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I’m no stranger to lies and conditional acceptance. As a child, my mother insisted my brown skin was white like hers. When I asked her why I saw a brown face in the mirror, she spun stunning tales of a Cherokee grandfather and a mysterious group of forebears called the Black Irish.

Thirty some years later, when I finally gazed upon the brown face of my African-American father, I felt liberated. Vindicated.

I watch my history repeat itself as I interact with adult autistics. After I blogged about When Modern Medicine Made Me More Autistic, I gingerly shared the link to my story with my local Autistic Self-Advocacy Network (ASAN) chapter. I feared rejection and judgment, because my story flies in the face of popular autistic assertions that autism is an exclusively congenital state that exists and persists independently of harm caused by pharmaceuticals or environmental agents.

The rejection and judgment I feared didn’t materialize from my local chapter, but I took some heat from a few autistics around the world. With this post, I’m going to liberate myself from fear of rejection and conditional acceptance and make my position clear.

The notion of historical neurodiversity hurts autistics.

The figures in history whose behaviors allegedly corresponded to what may now loosely be within the bounds of an autism diagnosis—men like Henry Cavendish, Isaac Newton, and Charles Darwin, don’t much resemble the autistics we see today.

These historical figures were reported to be introverted and solitary—their intellects logical and brilliant. They don’t look a bit like today’s “level 2 and 3” autistics who sit glued to screens, earbuds planted firmly in ears because the slightest noise will trigger a meltdown.

Was there a cadre of autistic lesser characters who didn’t make it into the history books? A quiet contingent of autistics who sat rocking in living rooms and classrooms with the same frequency as young autistics today? Any honest person over age forty will answer that question with a resounding no. Any school teacher who has been teaching for over twenty years will say absolutely not.

I’m only 41-years-old, but I can assure you I was the only child with blatantly autistic behaviors at any of the five densely populated urban and suburban high schools I attended. My behavior was so far outside of the norm that staff had no idea what to make of me. They’d never seen a child who acted like me before. I’d become so overwhelmed by my surroundings that I’d opt to sit in hallways rather than enter my assigned classrooms. I’d likewise refuse to enter the cavernous and intimidating cafeterias. In the 80s and 90s, I was the only child like that out of hundreds of children.

At home, I’d sit and throw light bulbs and glassware against the wall of my bedroom. I’d lapse into a meltdown at the least disruption to my environment. At the home of my only friend, I’d hide away upstairs, face buried in a book, because the play of other children downstairs overwhelmed me.

As the years passed, I learned to mask and manage these behaviors, but my act was short-lived. In 2014, when I was in my late thirties, I experienced a series of pharmaceutically induced brain changes. After several adverse reactions to a host of drugs, all of the hallmarks of my autistic behaviors were exacerbated. My sensitivity to sound reached a level of intensity I could never have imagined possible. A disconnect formed between my mental conceptualization of words and my brain and my mouth’s abilities to create speech. Words I wanted to say were replaced by involuntary and repetitive vocalizations.

Meep! Bay! Yes, then now! Yes, then now! Yes, then now! Yep, yep, yep! Say, then now! Meep!

Words and phrases fell from my lips unbidden and uncontrolled. I still spout nonsense at times of sensory overload, exhaustion, or after eating foods I don’t tolerate well. I never made such sounds before 2014.

After my pharmaceutically induced injury, my avoidance of people transformed from a preference to a mandate, and my challenges with eye contact regressed to level I hadn’t experienced since elementary school. Suddenly I had an impulse to bang my head against the wall, another regression to behaviors I had as a young child.

So, do I believe that adverse reactions to pharmaceutical agents can cause or exacerbate symptoms of the condition we currently call autism? I absolutely do. I’ve lived through it. My exacerbated autism was not a naturally neurodiverse state. It was brain damage. I did not consent to it, and while I now accept it, I would never have chosen it.

Prior to my injury, I lived in a place I’ll call the autistic sweet spot, where the strengths granted me by my condition, such as my hyper rational thought processes, overshadowed my primarily social liabilities. After my injury the balance shifted, and my autism became anything but sweet.

My damaged state resembles the types of autism we’re seeing more of today. After my neuropsychiatric injury, I became more anxious and panicky. My lifelong sensitivities—to sound, motion, and light—transformed from manageable to debilitating.

The conditions that made my neuropsychiatric injury possible are genetic mutations that prevented my body from metabolizing several medications, changes to my gut microbes, and an immune condition called Mast Cell Activation syndrome.

