Autistic Hedgehog

PLEASE SIGNAL BOOST: Warning about Disabled Skepchicks Blog and Call for Help

Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.

A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:

Nancy:

Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?

Thanks!

Nancy

Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)

I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.

That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?

So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.

The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren't actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:

http://skepchick.org/2014/02/disabled-write-for-us/

This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.

Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.

I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.

Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.

Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.

Posted 2 years ago

432 notes

autism, actually autistic, actuallyautistic, ableism, disabilities, developmental disabilities, cognitive disabilities, allistics, allistic privilege, neurotypical privilege, skepchick, signal boost, help, solidarity is for neurotypical people,

Still Alive. Kinda.

You may have noticed that I’ve answered a few questions today. Something that I said I was going to do quite a while ago. Well, I certainly thought I was going to.

The first two months of 2014 had other ideas. Very shortly after I started feeling better in December, I got worse again. I started having a great deal of back pain, which brought along depression and sleep deprivation. It was a pretty vicious cycle. The back pain causes both more depression and more sleep deprivation, the sleep deprivation caused more back pain, etc. etc.

Last month the sleep deprivation got really bad. We got a new pillow for me and that aspect, at least, is mostly sorted. I’m almost feeling human, but I’m still dealing with a lot of pain in my back and neck. We’ve tried every trick in the book, just about, and it won’t go away. I’m hoping my visit with the chiropractor tomorrow helps.

I will be answering questions as I can, but I don’t think it’s fair to promise any sort of consistency right now. I just have no idea what the year is going to throw at me next. It might be I’ll be fine, but there’s just no way of knowing. But AH is not dead. I know a lot of blogs of this sort have gone away or gotten very inactive, and I know we need a place where it’s safe for us to be prickly, and I’ll make AH that place for as long as I can.

Posted 2 years ago

6 notes

autism, actually autistic, actuallyautistic, depression, sleep deprivation, pain, chronic pain, fibromyalgia, fibro, autistic hedgehog lives!,

I have a question for you! Do most/a lot of autistics obsess over certain things for a while, and then move on to something else? I do this all the time, and I've heard just a couple other people say they do this. I'm just curious.

Anonymous

We vary in this a lot, I think. Some do exactly that. Some are more narrow and focused in their interests. Some, like me, are all over the place.

I tend to have longer term interests, and what I call “fixations.” Fixations are pretty much what they sound like: Things I get fixated on. Unlike with special interests, I don’t necessarily try to learn a lot about my current fixation (especially since it can be almost anything, including a color). I just get stuck on it for a while. Which is how I’ve acquired things like a panda plushie and an owl pendant.

Other people will obsess over something else until they learn everything there is to know about it, and then move on. There’s no one true autistic way with this kind of thing.

Posted 2 years ago

43 notes

autism, actually autistic, actuallyautistic, special interests, ask, asks,

Is it weird that I wasn't diagnosed with Aspergers until 2 days ago?

xxaggressivenightmarexx

No. I was diagnosed at nine. There are other people here who were diagnosed in their teens, twenties, thirties, forties. It happens a lot, and is most common for girls and women.

Posted 2 years ago

8 notes

Is there anyone out there who was diagnosed as a elementary-aged kid in the early to mid 2000s? What was the testing like? I'm feeling really paranoid that I may have been officially diagnosed as a kid, but my mother never told me. Does anyone know how I could find out without having to ask her?

Anonymous

Unfortunately, I was diagnosed in the mid-90s, and it sounds like things have changed a lot since then, so I personally can’t really help.

Any other Hedgies have some information on this?

Posted 2 years ago

4 notes

autism, actually autistic, actuallyautistic, diagnosis, ask, asks, mama hedgehog can't help this time,

Um hi. I was wondering if you could tell me what going nonverbal's like? I have times when I just can't get words together, and others when I can't regulate my volume. I'm working towards a diagnosis, but my psychiatrist tells me that it's not really worth pursuing because I don't have too much trouble (I'm diagnosed with OCD and agoraphobia, but it seems to match autism more). Thanks.

Anonymous

I’m not sure it’s precisely the same from person to person, but I do think it may be somewhat similar, at least.

