Why I won’t be lighting anything up blue

No, I won’t be wearing blue or celebrating autism “awareness” this April 2nd. No, I won’t be proudly displaying any puzzle pieces, blue or otherwise in my profile picture on social media. No, I will not myself use or in any way support the use of supposed “gold-standard” “autism” intervention, that first spread its toxic spores from Ivaar Lovaas. And no, I will certainly not be associated with a certain world-famous (infamous, rather) “advocacy” organization that is, in fact not so much advocacy but borderline abusive towards autistic people. Oh, and speaking of which, I will most definitely say “autistic people” and not “people with autism.”

‘How dare you?’ You ask. ‘You who call yourself a healthcare professional and disability advocate, how can you turn your back so cruelly on people suffering from autism? And what about their poor parents? The brave autism moms and dads who valiantly vlog the daily struggles they go through because of their child with autism and thus make millions of dollars from the viewership thereof? Can’t you support them?’

And I say…

‘Golly, I’m so glad you asked.

I shall now tell you, in the form of an enumerated list, why I won’t do each of those things. But before I do so, let me tell you the most important reason, the reason that is the bedrock for everything else to be built upon….

I won’t do any of those things because autistic people consider them harmful. Nice an succinct, innit? Now read the long version.

1. Blue and puzzle pieces

There’s some history behind the symbol and the color to unpack here. Simply put, the puzzle piece was chosen to represent this population because it conveyed a sense of incompleteness, as though an autistic person was missing some essential aspect of being a person. Blue was chosen because of the largely false belief that autism occurred more commonly in boys. We now know that autism is only *diagnosed* more commonly in boys because autistic girls tend to mask, that is, try to act “normal” to blend in, at high costs to their mental health.

2. Autism “awareness”

Autism needs acceptance, not awareness. It is most likely that autism has existed in humanity since the beginning of… well, humanity (read Neurotribes by Steve Silberman for an excellent and very readable history of autism). It is just another type of brain. The word awareness posits autism as something to be rooted out of society while acceptance conveys the exact opposite. Let’s be honest…humanity needs the autistic personality to progress.

3. The bEsT tHeRaPy fOr aUtIsM

You know the one I’m talking about. The one where people claim to magicians and ‘change people’s problem behaviors’ with a swish and a flick of their wands (and piles of data). Yes, that one. This one’s a big fish, so let’s see if I can put it across in small words. This particular therapy has the long-term goal of making autistic people “indistinguishable from their peers.” It works primarily on principles of reward and punishment, where when someone is rewarded for a behavior, they may tend to repeat it, and when someone is punished, they tend to not repeat it. It works. Of course it does. It certainly works, at the expense of systematically extinguishing every trace of autonomy a person has in the process. ‘Touch nose’, they say. If you touch it, you get a cookie. Yay, 1/1. ‘Touch nose’, they say. You don’t want to touch it. Oh no, 1/2. Cookie goes bye-bye. ‘Touch nose’, they say. That cookie was yours, and you want it back so you scream. ‘Attention-seeking behavior,’ they say. ‘Touch nose,’ they say. Ad infinitum. Oh and one more thing. This particular “treatment” was once very commonly applied to people exhibiting “sexually deviant behaviors.” Like, you know, homosexuality. And of course it worked. Heaven forbid their patients so much as thought about a sexual partner that was right for their orientation after that treatment. The final point. A lot of new studies with autistic adults show evidence of PTSD that can be traced to this “treatment” in their childhood. You know, PTSD? The thing hardened veterans get after years of war torture? That.

4. That one organization that claims to fundraise for Autism All. The. Time.

Again, you know the one I’m talking about. They’re probably the ones you’re wearing blue and peppering your social media with puzzles in honor of. Ah, those people. The thing is, again the problem is multi-fold. They don’t have autistic people in positions to be listened to in their organization (which is really ironic if you think about their name). They don’t respect the views and requests of the autistic public. Their funding doesn’t really cover things useful for autistic people, just more fundraising. Their information for parents of autistic children tells them to grieve for their ‘dead’ normal child. They have supported false cures, including dangerous things like bleach enemas. Yes, bleach enemas. The two words that shouldn’t go together. They release horrible ‘informative’ videos that tell people that autism is worse than pediatric aids and cancer combined, and a leading board member has, on video, and in front of her autistic child, talked about she’s often considered murder-suicide of herself and her autistic child, and only never went through with it for the sake of her non-autistic child. Let that sink in.

5. “People with Autism.”

Again, the easy answer is…because autistic people want to be called autistic people, not people with autism. They feel that they would actually rather like to be defined by their autism, and they are not actually ‘so much more’ than their autism, thankyouverymuch. Also, they say that if we need to keep saying ‘people with autism’ to remember that they are people first, autistic second, are we non-autistics as empathetic as we claim to be? They’ve got a point.

Okay, so after all that text, what should we be doing this April? There is only one answer, and it’s only four words long…

Listen to Autistic People.

