Do Virtual Assistants help with Disability Issues?
If so, how might they be able to help me function better?
Content Warning: This goes a little deep into my issues and might be a bit upsetting to read. I figure this comes with the nature of asking for help. Please don’t interpret it as me whining or complaining. I’m not aiming to write up a sob story or get sympathy. I’m simply trying to be clear on my needs as best I can.
A friend recommended looking into trying to get help with issues I face, possibly via a Virtual Assistant. I thought it was a good idea, so I began to explore options. This document is my attempt at summarizing my needs to help figure out if this is the right thing for me. I also started a twitter thread on the topic.
Right now I am unsure what exactly is available to help me. I’ve been doing research on the topic but most of what I find are for business assistance and they don’t really have a good fit for my needs.
The original tweet is here:
Does anyone have experience with using virtual assistants to help with adhd/autism difficulties and other disability issues?
Not like Siri or google home, but like for-pay people who help you with things? This is hard to research.
I need help. I don’t know how to get it. — @ultimape, Tweet ID 1487182531355099140
There were some more details in that thread but I’m going to be detailing them below so don’t feel like you need to read it. More copying here for my future reference.
I’m not necessarily looking to solve all of them right now, but would love to figure out ways a virtual assistant might be able to keep me focused when I am able to deal with them.
I’ve also been logging things I read that seem useful in a channel on my are.na but as I don’t have a good sense of how this would work for someone who’s not looking for business assistance, I’ve been struggling things that are relevant.
Getting Responses
It turns out asking on Twitter was a great way to start trying to figure this out. I wasn’t expecting it, but a couple people already reached out to me! It seems just writing “Virtual Assistant” on Twitter ends up getting attention from people looking to help with that.
I normally don’t like that sort of thing because it feels like spam, but in this case I found it a pleasant surprise. So far it seems to have all been real people and not automated bots.
So far the main questions I’ve received have been something to the effect of:
Could you go into more detail about the challenges you’re facing
More specifically:
What you meant by “adhd/autism difficulties and other disability issues”?
and a more generic
What kind of help were you looking for?
This document is an attempt at answering these, and hopefully help me work with a VA on figuring out more specific ways that they might be able to help me with.
Challenges I’m Facing
I’ve been joking about how I am basically the “Absent Minded Professor” trope.
I don’t exactly have a good grasp of what kinds of things I need help with. I think if I had a better sense of that, I wouldn’t be in the kind of situation I’m in right now. The best thing I can do is explain the issues I run into and the challenges it presents.
The idea of actually getting help has motivated me to into putting some thought into it and I think I’ve made progress. I managed to break my challenges down into major sections with notes about how they effect me, what I know works so far, and thoughts on what might help. This is by no means an exhaustive list, but it hits the main challenges I face.
It is still quite long-winded. Hopefully the section headings will help make it easier to scan thru them.
Also, don’t feel like you need to read everything I link to. I try to provide references to ideas and links to papers for context, and for people who are curious, but they aren’t necessary to read for general understanding. This is a habit I’ve picked up because of my communication challenges, so don’t worry if you don’t have time for them.
1. Executive Functioning
1.1 Overview
I have some kind of executive function disorder. It is a thing commonly associated with ADHD. I’m formally diagnosed as autistic, so it would seem to be due to there being an overlap with these traits.
It’s not so much that I can’t plan out my tasks, but that sometimes I just can’t seem to focus on them. I know what is a high priority, but often what I do in the moment isn’t always the best thing I should be doing. And trying to force myself into working on something else ends up not being effective. It’s like my brain shuts down and it’s nothing but stress.
And its not just ignoring something simple here and there. I’ll literally put off important activities in my life that I need to do to stay alive. More times than I’m willing to admit I’ll put off laundry or avoid taking a shower.
To be fair, many of these are challenges for other reasons. Sometimes it is because I physically can’t stand up well so doing it for a for a long time in the shower is hard. Or carrying heavy things up and down the stairs to the washing machine ends up being difficult.
