Playing the Autistic Victim Card.

I’ve recently come across a few autistics who have problematic views or use problematic language, such as discussing autistic “symptoms” or viewing autism as a disorder. Some of these people have pretty big platforms, such as popular YouTube channels, and so reach a large audience, mainly of NT parents who may be influenced, for the worse, by these views.

When they are called out on their language or their views, their reaction seems to be one of crying “bully” or “troll” or “censorship”. They play the victim, and sometimes go so far as to “set” their followers on the person who dared criticise them. They misrepresent the very valid criticism and claim they don’t understand why they are being criticized. Even though it’s often not the first, second or even third time such criticism has been leveled at them by various autistic advocates.

They also often cry about how they’d “understand” if it were an NT person criticizing them, but a “fellow autistic”? What they don’t understand is that being autistic doesn’t give you membership of a club where you are beyond reproach. In fact, I’d go so far as to say that it’s the duty of your fellow autistics to rein you in. To go “collect our own” as it were. We really do have to be watchful of our fellow autistic advocates, and make sure they are not spreading language and opinions that ultimately lead to our harm.

I know it’s hard to hear that your views and words are harming others. But pointing this out is not an attack. I firmly believe in the saying “when you know better, you do better”. So, if someone criticizes you, please listen with an open mind and a clear head. There is no shame in admitting you were wrong and moving forward having learnt something. I’ve done it myself, many times. In fact, I’d like to thank everyone who took the time to point out where I was going wrong, and to show me how wrong things like functioning labels and “Aspie superiority” are. And being called out on my views didn’t make me a victim. It made me a better advocate.

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Autism Defines Me

I keep coming across statements such as “don’t let autism define you”, or that gem from parents who don’t mention any other facts about their child except their diagnosis and then add “but autism doesn’t define them”. So I thought I’d write up a few thoughts I had on this, thoughts it seems are common enough amongst the autistic people I mentioned this to.

Where to start? First I did what I often do when examining a statement. I check the literal definition of some of the key terms. In this case it’s “define”. What does it mean to let something define you?

Obviously I can ignore the definition relating to computing. And possibly the “set forth the meaning of (something, such as a word)” one. And maybe the “to make distinct, clear, or detailed especially in outline”.

So, that leaves us with “to determine or identify the essential qualities or meaning of”, “to fix or mark the limits of” and “characterize, distinguish”. Does autism (or rather, being autistic) define me in any of these ways?

Does being autistic determine or identify the essential qualities or meaning of being me? Well, yes, I think it does. What does it mean to be me? What are my “essential qualities”? If I were to strip everything back, I’d say most people’s essential qualities are things like how they eat, how they breathe, how they move, how they sense things, how they sleep, how they behave, how they react to things, how they think. And being autistic does determine or identify how I do these things. Hell, it even determines how I shit and fuck, if we want to get to the most “essential” of essential qualities. Joking aside, there isn’t a single thing about me that isn’t determined by me being autistic.

Which leads me rather nicely to the second definition “to fix or mark the limits of”. As we saw, every single thing I do is determined by my being autistic. But it’s not fixed or the limits aren’t marked by my being autistic. Maybe that’s the definition people mean by not being “defined” by autism? Being autistic does not mark my limits. Or rather, it does not mark all of them. I am limited by being autistic only in so far as society limits me by not accommodating my autistic way of being. So “don’t let autism limit you” might be the sentiment they were after, if by “define” they meant “mark my limits” but it still isn’t right. It’s not something I “let” as much as something I have no real control over. I cannot change how society treats autistics, at least not by myself.

So, how about to “characterize, distinguish”? Well, obviously being autistic distinguishes me from non-autistics. Same way being of a non-binary gender distinguishes me from binary gendered folk. Or being Irish and Turkish distinguishes me from people who aren’t. Or being short distinguishes me from tall people. Or any number of other factors that make up my identity as a whole. And so, being autistic does define me when I interact with non-autistic people. It “others” me in a non-autistic world, and binds me to other autistic people. And again, it’s not me “letting” this happen. If by “let” you mean “allow”, which implies a choice. It is outside my control as I’ll never be non-autistic.

Getting back to the original sentence “Don’t let autism define you”. I’ve examined two of the five words it contains, “define” and “let”. How about the word “autism” itself? What exactly is autism? Academic books have been written on the subject. It is beyond the scope of this blog post to try to define autism. Let’s just say it’s a lot more than just a set of diagnostic criteria. But in the context of the sentence I’m examining, it’s implied that it’s a bad thing. Something I shouldn’t allow myself to be defined by. Something to distance myself from. Which I’m sure you realise is a ridiculous thing. Autism is not inherently good or bad. It just is. Like every other thing that goes into making a human, being autistic (or not) has good sides and bad sides.

And then there’s the word “don’t”. I’m sure you’ll agree that it’s pretty rude of anyone to try and order me, or anyone, around like this. To be perfectly honest, I never react well to being told “don’t”. Who does?

