I openly state that I’m trying to heal from a pharmaceutically induced neuropsychiatric injury. The backstory, for those who aren’t aware, is this – I’ve exhibited behaviors that would be classified as autistic since at least age two, and if I’d been diagnosed with autism as a child, the diagnosis rendered would have been Asperger’s syndrome, (now roughly translated to level one autism). For an outline of the levels of autism, follow this link. In 2014, at the age of thirty-eight, I experienced a series of medically induced changes to my body and brain. I lost the ability to read, write, and speak. My sensitivity to sound went through the roof. My previously manageable anxiety transformed into constant panic, and my affinity for solitude transformed from a preference to a mandate.
Recently, another autistic told me I undermine the ideal of autistic acceptance when I state that I’m trying to heal from those pharmaceutically induced changes. She said that when I state I’m trying to heal, I’m telling people that autistics aren’t okay as we are, but that we need to be changed. And she didn’t stop there. She kicked me out of an online support group for autistic women.
Let me point out, I wasn’t always like this. I’m trying to return to my baseline, not become neurotypical. I’ll also point out that humans aren’t islands. We depend on one another for everything essential to our existence. Who does my injury most profoundly affect? My spouse, who has Asperger’s himself.
Conversations about care for those of us with greater needs usually center around how the needs of level two and level three autistics can be met by their neurotypical parents or other caregivers. I’ve never seen a discussion of the stress and discord that’s created in a marriage between autistics when one of the partners loses a great deal of functioning capacity and plummets to a level three status.
If you’re autistic, imagine this scenario. You’ve come home from a stressful day of faking neurotypical at the office. You have to do whatever you can to earn the paycheck that will support both you and your spouse, who can no longer work. All you want to do is hole up with your current fixation for a few hours—bury your mind and unwind. But you can’t. Your spouse is melting down because the silverware doesn’t match, and you have to keep her from smashing her head against the wall. Or worse yet, you come home and your spouse isn’t there. You worry—did she get lost walking in the neighborhood? Did her strange behavior attract the attention of a poorly behaved policeman? Is she in danger?
Oh, but support! We just need services! And support, and services!
Those things aren’t free folks. And when the balance shifts to where you have a society with more people in need of services than ever before, in a very short span of time, you end up with a financial and economic conundrum that extends beyond the purview of acceptance. And autistic people aren’t the only people who can benefit from services and support. There are a lot of other developmental conditions and medical conditions for which people can benefit from services and support.
Since autism is treatable, I’d go so far as to argue that those of us who can achieve greater independence with treatment should consider treatment if the treatment doesn’t harm us. It’s profoundly self-centered to expect that mostly government funded, already cash strapped disability service providers rev up to attend to a population that’s growing by 600%-700%; which genetics and better diagnosis can’t account for—a population that shouts out demands for services but balks at the suggestion that any among themselves accept treatment that could enhance independence and decrease dependence on those services.
Which brings me to my next point. Before 2014, I was able to help more human beings. Presently, I’m more in need of help than capable of offering help. If I continue to heal, I can become more helpful again—and more people, who have needs that are equally important to mine, will benefit.
Because of treatment that targets the neuroinflammation and oxidative stress associated with autism, I’ve already recovered my ability to read and write, and I no longer want to bang my head. I also no longer get lost in my own neighborhood. If anyone wants to tell me that’s a bad thing I’m happy to give them the address of a parking lot where we can meet to settle the discussion. That’s a joke—kinda sorta.
So, what aspects of my experience of autism am I still trying to change?
My lack of a neurotypical level of eye contact? No.
My systematic, hyper-rational approach to the world? No.
My use of stim objects in public? No.
Do I want to become more social? Not really.
Do I want to reduce my general eccentricity? Absolutely not!
All of those things should be accepted, because they don’t cause anyone harm, nor do they keep me from being the best me!
One of the things I’m trying to do is master the ability to speak clearly and purposefully whenever I want or need to speak. Sometimes my speech is flawless and fluent. Sometimes it’s peppered with involuntary vocalizations. Sometimes it’s broken and stammering. Sometimes it’s grammatically disordered. And sometimes it’s nonexistent.
Is it really so bad to want to improve my oral fluency? People of all neurological persuasions aspire to be more effective communicators, whether that takes the form of writing, speaking, or signing. I’m sure it’s only a matter of time before poetry and other art forms arise among people for whom the use of a communication board represents a first use of expressive language.
Communication among humans was integral to the evolutionary development of our species. My first language is English, and I learned to speak before I learned to type or sign, so for me to want to recover the level of fluency I once had is a reasonable aspiration. Before 2014, I was only mute in certain situations—mostly in classrooms and in meetings. And this was because of debilitating social anxiety, rather than an inability to form words correctly or at all, which is what I sometimes struggle with now. This aspiration in no way demeans another human’s use of any other method of communication.
Consider an analogy. Suppose Kelly is deaf and her first language is American Sign Language. Then imagine at age forty, she simultaneously develops hearing and arthritis. It would make sense for to first try to treat the arthritis so that she can continue to communicate easily in her first language, ASL, even though now that she’s hearing she has the ability to learn a second, spoken language.
Again, this isn’t just for my benefit. I’ve been in situations where friends with other disabilities have needed me to help advocate for them. When my fully verbal neurotypical friend was experiencing septic shock, she became the one who could barely speak. At the moment that happened, I was far less concerned with pleasing neurodiversity hardliners who think becoming non-verbal isn’t a big issue, and far more concerned about communicating my friend’s complex medical history to the staff in the Emergency Room so that she could get appropriate treatment to save her life.
So yes, I advocate openly for treating autism. I support parents who choose to treat their severely disabled autistic children with therapies such as probiotics and anti-inflammatory supplements. I use those treatments on myself. I reject the use of invasive and abusive “therapies” such as certain applications of ABA, electroconvulsive therapy, and transcranial magnetism.
The goal should not be to transform us into neurotypicals, but to give us enhanced opportunities to be the most successful autistics we can be. I believe most of us have a wealth of talents and unique insights to offer the world. Stifling the expression of those talents in the name of acceptance is an incredibly bad idea.
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