Tag: disclosure

Using the memory you have

Real Social Skills

A reader asked:

I have memory issues. Things like names, dates or times, directions, and other important details often escape me. Lately, I’ve been using “external memory” in the form of a notebook or my phone.

However, people tend to get impatient or bored at best when you’re constantly consulting a notebook in order to tell them what you need.

At worst, they talk over me, try to tell me what they think I want, or walk away.

How do I get people to understand?

Or should I just work on fixing my memory instead?

realsocialskills said:

A few things:

Don’t wait for better memory:

  • Improving memory is possible for some people; not everyone
  • Whether or not it’s possible for you, you need to communicate now
  • Communication shouldn’t wait for cognitive changes
  • It’s important to make strategies that work with the cognitive abilities you have now

Meanwhile, you might be able to make some of your external memory faster. Here are a few possible ways of doing that:

Write things on your hand or a wrist band:

  • Looking at your hand only takes a second
  • This might work well for remembering what food you want to order, or what you want to buy
  • Or in general terms what you wanted to talk about
  • There are also disposable paper wristbands you can buy to put notes on
  • That works similarly, without having to write stuff on your hand

Put some information on your phone’s lock screen, eg:

  • Write something in your notes app
  • Take a screenshot
  • Make that screenshot your lock screen wallpaper
  • This means the information is available immediately once you get out your phone

Cheat sheets:

  • If there are things you consistently need to know but can’t remember, making pages with that information and putting them in particular places might help
  • Eg, for remembering what a store has
  • Or remembering what questions you’re likely to be asked
  • Or lists of people who are likely to be in particular places

Optimizing your notebook:

  • Eg: If there is information you need frequently, it might be worth putting it on dedicated pages with color-coded tabs
  • It also might be worth using something like a three-ring binder so that you can put information you need soonest at the front
  • Or even *on* the front, if you get a three-ring binder that has a space to put in a cover sheet on the front

Communication boards or apps:

  • Using communication boards or a picture-based AAC app might help too
  • Communication aids aren’t just for generating speech, they can also be for cognitive prompting reminding you what it’s possible to say
  • Making pages for particular situations might help you to communicate faster
  • You’d still have to open the page, but it might result in less hunting around for information once you get there
  • Having a page with a few options might make it easier to remember and process things
  • Associating images with things you’re trying to remember might make them easier to remember
  • If you keep the symbols in a consistent place and touch them some while you communicate, muscle memory might also help you to remember things
  • (Even practicing with boards in private without using an app to communicate directly might make it possible to use muscle memory to prompt yourself)
  • Proloquo2Go might work well for this
  • (Or maybe even something like Custom Boards, although that uses more childish symbols and that could be a problem)

It also might help to be more open about your memory difficulties:

  • Sometimes being open about how bad your memory is can help
  • If you don’t tell people what you’re doing, they might not be able to tell the difference between using external memory and ignoring them
  • (Especially if you’re looking at a phone; they might think you are facebooking or something)
  • They also might be trying to help, and might not realize that it’s being anti-helpful
  • If you tell people what’s going on and what would help you, *some* people will do the right thing
  • (Not all. But enough that it’s often worth it)
  • That also can allow you to ask people things that you don’t remember

Eg:

  • “I’m sorry, my memory is bad — could you remind me who you are?”
  • “Give me a second — I need to check my notebook.”
  • “I don’t remember when that’s happening — I need to check my calendar on my phone.”
  • “I actually get really confused when people try to tell me what they think I want — I’ll be able to find it faster if I check my phone”.

Also, if you’re approaching people and they’re walking away, it might help to change the order in which you do things to make it go faster from their perspective, eg:

  • Get out your notebook
  • Turn it to the right page
  • Put your finger on the piece of information you need to remember
  • Then go up to them and ask for help

Short version: If you have memory issues and rely on external memory aids, there may be things you can do to use them more quickly.

When teachers refuse to accommodate your disability

Real Social Skills

A reader asked:

What to do if teachers refuse to give you the accommodation? I couldn’t ever finish my work because they would refuse to write down things ect

realsocialskills said:

That’s a hard problem.

In my experience, you usually can’t make them write down assignments if they’re not doing it willingly (even with a letter). Sometimes you can, if you’re sufficiently insistent.

I’ve had surprisingly good results with reminding a teacher politely and discretely the first time, reminding them in front of other students the second time, and insisting more bluntly that it’s not ok for them to neglect to do this the third time. I’ve also had this blow up in my face. Your milage may vary. It’s not something I’d wholeheartedly recommend, but it does work sometimes.

Also, if the problem is that they don’t remember (or can’t be bothered to remember), sometimes reminding them by email works. Eg, by sending an email after every class asking them what the assignment is.

