Autistic Hedgehog

That’s sort of a tricky question, because sometimes stims intersect with other things, and there are a lot of things that count as stims.

Simplified, a stim is a repetitive motion or action (it might be making a sound rather than moving) and it can be an expression of a number of emotions: fear, happiness, contentment, anxiety. It can also be a way to calm fear or anxiety, or to ground one’s happiness.  I don’t think a long period of repetition is necessary for something to be a stim (I sometimes make a small string of sounds along the lines of “nif nif nif” which I tend to do in stim-like situations) but over all it’s something that repeats. 

Using my own as an example:

• I rock when agitated, hurt (as in injured) or in other ways upset, though sometimes this only makes me more agitated.
• I sway (which is more rhythmic than rocking) when happy, content, tired or some mixture thereof. 
• I flap, but very little. Usually I flap my entire arms, and the motion is connected to a very particular anxiety, like when I’m asking for permission for something. 
• I rub on smooth textures (like satin ribbon) for comfort in situations where I’m anxious or want to feel extra content.
• I make small chains of sounds, like the “nif nif nif” I mentioned earlier, often as an expression of feeling good or feeling silly.

You can see there’s sort of a pattern of how those connect. There’s another thing I do that I don’t consider a stim, though. I bite the skin around my fingernails. While I do it more in times of increased anxiety, I always do it regardless, I have a tendency to hurt myself doing it, and it doesn’t really make me feel better in any way. I just can’t help it. That’s where I draw the line.

Some things are unquestionably not stims, but for the most part, you need to find your own personal guidelines for what a stim is to you. If something falls outside those guidelines, then odds are good you’re not doing it for stimming purposes. 

As the person who submitted the meme put it:

Why is it that everything and anything an autistic person shows interest in, or proficiency for is a “Special Interest”? I know the difference between my perservations and my hobbies and general interests, thankyouverymuch.

Basically, the problem is that autistics aren’t really allowed to have hobbies. If we like something, it all tends to get classified as a “special interest” and while that may seem like the same thing, it’s not when it’s applied to us. 

For us, a “special interest” is a marker of our autism, which is why the term “special interest” gets used rather than “hobby.”  Everything we like must be a symptom in the eyes of certain allistics, and I believe that’s what the OP meant. That it’s frustrating that we can’t enjoy something without it being inextricably linked to our autism by other people. 

We do have things we fixate on and yes, that can be related to the autism. But some things really are just hobbies and classifying them as “special interests” is a way a number of allistics (especially psychologists and psychiatrists) Other autistics.

Actually, what I meant was that things in general, like diagnostic procedure, have gone to shit since I was diagnosed. My own story seems to be so very different from anything else I’ve heard, and it seems to me like understanding of autism has gone down since then, not up.

For example, I was surprised to learn that people have got it into their heads that Asperger’s Syndrome isn’t autism, because it was never explained to be as anything but. It seems, however, that that hasn’t been the case for a lot of people. I did receive therapy, but I’d never heard the phrase “quiet hands” before coming to Tumblr, and in fact I was in a group therapy that treated us like human beings. I would’ve thought there’d be more of that these days, but there appears to be less.

My hesitations with diagnosis for adult autistics comes from my experience in trying to find a new psychiatrist once I became an adult myself.

I was sent to a woman who had no idea what autism was. I had to explain it to her, and she proceeded to decide that I didn’t have it–she tried to remove my diagnosis without even knowing what the diagnosis meant. Someone who knew what autism is and had an expert understanding of it probably would’ve noticed that I literally could not look at her face by the end of the session. Not even faked eye contact, I could not look at her. That’s part of how my autism expresses itself–the less I like a person, the harder it is for me to look at them.

Admittedly, this woman was particularly bad. She also tried to dismiss my PTSD diagnosis because I’d never been caught in a tornado or seen someone raped and murdered (because, I guess, brutal bullying, parents committing suicide, and being raped oneself do not count as trauma). But she’s why I urge caution and research before seeking diagnosis as an adult. Awareness and knowledge of autism has not improved; it’s still viewed as something only children have and in many places adult psychiatrists have little to no knowledge of what it really entails.

I have very little way of knowing where the people who ask about diagnosis live and what their situation is like. If they’re in a situation where, due to expense or other circumstances, they can’t afford to keep trying if they meet an asshat like that woman, trying to get a diagnosis could just be stressful, expensive and useless. Thus, I say consider it carefully and do as much research as possible to find someone who knows how to diagnose autism in adults if you want a diagnosis. But if you’re not sure you want one or not convinced you need one, you may want to refrain or speak more to other people about it first. 

Ugh, you’re gonna make me look at it? Yay.

The first thing that jumps out at me is this:

Not many children with autism live independently after reaching adulthood, though some become successful.