On many days I’m happy to get out of bed, get dressed, and do something productive on the computer. The only thing I can reliably do is go to the bathroom, even if I have to lean against the wall while going thru the hall way. So avoiding important tasks even when I can do these things, means I can’t be as effective as I should be. While this is not always the case (and some recent health experiments have improved this measurably), I go in and out of these states often enough that making effective use of my productive times is important.
For example, this past week I’ve had 4 different important tasks I should be doing (one of them writing this document), but yesterday I spent 4 hours making a weird how-to video about a no-bake prebiotic cookies. This was good because it helped me see if I was up for doing a physical task (thus testing the health experiment). And I ended up with a few days of healthy breakfasts I wont have to worry about… But it wasn’t at all what I had planned on working on that night. It was spur of the moment and while fun, not really the best use of my time.
Why I felt the need to make a video of it? I have no idea. My excuse is that the video made it fun and interesting so I could finish making the cookies, but it seems silly in retrospect. Sometimes my life feels to be just a series of chaotic activities like that, with long spans of doing nothing in between.
I’d like to be able to focus on my actual goals more.
1.2 Successes so far
I’ve managed to embrace the flighty nature of my attention a bit, turning it into an asset where I can. But it still kind of sucks not being able to guide my focus onto doing things I genuinely want (or need) to do. Even my main marketable skill right now—exploring research and health / biology topics—isn’t much different from making that video.
The main expression of this is how I enjoy getting distracted by rabbit-holes around my health interests and writing about it as I go. I even managed to turn that into being employed to do for a year or so! But that fizzled out due to the pandemic changing the research org’s priorities and me not being able to direct my attention better.
Right now the best I’ve got going for me is working on my motivation levels in general by improving my health & diet. So I do more things overall and can channel that energy toward an eventual goals even it ends up being chaotic in practice. All the structure and routines in the world don’t help much if I can’t physically get out of the chair I’m sitting in. It does seem to be working, if slowly, but because of the issues I discuss below, it’s very hard to maintain momentum.
1.3 What help here might look like
I do know I find it useful to have people talk to me about what I’m doing or how things have been going. Occasionally a friend of mine (or my GF) will ask me what I’m doing and it will kick me into gear. Something about trying to talk about my goals helps me make them more concrete in my mind and that makes them actionable. I’m not sure why.
I describe this loosely under an umbrella of “being event driven”. Sometimes all it takes to remind me I need to eat food is to have my girlfriend walk in to the room and say ‘Hi’. This event stops my train of thought long enough and lets me introspect about my state. This is the ‘absent minded professor’ thing I mentioned earlier. I believe this is happening in a more complex way when taking about my tasks but can’t articulate it well. I do know it feels the same.
That effect also helps me write more salient thoughts. Writing stuff for a specific person helps me with taming my random thoughts into more cohesive narratives. Sometimes even a really good question is all I need to solidify the weird threads of ideas that float around in my head. And as so much of what I spend my time doing is this kind of work, I can’t state enough how useful it is to have someone to explain things to. In practice for a VA, this might mean reminding me about social outlets where I can write about this kind of thing to people.
I get the sense that I am more willing to work on something for someone else’s sake than my own. E.g. I have no problems motivating myself to take a shower before visiting someone because I know they’d be uncomfortable if I was gross looking. The reason I am even working on this document is because someone is depending on me to finish it. Having reminders that subtly hint at this might help a lot. E.g. another human being asking me “have you followed up with [ x ] you were going to do for [ person ]?” seems to be more effective than just a popup in some task management tool, if only because it will mean I have to think about how to respond to them.
Also I am rewarded when I can share what I’ve accomplished with other people. This is partly why I write so much on twitter and create/collect all the research notes etc. It feels good to share what I’m learning because it’s something I’m proud of. And at this point I’ve gotten enough people commenting on how it helps them learn/improve too that I also feel good about it helping people. Helping me remember that this stuff helps people and I feel good doing it might help keep me more focused. That doesn’t come up when I get a task pop up that just tells me what I should be working on, but might come up in conversation.
