disclosure

Using the memory you have

Anonymous said to :

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

tl;dr 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

onyourgoat answered your question “Anonymous said to realsocialskills: How do you ask for…”

What to do if they refuse to give you the accomodation? 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.

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?”
 
tl;dr 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.
 
Does anyone else want to weigh in? What’s worked for you when you’ve needed to ask a teacher for accommodations?

I don’t think you should be encouraging ALL college kids ALL the time to email their professors to come out trans before class even starts. In order to keep their job, there’s pretty much no way a professor can’t say they’ll accommodate the request. But that doesn’t mean they won’t forget, “forget”, be hostile, grade harshly, or otherwise attempt to make the student’s life miserable in ways that the student can’t produce enough proof to complain about. Also, who says all profs are discreet?
realsocialskills said:
I agree with you. Emailing professors ahead of time is not a good strategy for every trans student. Some people do not want to be out to their professors, and they have ever right not to be. It’s a strategy for some people in some situations, not something universally applicable to all trans people.
But for some people, it’s a potentially useful strategy. For instance:
  • If you’re a woman and people know that you are a woman
  • But most people don’t know that you are trans and you’d like to keep it that way
  • And your legal name is something like Bruce.
  • At most schools, your teacher will get a list of students by legal names
  • So they’ll inevitably find out that the government thinks your name is Bruce
  • And, if they take roll, it’s likely that they’ll call you that name in front of everyone
  • This strategy is a way to discretely let the professor know that your name isn’t Bruce and you don’t want to be called Bruce in front of everyone

Or even if you’re just tired of hearing “But why do you go by Alex instead of Molly? Molly is a beautiful name!”. If people don’t know your legal name, they’re much, much less likely to try to call you by it or pester you about it.

It’s not a good strategy for everyone, but I can how it could be helpful for some people, and others in the reblog chain have said it worked for them.

youneedacat:

poisonskin:

Template for Preferred Name/Pronouns Letter to Teachers:

thespookyprofessor:

Dear Professor [name],

My name is [Preferred name], and I will be attending your course [blank] on [days] at [time] this [term]. I am transgender and have not yet legally changed my name. On your roster is my legal name, [Legal name]. I would greatly appreciate it if you…

poisonskin said:

Yeah! I’ve used it all of last year and it went over really well. Everyone said they’ll do it and nearly all of them kept up on their word, and the ones who misgendered me still did so out of negligence to remember rather than spite. But they all used the correct name at least ^_^;

The year before that I went up to the professors in person and told them and it went off well I guess but by that point they already had my given name and pronouns in their heads so it was a bit more difficult for them to adjust, but it wasn’t anything /too/ bad. Id say if you have the option to, then use the email approach ahead of time so they have time to adjust.

youneedacat said:

How well does this work when your preferred pronouns aren’t he, she, or they?

realsocialskills said:

I don’t know. Do any of y'all?

Template for Preferred Name/Pronouns Letter to Teachers:

cardromancer:

realsocialskills:

thespookyprofessor:

Dear Professor [name],

My name is [Preferred name], and I will be attending your course [blank] on [days] at [time] this [term]. I am transgender and have not yet legally changed my name. On your roster is my legal name, [Legal name]. I would greatly appreciate it if you refer to me as [Preferred name] and use [pronouns] when referring to me. Thank you for your understanding, and I look forward to starting your course next week.

Sincerely,

~[Preferred name]

realsocialskills said:

Have any of y’all used something like this successfully?

cardromancer said:

My university has a system through counseling services where anyone can have their preferred name told to professors for them. I forgot to utilize this before my semester started (today) so I emailed something like this to all of my professors on Saturday night. Two of them have gotten back to me saying that it’s totally fine. So I would say yes!

poisonskin:

Template for Preferred Name/Pronouns Letter to Teachers:

thespookyprofessor:

Dear Professor [name],

My name is [Preferred name], and I will be attending your course [blank] on [days] at [time] this [term]. I am transgender and have not yet legally changed my name. On your roster is my legal name, [Legal name]. I would greatly appreciate it if you…

poisonskin said:

Yeah! I’ve used it all of last year and it went over really well. Everyone said they’ll do it and nearly all of them kept up on their word, and the ones who misgendered me still did so out of negligence to remember rather than spite. But they all used the correct name at least ^_^;

