Autistic Hedgehog

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Posts tagged with "autism spectrum disorder"

it kept telling me my ask didn’t work…

hi, i really like your blog! i tried to do this in an ask but it kept telling me i had links in it… but it didn’t. i kind of need help and i know that’s not exactly your blog’s point but i thought i should try. 

i am 20 years old. my parents and 3 mental health professionalfolk think i might be on the autism spectrum. the three people i love most and who know me best think it’s a possibility. one person i know on the spectrum does not think i am and this is what makes me particularly unsure. i am confused. there’s so much i identify with, so much so much, on the spectrum not-otherwise-specified slightly aspergersy. but as with all mental-psychology stuff, that could have a different explanation. especially since nobody said anything during my childhood, and whatever symptoms i have aren’t ‘extreme.’ no one has given me a solid answer.

i want so badly to have a real diagnosis. i want so badly to have a name for what’s in my head. i want so badly to find help and to find people who understand. but i would feel guilty identifying as being on the spectrum because i might not be there and i don’t want to offend or trouble people who are.

do you have any advice they can possibly offer on figuring these things out?

———

Hopefully this goes through correctly. Tumblr can be a bit wonky at me when I edit submissions. >.<

Sorry it’s taken so long for me to answer, things have been a bit…rough for me lately. As to your question:

It sounds like you and quite a few other people you know feel you may be on the spectrum. Just because one person who’s on the spectrum doesn’t think so doesn’t mean very much. The thing is, we’re all different. It’s a spectrum because there’s a lot of variation, and it can express very, very differently. A good example: Autistic headcanons differ a lot. There’s a number of characters other autistics view as autistic that I don’t, and vice versa. No one character will read autistic to all of us, because our experiences of the world are all different, so if someone on the spectrum doesn’t think you are, that’s only one opinion.

There is absolutely nothing wrong with wanting a diagnosis, and you shouldn’t feel ashamed by any of this. Even if you end up diagnosed with something else (ASD symptoms can overlap with other things), no one has a right to tell you that you should be ashamed.

And honestly, even if your diagnosis does turn out to be a different one? I for one would not be offended that you thought you might be autistic, and I don’t have much patience for anyone who would be. Because so many of us have been there, wanting to understand these differences in ourselves, needing to put a name to it. You’re not some dudebro looking at a list of Asperger’s Syndrome symptoms on the internet and using them as an excuse to be a jerk. You’re one of us, someone who wants to understand why their world seems different from everyone else’s, and your feelings are valid. Don’t let anyone tell you otherwise. 

I know that physical violence is wrong, but I've found that it's the only way to get people to respect my boundaries. I feel terrible for enforcing personal space rules with threats of hitting people, but I don't know what else to do. I need people to not touch me, and when I tell them "don't touch me", it just makes them do it more.

Anonymous

I’m going to say something here that might be a bit controversial, but I think it needs to be said.

It’s true that in most situations, avoiding violence is best. But we should never forget that the idea that violence is wrong is often used as a tool of oppressors to keep people oppressed. Think about it: People are perpetrating violence (and yes, it is violence) against you, yet you’re the one feeling guilty. Because so many of us live in a society so twisted that many types of violence against people are accepted and normalized, but standing up for oneself is demonized. Especially when you’re someone that someone else wants to keep oppressed. 

You shouldn’t let people convince you that standing up for yourself is wrong. You shouldn’t let people convince you to tolerate touching you don’t want. It may be that threats of violence will be the only thing you can do with some people (violence was the only thing that worked against bullies in school) but let’s see if we can’t find something you are more comfortable with that will work on most people.

First of all, if you’re dealing in people you know won’t seriously harm you, you could try a threat of much lesser violence: pinching. You may have to follow through on it with some people, but most people really don’t like being pinched and if you feel like it’ll make someone back off (and make you feel less guilty) give it a try.

Something my husband suggested was carrying a small water gun with you and squirting people with it when they touch you against your will (it does often work on cats, after all). Again, since this is probably going to annoy people, be careful who you use it on and you should probably give anyone you do use it on a warning first. 

You can also try saying “Ow” really loudly or screaming like you’re in pain, or something similar. Something that will make other people feel uncomfortable and guilty–which they should

Whatever you try, always keep your own safety in mind. And though it can be hard, avoid those kind of people whenever you can. People who have so little respect for your feelings that they touch you against your will are not good people. Even when it’s family, such behavior is toxic. You’re not the one at fault here; they are.

