Tag: actuallyautistic

Comfort in a new flat

Real Social Skills

A reader asked:

This may be a strange question and isn’t really related to social skills, so I apologize if it’s a wrong place to ask. I’m autistic and recently I moved flats. I lived in the old one for 15 years. No matter how much I try, I don’t feel at home in my new flat. I can’t relax, it doesn’t feel like my safe place. I feel alien and it makes me stressed and tired. Do you (or your followers) have any idea what I can try to do to get used to it? It’s a new place, new furniture, and nothing feels right.

realsocialskills said:

It might be a matter of time. If you wait long enough, things might start seeming more familiar.

But in the mean time:

I wonder if it would help to do some really familiar things?

  • Like, do you have a go-to TV show that you’ve watched over and over? Or a book you’ve read a zillion times?
  • Reading/watching that a whole bunch of times in your new place might help it to feel comfortable and familiar.
  •  Are there foods that smell or taste like comfort to you?
  • Like, do you like the smell of cookies baking? Did you bake in your old place? If so, baking here might help too.
  •  Or ordering a kind of food you ordered a lot.
  • Are there stim toys or blocks or anything that feel comforting and familiar to you? If so, using them might help.  (I never really feel at home in a new place until I’ve made a pattern with my pattern blocks.)
  •  Do you have the same blankets you used to have? If not, it might help to get some that are similar.

Also, it’s worth checking around your place to see whether something is actually bothering you. It might feel like unfamiliarity when it’s actually that you’re physically uncomfortable, for instance:

  • Are the lightbulbs in your new place bothering you? Some people find florescent bulbs intolerable. If your old place had incandescent bulbs and your new place has CFLs, changing the lights might help.
  • How is the temperature? If the air is uncomfortable, you won’t feel as good in a place. Turning the temperature up or down, or getting a fan, might help.
  • Are there noises that bother you? Or is it too quiet? If so, wearing headphones or turning on background noise that you like (music, white noise, TV, etc) might make you more comfortable

