Whose spectrum is it anyway?

There was another article in Spectrum Magazine recently that was critical of neurodiversity, as well as its advocates. As a full disclosure, I haven’t read it, but I’ve gathered the gist of it from the tweets I’ve seen over the past few days. So now I want to talk for a minute about the campaign against neurodiversity.

It occurs to me that the “War on Autism” (a term I used at least a year before this article was published) is no longer about the attitudes of ND activists, any more than it’s about the crab bucket mentality of anti-NDs. It’s gotten to the point now where anti-NDs not only troll and harass pro-NDs, drawing energy from their hatred of everything they don’t identify with; they tone-police NDs as well, to the tune of “how DARE you speak that way to parents who just want the best for their severely autistic kids!!!”

Um, guys… I had parents who thought they had my best interests at heart, too, when they complied with the school’s demand to throw me under an EEG when I was 11. It was just one more depressing episode in a kittenhood of hell and high water. Was it what I wanted? Uuuuuuggggghhhhh, for God’s sakes, NO. Was it what they wanted? Not sure about that either, but it’s what ended up happening because at my age I lacked the legal authority to decide these things for myself. (Portent of “To Siri With Love”, anyone?)

But was it what was best for me? In the long run, no. It was a waste of time, from the preparation to the actual test, and it made me feel like more of a useless burden than I already did.

This all comes back to the paradigm of Individual Preference.

A lot of allistics are always “buhhh you’re people with autism.” Most of us prefer “autistic person”, and the poll results are taking up so much cyberspace that there’s no more room for debate. A lot of us don’t want to be cured. And yet, some of us do.

(Now I won’t go into the ramifications of an actual medical cure being found, except to say that such a cure should also be left to individual preference — it should NOT be forced on anyone who doesn’t want it.)

For years we’ve tried to help other autists understand that they aren’t diseased or broken or disordered. Some of them, for whatever reason, can’t accept that. Anti-NDs have seized on their feelings to demonize pro-NDs, to make pro-NDs feel rotten to the core for imposing their views. But… now who’s doing the imposing?

What the bucket crabs fail to understand is, neurodiversity is not about dismissing the voices of high-support autistic people and their families. It’s about empowering all autistic people to contribute something to the world when their support needs are recognized and met.

I want to take this moment to enlighten distressed autists that they are free to make their own choices. They may not believe it because of ABA, or some other factor that shaped their minds to believe they were incapable of independent thought. But they can decide what they need. And this is the essence of “self-advocacy.” The term, indeed, is self-explanatory; each of us advocating for ourselves, our individual needs and desires (though preferably not our needs and desires for another person who doesn’t share them).

Like being ND? Wouldn’t give it up for anything? Want to try being NT? See if you like it any better? You do you.

I wonder what the autistic/autism communities would be like if we all respected each other’s preference and left each other in peace, and I am saddened to realize that since it’s not human nature to leave each other in peace, we’re trapped in an endless, vicious exchange of fire. But remember this: Autistic people have been attacked and bullied for everything from their stims to their passions to their self-presentation for as long as the condition has been recognized. We’re all tired of the dodecahedron of badgering that has only intensified of late.

All we can do is self-advocate, let the rest of creation know what our own individual needs, desires, and preferences are, and hope to whatever powers we believe in that someone cares enough to listen to them.

Advertisements

The Perils of Unconfirmation

In this evening’s #Autism101 lecture, we will examine why some children go undiagnosed throughout their childhood. (TW: Abuse.)

There could be a dozen reasons why autism goes undiagnosed in so many kids. Sure, we can say it has to do with race or gender or social order, but what specifically are we talking about when we toss it into one of those categories? It’s a lot easier to explain away such a complicated condition by attributing it to demographics that are already prone to prejudice.

But sometimes there’s a great deal more to it than that. 

Sometimes there are excessively long wait lists for confirmation; I’ve heard from some autists in the UK that they’ve been on wait lists for upwards of three years. And needless to say, stateside, where health care is just another for-profit big business that caters to economic elites, families simply can’t afford a referral or an evaluation on their own.

Sometimes autism simply gets misdiagnosed as ADHD or ASPD or some other disorder that happens to exhibit similar signs. Sometimes it doesn’t get diagnosed at all. I would be very interested in asking other autistic people why they think #ActuallyAutistic children aren’t identified until well into adulthood, but in the meantime, I can tell you one thing for certain.

Sometimes their parents simply don’t bother. I think I could have been officially identified as early as age 12 or 13, but the hoary, outdated old “children should be seen and not heard” parenting style prevailed on both sides of the family. I would act (or act out) like the autistic little kid that I was and all my parents could see was an obnoxious, recalcitrant little brat who needed to be spanked into submission.

