Autistic Hedgehog
Month
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.
Okay, I’ll try to answer more questions tomorrow, in between PT and crocheting practice. Right now, I really need to be in bed. Like, an hour ago.
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.
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?
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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.
the doctor then explained that it was “under the umbrella of Aspbergers.” My mother decided that no, I wasn’t and that was the last I ever heard of it. I did some research when I was younger, but I was in some pretty heavy denial. My lack of social skills were always swept under the rug by my parents and passed off as a product of too much internet and they suspected I was on drugs years before I even started doing them.
Now I’m 20 and only starting to take this seriously. I have legitimate problems socializing and connection with people, to the point where it becomes difficult to go to school or find a job.
I desperately want to be outgoing and social and the kind of person who’s friends with everybody (or has the ability to be, because when it comes down to it, I don’t like most people.) but when it comes to actually interacting with people, I get overwhelmed, depressed, and withdraw.
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.
And apparently have been for 7 months.
Before anyone congratulates me, I’d like to explain that this isn’t really happy news for me. It could have been, but instead it left me devastated. Allow me to explain.
I haven’t spoken with most of my family for years. My mom is abusive and neglectful, and most of my family members treat me like I’m a soulless freak. My sister was the last family member I was still talking to, but a couple years ago that ended too. Something happened, and when I was honest about my feelings about it, my sister twisted everything I said and made it all about her. As usual, the way my emotions are is not acceptable to my family. And the fact that I believe forgiveness takes work and won’t simply continue sweeping the way they treated me under the carpet makes them believe I’m a heartless, unforgiving monster.
So I walked away. For the sake of my health, so I could stop hating and doubting myself, I walked away and hoped that one day my family would understand my point of view.
Clearly, they don’t.
Last night, out of the blue, I received an incredibly passive aggressive email from my sister, stating that I’d been an aunt for seven fucking months and she
was going to write sooner but wasn’t sure if I could handle the response or probably the lack there of.
Because obviously I am an evil heartless monster who wouldn’t be happy for her.
I wasn’t even given a chance. Just like always, my family makes huge assumptions about my emotions, about whether I even have them. After all this time, they still believe they’ve done nothing wrong and I’m just cold and heartless. They think I have no heart to break, no soul to bruise, and that’s not true. I took me a long time to stop crying; my eyes still feel swollen and cruddy. I’m trying my best to cope with this, on top of everything else in my life, on top of the fibromyalgia and the depression, but I’m just so tired.
And the worst part was discovering how easy it is for all my hard work to be torn down. I thought I would go the rest of my life without wishing that I wasn’t autistic, that I was just like everyone else. I thought I had finally accepted that the problem isn’t me, it's them. Last night I discovered how fragile those things are. Those feelings don’t just stop, simply because we’ve removed ourselves from what causes them. Now I know they might always be there, waiting for me.
I hurt so much. I’m angry and frustrated and in a complete lose/lose situation. Unless I want to give in and ask for forgiveness when I’m not the one who’s in the wrong, nothing I do here will make a difference. I’m not like the rest of my family and so I will always be the cold, heartless one to them.
I guess the reason I’m mentioning this is because it might be a little quiet here at AH for a while. I’m still struggling to cope with all the other things; this has knocked me on my ass. It will take a little time to put the pieces back together, and I don’t actually know how much I’ll get done during that time. I figured an explanation was in order.
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.
I’ve mentioned before that I wanted to write science fiction starring an autistic character. I’ve written the first manuscript, though it still needs work. As a plot out the series and more ideas come to mind, there’s research I need to do. In this case, a question I need to ask my fellow autistics.
I’d like to repurpose the term ‘quiet hands,’ filled with so much negativity to so many of us, and use it for something else. In my sci fi universe there are a group of neurodivergent people who hide, sometimes in plain sight, to protect themselves from those who would want to erase them. Starting with autistics who pass very successfully (hence the use of Quiet Hands) they formed a group that works to protect other neuroatypicals from erasure. They work within the neurotypical population, finding others like them, giving them a home, ensuring that their needs are met. Throughout the history of my universe they’ve grown as a group, encompassing other neurodivergences and other disabilities.
I like the double meaning of calling them the Quiet Hands, but I wanted to know what other autistics thought about the idea. Is it too much? Would it bother you, or do you think it works?
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! :)
I said I’d do it, and I did. Still got my cold, sadly. I’m in bed with my laptop, my favorite Faith Erin Hicks comics, and some tea.
As I mentioned before, I’ll be closing the inbox if/when it reaches a point where there’s more than I can handle and will then reopen it when it’s cleared out. Hopefully that should make things easier.
He’s literally using the petition email system itself to defame, harass and threaten one of our own with sexual violence.
So please don’t spread that petition around anymore. Wait for a new one to be made that isn’t in the hands of a misogynist piece of shit who preys on more vulnerable members of the autistic community.
I am, in fact, alive. And I’m finally, slowly, beginning to recover.
Back in April I was hit very suddenly by a depression, and a damn bad one, too. So bad that I found myself crawling back into bed and sleeping for hours on end. Medication helped, but slowly, and in the meantime I was going through a pretty stressful situation.
Just when I was getting on my feet again, I was hit with a diagnosis of fibromyalgia. I’m still coming to terms with this and learning to deal with it, but in the grand scheme of things I’m feeling much better and I have more good days than bad now. My stress levels are still somewhat high, and I’ll be fairly busy at times, but things have cleared up enough for me to reopen AH.
Starting Monday, I’ll be opening the inbox again. However, instead of keeping it open constantly, I’ll close it once it builds up to a certain point to give myself time to answer without more coming in. I’ll also go back to posting submissions, so feel free to send any Hedgehogs you might have.
Guess you can’t keep a good hedgie down. :)
- Kaia
Kelli Stapleton attempted premediated murder of her Autistic Child by locking her child in a van with the windows up and lighting two charcoal grills inside the van. The police foiled the attempt however Issy likely suffered brain damage. We ask that the United States Department of Justice prosecute this under the Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act of 2009 as the crime clearly targeted Issy due to her disability.
Sign this petition to get justice for Issy!
If you’re going to be a douchecanoe to the people you claim to be allies of, you’re not an ally. You’re a douchecanoe.