2. Unpredictable Memory Issues
2.1 Overview
The main thing I run into that ends up being an issue seem to stem from what I believe to be a Multiple Sclerosis related problems, in particular memory issues. I get weird ‘brain fog’ and my memory for things will occasionally completely disappear. I will temporarily forget everything and lose track of time. On the outside, this looks like a couple days of scattered thoughts and varying levels of short term memory loss. This is something I am actively working on addressing as part of my own research, but its not something I can confidently say I have a handle on.
When this gets to it’s most extreme forms the challenges are in the moment-to-moment. I’ll go out to prepare food and begin to grab a plate. Then upon reaching up for the plate I’ll realize I need to use the bathroom to pee. On the way to the bathroom (while still holding the plate), something will surprise me and I’ll forget what I was doing. I’ll then be standing in the living room holding a plate, while anxious from needing to pee, while trying to deal with the more immediate surprise. I will eventually have to pee so bad that I will make it to bathroom, set down the plate (“why do I have a plate?”) and relieve myself. After cleaning up (washing my hands etc). I’ll go back to my room. And not eat and forget the plate and the surprise event entirely.
Insights like this have been super valuable for me in uncovering ties between Multiple Sclerosis and other neurodegenerative disorders. But in the moment it occurs, they are absolutely awful to deal with.
I am still uncertain if this is Multiple Sclerosis or some kind of schizophrenia related memory symptom. In fact there may be little difference given the weird overlap in M.S. + schiz etiologies. Worse, these very struggles I’m describing make it really hard to jump thru the medical diagnostic hurdles. I literally haven’t seen a doctor since 2015, and before that it was in 2005 to get vaccines to go to college.
2.2 Successes So Far
The big thing this disrupts its persisting on projects and ideas without a lot structural support.
Many of my challenges with executive function as it relates to memory were being helped by a time-tracking / task tracking system I was using. I had something akin to “GTD” set up, and also used bullet journaling loosely in the style of “Time Management for System Administrators”. I found these extremely useful for keeping track of daily minutia and to stay on top of my daily function.
Though it did feel a little weird using these systems for planning grocery shopping or keeping track of things that would otherwise be considered standard household chores, it was working well enough.
To be perfectly frank, I could probably go for a Project Management Professional certification and pass it without even trying. But these memory challenges started causing havoc here and all these systems all fell apart for me. I think I counted 6 different note repositories and 4 paper journals right now. I just forget I have them and can’t maintain the habit anymore. My hand writing also stopped working well and at this point all my habits and routines proficiencies I had using external systems them have been lost. They are great for people who have reliable working memory and a stable living environment, but it all seemed to fall apart once my health started declining.
The memory issues got really bad for a while in 2014-2015 when it compounded with motivation loss from Major Depression. I developed an adhoc way to deal with it and I wrote a bit about my coping process during that time. It kept me hobbling along an even allowed me the structure I needed to figure out what was causing the depression. Though I found even after the depression went away, I was still struggling with the memory issues.
The big shift I took on was embedding memory into the environment. So structuring cues and building up habits that allowed me to do things automatically as a matter of routine. Like I used a sheet of paper on my bedroom door to remind me to look at the clothes basket when I went to shower, and I kept the basket by the door to my room. I wrote another sheet on the basket that said “half-full => do a load. Don’t let it build up!” and over time I started unconsciously looking at the basket’s level whenever I left the room to show in the morning. This meant I was automatically reminded to do laundry as part of my morning routine. It was great!
Abstractly, I think about it like how an ant uses pheromones to encode information about their world. I had great success setting up my living environment to facilitate having memory aids and place prompts in my environment to remind me about stuff. But that has been challenging since of some unfortunate changes in my living situation.
In an ideal world, I’d be allowed to write notes on mirrors and have a stable enough living situation that I could leave written notes next to tasks to remind me why they are there. Even better I’d have the ability to move things around to optimize for this. Given control over my environment, this is something I am able to do on my own (and will do). However Where I live now I am not able to do this for a bunch of complicated interpersonal reasons. It’s been a struggle.