(Aside: It’s chiefly due to this parenting style that I have made a conscious choice never to have kittens.)

We can only imagine now how my life would have changed if my parents could have been bothered to have me screened for ANY kind of neurodivergence.

When I finally grew up and read that article about Asperger’s that made me go “OH”, I approached the ‘rents about it. My mom was like “well, we still didn’t understand it when you were little, and we didn’t want you to feel like you were broken. Oh, and you were grown up by the time it was recognized.” Later on I came to realize that that was mom-speak for “we treated you horribly and we don’t want to admit it so we’ll make a bunch of excuses instead.” I thought more and more about this after learning from my best friend that she was looking to get her 4-year-old screened for neurodivergences, due to his increasing outbursts of violence. (As it turned out, external factors were causing them; once she enrolled him in a different school for kindergarten, he suddenly became much, much more harmonious.)

A child who is not behaving the way you want them to is not necessarily a born psychopath, and there are better ways to find out than by testing their limits. Watch their behavior closely — but if it’s adverse, for the love of God do not try to beat it out of them!!! No matter what the condition is, physical discipline against a child only makes matters worse. They don’t learn anything from it except hate.

(And if they’re not behaving exactly the way you want them to, but are still behaving acceptably… well, maybe they’re not the problem.)

Screenings are important; paying attention to kids’ needs is important; not forcing them to fit a mold they weren’t made for is REALLY important. For your Autism 101 homework assignment, find out what their story is so you can get a better idea of what they need.

And. Don’t. Hit. Them.

Web of Lies

First of all, yes — I know I haven’t posted since last summer. It’s a much longer story than I have time to tell at this juncture, but suffice it to say that it hardly calls for anyone to dump a bucket of cold water on me.

Second, during my absence, I continued to lurk on Twitter, until I saw yet another close friend being picked on and kicked around by one of the most notorious gaslighters in the community. That’s what caused me to de-lurk over there, but a much more severe and widespread gaslighting problem has incited me to de-lurk here as well.

I want to tell you about a web of lies — an autistic, dark one.

That’s what they call themselves, the “Autistic Dark Web.” They have a very narrow, twisted, convoluted view of autism and what it “should” be like. That is, they believe, as ableists do, that autism must be cured, wiped out, destroyed, eradicated, stopped, eugenicized out of existence. Unfortunately, their very approach to that goal serves to discredit them: they don’t take any real action to eradicate autism.

All they do is troll neurodiversity activists on social media.

One of them distinguished himself as an argumentative windbag within days of making his presence known. More recently, another repeatedly attacked a teenage girl who’s less than half his age simply because she had a positive attitude, and God forbid a new generation of neurodiversity activists should gain prominence. Oh dear no, we mustn’t have any more positivity about autism, no sirree!!! Curse the autism, we hates it, we hates it forever, gollum, gollum!!! And those horrible neurodiversity types are destroying our dominant narrative!!! D:

I use the word “dominant” on purpose because the ADW is principally made up of white males — need I say more? — and their primary targets are women. Here’s what they do — they attack and troll, knowing that autistic people have been attacked, bullied, and trolled their whole lives and are damned sick and tired of it. They know we’ll want to stand up for ourselves. So they even spout outright lies about autism, such as a recent criticism of voluntary stimming, and the people who spend so much time and effort putting a positive spin on it. So a negative reaction from those people is nearly assured; and to make their case against neurodiversity — even publish an article in The Spectator about it — all they have to do is point out that negative reaction that they’ve managed to provoke.

The trouble is that they seem to have forgotten how they’ve gone about that provocation.

Now I have to disclose fully that I really do not understand what the ADW’s problem is, why they’ve gone about it this way. Do they have bad memories of being autistic youngsters? Being pushed around? Being hated by everyone from parent to peer? Do they think that just because they’ve had bad experiences, nobody else could possibly have had good ones, and so anyone who has a positive attitude must be summarily attacked and shut down? And if that is their standpoint, just how much does white male privilege have to do with this attitude, as well as their misogynistic focus?

In any case, instead of trying to be supportive of other autistic people as the rest of us have, they’ve become so mired in self-pity (and by most appearances, involuntary celibacy) that they’ve resorted to not only online trolling, but playing on the emotions of frustrated parents to mislead them, demonize autistic activists and dismiss neurodiversity as a losing proposition. And if suffering from autism stigmas is at the root of the problem, their actions have totally deprived them of any sympathy from the autistic community.

