Autistic Hedgehog

I guess you could say spoons are a unit of measurement, and what they measure is the ability to cope with the shit your day throws at you. When you’re out of spoons, you’re also out of coping ability. I have no idea where the term originated, however, and never used it until I heard it from my husband (who is a lot more up on memetics than I am). 

Here is a response to a very similar question I received around the same time. 

Here is a list of criteria put together by someone who is actually autistic, rather than some unfortunate “expert” with a lot of misconceptions. Just a few things I’d like to point out for you to keep in mind while reading:

1. Teenagers or adults with undiagnosed autism are the proverbial babies that are taught to swim by just pitching them into the water. Many develop a number of coping mechanisms to deal with their autism symptoms and even overcome a few altogether. That an individual may have done so does not disqualify them from being autistic.

2. Some of these things can be very hard to identify from within. It may take a lot of time and thought to see if this criteria applies to you, because it can be so difficult to notice things you yourself do. As well, some of these are things (like differences in sensory perception) that one may not have had much reason to realize is different in themselves from what it is in others. I never knew I was synesthetic until a few years ago, because I always assumed everyone else processed the world synesthetically too.

3. It’s my firm belief that the underdiagnosis of DFAB girls is due in part to socialization. Two (erroneously) common “traits” of autism are a lack of empathy/emotion and less desire to socialize. However, any child identified by others as a girl will be encouraged, from a very young age, towards pursuits and hobbies that surround empathy and socialization (where as a child identified as a boy will not be, or will be encouraged towards these things to a much lesser degree). They will be expected to be more emotional and social, as well as to be less energetic and rowdy than, DMAB boys, thanks to sexism and cissexism. So when dealing with someone who either identifies as female or especially who was identified as female from birth, keep in mind that some of these traits may have been greatly lessened or forced out by how the person in question was raised. That doesn’t mean that the individual doesn’t necessarily have them, but may have been forced to have them “under control” so they don’t show nearly as strongly as they otherwise might. 

Oy vey.

Many autistic people aren’t in the least bit antisocial. A lot of us aren’t even all that introverted, but can be driven to both introvertedness and antisocialness by the way society treats us. Being social doesn’t even begin to disqualify you from being autistic, and I’m sure I can find other autistic people right here on tumblr who’ll agree with that, if you think a wake up call might work on your mother.

Otherwise, often the best way to look into diagnosis is to get a referral from your GP or bring it up with your psychiatrist if you already have one. It can be difficult, because there are a lot of misguided notions out there like the ones your mother expressed. In the end, it’s about whether it’s worth it to you. If you feel it would make a difference for you, you should pursue it regardless of what your mother thinks. She’s not the one who struggles with eye contact or has meltdowns, after all. 

Honestly? This is about you, not her. Unless her anger is very uncomfortable or dangerous to you, worry more about your feelings, rather than hers. If you have to, ask for your dad’s help, since it sounds like he might understand. Your mother may not even need to know about it.

If it is important that you talk to her about it, then there’s something to keep in mind: Modern rhetoric is on autism is still very parent-blaming. The days of the “refrigerator mother” might be largely over, but all these things science keeps thinking might be “causing” autism feels like blaming, too. Too old, too young, where you live, what you eat, how much money you have…these are all correlations, but they’re often put out there by journalists as causations, and that’s wrong.

Unfortunately, it also gives the impression that in some way, if a parent had just done something differently, their kid wouldn’t have autism. In truth, these things are likely just coincidences, but no one tells parents that. So many parents, consciously or subconsciously, end up with the feeling that if their child is autistic, it would be their own fault. Organizations like Autism Speaks don’t help them get through that feeling. 

That is most likely what you’re up against, or at least part of it. It’s terribly unfortunate, and terribly common, for resistance to diagnoses of neurodivergence to come from this feeling, for parents. And your mother needs to understand that this is in no way about her. It’s about you. It’s about how you feel and what’s right for you. Do you feel like there’s something “wrong” with you, or do you simply see that you have differences, and want a name for that?

Think about what you want to say and how you want to say it. What this means to you. As I’ve advised before, write it down if you need to. If that doesn’t work, you may have to be more underhanded about it, but again, ultimately, this is about you, not her. 