I know for a fact that there are a number of independent and successful autistics adults right here on Tumblr. What really bothers me about this, though, is that it adds to a pervasive rhetoric on autism that make parents, siblings, and others react to an autism diagnosis with “OMG my child/brother/cousin/whatever will never be independent they’ll be like this their whole lives what a tragedy what a burden OMG!" 

Here’s an entire paragraph that makes me want to barf:

There are many anecdotal reports, but few systematic studies, of aggression and violence in individuals with ASD. The limited data suggest that, in children with mental retardation, autism is associated with aggression, destruction of property, and tantrums. A 2007 study interviewed parents of 67 children with ASD and reported that about two-thirds of the children had periods of severe tantrums and about one-third had a history of aggression, with tantrums significantly more common than in non-autistic children with language impairments.

The connection of autism to violence, aggression and tantrums. Those of us who are autistic recognize meltdowns for what they are, but you’ll see the word isn’t used here. It’s true that it’s important to teach autistic children as much as possible that violence and aggression are not okay, but there is no understanding or acknowledgement of what causes these incidences in autistic children to begin with. It just links autism to aggression and tantrums as if autistics fly off the handle for no reason whatsoever, and we know that’s not true.

Think about the Sandy Hook shooting. How many people, in the aftermath, might have gone running off to Wikipedia to find out more about autism and saw that? Looks pretty stigmatizing to me. 

But the thing is, I’m not the one who made that meme. The person who did make it is more than welcome to do a write up on it and send it to Autistic Hedgehog if they’d like, but that’s all I care to stomach of the article myself. 

Oh boy. 

This sounds like the sort of thing that won’t prove easy, especially if they’re not being entirely serious about it. I don’t know, do any of them seem to have real worries about it, or is it all just “Sometimes I act like X, I must totally be autistic, lol”? The former is something that may take some sensitivity to navigate; the latter will pit you up against a bunch of privileged people who don’t get that this is life to  you, that you can’t laugh about it and then not have to deal with it later.

This is not one of the particular problems I’ve had with allistic/NT friends, so I’m going to ask my followers here for some help. Please send answers directly to my inbox so I can be absolutely sure to get them. 

Autism has a range of symptoms, including the ones you’ve described, and not every autistic person has all of them. But there are also other disorders that can have very similar symptoms. 

While I’m not in any way, shape or form a doctor and maybe not the person to be giving out medical advice, it does sound like your symptoms are extreme and disruptive enough that you should talk to someone about it. Even if it’s not autism, it might be something else that you could get treatment and/or support for. It sounds bad enough that I don’t think you should write it off as social anxiety. 

You may also want to try doing some reading, checking out some blogs of autistic people here on tumblr. 

I honestly don’t know. I would venture a guess that it depends on the individual in question, but it’s not something I know much about. Though they do sound like the kind of stims that may be exacerbated by something else, like some kind of anxiety disorder. 

Here’s the thing. While in a sense your parents are right, I also think they’re very, very wrong.

They’re right that there will be people who call you a faker. That’s because there are people in this world who are ignorant and who probably won’t change no matter what any of us says or does. It’s something autistics deal with a lot: people who think we’re faking, or people who dismiss us because we appear to be “high-functioning” and thus don’t fit with what they think autism is supposed to mean. I won’t lie to you; you are going to encounter those people.

But I think your parents are wrong that it’s a bad idea. I think it’s a great idea and if it’s what you really want, you should go for it. Raising awareness is important, especially raising the awareness that autism means many different things. That we’re all different people with all different strengths and weaknesses, capable of accomplishing an enormous number of different things.

In the end, though, it comes down to you. There will be people who will call you a faker. There will be people who use you as inspiration porn. You may have to keep it quiet until you actually land a spot on a team–which in and of itself won’t be easy–to avoid discrimination. But if it really means something to you, don’t let ignorant people stop you from doing it. If it’s worth it to you and you’re willing to face what hurdles may come, more power to you. 

Whatever choice you make, make sure it’s the one that suits you, the one you pick for yourself, regardless of what others might say or do, because it’s what you want. You’ll always find support here at AH no matter what choice you make. 

It’s very easy to not know you’re autistic. If you appear to function well, people won’t see it in you, and if you don’t know a lot about it then of course it’s no surprise that you didn’t guess.

As to getting diagnosed…there was a time when I would have said absolutely, but that was before I discovered that things have been going to hell in a hand basket since I was diagnosed. A lot of people seem to be under the impression that things are much better now, but those people are usually allistic parents.

Now with the changes to the DSM on top of everything else, getting a diagnosis as an adult…it may prove difficult. I already know from experience that psychiatrists for adults often don’t know how to handle the idea of autistic adults. If you can find someone who knows what they’re doing, by all means, get a diagnosis. But don’t be afraid to do some research and talk to some people first.

If at all possible, find other autistic adults in the same region as you who were diagnosed as adults and may be able to point you in the right direction. But that’s really a best case scenario. 

There could be a lot of reasons behind this that you should take into consideration way before misdiagnosis. 

