Alyssa reads: Ethical Analysis of Neuroimaging in Alzheimers Disease

I read “Ethical Analysis of Neuroimaging in Alzheimer’s Disease.” J. Illes, A.Rosen, M. Greicius, and E. Racine. NIH Public Access manuscript, eventually in Ann N Y Acad Sci2007 February under the title "Prospects for Prediction: Ethics Analysis of Neuroimaging in Alzheimer's Disease." My page numbers come from the NIH version, when I quote stuff.

Anyone else bothered by the consistent framing where we demonstrate the significance of disability related research by citing a significant/increasing “public health burden” and the money spent on care? Anyone? (Fellow citizens, that is your money too.)

Now we're going to focus on ethical issues around imaging/detection. (Which, I note, remain ethical issues surrounding imaging/detection whether or not you talk about public health burden and money!!!)

The “Roles for current imaging capabilities” section seems to take it as a given that identifying risk factors (for this thing we really can't treat that well) in order to predict who's going to get Alzheimer’s before they get it is important. I would have expected that to be one of the ethical issues to discuss: do we identify folks who are going to develop Alzheimer’s even though there's not really a way to change this? (And that's at the 100% certainty level, which, to be clear, is not current reality. We can't predict who will/won't experience this. We can't predict what cognitive changes a person will (or won't) experience as they age with anywhere near that level of certainty.)

(Yes, I think with something that would fall under the neurodiversity paradigm. Also cognitive liberty or freedom – people being in charge of their own minds while also valuing diversity on a societal level! I'm still inclined to treat neurological things that will eventually kill you as things I would like us to know how to change or prevent, because death. And Alzheimer’s will eventually kill you. Cognitive freedom also goes with “people can choose what to do with their own minds” and “not dying of dementia” is a common preference, let us science so people can make that choice.)

Ah, yes, good, stigma is getting addressed.

• Predictive imaging may expand the pool of disease to people who are much younger, and therefore expand the pool that is stigmatized.
• Both earlier prediction and stigma have the potential to reduce quality of life, including autonomy and the privilege to drive, and other daily functions.
• There may be medical discrimination against people at risk, for example, with respect to eligibility for organ transplantation. (4)

My preference is for not stigma at all. Expanding the stigmatized pool is not doing this. Neither is reducing it. Both of those are justmoving the line of acceptable minds around. Nope. (Still don't like shoving people unwittingly or unwillingly into a stigmatized population.)

It's important to point out the quality of life issues where being in a stigmatized group, all on its own, causes problems. Because it does.

 

Organ transplant discrimination is a thing. I might not be able to get an organ (autism, people get rejected for that all the time, sometimes even when there's a family member willing to donate who isn't offering this for anyone else re: kidney or liver.) 

 

I think we need to work on the stigma in addition to working with the reality that it currently exists.

I appreciate that “Scan everyone who wants a scan” is one of the considered options. It gets the shortest discussion (probably because “do for person X what person X wants” isn't that complicated) and the issues brought up there are common to the other groups as well. (Who should have access to the results of testing is not only a question when the test was done without medical indication. It might have different answers depending on the level of medical indication for the test. I'm very much inclined towards “The person who had the test decides who even knows the test took place, and similarly who gets results.” It's hard to coerce test results out of someone if you don't know there's anything to coerce. The tricky thing is to make sure employers can't coerce the test itself.) Unequal access remains an issue, but let's not pretend it's a non-issue for any of the other options.

I'm betting the impact of results on personal liberty and similar closely resemble the impacts of other known cognitive disabilities. Just a hunch.

OH MY GOD. NO. “the greater predictive power combined with the growing number of people with AD might be the brick that breaks the back of the current health care system. (6)” NO. YOU DO NOT PUT THE BLAME FOR OUR MESSED UP SYSTEM EVENTUALLY BREAKING ON SICK OR DISABLED PEOPLE. NO. NO. NO. YOU. DO. NOT. DO. THIS. Go yell at insurance companies and congresspeople instead. NO. I hate you when you do this nonsense with autism and I hate you when you do it with AD and just generally hate it when you do this with the people who get screwed over by the current system that really, really wants everyone to be abled and to get briefly and treatably sick in ways that follow the textbook. And you know, this idea that we're a burden on some system always, always gets used to justify measures that reduce our personal liberties. When you write things like this, you are part of the stigma problem. Stop it.

(Try instead “The current health care system is designed for XYZ and not ABC. Given ABC, changes are needed.”)

The incidental findings question. Yes, protocols being decided on for these before the imaging. (Ulysses contract connection?)

“Much remains to be learned about functional anomalities.” (8). Well. Yes. We only seem to study this stuff when there's a perceived deficit. If it's worked for the person their whole life, why would we have noticed anything? [Hi, Galton the eugenicist deciding not totake issue with the lack of a minds eye because it seemed most commonin “men of science.” We're biased as heck about what unusual things we decide are problems and what unusual things we decide to study like the people who have them are objects.]

What do you mean by severity?