No, I haven’t. I don’t tend to read a lot of non-fiction about autism. I got a fair bit thrown at me when I was younger, and I’ve been diagnosed since I was 9 so like…sometimes I feel like a walking Complete Guide to Asperger’s Syndrome, if that makes sense.

I do think I’ve seen some complaints about Attwood in the autism community here. Or maybe I’m thinking of someone else. Hedgies?

Autism fluctuates, I’ve noticed. Some things get better, some get worse; none of them necessarily stay that way. 

I’ve gotten much, much more twitchy and upset in crowds over the years. On the other hand, you know that thing where a change in our routine—even a small one—can completely ruin our day? Happens to me almost never anymore. Used to be if my breakfast went wrong, I couldn’t go to school that day. Now when something changes, I can almost always handle it.

So don’t worry about being “less” autistic, because autism simply doesn’t work that way. All that’s happened is you’ve gained more spoons to cope with those things, and that’s good. 

Hey, these spikes aren’t for show, you know. He’s not going to find it that easy to poke me with that staff of his.

I know that. My point was simply that we know the different ways autism can look in adults, that it can even look so little like autism on first glance that it slips past, and we have actually known this for a very long time, so there really is no good reason to not have more experts on autism in adults. 

I was actually thinking back to an article I read something like ten years ago (when you’re young, and you’re autistic, and people know you’re autistic, they will inevitably inundate you with articles). It was about adults exactly like that, people in their 30s, 40s, even their 50s, who got by for a long time without an autism diagnosis simply because they could pass enough. And about how experts were starting to recognize the signs of that. And yet somehow, adult autism experts are rarer than hens teeth. 

That there are other problems with obtaining autism diagnoses is a given, but that the “You can speak/hold a job/show emotions/etc. so you can’t have autism” ignorance is still so prevalent, when we’ve known for more than a decade that autistic people can do those things, boggles my mind. 

The first thing to do is try asking your GP for a new referral. Explain that the psychiatrist she referred you to refused to even talk to you about it. It may take some time to get the referral, but she ought to be willing and able to do it. There’s a big difference between someone saying you don’t have autism and someone refusing to even discuss it, so in this case, you didn’t actually remotely get what you went to the psychiatrist for.

It might help to do some research and see if you can find any autism specialists in your area that your GP can refer you to. Whatever else, and I know this is hard, but try to be firm and clear with your GP so that she understands exactly what the problem is. If you need to, write down what you want to say beforehand, just in case your brain does the Autism Nope on you. I’ve walked out of a lot of doctors’ offices without saying what I wanted to because of that. 

Start there, and see what happens. 

Not necessarily. We talk about meltdowns more frequently here, but shutdowns happen too, and are basically what you’ve described. A lot of us have some at least occasionally, and there are those of us more prone to shutdowns than meltdowns.

It’s really down to how each individual autistic copes with sensory input, and definitely doesn’t rule out an autism diagnosis. 

Word. 

Hi Nicky,

I always find these ones a bit sticky, because it’s hard to tell if these is an autism problem, a male privilege problem, or a little bit of both. Even when we sometimes miss cues and don’t understand why something hurt someone, most of us can understand once it’s explained. That they won’t stop makes me suspect it runs deeper than just the autism.

Regardless of what’s causing it, it’s not okay. It’s hard to know what exactly might work without knowing them for myself, but do you ever just get angry with them? Yell at them or stop talking to them altogether? If the autism is playing a part in this at all, then one thing you’ll find with a lot of us is that actions speak louder than words. Let them see how upset you are. Has anyone ever told you that you shouldn’t be firm or even angry with them simply because they’re autistic? Because that’s wrong. We can do bad things too, and autism is not a get out of jerk free card. 

Again, it’s hard to give advice in situations like these because I don’t have a little information, and I’m sorry I can’t help more. But whatever else you do, don’t let them push you around because they have autism. 

Sadly, he’s been very busy, protecting the Nine Realms and moping over his human girlfriend, and hasn’t been able to keep our date. Honestly, I’m thinking of spending some time with that brother of his. Can you believe the poor guy has been locked in prison for months? I’m disappointed in Thor. I expected more of him. 