First of all, it could be that you’re prone to shutting down rather than melting down (which might explain the lack of crying). Both tend to occur from overstimulation of some kind. I was very prone to shut downs whenever a family member or friend died (which happened a lot for me). If I cried at all, it was very little, and I’m sure my reactions came off very cold to other people. There was so much grief going on around me that I couldn’t cope with it, so it was a bit like I disconnected a part of myself. Maybe you do that instead.

Maybe it’s as simple as you’ve managed to, one way or another, keep yourself free of situations and spaces that cause you to meltdown. That’s pretty hard to do for anyone, though, as meltdowns can be caused by anything from a place that’s too crowded to a day of snowballing disasters (even if they’re small disasters).

Or maybe you’ve learned how to deal with things enough that you don’t have meltdowns. I don’t have them very often either. There’s complications from autism that I’ve learned to deal with quite well. I used to be the kind of person who couldn’t handle any change in her routine; literally, if I burnt my breakfast, I wouldn’t go to school. I don’t know exactly what happened since then–I think, on some subconscious level, I realized how little I got out of giving in to that–but these days I can roll with most changes, and recover from the ones that do get to me. 

Maybe you’ve learned to process what’s happening to you and avoid meltdowns without even realizing it. It’ll take some self-examination to find your answer, but don’t assume it’s misdiagnosis until you’ve looked at all the other possible answers. We’re all different, we all learn and process differently, we grow to be able to cope more with some things and sometimes less with others.

(Small caveat: I don’t go to school anymore, and I don’t have to work, so not having to deal with those upsetting environments has likely done a lot to help with my lack of meltdowns and the like. If I had to get a day job, I don’t know if I’d be able to function as often and as well as I do. Just the thought makes me sick to my stomach. Just pointing out that learning to cope is great and wonderful and all, but what therapists and the like–who will try to teach you these things–forget is that environment counts too.)

I would think so, since allistic simply means a person who isn’t autistic. Whether or not you’re neuroatypical in some other way is, I think, besides the point.

But as I only learned the term allistic when I first started on Tumblr, I could be wrong. Anyone else?

Well, Jay, my question for you is: Do under even understand why it makes you uncomfortable?

It’s important to understand why you feel the way you feel, even if facing it might be uncomfortable. You’ve been honest with yourself that you have this problem to begin with, which is good.

Now, do you feel this way because someone else’s stimming or meltdowns, which can be loud or distracting or numerous other things, overload your own senses? Is it because you, like everyone else, have been taught your whole life that this sort of thing is supposed to make us feel uncomfortable? (Hooray, ableism.) Is it because there’s a part of you that fears that somehow anyone around you might see this person and make some sort of leap that you, too, are autistic (even if you’re not stimming or having a meltdown at the time)? Maybe it’s all of those things. Maybe it’s a combination of two of them. Maybe it’s something else. But discovering the reason will help you if you really want to change how you feel.

You’re also going to need patience and understanding, both for the other people and for yourself. This isn’t something you can change overnight, so don’t get too frustrated with yourself when you can’t stop those feelings right away. We’re often raised in societies that teach us that it’s rude to stare at people who are disabled, rude to ask questions, etc. etc., but really what we end up being taught is that it’s rude to acknowledge the existence of disabled people and, if we do, it’s rude to feel anything but discomfort and pity. We’re taught that there’s a stigma just by being near or like disabled people, and even when we’re disabled ourselves, we can’t easily escape having those lessons etched into our brains. 

This doesn’t make you a bad person, it really doesn’t. You’d be a bad person if you didn’t give a damn, but clearly you do. Now you need to accept that you’re not perfect, that you probably won’t change your feelings and get this right instantly, and that will help. 

And like I said, patience and understanding for the other person(s) involved. You know what they’re going through, you’re in a better place to empathize than anyone else. You actually understand, to some extent at the least, what drives their behavior, so you know there’s no real reason it should be so stigmatized. You know, somewhere inside you, that society is in the wrong for judging people, and part of getting over this will likely be learning not to give a damn what society thinks of you.

It’s hard to get away from what society teaches us; even when we’re autistic, a lot of those lessons burrow their way in. Shaking them off takes time, patience and acceptance, and what you need to do more than anything else is give yourself (and other people like you) all three of those. 

(Cont.) the annoyance of friends and family. And myself. It’s frustrating sometimes, but I can get some level of control over it so I’m not pacing or darting about in public.

——-

Well, I don’t know if it's exactly the same, but I do my best thinking and imagining when I’m moving in some way. I end up doing a lot of planning for my stories while I’m walking, or when I’m in a moving vehicle (which has led to me having to assure people, over and over again, then I’m fine while in a bus or car–I’m just thinking).

I’ve learned to control my movements, because if I’m, say, thinking through a conversation between two characters in my head, I sometimes follow through with their gestures and stuff. People tend to stare when one does that.

Anyone else?