The year before that I went up to the professors in person and told them and it went off well I guess but by that point they already had my given name and pronouns in their heads so it was a bit more difficult for them to adjust, but it wasn’t anything /too/ bad. Id say if you have the option to, then use the email approach ahead of time so they have time to adjust.

into-the-weeds:

realsocialskills:

I have problems with reacting on time and I learned to cope with this by agreeing to everything. Someone asks if they can open a window, I automatically say “yes” because analyzing the situation in my mind takes a long time (they can but - I’m cold - I’d prefer if they didn’t - figuring out how to say it). People get impatient and repeat the question before I have the answer or assume I’m rude. Any ideas how to deal with being slow?
realsocialskills said:
That’s a tough problem. I don’t think there’s a simple or universal solution.
One thing I’ve found helpful is telling people I’m close to that I have this kind of problem, and asking them to ask questions differently. For instance “I’d like to open the window. Would that be ok, or do you want it to stay closed?” is easier for me to give a real answer to than “Can I open the window?”
Another thing is that sometimes I can buy time by repeating part of the question. This can also prompt them to clarify. For instance:
  • Them: Can I open a window?
  • Me: You want to open a window?
  • Them: Yes, I’m hot.
  • Me: I’m cold. Could you take off your jacket instead?

That way it breaks down into smaller steps, like this:

  1. I hear their question
  2. I process what the question is and verify that I’m right
  3. I figure out what I think and maybe say so

It can also sometime work even if I can’t say very many words right then. For instance:

  • Them: Can I open a window?
  • Me: A window?
  • Them: I’m hot.
  • Me: Too cold.
  • Them: You’ll be too cold?
  • Me: Other room?
  • Them: Ok, I can try working in the other room with one of those windows open.

This doesn’t always work, but it does sometimes.

What works for y’all in this situation?

into-the-weeds said:

Sometimes these tricks work more for me, but sometimes I need a lot more time (like, I don’t think I could accurately answer the window question in a practical length of time.) Communicating in writing or another text-based form can help. But ultimately the only viable work-around for this I’ve found is to form relationships where the other person understands that this is a thing, and is okay with me saying “yes” and then half an hour later saying “wait, I should have said [other thing,] can we [something else]?”

Which obviously does not work for everyone!

So, lots of sympathy, anon, and I’m going to be watching the notes on this one for ideas. This has had a pretty big impact on my life.

On google risks

totallyacomputer said: Can you elaborate on this part? (of this post) “If Google knows that you are autistic”

realsocialskills replied:

Employers and schools often google the names of applicants.

If googling your name turns up a reference to you being autistic on the first couple of pages, then some schools and employers will find out that you are autistic.

And whatever prejudices they have about autism will affect your chances of being selected.

One example is: If you talk about being autistic in the school paper, that will likely make that information show up on Google where prospective employers can see it.

That doesn’t mean being open about autism is necessarily a mistake. There are major advantages to being open about it. The point is that it’s worth paying attention to how open you’re being (which might be more open than you think), and take the risk into account.

Should I tell my roommates I’m autistic?

anonymous 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:

I don’t know a good answer to this from my own experiences, since I didn’t know I was autistic until after college. (I wish I had known sooner.)

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.

Do any of y'all have advice about whether to tell college roommates you’re autistic?

An opinion on autism disclosure

chavisory:

Should I tell my roommates I’m autistic?

realsocialskills:

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…

chavisory said:

I would hold off with disclosure until you actually know your roommates, know if you like them, and whether you trust them.  Those things may not be the case.  Or it may just be that they’re fine people but you’re not close enough friends that you feel like they need to know.  Sometimes roommates wind up really close friends, and sometimes they don’t and that’s fine.

I had roommates in college that I would have told if I’d known, and I had ones that I definitely would not have, but there was no way to tell which was which until I’d spent some time around them.

But I wouldn’t do any disclosing until you’ve met your roommates and at least have a sense of who they are.  The stigma and the popular misinformation surrounding autism is just incredible, and I think, if they know you’re autistic before they know you, you risk them coming into the roommate situation with a lot of pre-conceived, stereotype-based notions about you forefront in their minds, and you don’t need that.