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I had a dream. Last Saturday was my last known weekend for a while. I woke up at like 6am, because apparently my body loves a schedule even while it’s exhausted. But after eating a bit and lying in bed for a couple hours, I made it back to sleep.

I rarely dream, but I tend to pay attention when I do. Sometimes they’re sad. But not always.

Friends, Together

I dreamt of a group of friends, meeting at a restaurant I couldn’t name, but was cozy and dimly lit. Though a couple faces were familiar (Chris, my spouse, and Simon, a person I don’t count as a friend anymore due to his decisions…) most faces I didn’t recognize. Yet each friend (there were at least 7) was familiar and comfortable. We were gathered there to play a tabletop RP game like D&D together.

In this dream, I was DMing (running the game while the others played), and I’d only had minimal time to prepare because of my work. But it didn’t matter, because everyone was having so much fun. Laughter and jokes were frequent. The game got offtrack sometimes but it didn’t matter because everyone was enjoying the experience. There was some drama, but it didn’t bother me for some reason. Perhaps because I knew everyone liked each other and would just get over it. Or perhaps because I’d finally perfected the skill of disengaging and trusting people to be adults about resolving their issues.

A Valued Time

Regardless, we were playing some kind of high fantasy game, but it was a heavily homebrewed thing. I thought D&D, but thinking back on the class names, they’re not from any edition I’m aware of. We played until everyone got hungry, after which we ordered food. There was something for everyone at this restaurant, even me with my incredibly strict no-dairy, no inhumane meat, whole-foods-only thing.

As we were chattering and waiting for food, a couple of the players went off together and did some character development on the side. Because the world and those characters mattered to them and sparked their creativity. After they got back, I offered to run this game every week. I told everyone I had really limited time for prep, so they’d probably only get shallow things like “a quest to kill a particular monstrous pig because a nobleman wanted to eat its bacon.” Somehow, everyone was fine with that. Several jokes were sparked off the bacon idea, and everyone agreed they wanted to do this every week. I felt proud that I was going to be able to help provide this experience for everyone.

A Nation, Known

As we were settling down at the table, I noticed a TV in the corner was playing some kind of video. But instead of an advert for the latest probably-useless product, it was a short piece saluting and depicting immigrants in the US. And acknowledging their importance, and that all of us are descended of immigrants if you trace our ancestries back far enough.

At the beginning, it shunned and called out white supremacy for the lie that it is. But the focus of the movie was really more on the countries from which we all came. There were these little animations with country flags, representing people or populations from those countries. Eventually the shape of the US was formed in the flags of those other countries. This was accompanied by triumphant music.

With my friends, I watched this and put my hand over my heart, acknowledging patriotism and support of this country where differences are strength, and all people have value. I began waking up, but held onto this dream as long as I could. It was perfect and beautiful in ways I may never experience in this life, and I wanted to at least write it down.

What Might Be

This is not the country I live in. It’s the country I wish I lived in. As a nation, we began with immigrants from Europe butchering and displacing the First People nations that lived here. That behavior continues to this day. We begrudgingly allow immigrants into the country (sometimes), but often relegate them to jobs nobody else will take. Such is exactly the case in the job at the food factory, where I find the conditions utterly intolerable. But Spanish is spoken freely and fluently on the floor between most of the line workers. They’ve built a community of sorts, even as the job and the need for money eats away at their lives and souls.

I can’t honestly say whether any of the people in my D&D-esque friend group were black or brown. My focus was less on their faces and identities (save the surprise of the inclusion of one), and more on the atmosphere and interplay between them. For my own sake, I hope so. I didn’t have visible minority friends growing up, and I’m afraid it probably shows in how long it took me to recognize how bad things really are for black and brown people.

Likelihood

I can’t decide if this thing I dreamed is even possible in real life. My sense of reality suggests the first part, with the friends, might be. Maybe not those exact friends, but a friend group like it is a possible thing. It wouldn’t have to be a restaurant. Could be someone’s house, or a park, or whatever. Somewhere everyone could be comfortable.