If autistics want to bury their heads in the sands of denialism about the etiology of the types of autism that are skyrocketing today, it’s at their own peril. Today, young Aspergerian autistics who personify life in the autistic sweet spot dominate conversations about autism. They celebrate their neurological differences, which they seem to believe exist as entities distinct from the other medical conditions they often live with.

I wonder what these young people will look like at my age—after short lifetimes of gulping down toxic drugs for ADHD, mental illnesses, gastrointestinal disturbances, hormonal imbalances, and sleep disorders they somehow believe have no relationship to their distinct neurological status.

And that says nothing of the autistics who are already like me. The nonverbal, intermittently verbal, or involuntarily vocalizing autistics. Autistics with bodies full of debilitating co-morbidities. Our perspectives have already been pushed to the margins by prominent and successful autistics who romanticize autism, blissfully ignorant of the challenges faced by those of us who are more profoundly disabled.

The autistics who dominate the conversation don’t talk about bladder dysfunction and incontinence. They don’t talk about irritable bowel syndrome and accidents. They can leave their homes without 32 decibel noise reduction rating ear protection. They can live independently, without fear of becoming lost in their own neighborhoods on days when they face profound confusion.

Some rest their high minds behind blog posts that deny the experiences of those who have lived through or watched loved ones live through chemically induced neuropsychiatric injuries. Others sit happily in their parents’ basements, punching controls on PlayStations. They cheer their lack of maturity as a mark of distinction, but avoid discussing what might happen to them when their parents pass away, or the stress their parents might endure when considering that question.

I reject being told that black is white, and that my lived experience is something other than what I see in the mirror. Our modern, toxic environment is hurting those of us with immune system mediated autism, and it’s creating a type of autism we’ve never seen before.

Autistics should be marching in the streets demanding justice and compensation for our injuries, but instead, we’re creating and defending a myth of historical neurodiversity. What a coup for pharmaceutical companies and Monsanto that those who have been most harmed by their wares reject the notion that we’re damaged.

Light always shines through lies, and myths always crumble and shatter. I’ve broken the trauma bond that once led me to buy into lies to gain conditional acceptance.

Today’s autism is not yesterday’s autism.

I believe I was born autistic, and autism as I originally experienced it was sweet. I don’t want to be neurotypical, but I want to live life without a crushing disability. I’m no longer in that autistic sweet spot. I’m injured, and I won’t rest until the truth about pharmaceutically induced neuropsychiatric injuries is told.

Twilah H is a recovering patient. She studied Philosophy with a concentration in ethics at the University of Kansas. Through writing, meditation, relationship building, and quilt creation she has found a place of peace.

15 thoughts on “The Notion of Historical Neurodiversity Hurts Autistics

  1. Wow, your post profoundly affected me. Thankyou for your bravery. I have a son with regressive autism who is 17, still not conversational but able to tell me his needs. He’s so smart and able to learn but everything have to be broken down. He is profoundly affected and his immune system is intimately related to his severity. He has seizures and when triggered they steal the hard fought progress we’ve made, without diet and allergen removal he cannot calm himself at all, he has chronic hives and GI/microbe dysfunctions that all relate to his autism functioning. It breaks my heart when I see the misunderstandings in our community. My child is not the same as those whose functioning level is high. I had a newly diagnosed man at my house in his late 50’s who expressed to me how he felt about finally having a diagnosis. It felt liberating and depressing at the same time because he had felt alone his whole life. But when he met my son it was not at all what he was expecting. It was clear they shared some similarities but it was not at all the same and it was glaring to him as well. It’s a very brave piece you’ve written here, thank you for sharing.

    1. Thank you Allison. I’m beginning to think immune mediated autism, like your son and I have, isn’t even the same condition as the the autism the man you describe has. I wish your son healing. I have hopes that with more research, the medical community will be able to show how these are different conditions. One which benefits from treatment and another that is legitimately neurodiverse and has no need for treatment.

  2. MCAS is common in ASD, it affects so many with autism. It means treatment can help. Thank you for getting the word out so more can be helped.

