Indeed, my ex wife was incapable of living on her own or holding a job. I have a whole social circle of autistic friends of different abilities. Some still live with their parents. Men in their 40s living with their parents. Women who left home for the first time at 30 only to have to move back within months. My one friend is a sex worker because she can't hold down a real job. She sells her meds and her body to get by.
I lived with my parents last year, at 36, but I moved out and got a 1 bedroom. It was touch and go for a while, I still can't cook for myself, but at least I can take care of my cats.
I'm never going to have children. I'm never going to have a house. A family like my parents had. My sister as well, well she just got a boy friend so maybe not.
The through line problem here is not autism. Despite the range of (dis)ability, the thing that makes it a problem is how autistic needs are unmet by a society that expects us to be worker bees.
My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.
What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.
Although I have to say I'm unsettled by you speaking for someone who can't speak, and deciding unilaterally that "curing" them would be a massive quality of life improvement for "all involved". Did you ask them?
> My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.
> What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.
People like to say stuff like this on social media, but I can never quite figure out what they actually mean. Society emerges from interactions between people. If someone can’t communicate, how exactly are they supposed to participate fully in society? All people deserve love and support and dignity regardless of their ability to contribute economically, but I’m curious what this “reorientation” would actually mean in practice.
> If someone can’t communicate, how exactly are they supposed to participate fully in society?
It's not that autistic people cannot communicate, it's that we communicate differently.
For example, I cannot talk on the phone. I just can't. I could explain all the reasons why, but I feel very dismissed here so I'm not going to be vulnerable anymore, but suffice it to say it's something I cannot do, and a lot of autistic people cannot do.
This means people like us can't have jobs which require a lot of phone communication. Accommodations that would allow autistic people to communicate in their preferred way would lead to greater employment of autistic people, but such accommodations are rarely offered for various reasons.
It's other things too. For some people it's lights. For others it's a uniform. For others its noises. For instance, I can hardly go into grocery stores because they play loud music, there's a lot of noises from beeping registers, and the lights are bright and garish. All retailers are like this, and that's where many entry level jobs are. If I can hardly shop there without wearing sunglasses and headphones, then I could never work there because workers are not allowed to wear noise canceling headphones.
Then there are people who require service dogs. You'd think that would be a solved issue, but my friend was just denied entry to a place because of her legit service dog, not even an emotional support dog. They said she couldn't have one because she didn't look blind. Then what, she has to explain to some putz about her autism, expecting he'll understand? No, she backed off and went home and now she won't go out again. It took her that much just to go outside and she was turned away by some busybody, so it's back to being a recluse for a bit.
And that's another thing, is the world could be a lot more accepting of how ND people identify, that would go a long way too. My friend I just mentioned says that her experience as a transgender person is inextricable from her autism. I'm not sure what she means 100%, but also I do, autistic people have a complicated relationship with gender and sexual identity, and a lot of people are very very against those feelings. Autistic people who are transgender (there are many) have a hard time existing in public life because they are shamed, ridiculed, vilified, beaten, and even murdered for who they are. Do you think it's easy for someone who faces those dangers to be employed? There are many transgender homeless people who suffer as a result.
I could go on and on, but all of these things I've listed are ways in which autistic people are marginalized in society, and they don't necessitate "curing" autism to fix, or even really reorienting society as a whole. It's not because they cannot communicate, it's because they cannot participate fully in public life. The solution is to just let them participate in public life. To make things better for everyone involved, we can just be accepting of people's differences and not force them all to be one way, and support them when those differences mean they need help to survive. We can afford to do that as a society I think, why not, isn't that the point of the whole exercise?
For me personally, I can get to quite high levels of "socialness" depending on mood and practice. I can get to muster up the courage to do calls, interact more socially, flirt with someone etc. It does take an extreme amount of energy though.
Where I think it differs for me, is in that if I don't do this type of "social training" constantly, it completely goes away again. If I didn't call my doctor/the post office/relatives in a few months, the ability to just do it normally is gone again and I start from 0. Everytime.
My psychiatrist helps me get to that point again but over time has realized that "exposure therapy" doesn't really work because every few months we have to start from 0 again.
Now having all of that said, for most people these types of interactions and things in life are just... normal. They don't require even a second thought. And that, I would imagine, removes a lot of friction from their lives because these interactions are needed to be a self standing, emancipated, contributing member of society.
Thank you for sharing that. I’m not going to address every example in your comment, and I agree that there are many ways society could be more accommodating. But I also think that not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it. Some jobs require you to talk on the phone, just like some jobs require you to lift heavy boxes. Not everyone can do that, and that’s ok. I can tell you with absolute certainty that I could not do my job as an engineering executive if I could not talk on the phone or video calls, since so much of my job is about making emotional connections with other people, understanding subtle cues and subtext, and influencing people. I have colleagues who I know are on the spectrum, and I greatly respect them and do try to accommodate them where possible. But some things require a level of social skills they simply don’t have.
Beyond that, I have to be honest: reading about your struggles with communication, lights, noise, etc. it’s frankly hard me to fathom why anyone would not want medication that can alleviate those symptoms. I was diagnosed with ADHD in my 30s, and my whole life suddenly made more sense. Stimulant medication dramatically improved my executive function, attention, concentration, impulsivity, etc. but I am still in every way myself while medicated. I am just more in control of myself. I realize there is no medication like that for autism yet, but if there was, I simply can’t imagine someone not wanting it when my life was improved so dramatically by treating my much-less-severe condition.
> not every difference can be accommodated in every situation, even if disability advocates don’t always want to admit it
That's why labor law generally has the concept of "reasonable accommodations" and core parts of the job. I don't think anyone is seriously saying that every disabled person can do any job.
It's honestly even more subtle than this. I absolutely agree with you about talking on the phone. I avoid doing things when I know it will mean I have to call ahead - and I would much rather go down there in person and get looked at weird for making an appointment in person.
Yet I've worked 4 different call center jobs and had absolutely no issue talking to people on the phone there. (Probably largely because the "small-talk" in such a scenario is absolutely rote and mundane...)
Fast-forward to my current job (IT) and I hate answering the phone (or joining a meeting) again.
I lived with my parents last year, at 36, but I moved out and got a 1 bedroom. It was touch and go for a while, I still can't cook for myself, but at least I can take care of my cats.
I'm never going to have children. I'm never going to have a house. A family like my parents had. My sister as well, well she just got a boy friend so maybe not.
The through line problem here is not autism. Despite the range of (dis)ability, the thing that makes it a problem is how autistic needs are unmet by a society that expects us to be worker bees.
My ability to type this message and read is not a constant. There are times when I am non verbal. There are times when I cannot read because the letters are all jumbled in my head. When I'm able to read and write and speak, society values me. When I'm not, society devalues me. You want to take autism out of the equation so that I can be valuable to society.
What I'm saying is that society needs to be reoriented so that autistic people are valued whether or not they can read or write or speak.
Although I have to say I'm unsettled by you speaking for someone who can't speak, and deciding unilaterally that "curing" them would be a massive quality of life improvement for "all involved". Did you ask them?