As for the broader change in the US… well… it’s what I hope for. It’s what I advocate for, when I can. I vote for it when the option is there. I’m old enough to know change typically doesn’t happen quickly. In the dream I felt like I was in my 20s… But at the rate of change I’ve seen…. I’d almost guess I’d’ve had to be at least 60 years old. Maybe even 80.

I won’t rule out real life being able to deliver this dream, if I worked hard for it. I’d need to make friends actively, which is really hard now that I’m working full time. Learn how to improv, so I could run a game off-the-cuff like that. Both of these things are possible, but would have been quite difficult for me in the past.

Are they possible now? I’m not sure.

I also can’t shake the feeling that I’ve been shown a small portion of heaven. That perhaps this dream is not truly achievable in this life.

Wouldn’t it be wonderful if it was, though?

https://www.forbes.com/sites/andrewpulrang/2021/06/30/5-sensible-guidelines-for-interacting-with-disabled-people/

I’m really struggling this week, so please have this article passed to me by a fellow advocate.

Like the author, I find there’s a general discomfort people display when interacting with people with disabilities. The way we’re treated can vary wildly. The experience ranges from simply ignoring the person to treating them like a helpless baby that needs your help for everything.

You could consider me “fortunate” in that my disabilities are more or less invisible. Autism doesn’t typically have physical differences. Neither does depression, nor does an anxiety disorder. Effectively, I walk among you, camouflaged to seem “normal.” A person trained to recognize autistic traits might recognize my autism, based on how I communicate and move. But the average person has no idea.

That is not always a kindness. When I break the illusion of normalcy, the reaction is often very negative. Because the observer is surprised as well as upset, they don’t handle the situation gracefully. Hurt feelings and unkind words are common. For example, I once had an acquaintance over to my home in college. We talked for hours, and accidentally ran my mental and emotional energy out. As a result, I had to rather ungracefully have the acquaintance leave so I could recuperate. The suddenness really hurt her feelings, and that’s likely part of why we don’t talk any more.

In contrast, visible disabilities are ones you can see. An amputee, or someone in a mobility device or wheelchair, are obvious examples. There is typically no escape from the recognition. Additionally, some people decide, upon recognizing the disability, that the person must need their help. The implied assumption is that there’s no way the disabled person could handle the situation by themselves, or that it’s just too painful to watch them struggle. Either assumption is degrading.

The article doesn’t use these precise words, but the autism community has a quick way of saying some of the advice in this article: “Presume Competence.” Basically, make the assumption that the disabled person can handle things themself. A disability, visible or not, does not necessarily mean the person can’t navigate daily life. Many of us find workarounds for ourselves over time. They simply aren’t intuitive to a non-disabled person.

Autism as a Disability

This is a bit of a debate. I would personally argue that yes, it is. In part because of the structural ableism and prejudice in our culture, laws, and society. The way others treat us and the opportunities made available to us impact our ability to thrive and grow.

In short, the social model of disability applies here.

I don’t personally think that covers everything, though. Even if you fixed other peoples’ behavior and the systems we live and work in, some autistic people still have significant medical issues. I don’t even mean things like cerebral palsy or epilepsy, although those also exist.

No, what I mean is things like needing a dairy-free diet, or really high grade air purifiers. Our biological processes can be really, really fragile. If one tomato molds in my house, I begin falling into a depressive state. If I were to drink a glass of milk, I would be in a bad mood in 15 minutes. And the bad mood would last at least a day.

Some days I have trouble communicating my needs, emotions, and thoughts. Even days when I’m alone, that can be true.

So I don’t feel the social model of disability explains all those things. Even if I wish it did, so I could just blame others for my hardships.

I hope you find this article as helpful as I did. Even among disabled people, there’s a lot of variety. And I myself, as a person with invisible disabilities, would probably hesitate and make mistakes when talking to someone with visible disabilities. It’s okay to make mistakes. It’s good to educate yourself ahead of time to avoid making mistakes, though. And that’s why this article exists!