(If anyone has any further suggestions or knows some nonviolent techniques that work in these situations, please send them to my inbox.)

Feb 7
[&ldquo;Students with autism gravitate toward STEM majors.&rdquo;
And what about the other 66% of us?]
So this article has been floating around the autism tag for the past several days now. STEM majors, for those who don&rsquo;t know, are science, technology, engineering and mathematics&ndash;you know, all those things Hollywood and &ldquo;experts&rdquo; like Simon Baron-Cohen seem to be convinced all autistics are good at.
The headline makes it sounds like this is HUGE news. But if one actually reads the article, one will see that the number is roughly 34% (autistics) versus roughly 23% (allistics) (see, Baron-Cohen, I rounded the numbers up and down! Whoo hoo, math genius, right here! *snort*). 
Thirty-four percent isn&rsquo;t even half. It&rsquo;s a minority of us. Where&rsquo;s the study on what the rest of us like to do with ourselves? I mean, not that I think it&rsquo;s going to come out of Simon Baron-Cohen (the co-author of this paper) because he seems to aim to study only topics that will confirm his pet hypotheses for him. 
What bothers me is how many people will see the headline, not actually read the article, and think they&rsquo;ve learned something significant about autistics. You know they will. And then next thing you know one of us is sitting with the family at Thanksgiving and Auntie Esther is all &ldquo;Why don&rsquo;t you become a scientist? That&rsquo;s what autistic people do. All the studies say so!&rdquo; Blargh.

[“Students with autism gravitate toward STEM majors.”

And what about the other 66% of us?]

So this article has been floating around the autism tag for the past several days now. STEM majors, for those who don’t know, are science, technology, engineering and mathematics–you know, all those things Hollywood and “experts” like Simon Baron-Cohen seem to be convinced all autistics are good at.

The headline makes it sounds like this is HUGE news. But if one actually reads the article, one will see that the number is roughly 34% (autistics) versus roughly 23% (allistics) (see, Baron-Cohen, I rounded the numbers up and down! Whoo hoo, math genius, right here! *snort*). 

Thirty-four percent isn’t even half. It’s a minority of us. Where’s the study on what the rest of us like to do with ourselves? I mean, not that I think it’s going to come out of Simon Baron-Cohen (the co-author of this paper) because he seems to aim to study only topics that will confirm his pet hypotheses for him. 

What bothers me is how many people will see the headline, not actually read the article, and think they’ve learned something significant about autistics. You know they will. And then next thing you know one of us is sitting with the family at Thanksgiving and Auntie Esther is all “Why don’t you become a scientist? That’s what autistic people do. All the studies say so!” Blargh.

Feb 6
[It&rsquo;s not a symptom
It&rsquo;s a personality trait]
Now would you get the fuck over it and stop pathologizing every single fucking thing we do? Sometimes a hobby really is just a hobby. 

[It’s not a symptom

It’s a personality trait]

Now would you get the fuck over it and stop pathologizing every single fucking thing we do? Sometimes a hobby really is just a hobby. 

Are there any guidelines for what constitutes a stim?

Anonymous

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. 

[The problem with being an Autistic Hedgehog
Is that we can turn our quills on ourselves]
And it has really, really been that kind of week. 

[The problem with being an Autistic Hedgehog

Is that we can turn our quills on ourselves]

And it has really, really been that kind of week. 

So, I noticed that you said that some things haven't been going well for you since you were diagnosed. Would you mind talking about that some more? I'm autistic and undiagnosed (although I have spoken to psychologists about it. I just don't have anything official and on paper.) At one point, I very much wanted that official diagnosis, but now I'm pretty sure that I've changed my mind. I want to hear from others about their decision to get diagnosed or not.

Anonymous

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. 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. 

What part of the Wikipedia article on autism stigmatises?

Anonymous

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. 

Any advice on how to talk to allistic/NT friends who have suddenly decided that they have autism, just because "some of the symptoms fit", but actually have no clue what it's like to live as an autistic person? A few people in my life are really starting to frustrate and offend me, and I am not sure how to explain things to them in a way that they'll understand and respond appropriately to. Maybe some other followers have experience/tips?

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. 

[Allistic writes a story about autistics that show no emotion
I&rsquo;m showing my annoyance]
Mod note: Anon creation

[Allistic writes a story about autistics that show no emotion

I’m showing my annoyance]

Mod note: Anon creation