In the interim, I’ve had some luck with keeping a sort of journal with some friends where we remind each other about coping skills and help remind each other about stuff that has worked in the past, but that hasn’t been reliable enough for the extent that I run into these issues.
2.3 What help here might look like
I don’t think a Virtual Assistant can help with the extreme version of this issue. Obviously I can’t have them looking over my shoulder 24/7 (nor would I want one to). But I think it would be helpful to have someone who can be patient with me while I cope with it and follow up and check in with me to see when I’m back to myself. Someone acting as a virtual cue would be tremendously valuable.
Coming out of these fugue states often feels like rebooting my brain, and part of the slowness there is just trying to find everything I misplaced and go thru everything to catch back up to where I was.
The challenge I face is that I struggle to recover from these setbacks and get moving again. This leads to occasionally long stretches of time where I get stuck in this weird semi-lucid state where I could do things, but don’t. This seems to be manageable if I am simply able to remember what it was I wanted to do. Someone who can help to remind me about things that I need to do via something like regular emails, or phone texts might be a way to go.
More directly, I will forget that I have lists of projects and tasks on my plate (or what service I put them in) and so I never start to work on them. This compounds with the executive functioning problems I discussed in the other section. Paying someone to act as an external memory for those important things might help me quite a bit, in particular if it doesn’t require me to reach out and remember to ask them.
3. Obsessive Interests
3.1 Overview
An additional complexity layered onto the Executive Functioning issues and memory trouble, is the autism associated obsessiveness often described as (“restricted interests”).
While more useful than those other two, given this intensity of interest means I am able to learn and stay productive on a topic, it does also complicates things. It means I’ll often get so sucked into an obsession associated project to the point that I completely forget all my other ones, often to the point of neglecting them entirely and never picking them up again. They get pushed out of my focus.
This seems distinct from the memory issue because it’s more a result of hyper-focus than some the fugue state, because I still typically have my memories and faculties intact. It is also something that when it does happen is often quite useful overall because of the heightened levels of productivity it brings.
Still, this has lead to overlooking things that are important, like making sure to follow up on long term tasks (or remembering to go shopping). So the net result looks a lot like the problems I run into with memory issues, but the underlying cause is different.
3.2 Successes So Far
A lot of my life is structured around capturing the output from these states in a way that I can continually build on over time. It has a relationship to the executive function aspects because it’s not very predictable or directable, but it usually ends up being on something I’ve worked on before.
It is also usually something I do want to work on and I don’t consider this to be misdirected energy. It tends to be more like a highly-productive flow-state than something that is a chaotic distraction. Much of trying to be successful in focusing on other tasks is because of how much not doing them distracts from my effectiveness here.
3.3 What help here might look like
This is where adaptivity is essential. Having someone pay attention / ask if my forgetfulness is driven by memory or driven by obsessiveness is important. A reminder tool can’t make that decision and so can’t choose the best course of action. I may not even remember to make this distinction myself (without prompting) due to how this is internally experienced.
I don’t have a good sense of how to describe the nuance well here, but I know I specifically don’t want to have reminders during these states because having all my attention focused on the task at hand is actually good. If I’m hyper-focused on something, want to be able to keep doing that ‘deep work’ and take advantage of the intensity while it occurs.
These are some of the most productive states I can be in and I only ever wanna be jostled out of them if a task is extremely urgent and important. Aside from maybe an occasional reminder to plan ahead for making sure I eat and drink and make sure I haven’t fall into a memory fugue from the stress of it, this is generally a good thing for me an I wanna facilitate it.
4. Non-24-Hour Syndrome + Sleep Challenges
4.1 Overview
Another complication that I regularly run into is my sleep schedule. No matter how hard I try, I am not able to synchronize my sleep with a 24-hour day cycle. It’s a condition I’ve learned is termed “Non-24-hour Sleep-Wake Disorder” or “hypernyctohemeral Syndrome”.
The challenges this presents to me are myriad. From generally getting higher rates of jet-lag when I don’t stick to my awkward schedule, to challenge around waking up for scheduled events. There have been times when I haven’t been able to get good food for months because of store hours being out of sync and difficulty with getting rides.