I can’t begin to stress how important soundproofing is for my daily wellbeing. Sound sensitivity in autism is a common experience. I’ve talked about sound sensitivity before in the context of noise-canceling headphones. As much as I love my headphones, it’s simply not feasible to wear them everywhere.

So today, thanks to Autistic Science Person, we get to talk about soundproofing. Or sound dampening, since getting a room to truly be silent is quite a feat. And not necessarily good for the people inside anyway. (Imagine always being able to hear your own heart beat and the blood rushing through your veins, and it might become a bit clearer as to why perfect soundproofing is not ideal…)

Sensory sensitivity is an issue I personally deal with every day. It mostly affects my hearing, and it works like this:

For a full 60 seconds, stop everything you’re doing. Listen to your environment. Are there people talking? Fans running? Appliances humming? Pets moving around the house? Geese, songbirds, or airplanes flying overhead? Is a TV on somewhere? Really strain to listen and identify every thing that’s making noise. If you’re able, write down every source of noise you can hear in that minute, no matter how quiet or irrelevant it seems.

Now, how much of that noise were you aware of before doing this exercise?

If your brain and hearing are typical, you most likely were only aware of the loudest thing or two in your area, unless it was relevant to you personally. Your brain, you see, filters out noise it considers irrelevant. This is generally a good thing. It keeps you from having to pay attention to stuff that’s not important. It’s a mental trick to save energy.

People with sound sensitivity don’t have that filter. Or if they do, it doesn’t function as well as it should. Because of that, we can easily become overwhelmed by loud noises or noisy environments.

Noise-canceling headphones and earplugs are the first and most obvious line of defense for autism sound sensitivity, but as Autistic Science Person says, they’re not always an option. Also, having a safe space to retreat to when overstimulated is incredibly important for my wellbeing.

My current home is fairly well soundproofed against noises from the neighbor we share a wall with. But there’s only so much you can do when the house is directly on the typical path to the airport. I honestly don’t mind the airplanes, for the most part. In my first apartment, I also didn’t mind the trains after I got used to them. These sounds are somewhat predictable and I can immediately identify them, which helps me manage always hearing them.

When I lived in apartment buildings, it was significantly worse. The soundproofing was minimal, especially when it came to the hallway. Doors slammed all the time. People yelled in the hallways. The buzzer to open the front door would go off at random intervals, and sometimes people would just buzz random apartments until someone let them in. Sometimes you could hear disagreements in other apartments.

I don’t miss all that extra noise. If I do the listening exercise I had you do before, I hear the air purifier fan, the hum of the HVAC, the hum of my computer, and that’s about it. Anything else, I choose to add to my environment. I’m presently bird-sitting for some friends, so that’s adding to my ambient noise. I also have a livestream (think like live TV) going to help make the bird comfortable. But I have it on very quietly so I can ignore it better.

I would still really like to have a space that’s decked out with acoustic foam, as Autistic Science Person suggests. Maybe, in time, I could rig the bedroom with that foam or with egg cartons or whatever the less expensive options are. Or create a quiet sensory box, like one autism dad did for his kid.

I love Autistic Science Person’s recommendations in their post. They have direct links to good sources for acoustic-dampening foam and guides for how to install it. They’ve also put together a Ko-Fi for families that really can’t afford to buy foam or have it installed.

I’ve personally bookmarked this post about managing sound sensitivity with autism, since I’ll want it for later. I hope you find it useful too.

I ran across an article from Ann Memmott recently about conflicts of interest in autism research. The article proper is worth your read, and so is the research paper she was responding to, but I also wanted to give a bit of background in what she’s talking about.