For me (since I can only speak for myself; if other Hedgies want to talk about their own experiences with it, please do) I know what I want to say. The words are in my head just fine, but they will not come out of my mouth. They just won’t. At my last blood test, I managed to croak out the word “crochet” (they were considering if they could take the blood from my fingers instead, so I pointed to my left hand, and eventually got that one word out, which my husband at least understood) and I’m almost never able to do that. Of course, what was actually going through my head was “Please use my left hand, since I need my right hand more for practicing my crochet” but that just would not come out.

It might not express itself in quite that way for you, though.

What I do find interesting is that you mention trouble regulating volume, which is a common issue for autistics. I actually have pretty good control with that sort of thing and yet there are still times when it happens.

If this diagnosis is important to you, don’t let your psychiatrist dismiss it. They are not you. It’s easy for them to say, from the outside, that you don’t have too much trouble, but that’s for you to say, not them. After all, they only see you once in a while. You live in your head all the time.

Posted 2 years ago

8 notes

autism, actually autistic, actuallyautistic, diagnosis, mutism, ask, asks,

Is it possible that instead of having certain motions for different moods or situations like flapping when happy, or rocking when nervous, they vary with intensity of mood instead, like rocking when less extreme and flapping with more urgency?

Anonymous

I don’t see why not. Stimming seems to vary greatly from autistic to autistic. Most autistics I know talk about happy flapping, for example, but I almost never flap when happy. Usually it comes with nerves (though I’ve recently discovered that abject horror will make me flap too. I never knew that until I watched Once Upon a Time).

That your stims are related to the intensity of your mood rather than which mood is just your variation of something we all experience.

Posted 2 years ago

4 notes

autism, actually autistic, actuallyautistic, stims, stimming, ask, asks,

I recently found your blog and I find that I can relate to almost all of the submissions. I looked it up and I have a lot of the common signs of being autistic. I'm 16 and haven't been diagnosed with it, but I'm starting to wonder... Then again, it could just be my mild hypochondria kicking in... I still would like to bring it up with my parents/psych. Any tips?

vaguelywatermarksthesky

If you really relate to a lot of things here, and you’re really wondering, there’s nothing wrong with that. It is a good thing to research as much as you can, especially if you want to bring it up with your parents and/or psychiatrist.

If you do have some hypochondria, then it’s good if you have a firm grasp on why you feel this way before you bring it up. Don’t be afraid to write down the things you relate to before you talk to anyone about it, so you don’t forget what you want to say if you get flustered. I imagine with hypochondria, you could easily face people being dismissive of you about this, so organization is important. Do your best to make sure they understand you did a lot more than just glance at a list of symptoms.

Unfortunately, no matter who you are, an autism diagnosis is a subject that it can be very hard to get into with a lot of parents and psychiatrists. There’s a lot of ignorance about what autism even is. If they point out that you’re already sixteen, let them know that a lot of people are still diagnosed quite late in life. If they think autistic people aren’t capable of speaking, point out that autism is a spectrum with many different symptoms, and mutism is only one of them that not all of us have. Your best shot is to know as much as you can.

Even if they won’t listen, if you feel strongly about this, that’s okay. We will listen. There’s always support to be found here and AH and in the community in general.

Posted 2 years ago

7 notes

autism, actually autistic, actuallyautistic, advice, diagnosis, asks, ask,

Crawling Out from Under

I am still here. Still alive. I’ve just been struggling with depression a lot lately.

For a little while it seemed like I might be able to go off my depression meds. They weren’t helping that much and I thought maybe if I treated the fibro, that would be enough. Only the medicine change to treat the fibro didn’t work, and then I went off my depression meds, too. I kept trying to fight my low mood, because I didn’t want to accept that I needed to go back on meds. I’ve been on medication my entire life, literally, and I get so tired of it always hanging over me. The problems and the side effects and all of that.

Then something happened at the beginning of the week that sent me into a meltdown and I had no choice but to accept it. I’m on a new medication now, one that’s supposed to treat both fibro and depression, and I’m stabilizing somewhat.

I hope to get back to AH next week. For the weekend I’ll be closing the inbox, and reopening once I get it cleared out. As well, I have an idea for April this year, that I’ll be sharing soon, so stay tuned.

Posted 2 years ago

6 notes

autism, actually autistic, actuallyautistic, depression, fibromyalgia, fibro, autistic hedgehog lives!,