Autistic Hedgehog

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?

Stimming can help you stop a meltdown or recover from one, or may occur during one–it’s generally a repetitive movement done for comfort (though plenty of us stim out of happiness or excitement, too). Classic stims are things like rocking or flapping one’s hands, but a number of other behaviors count as well (I tend to like to rub satin ribbon).

The thing about defining a meltdown is that a) they’re not precisely the same for all of us and b) I suspect they change shape and form from childhood to adulthood.

How you meltdown depends entirely on you. You might get angry (this is common in children and is, sadly, often dismissed as tantrums), you might cry, you might scream, you might go completely numb. The most important factor and the thing that distinguishes a meltdown more than anything else, though, is this: You will not care what other people think about you while it’s happening.

This is very important for recognizing what a meltdown is to you. Me, I tend to cry (though in certain situations I cry until I get angry, at which point I often find the strength to get myself through, which is different from when I was younger) and I will sob my eyes out without noticing or caring that there are people all around me. 

In the end, a meltdown occurs when you’re so overwhelmed by something that you can’t handle it anymore, and the response is usually an outburst of emotion (but can be the complete absence of it). Knowing when you yourself are having an actual meltdown is going to take a bit of time and thought on your part. After the dust clears on a particularly emotional moment for you, look back at it. Were you somewhere others could see and didn’t care what they thought of your behavior? Even if you were alone, did it matter to you if someone saw you? Learning to recognize these things will tell you when you’re having a meltdown. 

I’ve never experienced this problem myself, so I have absolutely no idea.

Anyone else have any sort of experience with this kind of thing and/or advice on how to deal with it?

Allistic simply means not autistic.

I don’t hate allistic people. Or more specifically, I don’t hate all allistic people, but I certainly have low patience for the ones mentioned here, who behave in these ways. A lot of times we (that is, autistic people) are told we’re supposed to be nice, to appreciate our so-called allies even when they treat us like crap and say horrible things about us, and those are the allistics we tend to have issues with. (Or the ones who are straight up asshats.)

Anyone is welcome to follow AH, whether they’re autistic or not. However, in the end, this is a place for autistic people to vent their frustrations, and this often means that we’re going to be frustrated with allistic people. If you can understand that and are okay with it, you’re more than welcome to stay. All I ask is that you don’t try to tell us how we’re supposed to feel or act.

I don’t really know for sure, but it wouldn’t surprise me. I have some similar issues. The biggest problem I have is that if my mood is already bad or if I’m not feeling well in some other way, I get terrified to be out on my own. But also, when I’m depressed, it’s easier for me to miss certain social cues and I can be more sensitive to other issues as well.

Anyone else experience something like this?

I have no idea, but probably. Well, unless one flaps for reasons other than happiness. I tend to flap out of some form of anxiety. I think. I don’t fully recognize the emotion that causes me to flap.

But I suppose if it is your happy stim, then it makes perfect sense that doing it more means you’re happy more often. 

Oh boy. I’m not entirely sure I, personally, should be answering this question. My relationship with school was uh, rocky, to say the least. Usually when people bring up education, especially education for people like me, my communication skills go all kind of…camel-like. 

What I think is that the way schools divide children up into “good kids” and “behavioral problems” is majorly problematic and fucked up, and that right there makes the question a bit tough. However, basing it on the system as it currently stands: I think it’s a horrible idea to put autistic children with rowdy, loud children for long periods of time. I was always, always in with the wrong group of kids in one way or another and now I can’t go into a school building without having panic attacks. 

Mind you, there are a lot of reasons kids are loud and troublesome, and just saying they have behavioral problems and handling them all that way is in itself a very bad idea. But autistic people especially have an extra issue when it comes to all our sensory problems. No autistic person should have to be in a loud, chaotic situation they did not choose to put themselves into. Ever.