  3. I believe you. Period. I have had a case where I took one medical pill and it attacke my brain to such a degree, it seemed like I had a stroke! I have a highly sensitive immune myself, that wont tolerate any NSAIDs, Anti-inflammatories, the list is long. May as well say NO chemical drugs. So I believe you. Hands down.
    In that one pill’s case, it was a medical pill to remove yeast, that my doctor feared. One pill was the dose. One pill made my brain scream I AM DIEING!!! When I got through a couple of hours? I could not recall any phone numbers, how to make a call, how to do simple math scared me and much more.
    So, I am into herbals and I knew a very good one for injury to the brain. I took it. I took it heavily for 3 days to get myself back. I managed it. Then I went to see my doctor and told her off like a raging bull! I said the side effects listed include: death. HOW do I come and tell my doctor, how it affects ME, when I am DEAD?!? Haunt you??? You of all people should know the terrible dangers I have, trying to take any medications! I wont EVER touch that med again, for anyone. I have never had such an attack and I never wish to ever have one again. I might not make it next time!
    Do I believe you? Yes. Yes, yes and yes.

  4. Twilah, where have you been all my daughter’s life? Thank you!
    When she was little and profoundly autistic, self-injurious, and my own despair great, I looked everywhere for answers, for help, including an online community of the self- celebrated neurodiverse! I was already instituting diet and some behavioral methods to deal with our life, but I had many questions. I believed they might offer some insight into how my daughter thought and saw the world! I now realize that would be like asking a neuro typical person how another neuro typical person thinks and sees the world, ridiculous!

    I can tell you that that short lived experience was one of the worst in my lifetime, the abuse heaped on me for asking simple questions, the daily accusations that I don’t love my child, the name calling, cursing, and so much more! They were demanding the right to call the shots for my daughter by virtue of simply being Autistic themselves while simultaneously attacking the one person with the ability to do anything for my daughter or not!

    The one thing I discovered while there was that when they weren’t gang attacking any unsuspecting mother looking for answers, they were sharing their own whoes with each other and these were profound life-altering events and feelings! Loss of a job, inability to find somewhere to live, profound disability or ability to cope with the tiniest tasks of everyday life, including long stretches of time being unable to even leave their house! Medical issues and more! So while celebrating autism in comments to me, they were anything but celebratory to each other and this did not go unnoticed by me! I left that damaging and toxic environment where truth were lies and white was purple! Though I carried scars from that for a while!

    I did what most families do for any Illness or disability, I went with my gut, what made sense, what we could afford, and what I felt had little to no potential to damage as much as help! It has been a roaring success! My daughter is now attending our Community College and we are working on some future goals!

    I so wish for you some healing and light at the end of your dark tunnel, you have provided some to me today! Where have you been? I am so glad you are here!

  5. Thank you Allison. I. Elieve that someday the truth will. E obvious to everyone. Real healing can then take place.

  6. Kendra, I think it’s wonderful that you looked to neurodiverse people to try to better understand your daughter. I’m sorry your experience in that online community was so disappointing and hurtful.

    I understand why so many neurodiverse people–especially the ones who grew up with diagnoses that limited their options in life, are so defensive. Many grew up being told their differences were unacceptable and that they were in some way inferior. Now they’re spending hours online emphatically and understandably rejecting attitudes, ideas, and even treatment modalities that were very hurtful to them as children.

    I really hope the neurodiverse community grows in maturity and move beyond the the trauma of rejection and oppression by larger society and into a place where the dynamics surrounding neurodiversity can be considered more objectively. Once we’re at that place, I think we can do a lot to move forward.

    I’m glad your daughter is doing well and working towards her goals. I wish you both health and happiness!

    1. In order for autistics and other neurodivergent people to “move beyond the trauma of rejection and oppression by larger society”, first that oppression has to actually be in the past. Sadly, it’s not – autistic people are still being oppressed and rejected, and often research that is purportedly objective has a tendency to support the status quo. Heck, sometimes people who hire those who work with autistic people (i.e. respite care workers) will explicitly refuse to hire sufficiently qualified autistic people for those roles. That is why there still needs to be pushback against those attitudes – they hurt us to this day.