On being triggered by infodumping

Real Social Skills
A reader asked:
I have a really odd question, and this probably wouldn’t of help to anyone else (I am the only person I’ve EVER heard of this happening to) but do you have any advice for NT people about how to deal with autistic infodumps? I’m really really sorry if this is the wrong place to ask, but you’re the only blog I’ve found that even remotely deals with this sort of thing. Trouble is, they trigger me sometimes.
I have an emotionally abusive father who I’m about 90% sure has aspergers and starting when I was really little, he would take me places in the car and just drive in circles for hours and talk at me. Sometimes about something he thought I’d did wrong, sometimes just about his interests. He’d never let me go home or let me join in the conversation; and I could never get him to quit. I literally could never get away and ended up feeling really trapped. Trouble is, I now have an autistic fiance who enjoys talking to me about his interests.
I know he’s doing it innocently and I don’t want to take away something he enjoys, but at times he can go on really long and I start panicking- and, I’m pretty sure; being triggered. How can I politely exit from a conversation like that without hurting his feelings? It isn’t my fiance’s fault, and I’m probably making too big a deal out of this, but IDK I thought you might have some useful suggestions.
realsocialskills said:
First of all, your needs matter. You are not making too big a deal about this. (And I actually think this is probably more common than you realize).
He might not be doing anything inherently wrong, but the situation is not ok for you, and you’re going to have to figure out together how to make it better.  I don’t think there’s a pre-existing way to politely exit from a conversation with him; I think that this is a problem that you and your partner will have to work out a solution to together.
You’re probably going to have to hurt his feelings, at least in the short term. Not because he is doing anything wrong, but because this is a touchy subject for autistic people. Most of us have been treated horribly for having focused interests and infodumping about them. Having other people express boundaries about infodumping can hurt a lot; it can even be triggering.
But people are still allowed to have boundaries about how much they are willing to listen to us go on about our interests, and we have to be able to negotiate that in close relationships. Even when it hurts to think about. Even though it’s triggering sometimes.
Telling your partner that his infodumping hurts you sometimes will probably be a very difficult conversation for both of you. It will probably be complicated figuring out how to negotiate boundaries that work for both of you.
But it’s an important conversation to have, and it probably won’t be the last issue in which you need to have a difficult conversation about something that is loaded for both of you. That’s part of the work of an intimate relationship, particularly when both partners have triggers.
Some things that I think might help:
Make it clear that you don’t see his interests as the problem:
  • A lot of autistic people have been subjected to a lot of pressure to give up our interests, or stop being so focused on them
  • If you’re asking to negotiate boundaries about discussing the interests, it’s really easy for that to feel like rejection or like you are disgusted by him liking things
  • So, if you don’t see it that way, *say so*
  • (If you do see his interests as the problem, that’s a different problem and I’m not sure what to suggest)
Think through what your needs are:
  • What do you need once you get triggered? A subject change? Being by yourself for awhile? Reassurance? Being explicitly reminded that your partner doesn’t see you as an infodump-recieving object? Food? Something else?
  • What would help you to avoid getting triggered? Being able to change the subject easily? Avoiding certain topics when you’re in the car? Something else?
Agree on a way to signal that you need to change the subject:
  • If you’re getting triggered, particularly if you have a compliance trigger, it’s important to figure out a way to communicate that you’re not ok
  • It might be good to have a rule about him checking in periodically about how you’re doing in a long conversation about something he’s really into
  • Or to try to identify explicitly what the signs are that you are being triggered (eg: when you’re not ok, do you go quiet? Do you start agreeing to everything? Does your body language change? Something else), and ask him to pay attention to whether you’re doing those things and check in with you if he sees them
  • It also might be good to agree on a specific thing you will say or a specific gesture you need to make if you need to change the subject.
Listen to what he has to say about this and what his needs are:
  • He’s going to have thoughts about this
  • Some of them might hurt to hear, or might be scary or triggering given your history
  • And this isn’t going to have a simple solution where you mentioning the problem makes it go away
  • It’s important to listen to his perspective and think through together what’s going to work for both of you

I think this is probably something you can work out if you both act in good faith. (Not guaranteed; some people aren’t compatible in this area through no fault of their own. But from what you’ve said it sounds possible to work out).

On feeling like you have no right to call yourself disabled

Real Social Skills
A reader asked:
I have depression and OCD, and I keep feeling like I don’t have the right to consider myself disabled or seek accommodation because they’re mental illnesses. How do I shake that feeling?
realsocialskills said:
I think that it might help to realize that self-doubt is normal for people with disabilities. I think most of us feel that way, regardless of what kind of disability we have.
The reason this is important to understand is that often, when we feel doubt, it can feel like evidence that there’s a *reason* to feel that kind of doubt. But it it isn’t. Most people with disabilities feel that way.
I don’t think this actually has much to do with your particular conditions being mental illnesses.
Categories don’t matter, except for some practical reasons like access to services and making it easier to find other people who get it. What matters is what your needs are. If you need accommodations in order to function well, it’s important to seek them out. Spending a lot of mental energy agonizing over whether or not you deserve them is not going to do you or anyone any good.
I think part of the reason a lot of us feel this way is that we never really see descriptions of disabled folks who resemble us, but we see a LOT of descriptions of disability that don’t match us at all.
Think about what the media’s like. It’s full of people who bravely overcame their disabilities. It’s also full of stories like “the doctors said my baby would never walk, but we didn’t listen to those doctors and now she’s an honor student!”. It’s also full of smutty stories about people who didn’t overcome their impairments suffering and dying and being mysterious unpeople. Or as having super powers, or as having a disability kind of like an accessory, without it affecting their life in any significant way. None of these descriptions match what people with disabilities are actually like, but they are *the only ones we ever see*.
And even beyond what the media says, most people without disabilities have no idea how wrong these descriptions are. It’s jarring.
When your actual experience with disability bears little resemblance to what everyone around you thinks disability is like, it’s easy to feel like a fraud.
One thing that helps with that is seeking out other people with disabilities similar to yours who think of disability in a matter-of-fact way, and work on trying to live well with your kind of disability. When you talk to people who get it, it makes it a lot easier to realize that what you are experiencing is real.
So, for you, it would probably be really helpful to find more people with depression and OCD to talk to, and more authors with depression and OCD to read.
Also, be careful about exposing yourself to people who yell a lot about fake disabled people or appropriation. Those people are wrong, but what they say hits insecure disabled folks really hard. If you’re not confident about yourself, you can get hurt really badly by that ideology.