Yes, it does indeed seem that way. What saddens me the most is how few specialists in ASD there are for adults. Autism is not new, not in the least. Not only that, but almost 20 years ago when I was diagnosed, they were already finding a lot of autistic adults who’d fallen through the cracks because they passed well enough. None of this is new information and it should be something there are competent therapists and psychiatrists for. That there isn’t distresses me deeply. 

I’ve gotten a bunch of these in my inbox tonight. I am so, so sorry that so many people go through this crap. I mean, I experienced something similar when I made an attempt to move to an adult psychiatrist when I turned 18 (and ended up with my pediatric psychiatrist right up until I left for Sweden five years ago) but I really hoped that was an isolate incident. Running AH has taught me it isn’t, and that kills me. 

Good. Lord. I just…I don’t even. I really wish I could just gather up all the people who suspect they’re autistic and take them back in time with me to the people who diagnosed me, because they knew what they were doing. 

None of this “Oh, hey, she can talk, and there’s some emoting going on, let’s go home.” No, they video taped me so they could study the small details of the way I moved and interacted, the tones of my voice and the nature of my body language. I shudder to think of what I’d deal with being diagnosed in this day and age. 

*facepalm*

*facepalmfacepalmfacepalm*

I’m so, so sorry they did that to you. That was the product of ignorance, ableism and privilege, plain and simple, and it was wrong. They thought it was okay because ableism is deeply ingrained in society, and people are taught all the wrong things about autism—and sadly, they thought it was okay because in truth, allistics aren’t naturally more empathetic than us. They just assume they are and many of them never teach their kids true empathy.

But they’re also wrong. Why shouldn’t you be emotionally capable of caring for a baby? Don’t let them get you down. This is a big thing in your life, and you deserve to be happy about it.

And congratulations! 

I’m alarmed by the amount of these questions I get. Holy crap, what are they teaching psychiatrists and psychologists these days? (Fellow Hedgies, that was rhetorical.)

I don’t know if I’d say she was bullshitting you…more like she’s ignorant as fuck. She’s not right. She’s wrong. Bad wrong. Badong. Just like allistics, we have all kinds of skills and talents, and we certainly don’t lack emotion or empathy. That’s an unfortunate bit if ignorance that’s been spread around for far too long. Maybe your therapist needs to read up on things like the Intense World theory. Times, they are a’changing. 

The Wendrow case. My thoughts on the Wendrow case…hoo boy. I didn’t know about the Wendrow case until I received this ask, and in the end, I had to have my husband read up on it for me, because I couldn’t get through a single article without crying. They were that nauseating. It’s hard to elucidate my feelings on this, when every article I found didn’t bother much with facts and chose instead to exonerate the father and lavish stomach-churning amounts of pity on him. 

Trigger Warning: Rape, abuse, ableism.

For those who don’t know, the Wendrow case involved a young non-verbal autistic girl who, via a method of communication known as Facilitated Communication, made claims that her father had raped her multiple times. To make a long short story, in the end, because she couldn’t perform like a trained monkey in court, her father was acquitted. 

Do I sound bitter? I can’t help it. The articles really were gross. Just the very fact that the police taking the girl’s word as true is regarded as them “not trying to find the truth” is enough to make me want to cry. My feelings on the matter are thus a bit tangled, and revolve mostly around the criticism (dare I even call it) of Facilitated Communication, which is so rife with allistic privilege, I want to slap someone.

Those who are tested—yes, tested—sometimes prove unable to communicate via FC under pressure, and people (all of them allistic) generally ask “How could it be that someone who can otherwise write speeches etc. etc. etc. with this form of communication suddenly can’t use it in a testing environment?” And because they’re allistic (and maybe because they don’t remember or know how uncomfortable testing environments are) they figure, hey, FC must not really work, and it must be the words of the Facilitator and not the autistic person themselves.

They think this because they’re allistic and thus they’ll never be stuffed in a box like a guinea pig and asked to prove that their method of communication is viable, knowing all the while that if they fail, their rights as a human beings will be stripped from them. 

So when using FC in court, all the girl was able to produce was gobbledegook, which led to the father being acquitted. Her Facilitator, according to my husband, was painted really atrociously in the articles, while the father was held up as the poor victim of a misandrist witchhunting country out for tasty tasty manblood. And maybe he is innocent, but when I think about this, I can’t help but doubt. Consider how many allistic women can’t handle the pressure of a rape case. Hell, I know that I, having already faced the pain and horror of being judged unfairly due to my struggles with communication, might not be able to handle what they asked of this girl. I, who can speak for myself, am not sure I would’ve fared any better in court. 

