Me/autism

My Traits

I'm only just starting to collect these, so this is just scratching the surface:

Parsing: I often have difficulty understanding what people are saying -- not because of any hearing issues, but because I have difficulty figuring out how the phonemes are supposed to be grouped together and then (if there's any variation from how I expect things to be pronounced) recognizing the word.

Comprehension: Even once I parse a sentence, I may have difficulty figuring out how it applies to me (is it a question? information I need to acknowledge? a joke?) – especially if it's "social talk" of some kind.

The above two are big contributors to my phone phobia, along with voice dysphoria (part of my gender dysphoria).

Facial recognition (aka prosopagnosia): this is relatively mild, but I will often confuse two people if they're not visible at the same time, or I will think a stranger is someone I know. I have learned (through painful experience) not to trust what my brain tells me about who someone is, which tends to have a chilling effect on being friendly with people I think I recognize.

...and in general I experience a lot of alienation from the human experience.

Josh

For about a decade, I was co-parent of a profoundly autistic boy who had almost no ability to communicate, despite appearing normal in many ways. He didn't "walk funny" or constantly make "odd" movements; he was physically strong, dextrous, and agile, and was clever enough to figure out a lot of mechanical things on his own, like keys and DVD remote controls (with which many adults have difficulty at times).

His primary communication skill boiled down to a kind of one-dimensional indication that he needed something, and how intensely he needed it. He couldn't even gesture or point to indicate what he wanted. His "need intensity" would be conveyed in various forms, from mild things like staring you straight in the eyes all the way up to screaming (at any time of day or night) or finding the smallest person in the room and hitting them until they were able to attract adult attention.

As he got bigger and stronger, and his dissatisfaction with life increased, his presence in our house became an existential problem for all of us. As of 2011, he has been happily residing in a group home, where they have experts in psychology, nutrition, and health to work out his needs and address them, to keep him occupied during the day, and to monitor him during the night.

(For clarity: Josh does not appear to have any physiological sensory issues; his hearing seems to be fine, and not a root cause of his communication issues. He often sings along with his favorite musicals, and sometimes even mimics the dialogue; he has shown little or no interest in other modes of communication, either. He has been living in a group home since early 2011, with psych and medical specialists on tap, where he seems to be happy and receiving satisfactory care.)

Benjamin

I've also been co-parent (he recently started calling me his "other mom") to a high-functioning autistic child (now adult) since ~2003. I'm not sure if he feels positively or negatively about the autistic experience overall. I do know that I tended to be the one who could explain him to other people, including his mom (my hypertwin), and explain other people to him.

I also found out that one of his younger classmates sees her autism as a positive aspect of her life, while another one sees it as negative (they both read essays about it as part of a class presentation in spring 2017).

Curing Autism

When autism allies talk about "curing autism", or about how autism isn't a disease and doesn't need "curing", I see both sides:

• Personally, there are some things I'd love to fix about my brain, especially the parsing and the face-recognition.
  • Also, turning down the ADHD-PI a notch or three would be... greeeaaat... but that's not technically part of autism (though it is part of neurodiversity in general).
• I suspect strongly that Josh would also rather be able to communicate, so that he could have more independence and agency without having to live in the woods and forage in dumpsters for food.
• I don't think I'd want to become "normal", however. (I can't speak for Josh on this, though.)

So I support the idea that it's a problem, and there need to be remedies for some of these problems, and even a little genetic tinkering to ameliorate them in future generations could be a great thing.

What I don't support is anything that would make people too uniform in the way they think -- but that goes beyond autism.

I also don't support the idea that when autistic individuals have problems with society, it's necessarily the individuals that need to change; society should be able to accommodate a wide variety of cognitive styles, because different perspectives are part of the richness and creativity of life.

...and finally, autism isn't a single thing; it's a collection of cognitive issues that often appear together. When this collection causes enough functional impairment to be describable as a pattern, it's called autism. (When it isn't severe enough, it's generally called things like "what's the matter with you".) So there's never going to be a single "cure"; what is needed is various techniques and tools to help minimize its occurrence and its impact.

Notes

• 2017-06-18 To my friends on the spectrum, let me explain to you an unspoken social rule that possibly nobody has ever explained to you before (via): how autists and NTs often end up miscommunicating (I'm not sure I agree with the interpetation of what NTs actually mean; the point is that there's often a divide in how literally we interpret things.)