Friday, August 04, 2017

Cassandra Syndrome and the Denial of Disability

In an old post of mine, the comment section has exploded with 'Cassandra Syndrome' women. The rampant ableism is disgusting, and it has given me new insights into this group.

One woman responds to my statement:

"Very often, the AS person is already exerting much more effort to accommodate their NT partner than vice versa."

Whew, where shall I start. It may feel that way to you, but being Aspie partners are exhausted after mowing the lawn all day as it takes all day and have an incredible lack of empathy and understanding, I can see where you may think that is true.
Where to start?

If the AS person has spent all day struggling to do a task to the point of exhaustion, that still doesn't count as 'exerting effort' in her eyes, because that task shouldn't be that difficult?

Well, guess what? Autism is a disability! The very definition of disability is that it makes tasks which are simple for most people difficult or impossible for the disabled person. This is like getting mad that it took several hours for a wheelchair-using partner to fetch something from the top shelf, when it's amazing that they figured out a way to get it at all.

Specifically, with the task of mowing the lawn, that's something I would find difficult too, and I know others find it harder than I do. Fortunately, I don't tend to mow the lawn, which I'll get to later.

I don't know this man, but I know for me, the biggest challenge for lawn-mowing would be the noise. The sound of a lawn-mower is typically a loud continuous monotone buzzing, and monotones are the worst for my auditory sensitivities. (It would be even worse if it was a high-pitched monotone, like a vacuum cleaner.) I generally can't even go outside for more than a few moments while someone's mowing, or else my head aches and I need some quiet to recover. And I know many autistic people with a lot more sensitive hearing than I have.

When I try to do a task that is extremely sensorally distressing, I need much more frequent breaks. I could wind up doing 5 minutes of work at a time, punctuated by 10 minutes breaks, because that's literally the only way I can do it. I could easily see a process like that stretching out a task to take all day. And since those breaks won't be enough to fully recover - that could take 24 hours or more - the person would absolutely be exhausted by the end of it, and not in any state to do even more work.

And this isn't even getting into executive dysfunction. Sometimes, it can take all day and lots of effort for me to even get myself started on a task, because I have an urge to avoid it that is very tough to fight. If you've ever procrastinated on an assignment, you have an idea what this feels like. Only it's stronger, and triggered by different things. This process is why, for example, ADHD children can wind up spending several hours trying to do a piece of homework that took 5 minutes of actual work to finish. And you can bet that those ADHD kids are exhausted and need a break after all of that, even if it seemed unnecessarily difficult to an NT person.

My biggest question here is why was he doing the lawn? I can bet that this NT woman can do it way easier than most AS people could, and meanwhile, he could have been doing other things that aren't extraordinarily difficult ordeals for him.

In my family, we have four people who all have some sort of disability that makes some household tasks difficult. My father and I are both on the autism spectrum, but with different flavours of autism. My father also has some sort of recently-developed shoulder pain, and a much longer-term knee problem that I think has mostly resolved. And diabetes, which means he needs to take time to test his blood sugar and can't think very well when he's hungry. I have hypermobility and asthma, and also milder blood sugar issues. My mother has asthma too. and arthritis in her knees. And my brother is chronically depressed, with features of social anxiety and agoraphobia. (And my brother is the person who finds it hardest, of all of us, to do housework. Just because depression is invisible doesn't make it any less crippling.)

The rule I follow is that I do tasks that are difficult for me only if: a) the task is vitally important and urgent (or has become urgent from neglect), and b) other people can't do it more easily than I can. This is why I basically never mow - my Dad, who has milder auditory sensitivities than I do, can mow fairly easily; and I honestly have never seen a situation where mowing was vitally important and urgent.

In contrast, cleaning up dog diarrhea, a task I find as difficult if not more than mowing, is something I've done several times. My mother's knees make bending over painful, my father has a sensitive gag reflex, and my brother rarely has the energy to do something like that (and is usually not awake, because the dog usually has diarrhea at night or in the morning, and he usually sleeps in until noon). And cleaning up dog diarrhea is definitely urgent, because it stinks up the whole room, and if it's left alone it'll make a bigger mess over time. So even though cleaning up dog diarrhea is extremely unpleasant for me, and makes me gag, wash my hands excessively, and shudder from sheer disgust (and yes, need a break afterwards to calm down), I'm probably either the most likely person or second most likely person to actually do that particular task. (And I'm really glad my dog's digestive tract seems to have settled down with maturity.)

