Hi Ashland Washington! It’s me — Twilah Hiari, aka A Thinking Patient. I’m a blogger too. If you visit my site you’ll see posts about autism, mast cell disease and other fun stuff.
One of my friends shared your post about the costs of rejecting a cure for autism on Facebook, and I thought I should offer my response to your piece, especially your closing paragraph that states,
And neurodiversity advocates—if you like your autism, you can keep your autism, but if you’re not going to band together to personally fund nearly $300 billion per year to help care for people with autism, and if you’re not going to step up to befriend, love, and care for our kids when we’re gone, then you don’t have the right to shout down and denigrate the children and families who want something different from you.”
You see, I have a lot of empathy for the struggles of neurotypical parents of autistic kids. I have this empathy because I’ve been in your shoes. I know what it’s like to be legally responsible for the behaviors and profound limitations of a child whose motivations and thought processes you don’t understand.
I’ll be the first to say there are major problems with idealizing autism. I think it’s a huge issue that many neurodiversity advocates erase the most vulnerable among us. Some neurodiversity advocates seem completely oblivious to the fact that people who smash their heads against walls and never learn to use the toilet independently are given the same diagnosis as those of us who are geniuses.
I’m a person who can’t always speak. I’ve also struggled with head-banging behavior. I’ve written pieces rejecting the romanticization of autism. But I’m not gonna sit back and let my community be painted as all bad. Not without an examination of the neurotypical community’s flaws.
A few years back a set of complicated circumstances culminated in a court decision that placed a child in the home of me and my Aspergerian spouse.
This child—this teenager, was on the neurotypical spectrum. She’d been raised by neurotypicals—but not the kind of neurotypicals that autism mommy bloggers like to talk about. She’d been raised by lower functioning neurotypicals. We all know a characteristic of neurotypicalism is imitation of the behaviors of people around them. Unlike autistics, they have a hard time staying inside their own heads. Motivated by the deep drive to fit in that is a hallmark of neurotypicalism, she’d embraced an enormous set of maladaptive behaviors.
When stressed, she didn’t know she could curl up and cry while gently rocking her body back and forth. She’d come to believe that a better response was using drugs and alcohol. Those were among the lower functioning neurotypical behaviors she mimicked.
We tried to explain why drugs and alcohol were irrational responses to stress. But her neurotypical mind was more naturally drawn to feelings than logic. We offered her a multitude of opportunities to find a special interest or two in which she could immerse herself, but she rejected all of our offerings as boring.
Some of her behaviors were particularly perplexing. In the evenings, she sought out the company of a crowd of peers. We’d offered science projects and art as alternatives, but nothing could curb her bizarre drive to ceaselessly socialize.
We had to concede that her constant need to be surrounded by other humans, her seeming indifference to sensory dangers like loud music and bright lights, and her utter inability to find amusement in things like physics, engineering, and chemistry were symptoms of her being wired differently. We reached out to neurotypicals for help in understanding these behaviors that were so far beyond the scope of our paltry autistic imaginations.
But the neurotypicals we found could offer little advice. They didn’t want to embrace the lower functioning individuals among themselves. Their eyes shifted and their bodies squirmed when we asked for help in understanding the drug addiction, truancy, theft and violence that were emblematic of this brand of neurotypicalism.
We were desperate. We no longer felt safe in our own home. Quiet evenings reading Wittgenstein or discussing the variance of the gills of mushrooms of the Midwest had been replaced by a constant fight against the drug fueled chaos that had invaded our lives.
Who pays for these neurotypical transgressions against families and society? Taxpayers do. The same court that had ordered her into our care heeded our pleas for help and sent her to rehab. The neurotypical family from whom she’d learned the behaviors didn’t foot the bill, and neither did we. The cost was distributed among us and other taxpayers. I can’t find an exact figure for the facility she went to, but rehabs.com indicates a month of rehab costs between $14,000 and $27,000. Extrapolate that across the entire population of neurotypical addicts in temporary state custody and you get some pretty big numbers.
When our teen returned to us from her inpatient stint, I quit my perfect, repetitive, analytical, work from home job to homeschool her. I knew there was no way she’d make it in mainstream education. And she was too neurotypical for an IEP or special education classes. But even with one on one attention, she wouldn’t do the work. Instead, she’d sneak texts to girlfriends and boyfriends, planning the next party while ignoring the joys of geometry laid forth before her.
We parted with this pandemonium when she turned 18. Peace and order have returned to our quiet, autistic lives. I wish her the best, but wonder whether she’ll ever be able to truly live independently, without the crutches of stimulants and craving for self-destructive interpersonal approval. I hope she’ll steer clear of arrests and not make any more profoundly irrational decisions, the consequences of which she can’t fully fathom while blinded by her neurotypical emotionally based decision making.
If you like your neurotypicalism, you can keep it. I’ll also invite you to help pay back what my autistic spouse and I invested out of pocket for the outpatient rehab that followed the inpatient term the state so generously paid for. You can pay for the homeschooling materials too. And the thousands of dollars in therapy.
Perhaps you’d like to give me back the evenings of productivity I lost as I sat stimming and shaking in loud coffee shops and restaurants where I waited for her group therapy appointments to end. The appointments were across town, and depending on the season, it was either too hot or too cold to wait for three hours in my car.
Maybe you’d even be generous enough to help me get another job like the one I gave up for her. You see, like I mentioned before, I can’t always speak, so I don’t interview well. And I have to work from home because of my sensory issues and chronic illness. I haven’t been able to find employment since I sacrificed it to facilitate her healing.
Autism can be an incredible gift or a crushing curse. It can be both within the same person. To characterize it any other way is disingenuous. I support funding research to uncover treatments to help heal those who are most impaired, and any others who opt to partake of treatment.
But the costs of debilitating neuropsychiatric conditions shouldn’t fall on the shoulders of those of us who are guilty of the terrible sin of embracing and celebrating our unique talents. Your community is as diverse as mine. If you’re going to write about the intersection of autistic people and neurotypical people, please write about the whole neurotypical spectrum, not just the pretty parts of it. Let’s come together and communicate with truth and honesty. We’ll accomplish a lot more that way.