Love and acceptance feel good.
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.
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.
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.
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.
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.
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.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.