Post-a-day for 21 days… Day 7

I’m back. With the word persuade. Now this one’s a funny one. I’m inclined to talk about how very difficult persuading people actually is. There was a science meme I saw somewhere in which two people are in conversation and one says that evidence shows that people don’t really change their mind about things even if legitimate sources are pointed out to them showing that they’re wrong. The second one disagrees, saying that people aren’t so bull-headed and certainly changed their mind in the face of reason. The first one points out two cited scientific sources proving their point. The second one still chooses to disagree.

It makes more sense in context, I suppose. But persuading people is hard. I rest my case, since I don’t really want to go to the trouble of persuading my audience now.

Post-a-day for 21 days… Day 6ish

Yup, I’m late. It was bound to happen at some point. But anyway, onto the word. Luckless.

Yes, I’m serious. It’s strangely coincidental. So what could I possibly say about lucklessness? Shall I talk about how the poor guest laborers we’ve been following finally reached their home in U.P.? Why is this luckless, you ask?

Because on reaching their home state these luckless people squatted like so much sacks of rice while they were sprayed down with disinfectant. Meanwhile, various high officials and posh disease carrying NRI’s escaped their luxurious hotel quarantines and complained about being ill treated. Or they bragged about how their government, unlike that of a certain neighboring country, had it all in hand.

Luckless, huh?

Post-a-day for 21 days… Day 5

Today’s word is slope. As my mind has been marinating in the current situation and implications thereof for almost a month now, I’m pretty sure I’m going to continue in that strain today.

But it’s been a slippery slope, hasn’t it? From a few vague mentions of a bat in China to a world wide pandemic, we’ve crossed yards and yards of snowy hill in our rickety little sleds in the blink of an eye…and we have no idea when we’ll hit the bottom, or what could possibly lay in wait for us there.

It’s also been a slippery slope from “oh, we’re all one world family” to “it’s all the chinkis’ fault” to “who asked all these uneducated migrant labourers to crowd around the bus stands? Don’t they know they have to sit in their nice homes with their oodles of food like responsible citizens? These illiterate people, no?”

Slippery slopes indeed.

Post-a-day for 21 days… Day 4

Today’s word for me lag. I have a hunch that the random word generator I downloaded isn’t quite as random as it makes itself out to be.

So, what’s lagging these days? Well… What isn’t? From internet networks (a popular video streaming service informs me that their videos will be played in standard definition due to higher load on data) to TV soaps (and how.), it’s like life’s come to a screeching brake halt that any driving instructor worth their salt would abhor.

You know who’s affected the most by this? The people without savings. Without life insurance. Without stocks of food in their cupboards that the bought last month on a whim. The people who live from day to day. A lag in their gears is incredibly difficult, if not impossible, to fix. And we as a country are apparently happy to just be watching old reruns on national TV channels and munching on the treats we have squirreled away in our pantries.

These people, meanwhile, walk hundreds of miles, on foot, through essential unpopulated wastelands of city roads, just to get from their home from the state they were erstwhile laboring in, and from which they have been uprooted with no money, no food, no shelter, and a deadly virus on their heels to boot. A deadly viruses which was welcomed home along with posh expatriates on special airline services.

The quarantine imposed by the government is but a hitch in these expatriates’ experiences, comparable to jetlag. For the ‘guest labourers’, named so by a certain state, the lag can cost them their lives.

Post-a-day for 21 days…. Day 3

I’ve taken the liberty of using a random word generator for this post. The word it gave me was ‘chagrin’, which seems rather apt. Considering. I just realized that the word has ‘grin’ right in it. It makes a twisted sort of sense, somehow. Of all the word relating to smiles, ‘grin’ is the one used in connotations like ‘grin and bear it’. Again, ‘grin and bear it’ is also incredibly apropos to the worldwide situation. Everyone’s trying to keep everyone’s spirits up, but the grins and ‘chilling at home!’ selfies are somewhat forced, aren’t they? Much to everyone’s chagrin, a lot of nations’ leaders aren’t doing much to combat the situation beyond telling people to ‘grin and bear it’ (see what I did there? :P)

I daresay ‘chagrin’ will be quite a common state of affairs for most people for a while yet.

Post-a-day for 21 days… Day 2

Apparently the curve is flattening. I think that’s a good thing?

And that’s one thing that this pandemic seems to highlight. People clearly need science. Somehow our school level (sometimes even college level) science doesn’t seem to cut it. There are still people talking about viruses running away from the sound of clanging pots and pans.

But why as a country are we so averse to science? Or have we been made averse to it? A young friend of mine (she’s been featured in my blog posts before) has just completed her secondary school exams (last exam was the day before the central board decided to postpone everything, now that’s what I call serendipitous) and is now considering career paths (well, not so much her yet but the rest of her family… she’s taking a well-deserved break) and here’s what’s driving them nuts: a career in computers, which is the general preference, seems to need the science stream at the higher secondary level, and the general public has built up the higher secondary level science stream as absolutely terrifying.

Which means my young friend is now biting her nails in apprehension over the start of school and her parents are wondering if they should just consider commerce stream to keep her from turning into a pressure cooker in lieu of a student.

But digression apart, we don’t really learn basic things like understanding basic statistics and related things like curves. Apart from those of the womanly variety, apparently.