Well, one monster article draft, one January cold, and a lot of “life stuff” later, I have returned. And as promised, today I’m going to be talking about the respect afforded autistic people, or lack thereof.
You might remember that during my last post, I talked about an autistic young man whose meltdown prevented a mother from attending her high school daughter’s graduation. What I alluded to but did not go into, was the fact that this story ended up on Reddit. Most readers sided with the daughter who burned bridges with her mom and brother over this. Those readers also vilified the autistic brother, claiming, among other things, that he would never do or be anything and should not be allowed to dictate or ruin others’ lives.
That was discouraging enough. And that, among other examples, was one example of why I determined to distance myself from such content this year (I originally found it in 2022). But at the same time, I kept seeing, have kept seeing, content that tells me autistic people in particular are still not considered worthy of basic respect. I keep seeing attitudes that tell me autistic people may be considered worthy of care and treatment, but not respect. For instance, an autistic adult who is one year older than I, has always been considered worthy of being “rewarded” with his favorite foods or activities if he does what a paraprofessional asks, either at school or as part of a day program. But does he get these things outside of that context?
Of course, this is nothing new (oh, King Solomon, when you said “nothing new under the sun,” I doubt you truly had an idea of how deep that would go). Lack of respect, the presence of the “compliance narrative,” the people hiding in holes on Reddit waiting to tell abled people that no, they are not jerks for reacting with anything but kindness to disabled people, are not new. But these attitudes, directed toward autistic people, are under my skin lately.
Why Autistic People in Particular?
Yes, why? More harshly, more to the point, why are autistic people treated so badly in this world? Why are they–and considering that I am on the spectrum, why are we–so disbelieved, so discounted, so stereotyped and looked on with such suspicion? We don’t deserve it any more than people with cerebral palsy or spina bifida or post-polio syndrome or Fragile X syndrome or Murqio Syndrome do. So, why?
It’s the first question I asked myself when preparing this post, because if we know why, we can tackle how to respond to the “why.” A few reasons come to mind:
–Autism is usually thought of in extremes. The word “autism,” and the associated explanations, usually connote one of two images. The first is the image of somebody like Shaun Murphy from The Good Doctor or Temple Grandin or Raymond Babbitt from Rain Man (all of which are different levels of incomplete portraits, taken by themselves). This is the image of a highly intelligent, perhaps endearingly “quirky,” yet socially inept person. At worst, this person is rude, unempathetic, and uncaring. At best, they can be “trained” to “comply” with social norms, but they will never be “normal” (what a load of crap).
The second is the image of somebody who’s usually the extra in a film, the more minor character in a book. It’s the person we’d rather not think about, the person stuck with the “low-functioning” label, who is assumed to be uneducable, unpredictable, uncontrollable, un–anything, really. It’s the person whose every move and vocalization is assumed to be out of anger, fright, or hysteria. This person is a stereotype, an example of why de-institutionalization never should’ve happened (I saw somebody on Quora recently who said caring for a disabled relative was “the worst idea since de-institutionalization,” may they repent or rot in hell).
Both these images, especially the second, are incomplete portraits and loads of crap. They leave no room for autistic people to be real, three-dimensional humans with both gifts and weaknesses, strengths and flaws, sensory experiences that make them comfortable and happy, and sensory experiences that drive them up a wall. They leave no room for me to say, yes, I am 90% a sensory avoider–but there are sensations I love and will seek if I am alone. No, I do not stim publicly or loudly, but given safety, I will stim. They leave no room for a young man my mom worked as an aide for in my former church to speak without using his mouth, to relate to church on an elementary level, yet still enjoy it with same-age peers.
–People are more concerned with how to talk about autism than how to interact with autistics. This is still a headline on Disability Scoop. Federal programs are still receiving backlash after moving to “neutral” language when discussing autism. Why? Because advocates on the opposite end of the spectrum from me are concerned that using “neutral” language will “sanitize” what autism really looks like, what neurotypical people who interact with and care for us really go through.
Excuse me while I go bang my head against a wall…and no, that’s not a stim (I’d find that beastly uncomfortable). Seriously, when are neurotypicals gonna get over this, “But what about us? What if they sanitize what autistics put us through?” DAD-GUM FRICKIN’ FRACK!
Outside of that though, I think language is a big reason why autistics continue to garner such disrespect. People are still hung up on the language surrounding disability in general–i.e., people-first vs. identity-first language. But for autistics in particular, it’s a major issue. For instance, neurotypicals still feel they are entitled to tell us that we, the autistics, are not allowed to call ourselves autistic! They feel they are allowed to tell us, “You should call yourself ‘a person with autism.'” Which–how weird is that? (And yeah, I used to say “person with autism.” I still do sometimes. I’m still not 100% comfortable with calling myself autistic because I grew up believing autistic always meant that second image, which is another matter. But now I see why “autistic” is not a bad word and is a big deal. So, forgive me, please, and bear with me if you can).
I get that language can be a big part of change and how we relate to people who’ve been marginalized. It can simultaneously be one of the easiest and hardest things to change. But I would rather see less bickering over language, and more focus on interacting correctly and meaningfully with autistic people.