Web MD has a fairly good review of the condition.
Eventually, your sleep schedule goes all the way around the clock. For example, you might fall asleep at 11 p.m. one night and then can’t get to sleep until 1 a.m. the next night. The delay gets worse until you’re going to sleep at 2 a.m., 4 a.m., and later each night. What Is Non-24-Hour Sleep-Wake Disorder? - WebMD
This is a problem that runs in my family on my mom’s side. It doesn’t appear to be the standard blue-light associated sleep phase shifting insomnia that people commonly attribute it to. It is also exceedingly rare to have it for people with in-tact vision, although the issue does appear somewhat more common among autistic types. I’ve literally lived in the woods for months on end away from any electronics and still my sleep didn’t sync to the sun at all.
On top of that, my sleep duration will occasionally become quite unpredictable at times. Sleeping 4 hours a night for an entire week, and then another week sleep for 18+ hours. My record is 3 days straight. I’ve done some extensive sleep tracking and I do seem to get the total recommended amount of sleep over all on average, but it is very irregular. (It is worth noting this is more rare now that I’ve come to understand how the non-24-hour thing impacts my sleep leading to a considerable reduction in jet-lag symptoms)
While I can usually tell when I’ve been sleeping for too long due to headaches and sore muscles, this unpredictability often means I lose track of time. So this is yet another time-tracking issue that makes it hard to stay on top of things.
A perhaps related issue is I haven’t ever been able to intuitively know what day it is (or how old I am) without looking it up.
4.2 Successes So far
Learning what it was, has helped a bit to avoid feeling guilty. Helping others in my life learn about it as also helped to avoid ruining people’s expectations.
Other than that, most of my “Successes” have been in doing long experiments to try and treat it and not having any results and then finding out gene mutations that probably impact it.
I also noticed that I sync up with lunar rhythms, which has made me better appreciate over looked aspects of life. If I am waking up at 9pm, there’s a good chance there is a full moon. This has helped me with making better decisions on how to tweak my sleep schedule slightly, just enough without triggering jet-lag when I need to make an important event. This makes my schedule more predictable for me, but doesn’t actually address the challenges of syncing up and scheduling with other people.
I like to pretend it’s a super power. I can interact with people in Australia one week, then people in California, the my own time-zone, then Europe, then India, and then Australia again. It’s like my effective timezone shifts 1.5 hours forward each day.
4.3 What help here might look like
I don’t know. Lots of patience?
It occurred to me that I may need multiple Virtual Assistants responsible for specific tasks, all in different time zones that can work together to coordinate tasks. If I end up needing support with making phone calls during times when I am asleep, relaying this to another assistant who can follow up with me later in the day may be needed.
I don’t expect this kind of support will be something addressable in the short term, but figuring an elegant way to help with this would be wonderful.
5. More esoteric problems
I have a smattering of other terms that relate to challenges I face. Most of them are at the intersection of M.S. and Schizophrenia related mood problems, but mostly this is due to how “Negative Symptoms” in Schizophrenia overlap with traits found in Autism. It appears that even for that condition, the ‘Negative Symptoms’ aren’t well researched nor are there good ways to treat them aside from some herbal remedies.
There is a saying in autistic support circles that seems to be relevant here:
“If you’ve met one individual with autism, you’ve met one individual with autism.” — Dr. Stephen Shore
these are just short summaries and a links to where to learn more. I’m happy to expand on them at a later date. These aren’t directly related to the challenges with getting things done that I need help with, and I don’t feel up for giving examples right now. So while these may not be issues that need to be addressed, it is something that may be worth knowing about as they are things I often struggle with.
5.1 Alogia
Some people are naturally quiet and don’t say much. But if you have a serious mental illness, brain injury, or dementia, talking might be hard. This lack of conversation is called alogia, or “poverty of speech.” Alogia can affect your quality of life. Alogia - WebMD
I struggle with speaking sometimes. While I am very verbose on here right now, I am often short on words and it can be hard to communicate verbally at times. While I’m not 100% mute like some non-verbal autistics, it does end up cropping up at times. In particular when I am stressed out.