Thoughts on noticing disability experiences

Real Social Skills
A reader asked:
As an able bodied person, I am never certain when/if it’s appropriate to bring it up. I don’t want to belittle disabled persons, but I also don’t want to be protected from their reality. How do you bring this up respectfully?
realsocialskills said:
The short version is – bring it up when it matters, respond respectfully when they bring it up, and don’t be creepy about it.
Some details:
On responding respectfully:
  • If someone mentions disability, acknowledge what they say, in the same way you acknowledge other things people say. Do not ignore them or wait for them to change the subject.
  • (I’m mentioning this because, very often, when I mention being disabled, people completely ignore me until I change the subject. It hurts. Don’t do that).
  • I think sometimes people ignore us when we mention disability because they’re anxious about saying the wrong thing.
  • It helps to keep in mind that someone mentioning disability probably isn’t actually asking you to understand everything and fix their lives by saying something brilliant. They’re probably just talking about their life, just like everyone else does
  • Even if you don’t know what to say, say *something*, or respond *somehow*
  • Eg, if someone mentions that they’re in pain that day, saying “That sucks” is a lot better than ignoring it.
  • Just, generally speaking, don’t treat disability as a scary taboo subject. Treat it as a normal thing to talk about.

A thought on language:

  • Generally speaking, the best language to use is the language someone uses for themself
  • Eg: If someone calls themself Deaf, don’t call them hearing-impaired
  • People have widely differing preferences on person-first language. Some people prefer to be called people with disabilities. Some people prefer to be called disabled. Some people don’t care much one way or the other. It’s best, if you can, to mirror the language someone uses for themself.
  • It’s also worth being aware that almost everyone hates being called “differently abled” and that most adults do not like to be called people with special needs.
  • That said, the most important thing is to speak to someone respectfully and to acknowledge them. Getting the language wrong is less bad than refusing to acknowledge or mention disability

Help people in a matter-of-fact way when they ask for help:

  • People with disabilities often need help at various times
  • Getting help can be really complicated
  • A lot of people like to feel like they are ~helping~, and that it’s an emotionally laden act of charity.
  • But actual help is just – doing stuff people ask you to help them with. It shouldn’t be a big deal..
    • Eg: Jane and Sue are in a meeting with other people in their office.
    • Someone in the meeting passes out an agenda
    • Jane’s hands aren’t working well that day, so she asks Sue to pick up her copy for her
    • Sue should do so without comment (unless she needs to ask a question in order to clarify what Jane wants her to do)
    • This would not be a good time for Sue to ask Jane questions about her hands
  • Another example:
    • Sam and James are coworkers. Sam is blind and James is sighted.
    • James and Sam work closely together and often go to offsite trainings or meetings
    • In a meeting in an unfamiliar place, Sam asks James to show him where the food is and tell him what is available.
    • James does so, and it’s not a big deal, because people who work together help each other with stuff.