      And yes, many psychiatric meds can interact badly with autism. For one thing, a lot of the meds that get tested really are not tested on autistics – we’re not considered average, so we are not considered, and if we react weirdly and adversely to some meds (as I did – I should never have been forced on the psych meds I was on, especially since they often put me on those meds as a pre-emptive measure), it is never expected, because the tests were not done in advance to show that the meds may indeed affect us in those various adverse ways. Speaking of which, autism research is a research field that is heavy with bias, particularly bias towards seeing potential “cures” and “causes” of autism, the latter of which often leads to seeing (often specious) links between autism and other things, and those links that are comorbid conditions are simply treated as if it is just autism, when in fact the person may have two or more conditions that interact with each other. Such conditions are not independent – if one is autistic, the autism will cause the comorbid conditions to manifest differently than the same condition would in a neurotypical brain. We see this phenomenon with gender and various conditions too – girls often manifest autism differently from boys, as surely as women don’t get the same heart attack symptoms as men. And since autism likely has at least as big an effect on how a body and mind works as gender does, it is not surprising that autism would have its own unique set of interactions with any other condition the person might have (and yes, I suspect that would include physical conditions like heart attacks). Thus, the apparent occurrence of such things as “immune-mediated autism”, which are really the interaction between two different conditions, autism and a comorbid autoimmune disorder and also PTSD or other trauma disorders combined with autism in conditions that are mistaken for a “more severe” degree of autism. And as long as autism research is focused on trying to eradicate autism, we will not see understanding of these interactions, and we will continue to see neurotypical interactions with various conditions as the default, even though that too is an interaction, in that case between the neurotypical form and the condition the person has. It would really be best if researchers in that field were willing to consider the possibilities of interactions between conditions, and not to use that as an excuse to push getting rid of autistics. I also suspect that autism might sometimes mitigate certain conditions, and make others worse, though the former would tend to go unnoticed because it would simply be seen as the person having a less severe form of the comorbid condition. It truly is a shame the latter (debilitating symptoms being multiplied in interactions between autism and other conditions) is not properly recognized by researchers and medical experts and written off as if it is purely autism, because then the wrong condition is being blamed, the symptoms often not being properly understood or treated: i.e. blaming autism on gut issues in people who do not have comorbid GI problems or food dyes in those who do not have a food dye allergy because someone else’s autistic stress signs (listed as “symptoms”) were reduced as a result of GI treatment because the other person really did have a gut issue, or reduced as a result of food dye removal because the other person really did have a food dye allergy. In some cases the comorbidity may not be recognized at all (i.e. a nonverbal autistic who self-injures due to undiagnosed migraines, a nonverbal autistic who doesn’t want to do certain stims because those so-called “stims” are actually tics from undiagnosed Tourette’s syndrome, which they cannot control).

      As for historical autistics, I figure that a lot of them were in institutions when Kendra was at school, at least many of the ones that she was talking about were. Also, it is rare for kids these days to be able to go out and explore, and while that does not cure comorbid conditions, having the control over your life that comes from being able to roam neighborhoods, woods, etc. can reduce a lot of the trauma that kids have, so autistics who had fewer severe conditions, thanks to that personal control, were either likely to be not disabled at all, or to not have their disabilities be apparent until they got old enough to get jobs and could not pass a job interview for the life of them – such people would have flown under the radar. Other autistics may not have been as disabled as Kendra, but they were still disabled enough to wonder why they couldn’t do certain things – it’s just that there was no label. Unfortunately, free exploration is often not an option for kids these days for a lot of reasons. Also, many of the ways in which autism presents itself are not officially recognized, so some historical figures who could very well have been autistic simply do not make it onto those lists.

      Also, when it comes to conditions like ADHD often being comorbid with autism, I suspect that often those who are neurodivergent end up marrying others who are neurodivergent, for various reasons (this isn’t a “should”, I just think it’s a plausible possibility), so over generations, a lot of the neurodivergent genes for various conditions (autism, ADHD, bipolar, Tourette’s) get mixed up with each other. Thus, you end up with a population with a lot of kids who have several such conditions, including autistics with comorbid ADHD and other conditions.

      1. I agree that autistic people are still being oppressed and rejected, that’s indisputable. I also think much research is subject to bias. I don’t that’s unique to research surrounding autism. I disagree that the many co-occurring conditions often found with autism are most probably from an origin that’s distinct from whatever causes autism in a person with co-occuring conditions. That’s logically improbable. I also don’t think institutionalizations explains why we didn’t see folks severely affected with autism in the past. What institutions were they in? http://www.salon.com/2013/09/29/ronald_reagans_shameful_legacy_violence_the_homeless_mental_illness/
        http://historynewsnetwork.org/article/161992
        When I was growing up in the 1980s and 90s I was very blatantly autistic but remained undiagnosed, and no one suggested institutionalization. I wasn’t diagnosed because NONE OF MY PEERS behaved like I did. I was the only kid like that. If I had been like one of out every 50 or even 100 of my peers, I think the adults around me would have been scrambling to find a name for the condition. They knew I was very strange, but they had no idea there was a term for my strangeness.

  7. Thank you for sharing your experience and this crucial warning. May a biologically safer medical environment that respects all aspects of individual diversity become the reality for all of us soon!

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