad.

    I also noticed that the anti-DSM rhetoric is immediately followed by an assumption that meeting more DSM criteria is the same as being “more autistic”. As with the previous observation, this is a clear case of cognitive dissonance. In fact additional marks on the DSM checklist indicate that you are perceived as more broken or more “severely” disabled, not more autistic. If you define “psychotic” as someone who either hears voices or commits murder, then of course serial killers are going to meet the criteria for psychosis, but only because you wrote the definition that way! If the DSM criteria for autism were accurate, then having unrelated microbial issues would have no effect on how psychiatrically autistic you are.

    • Daniel Au Valencia- I stand by my choice of the words ‘more autistic’. As much as I dislike the fact, right now in the US the DSM is the authority in terms of describing what constitutes autistic. As described in that text, the cornerstone of an autism diagnosis is: “persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays”. I experienced an exacerbation of my difficulties in social communication and social interaction when the microbial changes and interrelated brain changes occurred. Therefore I became more autistic. And yes, my exacerbated autism is bad for me, because I, like most people, live in a society that requires one to be capable of consistent receptive and assertive communication in order to survive, and I lost the ability to both hear and speak consistently. I didn’t mention it in the piece, but I also have visual issues that affect my ability to read sign language, so my access to communication was all around very badly compromised.
      I’m not going to pretend that change was good or neutral–it was negative. I experienced losses that I didn’t want to experience and that I cannot compensate for. I can try to embrace these changes all I want, but that’s not going to pay my mortgage (deficit in social communication in work environments). It’s not going to allow me to attend the meditation teachings I used to enjoy but can no longer understand due to my auditory issues (social communication). It’s not going to let me maintain linear thought when I’m trying to make a simple or complex decision and I’m interrupted by a loud sound (social communication is thereby impaired when I can’t think and respond accurately in all environments). What distinguishes my unhappiness with these changes from the notion of something as intrinsically bad is that if the world were different and full of captions, work opportunities for people who require complete silence, and the blaring music and motorcycle sounds that permeate the walls of my home were eliminated, I wouldn’t have any problems at all. But that isn’t the world I live in, so yeah, my exacerbated autism is bad, not inherently, but because of its implications for the extent to which I can participate in our very acoustically unfriendly society.
      Yes, I would like to see the DSM diagnosis for autism (and all of the other diagnoses contained within that text) be replaced by more empirically verifiable metrics and conditions. But right now the DSM definition is the only definition I can appeal to, despite my criticism of it. I think in the future when a truly scientific system like Research Domain Criteria replaces the DSM, a necessary component of an autism diagnosis will be the presence of autism specific microbes, whatever those turn out to be.