But the bulk of the work I do for my family is stuff that doesn't take nearly so much effort for me. Laundry is a bit difficult because the cat box is in the laundry room, but otherwise fairly simple, so I do a load whenever I go in that room for any reason. (Usually because I'm out of clothes in my room, so that works out well.) I also do the dishes semi-regularly, as long as the bung isn't in, because reaching through dirty water to pull out the bung is way harder for me than doing dishes in general. I do the majority of dog feeding and dog walking, because I'm usually home a lot more and it's often harder for me to ignore the dog's pleas than to walk her.

When someone is sick, if I actually know that a) they're sick, and b) that affects their ability to do X, I'll often pitch in to go above and beyond for them. Of course, these women would probably not agree, because they don't seem to get that there's a difference between not understanding a situation and not caring, and sometimes I don't get what would seem obvious to most people. My parents have sometimes told me they're sick, then asked me to do a task, and then had to explicitly explain that they can't do that task because they're sick, because I didn't connect those two pieces of information.

I get that it's frustrating when someone isn't doing the same amount of housework as you. I especially get it since my brother developed depression, because boy is he ever frustrating sometimes! But I've also very often been the person who tries the hardest and sees the least result from it, and ends up doing less than other people who can do it so much more easily than I can.

It's important to remember that AS adults have a much higher rate of homelessness than NTs, and a lot of that is due to disability reasons. You might be wondering 'how would this turn out if I wasn't here to do this task for him?' Most likely,  the task would not get done, or not enough. There are AS people who have had their homes condemned because it's literally not suitable for human habitation anymore. This isn't being lazy or uncaring, this is a disability, and not primarily one of 'lack of empathy' either. Others have stayed in abusive homes simply because the alternative is homelessness or institutionalization. And no doubt many have tried to find a partner to act as a caregiver, even if the relationship doesn't work on basic level. Trading sex for survival isn't just something that women do.

And that's the big lie autism 'experts' spout, that the only major issue affecting high functioning autistic adults is social difficulties. About half of all autistics with average or above average IQ have significant impairments in daily living skills. Often, our ability to care for ourselves and our homes is on par with someone with mild to moderate cognitive disability - I've met people with Down Syndrome who have better independent living skills than I do.

And on the subject of social skills. If you talked to your Deaf partner's back, they wouldn't know how you were feeling. It's not a lack of caring to not realize something that hasn't been communicated in a way you are capable of understanding. Autistic people are expected to do all the work to figure out how NTs communicate, to learn how to read nonverbal cues, to guess at the unsaid messages communicated only through sighs and glances, to connect the dots between what they said and what it actually means. And when it's time for the NT person to read the autistic person's feelings? Once again, the autistic person is expected to put in all the work, forcing appropriate facial expressions and tone, putting themselves through sensory discomfort to give off signals the NT will expect, and learning not to say what they need outright because that's considered rude.

If you're NT, you are privileged to live in a world where everything is made easier for you. I won't say it's easy, because life never is, but an NT goes through life with so many invisible accommodations made for them without questioning. You can expect that most people will understand what you're trying to communicate, and will express themselves in a way that you can understand virtually effortlessly. You can expect that if something is extraordinarily difficult for you to do yourself, there'll be someone you can hire to do it for you, or else your life will be designed to make doing that thing unnecessary.

To fail to recognize that being NT makes your life easier in so many ways, and that the same amount of apparent work might take twice or ten times the effort for someone else than it does for you, is showing a lack of empathy.

But there's something else going on. Autistic women and perceived-to-be women, such as Alyssa, Neurodivergent K, and Dani Alexis, have all commented on a trend of autistic men or their mothers trying to hook them up with autistic girlfriends who can act as unpaid caregivers. And I have no doubt that even more are doing this with NT women, who are more likely to a) be straight and cisgender, and b) actually capable of acting as a caregiver to an autistic person.

It's an icky dynamic. Let me be clear: helping your disabled partner with activities of daily living isn't icky. What's icky is when that's the primary basis for the relationship.

I don't know why I'm not seeing more autistic women and NT men in this dynamic, but I'm guessing it ties back in some way to sexism. Yes, autistic people are more often men, and yes, autistic women seem less likely to be straight, but the difference is too dramatic to be chalked up to those two factors. I doubt it's coincidence that the 'Cassandra Syndrome' suffererers are disproportionately members of a gender expected to be nurturing homemakers paired with members of a gender expected to be entitled receivers of care.

But at the same time, part of me really can't blame the men (or their mothers) for wanting to find a datemate who will take care of them. Because honestly, if you're an autistic adult who can't live independently, and especially if you're perceived as high functioning, your options are not that good. If parents of autistic children think that they don't have enough services? That's nothing compared to the struggles for autistic adults who need services.

And when survival hangs in the balance, sometimes you have to make hard choices. Even if it means using someone else. It sucks, it's not fair, but the real problem is the society that forces people into that situation.


Post a Comment

<< Home