Another thing that can help is getting support from other students rather than the teacher. For instance, getting the assignment from a peer who is able to write it down. Or getting other students to also ask in the moment for it to be written down so it doesn’t have to come just from you all the time. (That helps me both in terms of getting what I need, and in not feeling like I’m alone and unreasonably demanding.)

If you are in college, another thing you can do is change classes. If a teacher is not treating you well and is making it impossible to do the work, treating that as a red flag and changing to a different class can make things a lot better. In college, there is often a lot more flexibility to work with people who are willing to accommodate you, and it’s important to learn how to take advantage of that flexibility.

Negotiating accommodations without a diagnosis

Real Social Skills
A reader asked:
How do you ask for accomendations when you don’t have a go-to reason to explain why you need it? I don’t know if I’m disabled (I find info about disablities completely inaccessible to me, though i’ve wondered from seeing people talk about things i’ve also experienced) but I do know I can’t learn in certain ways, or process information that’s presented in certain ways, and that I’m prone to sensory overload. people act like i’m being overdemanding when I bring it up. am i? if not, what do I do?
realsocialskills said:
I’ve been there, a lot. I was only diagnosed after college, even though I’ve always been disabled. I was just as impaired before diagnosis; being without a label didn’t magically create abilities. So I’ve spent a lot of time negotiating accommodations informally.
I’ve found that what works best is to give a very simple version of the problem, and to ask for something specific. This can make accommodating you seem like a straightforward thing to do.
For instance: “This is hard for me to read. Is there an electronic copy?” works much better than “I’m autistic and I have visual tracking issues and executive dysfunction and I need a different format.“
Or: “Noisy College Hall is big and crowded. I never understand anything there. Can we have class in the usual room instead of moving?”
Or: “I don’t understand the assignment when it’s said verbally. Can you email me the details?”
Short version: You don’t have to go into great diagnostic detail when you’re negotiating with a teacher directly. You can start by describing the problem and a solution you think would work. This doesn’t always work, but it’s the most effective approach I know of for this situation.

Setting the stage for disclosure of awkward or stigmatized things

Real Social Skills
A reader asked:
I’m on disability for mental illness and I recently moved to a new place. (I moved because the area I lived was rather toxic for me and I have a best friend here who is great support.) This means I’m meeting a lot of new people, and a lot of them open conversations by asking about work or why I moved here. I can only get by with “non-answers” for so long, and sometimes there are people who I would like to tell more to but not yet. I don’t know how to handle these questions. Suggestions/ideas?
realsocialskills said:
I don’t know much about the specific situation you’re in, but I do know some things about setting the stage for disclosure of awkward or stigmatized things:
First of all, it’s easier to disclose later if you don’t lie now. (There are reasons that lying might still be a good idea sometimes, but it has the downside of making later disclosure more difficult.) If you’ve already told a lie, then if you want to tell the truth you also have to effectively disclose that you lied about it, which can be awkward. (This isn’t necessarily always a huge deal. Some people will absolutely understand why you lied. But it does make things a bit harder).
Second, there are intermediate areas between telling the whole truth and giving a complete non-answer. You might be better off erring on the side of giving partial answers. Partial answers send the message that, yeah, there’s probably a story there, and now isn’t the time, but maybe you’ll get there eventually.
Partial answers can be things like:
  • “I was dealing with some medical issues and moved to be closer to supportive friends.” (I don’t know if that line works well for mental health – I feel like it should, but I don’t actually *know*, and I hope that people who’ve dealt with disclosing that degree of psych disability will weigh in)
  • “Things were really hard where I was living before.”
  • “I’m out of work right now.”/“I’m not able to work right now.”
  • “I’m between things.”
  • “It’s a long story.”

Partial answers work best when you combine them with an immediate subject change. The most effective way to change the subject is by asking them an open-ended question about something they are likely to want to talk about:

  • Them: Why did you move here?
  • You: Things were really hard where I was before and I wanted a change.
  • You: Do you know any good bookstores here? I’m always excited to learn where the new ones are in a new place.

Some kinds of questions that work well for changing the subject:

Asking them about themself:

  • Most people like to talk about themselves
  • If you get people to talk about themselves and listen to them, they will usually enjoy it and not mind that you haven’t told them much about yourself yet
  • It also can be a way for you to find out more about them and get a better sense of what it might be safe or comfortable to tell them
  • This works best if you ask them something specific but open-ended, eg questions like “How long have you lived here?” “What do you do?” work better than “Can you tell me about yourself?”
  • If they ask you a question, it’s often particularly effective to ask them the same question after you give a partial answer. People generally ask questions in getting-to-know-you contexts that they are eager to answer themselves.