They’ll prod, they’ll gaslight, they’ll insult, they’ll bully, and they’ll happily point out to anyone who’s gullible enough to listen to them the reactions they’ve been able to elicit, but they’ll never show anyone how they elicited it — a paradigm of the pot calling the kettle black.

That part, neurodiverse fellows and allies, is up to us.

(Now watch them try to leave discrediting comments and share this post with their autistic-woman-hating buddies, attacking my self-presentation as well as my statements. At least tell me what your problem is, guys — just, try and make it something I can accept.)

Environmental Masking

K, so. As #TakeTheMaskOff draws to a close, I want to talk about certain masks for certain environments.

Autism Unmasked

Ai-yi-yi, it’s been too long since I’ve posted!! Much has been going on, including moving to a new home (not entirely of my own volition), and preparing for a highly important social media campaign that kicks off today: #TakeTheMaskOff.

If you haven’t been following it, or flat-out have no idea what it is, it’s a campaign about autistic “masking,” or pretending to be someone you really aren’t for the sake of surviving in a hostile world, a world that would just as soon see you destroyed as stand by and watch you be driven mad by a hate-mongering society. A pawful of autism advocates gave us a sneak peek in this video; today the voices are no longer silent.

I didn’t even realize until now how long and thickly I’ve been masking since late kittenhood.

Getting Our Hans Dirty

I know that for this entry I’m going to get unfollowed, blocked, subtweeted, and all those other lovely things tweeters do when they disagree with someone. Nevertheless, this is my point of view. After the past few months of tangling victoriously with gamer trolls and ableist parents (to say nothing of a nervous breakdown and suicidal ideation at the end of last month), I’d like to see you try and shut me up.

As you may have gathered from the title, this is in regard to a recently published article about Dr. Hans Asperger and the revelation that he allowed autistic children to be exterminated by the Nazis. (Please note: I’ve linked to five different articles in that sentence.) It goes without saying that, this month of all months, when we’re already fighting fang and claw against the bad rap we’re getting from Autism Speaks-for-itself and other ableist orgs, this is an awfully upsetting revelation for the autistic community. But can I do what a superhero does best, and offer up some hope for the future?

Here’s what I’ve noticed in reading more about this.

[Reblog] What I Want Autism Parents To Know

A guest blog I did for Not An Autism Mom.

What I Want Autism Parents to Know, as an Actually Autistic Adult

Meltdown or tantrum?

There is a difference — albeit one that a lot of people can’t see. So I posed the question on Twitter, noting a few times that I understand what causes a meltdown vs. a tantrum. Meltdowns happen when sensory overload, overstimulation, and mental stress have overwhelmed a person and they look like they’re seriously about to explode. Tantrums, on the other paw, happen when a person (particularly a person under the age of, say, six or seven) doesn’t get what they want, and they act out to try and coerce the withholding party to let them have their way.

But how do you differentiate one from the other? What do you look for? How do you, looking at a person who’s acting like they’re about to combust spontaneously, tell whether they’re having a genuine meltdown or just throwing a temper tantrum?

Let’s see what a dozen or so folks in the Twitterverse had to say.

[Reblog] Open Letter To Whitney Ellenby: You’re Not An Autistic Ambassador. You’re an Autistic Abuser | #ElmoMom #AutisticMomsRise

via Open Letter To Whitney Ellenby: You’re Not An Autistic Ambassador. You’re an Autistic Abuser | #ElmoMom #AutisticMomsRise

Power Failures

So far it’s been a momentous weekend. Autism Speaks-for-itself, in speaking for itself, actually spoke against Katie Wright — the very same member of the royal family whose son’s existence catalyzed the creation of that crowd — for some of her anti-autistic sentiments. As of the very next day, the “Autism Epidemic” of which I last blogged may not be quite dead yet, but it’s mortally wounded by the expulsion of Steve Lebsock from the Colorado House of Representatives thanks to his repeated sexual-harassment offenses. And as a result of sharing the article, to my amazement I got a follow on Twitter from none other than Steve Silberman — celebrated author of “NeuroTribes”!!! =O You should have seen me bouncing and flailing and stimming over THAT one.

Nonetheless, not all the news has been as uplifting. There’s a new subspecies of neurotypical parent in town — the “autism martyr mom.” To wit: Whitney Ellenby and her book “Autism Uncensored”, her horrifying tale of scarring her son for life by forcing him to attend a puppet show, and then patting herself on the back because she Bravely Wiped Out his Fear of Indoor Environments.

I wonder what other parts of his psyche she wiped out while she was at it.