Her main point is that a lot of autism research has been done by people that have no right to be doing it. Most notably, a lot of Applied Behavioral Analysis professionals have produced most of the research on the subject. Obviously they’re going to want to say, “Yes, ABA works!” If they don’t, they lose their jobs. (Alas, this is not the only problem with ABA…)

A more typical example of this kind of thing would be a teacher being asked to grade her daughter’s homework. Or a judge presiding over the trial of a family member or close friend. A doctor who owns stock in a pharmaceutical company taking a job to test their products. In each case, someone with an obvious bias accepts the role of an impartial judge.

Poisoning the Well

In science, we call this a conflict of interest. Because it produces inaccurate, unfair, and untrustworthy data, educators always teach avoidance of conflicts of interest. Authors should be honest about their conflicts of interest. As a failsafe, publishers should keep them honest by doing their homework on each author. Presently, my research suggests publishers don’t do that homework much, if at all.

Left unchecked, the compromised researchers may publish data they made up. The funders of the research can push for types of research that’s likely to show the results they want. Or, more subtly, companies can demand a certain type of analysis and interpretation of the research results. Finally, companies can try to suppress research results they don’t like. In all cases, greed and ego twists or hides the truth.

It’s worth noting that even if the researcher chooses not to act on their biases, it still counts as a conflict of interest. The issue is that they have that chance, and may unconsciously act on it. Even as they do their best not to in service of the truth.

A single false study can influence future research. The way science works, researchers pick topics to study based on the results of previous research. So if product A is effective according to a false study, future research teams (who may or may not be corrupt) may choose to study variations of Product A. We hope that the future teams’ data will show the truth, but that doesn’t always happen. The future teams may simply conclude that Variation 1 of Product A was not as effective as the original Product A.

This is how whole streams of research theory can be based in lies, and turn out to be pointless. This is, Ann Memmott says, exactly what has been happening in autism research.

Hypothetically

When I served on the DOD’s Autism Research Program as a community reviewer, each application had a section to disclose conflicts of interest. We had every possible option to avoid committing the offense, right down to, “I suddenly realized I have a conflict of interest, weeks after I’ve read, rated, and reviewed this paper.” The organizers were very studious about sending identified conflicts of interest out of the room before each application.

The thing is, I don’t know whether any research was done into the reviewers to be sure they were honest. I never had any conflicts, because I’m not a member of any institution that does research. Beyond my typical existing biases, like “please don’t commit eugenics and erase autistic people from humanity,” I don’t have the connections and relationships with such entities. I’d certainly like to think the government did its due diligence and made certain no conflicts of interest affected the reviewers, but I truly don’t know.

I strongly suspect the Department of Defense wouldn’t publicize a conflict of interest in their scientific reviewers. It would reflect badly on the organization. They would probably blacklist the lying scientist and not hire them again, but not publicly denounce the offender. If they did publicly denounce the scientist, that scientist’s reputation would be ruined, and their career would be over. If the conflict of interest was accidental, that’s a good scientist’s life and career ruined forever. Instead, the organization would likely hire a replacement and move on.

Generalizing

It’s not much of a stretch to assume prestigious publications might take similar courses of action. In the current culture, people seem to distrust organizations that admit they made a mistake. Rather than risk their own reputations, a publication might decide to simply let the conflict of interest slide. Assuming, of course, they even noticed it in the first place.

Also, the number of research articles and proposals submitted for publication has risen over time. It costs money and time to hire people to look into every potential author. In the industry, the norm appears to be simply taking the potential authors at their word. In high profile cases, a publisher might retract a published study and condemn the author. But this doesn’t happen often.

Moving Forward

Honestly, I’d like to see jobs specifically hunting for conflicts of interest in the publishing industry. Clearly, we cannot rely solely on the honesty of researchers. It would be wise to create an additional check on the publication process.

As I understand it, this problem is not specific to the autism research community. Pharmaceutical research suffers from a plague of corruption exactly like this. Which means many possible jobs. These jobs could be remote, requiring only an Internet connection and a knowledge of how to find people’s publishing history, resumes/CVs, etc.

Honestly, this is the sort of job I might like doing. It’s a job detail-oriented autistic people overall might thrive in.