Asking them about the place you’ve just moved to:

  • Most people like to feel competent and like they have expert knowledge
  • So they generally like to explain things they know well to people who are eager to find out about them
  • Asking about the area and listening to their answers is likely to make them feel happy and competent
  • Which can lead to them feeling positive about the conversation and happy that they met you
  • And, again, it’s a way to find out more about them and how they think

Pay attention to what people tell you:

  • If you notice other people who seem nice and also give non-or-partial answers to common smalltalk questions, they might be good people to get to know a bit better
  • (Not that it’s guaranteed; sometimes people are evasive because they’re hiding something that is actually bad. And even if they’re hiding something that isn’t bad, that doesn’t necessarily mean you and they will be good friends. But it *is* a sign that they might get it.)
  • If people say awful things about psychiatric disability, exercise caution about trusting them. It’s likely that they mean it, even if they are otherwise nice.
  • Listen for people who share your interests, even a little, and talk to them. Connecting around interests bridges a lot of gaps.

Ask your friend for help:

  • If your best friend has been in the area for a while, they might have a sense of who they trust to treat you well if you disclose things to them
  • Especially if they can introduce you to nice people
  • It’s a lot less stressful to deal with this situation if you can identify some people who are likely to be nice to you once you’re ready to tell them things

All of that said: you may actually be better off just being open about things in a matter-of-fact way. That has a lot of downsides, but it also has a considerable upside:

  • If you are open about something stigmatized, then you find out fairly quickly who is going to be a jerk about it and who isn’t
  • This means that you get a lot more people being directly awful to you, but it can be a more bearable kind of awful
  • Because if people you don’t particularly care about say horrible things to you, it can only penetrate so far.
  • It hurts a lot more if it’s someone you’ve really been trying to build a friendship with for a long time.
  • It is in many ways far less stressful knowing how people are going to react than worrying about how people are going to react
  • And it also makes it *far* easier to identify people who get it and won’t be jerks
  • In particular, if you are open about things, then people who *aren’t* open about things will be able to identify you as a trustworthy person, which means you’ll be able to find each other.
  • Also, people often take cues from how you talk about a stigmatized aspect of yourself
  • If you can talk about something stigmatized in a matter-of-fact way (possibly combined with an immediate subject change), people tend to react better than if you talk about in in a more cringing way
  • This approach has a major downside too, but it’s worth considering

Short version: There are a lot of approaches to disclosing stigmatized things about yourself. You might be better off being really open about it. You might be better off disclosing more cautiously. It helps to give partial answers to questions people ask, and to change the subject. It also helps to ask people questions that they’ll want to answer, and to listen carefully to what they say.

Should I tell my roommates I’m autistic?

Real Social Skills
A reader asked:
I’m an autistic student who’s starting college next fall. I’m wondering if I should tell my roommate(s?) about it first, or if this will affect the way they think of me. I like to think that I can “fit” in normally with everyone, but I might have some quirks that will annoy them. I’m worried I won’t be able to make friends, I’m not sure what to do.
realsocialskills said:
This is a really personal choice, and there’s no one right answer here. Some thoughts:
There’s a really good book and website about dealing with college as an autistic person called Navigating College. It talks in practical terms about a lot of different issues, including the question of disclosure. I would highly recommend reading it.
That said, here’s what I think I know about disclosure in general:
  • Autism is highly stigmatized, and most people will see you as less of a person if they know you’re autistic.
  • Sometimes it’s safer not to tell people, or to say something like “I have a neurological disorder that makes it hard for me to (whatever the relevant thing is).
  • If Google knows that you are autistic, it can make it harder to get into school, get an internship, or get a job
  • Keeping autism completely secret creates a major barrier to friendship; hiding a fundamental aspect of who you are makes everything a lot harder
  • If people don’t know you’re autistic, then you always have to wonder how they’d treat you if they ever found out.
  • If people know you’re autistic, then you face a lot more mistreatment, but you also find out who you can trust. Sometimes, that’s worth it.
  • There isn’t a right answer here; all of the options kind of suck, and which approach is best for you is a highly personal decision
And a few things I think I know about disclosing to roommates:
  • In college, roommates are often not friends
  • They’re just people you have to minimally get along with enough to share space peacefully
  • In some ways it’s better if you’re *not* close to your roommate; a fairly superficial relationship can be more conductive to living together
  • If you aren’t close to your roommate, there’s probably no reason they *need* to know you’re autistic.
  • It’s also possible that they’ll treat you better if you don’t tell them, since most people think that autism means you’re unable to understand or care about other people.
  • So, unless you’re generally open about being autistic (which can be a good strategy), it might be better to err on the side of not telling your roommate.