I can’t sit here and accept that FC doesn’t work and the father is innocent, because I know what it’s like to be autistic from the inside. And even if he is innocent, it doesn’t matter. It doesn’t matter because no matter how many times FC does work, it’s cases like this one that will be used as precedent instead. It’s cases like this one that will be used to strip autistics of their rights and force them to remain in unsafe environments.

In all the furor to condemn the case, no one in the press stopped and thought. They didn’t think “holy shit, this girl might have been sent back to a man who constantly rapes her.” That’s the thing. She might well have gone home to a place where she’s raped every day and can do nothing to defend herself. And even if she wasn’t, other autistics will be, helped along by this case. And I can tell you how that makes me feel: It fucking terrifies me. 

Sorry, but at the moment, I don’t really have much desire to make a Facebook page. Maybe at some point, if AH grows large enough, but I really don’t much like Facebook, to be honest. If more people start requesting it, I’ll do it, but for the moment I’d prefer not to. 

I think it’s not actually that uncommon for us to be interested in people. I’m fascinated by history and culture, and if I’d known about anthropology (and had the money) I might have gone into that field myself. And I know I’m not the only autistic to feel that way, either. 

I don’t know how much us being autistic has to do with it. Maybe some, maybe a lot, maybe none. Maybe, because we already have to study people a lot, it’s easy to get fascinated by it. Or maybe we have the same ratio of interest in things like anthropology as allistics do. Now that’s a study that would potentially be interesting; not how many of us go into STEM. 

Maybe? I don’t know. I mean, if there’s something I’m not good at, but I really want to be, I’ll focused a lot of energy and determination into getting good at it, but I don’t know if that’s an autistic trait, or if I’d be like that anyway.

I do think sometimes we can feel pressured by society to be good at things so people won’t act like we’re worthless, so I wouldn’t be surprised if we’re a bit more prone to putting effort into things we’re not very good at. Beyond that, I’m not sure. Anyone else have thoughts/experiences on this?

One’s place on the spectrum can change from day to day, sometimes even from hour to hour. It’s not at all a static thing.

Many things affect our coping abilities. It may be that the past year has been more stressful for you in some way that is depriving you of coping skills, thus requiring you to stim more, causing more meltdowns and making you more sensitive to sensory stimulation. Speaking as someone whose been under a lot of stress this year, I’ve had a number of problems including such raised sensitivity to sensory stimulation that there have been foods I can’t eat. 

Spending time passing can also lower your ability to cope. Really, anything too stress, too traumatic, too painful—all these things can potentially cause heightened symptoms. It can help to find ways to combat the overstimulation: Carry something to stim with if you have any sort of tactile stims (I keep a satin ribbon with me); use an iPod or sound-dampening headphones to cut down on noises that bother you and stress you out; choose clothing that you’re as comfortable as possible in; eat foods with textures that comfort you. (If any of my hedgehogs have any other useful coping methods, hit up my inbox.)

I wouldn’t worry about whether this is some other disorder at this point. It’s perfectly within the nature of autism and we all go through up and down phases when it comes to dealing with everything life throws at us. 

Well, I can only speak for myself, but not only do my interests tend to shift, they come in different levels. Like, I get very surface fixations, and then I’ll want stuff to do with that fixation, and that can be as simple as buying a bunch of things in a color I’m fixated on. Other things run much deeper, and I’ll continue learning about them and being interested in them my whole life. 

Like, for example, there was a period where I was fixated on owls, and wanted to collect lots of owl stuff. That waned. But I’ve been interested in history and archaeology for a long time, and though sometimes I don’t spend a lot of time on it, it always comes back. (I also have a very special place in my heart for maritime disasters.)

Very few of my interests go away, but the intensity of them changes. I’ve heard of other autistics who, for example, learn everything they can about a special interest and then aren’t interested anymore. Based on what I know about my followers, my guess is that there are a lot of different (and perfectly normal) ways that we interact with our special interests. So I’d guess that your experience is no more unusual than any of ours.

No problem! :)