More thoughts on help:

  • If you have reasons for not wanting to do a particular thing, that’s ok
  • (Eg: if someone asks you to move a heavy box out of the way of the ramp, it’s ok to say “Actually that’s too heavy for me too – how about if I find someone else to move it?”)
  • If you think that something other than what the person is asking for might work better, it’s ok to suggest it, but not ok to override them
  • (Eg: “There’s an elevator across the street. Would that work?”, NOT “Just take the elevator!”, or “I think they may have accidentally sent us salad with croutons. Is that dangerous to you, or will you be able to pick them out?” NOT “Can’t you just pick out the croutons?”)
  • If someone tells you that they do not want help, back off. (Eg: If someone with a mobility impairment tells you not to hold the door, don’t hold it. They have a reason.)
Sometimes it’s important to bring up disability. When you see a potential access issue, say something to the person it affects, and ask them what to do:
  • Like “We all want to get together for dinner. Jane’s Loud Bar and Grill has awesome steaks, but it’s really loud. Does that work for you, or should we pick a different place?” or:
  • “We’re chartering a bus for the company picnic. What should we know about your access needs? Should we get a bus with a lift? Or is there another way that would work better?” or:
  • “There’s going to be a booklet for the conference. Do you need it in an electronic format ahead of time?” or:
  • “We’d like to show a movie to the class. What do I need to know about avoiding your seizure triggers?”
  • Don’t worry about making someone feel different. We know we’re disabled, and we know we are different.
  • What we can’t count on is having our access needs met so that we can actually do what we need to do.
  • Being willing to talk about access *and follow up on it* makes a big difference
  • Having to initiate access conversations all the time is exhausting (particularly since people tend to react very poorly to being asked to accommodate our needs)

Similarly, if you notice discrimination, let them know that you see it too, and, if appropriate, respond to it:

  • Eg: If you see someone treat a disabled friend or coworker in a degrading ableist way, it’s ok to say to them “Wow. That was horrible how he treated you. I’m sorry that happened.”
  • It can be really, really helpful to know that other people are seeing it too
  • It’s much less helpful if you’re looking for brownie points for noticing though; that can become another microaggression

Sometimes questions are ok, but some questions are really creepy:

  • We don’t like being everyone’s education objects or self-narrating zoo exhibits
  • But a lot of us are happy to answer certain kinds of questions
  • Eg: I’m generally happy to talk about my vision, my movement issues, cognitive stuff, and stimming, so long as the questions are asked respectfully and it’s clear that the person will back off if I don’t want to answer.
  • Do not ask questions that are aimed at investigating/debunking or the like. For instance “Why are you using a wheelchair? I saw you walk! Do you really need it?” is an obnoxious question. So is “Why can’t you look at me when I talk to you? My brother’s son got therapy and now he makes eye contact all the time.” or “Seriously? You’re allergic to *that*? No one had allergies like that when I was a kid. Why all these allergies all of a sudden?” or asking someone to answer a bunch of questions with their communication device in an attempt to trip them up.
  • Do not ask creepy questions. For instance: asking someone how they have sex, asking someone how they go to the bathroom, asking someone detailed questions about their body (particularly if you’re asking about body parts covered by clothing)
  • Back off if they don’t want to answer the question
  • They do not owe you an explanation of anything disability-related, or of why they’d rather not talk about things
  • Do not ask questions in order to assuge your own fears (eg: don’t ask someone how they became disabled if what you’re really asking is “please reassure me that this can’t happen to me”.)
  • Do not ask someone to justify choices they make about mobility, treatment, therapy, diet, health, how they move or anything else disability-related.
  • Do not ask someone to justify their desire to have children. Particularly, if you know someone is trying to get pregnant, do NOT ask them whether what they have is genetic.
  • (Yes, I know about gluten-free diets. No, I will not be trying one. No, I will not be explaining why.)

It’s ok to notice equipment.

  • People who use mobility equipment know that they use mobility equipment
  • Really
  • This is not news to them
  • Admitting that you also notice will not be a sudden revelation to them that they are different
  • It’s not nice to ask nosy questions. But if someone, say, puts a bumper sticker on their battery box, it’s ok to notice and comment on said bumper sticker
  • If someone gets an awesome new cane, it’s ok to say you like the flower print on it
  • Just, generally speaking, you do not have to pretend mobility equipment is invisible

Also, acknowledge that being unaware of disability issues is a problem, and work on solving it. Don’t make your awareness the responsibility of your disabled friends or coworkers; this is your job, not theirs. If they choose to help you understand, they’re doing you a favor; appreciate it and don’t lean on them too heavily. Read things. Ask people who have chosen to make themselves available for education. Realize that being unaware of disability issues is a major gap in your understanding of the world, and seek to address it.