A question I found on Quora (then answered, but the answer here is longer):

Do people with autism have an understanding of their own condition? If so, why does it not lessen the severity of it?

Now, those of you who have been around my blog a while might know that I am an autistic person, not a person with autism, and that I have reasons for this. That's not quite the point of this question though, so it's not quite the point of my answer either. Poking some holes in the premise, on the other hand? Sure.

I'm autistic. I know I'm autistic. This was not always the case. I used to know I was weird but not that autism was a label that could explain some of my weirdness. (Affinity for the absurd is also relevant.)

I know that, related to my being autistic, I am not always able to speak. Sometimes I can, but sometimes I can't. Knowing that I can't always talk doesn't magically make me always able to talk. (There would be a bit of a paradox if it did.)

However, knowing I can't always talk means I can plan around not always being able to talk. I carry alternative communication methods: pen and paper, text to speech software on my laptop, a whiteboard marker... it varies with the environment. But who looks more obviously disabled? Someone who happens not to be speaking or someone using text to speech because they can't speak? I am taking an action that mitigates an effect of my disability. This action also makes my disability more apparent. Am I more severe or less for doing so? Does the question even apply to my situation?



I also know some patterns about what activities or environments make it more likely that I will be unable to talk. That's a fairly thorough understanding of one piece of how I work, yes? Well, this knowledge means I can plan my activities in order to minimize the chance of speech giving out on me. (Or I can choose not to care, since I very rarely have a reason to care about speech per se. Access to one working communication method matters. That one method being speech usually doesn't. But let's assume, for the time being, that we're dealing with a circumstance where I would prefer to be able to speak.) This planning means I may choose to skip an activity or to leave an event early in the interest of maintaining my ability to speak. If I make this decision (and say why, if asked), does my non-presence for disability reasons make me more severe? Does maintaining my ability to speak make me less severe? Does the question even make sense in my situation?

On an entirely different note, I know sitting "properly" still is difficult for me. I could spend lots of energy doing so anyways (and probably not remember much of what I heard in class.) I could bring drawing or sewing with me. (It looks weird, but it's not obviously an autism thing. These take little enough attention that I'll retain more than I would trying to sit properly still, but enough that it's not perfect. It's often been my best option.) I could bring a fidget toy, marketed to neurodivergent people. Really, it's probably marketed to parents of neurodivergent kids but that's another issue. (I'm a bit more obvious now, especially if I'm also flapping and rocking. However, we've maximized my attention and retention.) So, the more visibly obvious my disability is, the more I'm getting done. When am I "more severe"? When am I "less severe"? What does this question even mean?

I get more obviously autistic (less "visibly high functioning", thanks Dani) when I order my life in ways that make it easier for me to get stuff done.
What do you mean by severity?




Oh, and btw, I totally have a Patreon. Support my tea habit?

Dear Well-Meaning Autism Mom Looking For A Surrogate Mom For Your Son, Please Don't Assume The Person You Approached Is A Girl Or Straight

Guest post by Elizabeth Rosenzweig. 

So I run an autism meetup. Parents of post-pubescent autistics are not invited. There’s a number of reasons why but one of them in particular has been making the blog rounds: well-meaning but misguided parents who, out of concern for their son’s (and it is always a son, isn’t it?) inability to fend for himself, look to set up a trust fund for him in the shape of a kindly woman savior who will cook and clean and pay his bills for him, forever and ever, amen. The guys themselves can be the problem, too; a person who should be a grown-ass man asks you out and is then shocked, SHOCKED, to discover that you’re just as shit at getting A Job, remembering to pay bills on time, and feeding/picking up after yourself as he is, if not worse. (I, uh, may or may not have very personal experience with that one.)

But I’ve already had two very smart friends I admire address that aspect in plenty of depth, so, well-meaning but misguided parent, let me address another one that you may not have considered.

That long-haired, girl-shaped, pretty, kind person you met, the one you think would look so cute on the arm of your precious manchild (or your precious self), might not actually be a girl. Or straight.

They could be asexual or aromantic - content and whole within themselves. They might be allosexual but gay. They might use she/her pronouns but feel utterly alienated from femininity as a concept. They might be a genderless android. They might be a trans man. You just don’t know!

It’s almost like that long-haired, girl-shaped, pretty, kind person is… hear me out for a second… a person. Not your personal insurance policy, or your uncompensated PCA, or your romantic-comedy-prize, or your glorified German Shepherd, but an entire human being unto themselves, with weaknesses and feelings and ambitions beyond saddling themselves to some cisgendered guy who wants things done just like his mom did them. *They* might be the one needing a PCA! They might maybe sometimes need someone to hold them while they cry hysterically because they foolishly expended all their energy for the day on folding three-quarters of the laundry. (I, uh, may or may not have very personal experience with that one too.)