I don’t tend to run into this when interacting with most people because I will simply not interact with them when it happens. but those who live with me and provide me help will often encounter it because of needs I’ll have while I can’t speak well.
It feels similar to stuttering sometimes. It’s like I can’t get words out. Weirdly I can usually communicate with text when I’m like this, to the point where I won’t even realizing I’m struggling with it until I try to talk to someone verbally.
5.2 Anhedonia
Most people understand what pleasure feels like. They expect certain things in life to make them happy. Maybe you enjoy riding your bike, listening to the sounds of the ocean, or holding someone’s hand. But some people lose the ability to feel joy. The things that once made them content are no longer fun or enjoyable. That’s anhedonia. Anhedonia - WebMD
This has mostly gone away when I fixed my depression. But it does occasionally crop up a bit (along with negative rumination / hyper-fixation on negative thoughts, risks, and anxieties) if I am over-tired and not eaten well + stressed.
5.3 Avolition
It’s normal to drag your feet when you have an annoying chore to do. But if you have “abolition” your habit of putting off a task is on a whole different level.
Avolition is a total lack of motivation that makes it hard to get anything done. You can’t start or finish even simple, everyday tasks. Getting off the couch to wash the dishes or drive to the supermarket can feel like climbing Mount Everest. Avolition - WebMD
This is tied to the Executive function issues and the whole sometimes being unmotivated to do things unless its for other people I mentioned before. It has been slowly going away as I treat my health issues, but sometimes I just can’t will myself to do things at all and just sit here frustraited that I can’t act on my will.
5.4 Affective Flattening
People with ASD interact, behave, and communicate in unusual ways. A flat affect is one of them. Your face often may appear blank. Your voice may not change tone or may sound robot-like. People with ASD also have a hard time reading other people’s voices and body language. Flat Affect - WebMD
Even when I do speak well, sometimes I don’t emote clearly with my voice, with excitement and sadness not being visible in my voice, or generally being monotonic like a robot. I have been training myself over time to not have this issue, but I don’t have a good sense of it.
There is a flip-side to this where sometimes I don’t recognize other people’s emotions and frustration, which has been problematic in the past.
5.5 Asociality
Asociality refers to the lack of motivation to engage in social interaction, or a preference for solitary activities. Asociality may be associated with avolition, but it can, moreover, be a manifestation of limited opportunities for social relations. Asociality - Wikipedia
It doesn’t occur to me to reach out to friends, nor do I enjoy many social activities or large groups. I’m not a “people person”. while I do enjoy sharing ideas and interests with others, I don’t really go out of my way to do normal social rituals, and prefer stuff that is more like Parallel Play.
As such, I also am often rude and inconsiderate of social norms. This doesn’t come up as often when interacting with non-westerners due to inherent cultural differences masking it, but I often come off as awkward and socially aloof. I feel like I didn’t learn my own culture.
Combine this with the lack of noticing emotion I mentioned above, it can sometimes lead to horrible social interactions. This is a stressful issue for me and it often makes me feel bewildered, and in particular guilty and sad when I hurt people’s feelings. At it’s worst I will become increasingly shy and full of self-doubt due to past trauma from problems here.
6. Example of Challenges
It took me almost a year to get the autism diagnosis and it was probably one of the hardest things (in terms of logistics) that I’ve done in my life. On top of the legwork needed to find out where to get a diagnosis, I also had to deal with getting mail delivered to a new location, which took a while to figure out.
There were so many multiple choice questions that my hand cramped up while doing it. I eventually had to have my girlfriend sit with me for hours as she read off the questions because I was struggling so much to even contemplate what they were asking.
(I should write more examples, but I don’t have the patience to dredge thru my twitter notes at the moment)
7. So A Virtual Assistant?
As I said above, a friend suggested trying a virtual assistant. My goal is to get help exploring what they can do for me, and then trying it for a month. I would like someone who can work with me to figure these things out, help follow up with me and adaptively prompt me, and work on ways to deal with the complexities that arise due to these challenges.
Hopefully this document can assist with that.