–Treatments and interactions with autism have, for decades and centuries, been so focused on abuse. I’m not going into it, I’m not triggering myself. All I’m going to say is, that’s where we’ve been. It’s still where a lot of us are, even with, and because of, stuff like “the new ABA.” And because so many people, neurotypicals and especially “autism parents,” deny the abuse exists, this is where we’re gonna stay until radical change occurs.
–Autism is still viewed and treated as a disorder and/or disease, not a different neurotype. I’m not a sick or diseased person. If you had told me I was, even before I knew I was autistic, I’d have hotly denied it. But at the same time, I’d have felt insecure. I’d have wondered, especially since people still think of cerebral palsy, which I have always claimed, as a disease. (They don’t call me sick, but I have been talked about in terms of “wholeness” or “getting better.”) Even now, when I try to teach myself, “I’m not diseased, I’m not disabled. I’m just a Mac when everybody else is a PC,” I can’t do it. When I tell people, “I am a different neurotype, they are different neurotypes,” I get, “No, you are disabled. Autism is a disability.” But…is it? Or, is it so just because society at large can’t cope? Is it so because society has latched onto the extremes, the severe cases, the violence, the 100% unable to be self-sufficient, and subscribed that to all of us?
–Autistic people are overwhelmingly not telling their own stories. That’s still being left to the caregivers and the parents and the paraprofessionals. As we know, that’s a crapshoot. And for the autistic people who do tell their own stories, unfortunately, neurotypical readers tend to latch onto and carry tales about the parts that fit their stereotypes, their images, what they are comfortable with. I can and will encourage more people to tell their stories, and I do. But I will never tell autistic people how to do that. If you happen to be an autistic white male who is amazing at math and science and loves trains, right on, rock on, do your thang and the heck with everybody else. You wanna write a best-selling book, do that, too. I’ll just tell the neurotypical people, read that book as what it is–the story of one, single autistic person. Okay? We cool? Good. Meantime, I’ll keep working up my story as a white autistic female whom math and science gives hives, who loves Jesus, Hamilton, and Harry Potter, and is still “coming out.”
So, How to Bring Autistic People Respect?
Well, the easy answer would be, do the exact opposites of everything I just said, duh! But, yeah. Life is a little more complicated than that. (And as I have learned, “duh” can be insulting toward people with intellectual disabilities, so that’s something I’m going to avoid). And just as every autistic person is different, every autistic experience and story is different. What would show me respect would not show you respect and vice versa (i.e., I love Disney and Harry Potter, but you could probably give an autistic friend of mine a pink Disney princess backpack in the expectation she would carry it around. To me, that would be disrespectful; I’d prefer a ceramic figurine or a collector’s wand or doll version of Hermione for my desk). So I’m just gonna keep this general:
–Educate yourself about autism, using authentic autistic resources. Read real autistic stories, such as Carly’s Voice by Carly Fleischmann or the upcoming book I Will Die on This Hill. Go on Pinterest and look up lesser-known topics, such as “autistic girls and women” or “ABA is abuse.” Dive into the comparisons and contrasts between autistic males and females. Check out overlaps between autism and other disabilities or other communities. For instance, I’m not LGBTQ+, but I now know, a LOT of autistics are in some form, often queer but other forms as well. And know, this education is a long, multifaceted, ongoing process. No, you don’t have to agree with everything we do or say. But being a real ally goes way beyond saying we’re cool as long as our fidget toys, our stims, our whatever, isn’t bothering you at the moment.
–Seek out, and tell, positive autistic stories. You’ve got an autistic relative or friend? Without using inspiration porn, tell us, tell the world, positive things about them. Counteract those awful Reddit and social media stories. Tell us about how your cousin made Eagle Scouts–because he loves and is good at Scouts, not because he struggled to be accepted. Tell us about how your best friend’s paintings look totally real. Tell us about how you didn’t know one end of the periodic table from the other until you met your autistic chemistry tutor. (Note on this: ONLY DO THIS WITH PERMISSION. Just as it is disrespectful to post meltdowns, stimming, and etc. for public consumption, it’s also disrespectful to do this without permission. Nobody likes to be put on display).
–Change your language, meaningfully. No, not just “autistic” instead of “person with autism,” although this is part of it. But, when an autistic person tells you they have a different neurotype, listen and say, “What does that mean? Tell me more about that.” Then listen. When an autistic person tells you about their experience, don’t correct them or talk over them. I don’t care if you’re some kind of expert therapist or paraprofessional or doctor or what. Talk to and about autistic people with a lens of human relationships and reciprocity, not subordination and compliance.
–Think about and respond to the world from an autistic perspective. I have never denied that life is hard for parents, siblings, and caregivers of those with disabilities, including autism (I know, different neurotype. We and I are getting there, but since I have CP too, I’m throwing that in). I have known this my whole life and had it said to my face. But the rest of the world seems so focused on that, I have internalized, “I make life hard. My people make life hard.” So, well-intentioned as you are, truthful as you may be…the next time your thoughts go down that road, please stop. We’re trying to empathize. We accommodate you, the ableds and neurotypicals, all the time.
Think how it looks and feels for us.
Again, as with so much on this blog, the disrespect toward autistic people in particular isn’t a problem I can solve on my own. I wish I could. But as always, I hope I could help.
Next time, we’ll talk a little more about compliance. I’ll bring in some personal stuff, meaning Christianity will play a role, so if you need a “lesson pass,” feel free to take the next post off. Otherwise, see you next time. I’ll shoot for the 31st.