How do I even address the sexual side of things with you? You, hypothetical mom, have almost certainly had experience with shutting up and taking it while a male partner got his rocks off inside you. Is that how you want your son treating his life companion? Is that how you would want to be treated? I’m certainly sick of it, or worse, being treated as deranged for exploding in frustration after having my own needs go unacknowledged and unmet for years at a time. I got so sick of it that I quit men and went monogamous with an assigned-female-at-birth genderless android. So far, so good. But how would you know that from looking, unless you saw me and my wife together? 

The point is, you don’t consider those things. You think about your own fears, which are visceral and immediate. What will become of my child after I’m gone? When will I have a chance to feel like a person and not a 24/7 PCA - won’t anyone please help me? And those questions resonate so loudly inside your own head that you don’t stop to ask yourself the ones I’ve posed here. That’s not my problem, though, nor is it the problem of any long-haired, girl-shaped, pretty, kind autistic. It’s not fair of you to put your anxieties on us, when we have so many of our own to contend with.

One of the side benefits of running an autism meetup is that you have the opportunity to meet a lot of people of all ages and genders and walks of life. I have quite a few lovely gentlemen who are regular attendees. Let me reassure you, dear, hypothetical mom, that almost all of them have turned out just fine, with the support of agents and agencies who are meant to do the work that you are looking for from that nice autistic at the meetup. It’s actually the ones whose parents have done the most coddling and interfering who are struggling the most.

So please. Stop putting your cissexist, heteronormative expectations on people you barely know, in the name of providing for your own offspring. You’ll start working on real solutions much faster once you do.

Please, autism researchers, study these.

Quite a bit of autism research is what I would call, to put it delicately (as in, I am neither screaming nor swearing at it), abled nonsense. I definitely needed to know that my asexuality as an autistic AFAB is a testosterone-related disorder. I also needed to know that I only think I'm trans (nonbinary to be specific) because autism is an extreme male brain. And it is of the utmost importance that I know I am incapable of humor in any form, but especially sarcasm. Autistic satire is definitely not a thing, right?

Oh, wait. All of that is abled nonsense. So is the idea that the optimal outcome is a loss of diagnosis, by the way. I'm most able to do the stuff I care about when I am visibly autistic rather than spending energy on not being so. Dani briefly achieved so-called indistinguishability, an older "optimal outcome" and it was not worth it. (Also I'm the friend.)

I would like to see research that is not abled nonsense. I especially would like to see more of this research being done by autistic people, because no, I don't think we need neurotypical people interpreting the results in order for them to be valid. I'm with Nick Walker here: when we depend on less-marginalized researchers to "discover" our hard-earned truths, we're reinforcing the idea that the knowledge we've figured out for ourselves as a community isn't valid. Which communities get to have valid knowledge?

That said, there are things I'd like to see researched more. Not necessarily in the current structure (because let me tell you, I expect someone like, oh, nearly any non-autistic autism researcher who presented at the Coalition on Autism and Sign Language where I threw myself into a wall repeatedly, to make a complete mess of the topic.) And preferably by autistic people with experiences relevant to the topic.

1. Inconsistent speech and AAC support for autistic adults.
   
   I'm an adult. I can speak (usually.) When I can't speak, I use AAC. AAC research seems to be focused on two groups: adults with neurodegenerative disabilities, and young children. Autistic adults who can sometimes speak and sometimes not are neither of those categories, but there's a lot of us. This might be more common than "always has speech" is, among autistic adults, but thanks to behaviorist approaches and the assumption that "can sometimes" is identical to "can consistently" given a sufficiently strong motivator, professional types tend not to get this. I would like to see research on what supports, including AAC, tend to make communication easier/more effective for us.
   
2.  Employment supports that are neither sheltered workshops nor "we think they're all good at technology" start-ups that might pay well but are still pretty segregated.
   
   Sheltered workshops can (and often do) pay below minimum wage. Autistic people, like all disabled people, are more likely to live in poverty than abled people. Are these facts connected? You bet! Programs like Specialisterne, on the other hand, are founded by (usually parents) based on a stereotypical idea of "autistic strengths" that usually means technology work. Or Microsoft has a program to hire autistic workers now. These can be useful, if you're an autistic person who wants to be working in technology. I worked an IT job for a while. It was a good experience in many ways. I also never want to do that again. I like writing. I like teaching. I like art. I've earned money on all these things (mostly teaching) and would happily continue to. These are not the specific jobs you're going to come up with if you're a non-autistic person trying to provide employment support for autistic people.
   
   So maybe, just maybe, we need to take a look at employment supports that are not limited to a specific kind of job. (Or, you know, look at more kinds of jobs? Because the needed supports will vary based on what kind of job it is.)
   
3. Burnout.
   
   After reaching some ideal of indistinguishability and hanging out there for a little bit, or just after the demands get to be too much even if we were never indistinguishable, we can hit a breaking point. Then everything is way harder, we have way less energy, and our abilities shift. Sensory overload might be more of an issue. What can we do to make this less likely to happen? What supports would help a person going through this? People dealing with this have written about it, both during and after. Getting some idea of what tends to help us vs. what tends to make things worse would be great for anyone who deals with this in the future. Even better if we can help people not have this happen. Burnout is not fun.