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.

All autistic people are disabled

Real Social Skills

All autistic people are disabled.

No matter how well someone passes. No matter what someone has accomplished. No matter how well they speak. Even if they’re married with children.

All autistic people are disabled. And, if you interact with them enough, it will present a practical problem at some point.

And, if you are autistic yourself, you are going to face practical problems associated with it.

And that’s ok. Disability is not a big deal, if you accept and accommodate it.

Going around pretending that it is not so just makes everything harder.

An inadvertently creepy thing a lot of autistic people do

Real Social Skills

Sometimes autistic people want to hang out with a group of people and can’t tell if it’s ok to talk to them or not.

And then, they try to watch for a while to try and pick up on signs that interaction would be welcome.

This is generally a bad idea. The problem is that people find it uncomfortable to be watched by people who aren’t explaining their presence. If they’re not ok with you joining them, they’re probably not ok with you watching them, either.

It’s better to just go up to people and ask if it’s ok to join them. Watching first for more than a couple of seconds actually makes things worse.

You can’t appropriate your own mind

Real Social Skills
A reader asked:
I briefly self diagnosed as autistic, but I met with my psychiatrist yesterday and she told me since I noticed social deficits and tried to compensate, and managed just like a neurotypical person, it was just social anxiety bc if I were autistic, I wouldn’t have noticed or been able to learn so well. she didn’t mention the cognitive things I brought up, so I’m guessing they were normal /insignificant. How do apologize on my tumblr for fucking this up and appropriating?
realsocialskills said:
You don’t owe anyone an apology. Anyone in our community who has suggested that sincere but mistaken self-diagnosis is appropriation owes *you* an apology.
Thinking you’re autistic and being wrong is not appropriation. We all make guesses about ourselves; some turn out to be right and some turn out to be wrong. Thinking you’re autistic and being wrong is not appropriative and it is not fucking up.
That said, from what you described, it’s not even clear to me that you are wrong about being autistic. I’m not a diagnostician and I don’t know you, so I can’t say one way or another. But it sounds to me that your psychiatrist is basing their response to you on stereotypes rather than professional knowledge of autism.
Not all psychiatrists are competent to evaluate autism, particularly in adults. Psychiatrists are primarily trained in mental health; autism is a developmental disability. Mental health training does not imply expertise in developmental disability. It’s entirely possible that your psychiatrist is disregarding your cognitive issues not because they are normal, but because your cognitive issues are outside their area of professional competence.
Most autistic people notice social deficits and try to compensate. Most autistic people generate effecting coping strategies for a lot of things, including social situations. All autistic people can do some things that neurotypical people can do. Being able to notice and compensate for problems does not mean you’re neurotypical.
It’s fairly common for people who think they’re autistic to be told by mental health professionals that if they’re self-aware enough to ask, they can’t possibly be autistic. Or that if they can do anything at all, it must mean they’re not autistic. Those are perceptions based on stereotypes, not accurate understandings of autism. People with advanced mental health training are just as prone to a stereotypical view of developmental disability as anyone else.
If your doctor is responding to your concerns in a way that might be based on stereotypes and misinformation, it’s probably a good idea to find someone else (perhaps a neuropsychologist) who has a better understanding of autism and is familiar with adult diagnosis.
You may or may not be autistic, but it sounds like you could benefit from investigating further. And ultimately, the opinion that matters most is your own. You know your own mind better than anyone else does.
And whatever conclusion you or any professional ends up reaching, you have done nothing wrong or appropriative. It’s ok, and important, to try to understand yourself and figure out what you need to make your life work.