Finally there’s the word “you”. I get to decide what does or doesn’t define me. You do you. It is not for anyone other than me to decide who I am, or how I should define myself. In the same way, parents of autistic children don’t get to decide who their children are or how they identify. Identities are too personal to be given to, or removed from, anyone but the person themselves.

Hopefully I’ve shown how “Don’t let autism define you” is not a sentence I agree with. Hopefully it’s one I won’t be hearing so often in the future.

Pokemon No?!

Like a lot of autistic people, I really like Pokemon. I was planning on writing a long post about my love of Pokemon. This is not that post. This post is about Pokemon Go and an upsetting development I just found out about.

Autism Speaks is an “autism charity” that is hated by most autistics. A recent online poll found that 98% of the autistic respondents agreed that it’s actually a hate group. They are a gigantic charity that raises millions of dollars annually, yet only 4% of this money goes towards directly supporting autistic people and their families. The rest goes towards their wages, admin costs, and research into cures and genetics.

They have also had some awful campaigns, basically wanting to rid the world of autism, and therefore autistics. They have condoned the murder of autistic children by their parents. There are so many other examples of how bad they are that actually listing everything would take up this whole blog post. Instead, if you want to know more, I suggest you Google “boycott Autism Speaks”. (Update: This is a great resource explaining the issues.)

What has this to do with Pokemon Go? Well, Niantic, one of the lead developers of the game, are taking part in an event to raise money for Autism Speaks. They will even have a “Niantic Kids” area at it, with activities such as face painting and a climbing wall. Sounds like a great time for any kids that go along. But it’s ruined due to the Autism Speaks connection.

Naturally, a lot of autistics are furious about the whole thing. So many of us are big fans of the game. We are the hardcore fans who have stayed playing the game after all the hype died down. It’s a game that gets us out of the house, gets us exercise and helps us socialize. And it’s Pokemon. Need I say more?

A lot of autistic advocates and their allies seem to have taken to twitter to voice their ire. Some have written emails to Niantic and also to the PR company in charge of the whole thing. Some have called for a complete boycott of the game. Others, myself included, have decided that they will still play game but no longer make in-app purchases.

I really hope this gets sorted out. So many companies, in their efforts to be seen to be supporting the autism community, support Autism Speaks because they have not done their research and don’t realise it’s a hate group. They initially mean well and their only crime is one of ignorance. How they react when they are called out on it is what I will judge them on. Some companies have doubled down, spoken over autistic people and crossed the line from ignorance to meanness. And they get added to the list of companies to boycott. I really really hope Niantic doesn’t get added to that list. I suppose I’ll know soon enough if they do.

Random aches and mystery pains.

Right now my left ankle is throbbing. I did not twist it, sprain it, or walk “funny” on it. In fact, I was just sitting quietly on the sofa when I suddenly felt like someone had stabbed it.

Add to this the pain on the left side of my face. This one has been puzzling me for weeks. I cannot tell if it’s a toothache, an earache, jaw pain, eye strain or a headache. Just a generalized dull ache that’s been bugging me.

Of course, there’s also my neck and shoulder pain. Plus a random ache down my left arm. (In case you’re seeing a pattern, my left side has always hurt more than my right and I’ve never figured out why).

Again, I haven’t “done” anything that would cause such pain. Been taking it easy actually. And….ouch, my wrist now hurts. My left one again, so not from typing, which I do exclusively with my right index finger. (Yup, I’m a one-finger typist).

None of these pains are excruciating. I will not be seeing a doctor about them. They are quite painful nonetheless, especially when they start to add up like this. It seems some part of my aches at all times. Exactly which part is usually quite random.

So, here I sit, feeling like I’ve been beaten up or survived some traumatic ordeal. When all I’ve been doing is just sitting here or quietly doing a few chores. And tomorrow no doubt the pains will have shifted elsewhere. My pain is a moveable feast!

Mast Cell Disease Awareness Day

I just found out that today is the very first annual Mast Cell Disease Awareness Day. The term Mast Cell Diseases covers both Mastocytosis and Mast Cell Activation Syndrome.

I found out about today through this post over at The Zebra Pit. It contains good resources about the conditions. My own first foray into writing about MCAS coincidentally occurred just yesterday. I’m sure I’ll be writing about the subject a lot more in the future, as it’s so common amongst the EDS community.

That’s all I have for now as I really wasn’t planning on writing a post today but felt I had to mark the day somehow.

A “mystery” rash?

So, an EDSer (person with EDS) goes to their doctor to get a rash checked out. They just woke up the previous day with it. It’s not itchy, it doesn’t hurt, they don’t have a fever or feel unwell. Or at least more unwell than usual. But no harm asking their doctor about it.

The doctor notices that while most of the rash is of the “blanching” kind, a few smaller spots are “non-blanching”. That being a red flag for septicemia, they get told to go to the Emergency Department of the local hospital ASAP.

Once there, they wait around all day, as it has been determined that the rash probably is not life threatening, but they need to do blood tests to make sure. They are seen by several different doctors as each needs to confer with their colleagues as they really haven’t a clue what the rash could be. They endure boredom, frustration and a huge amount of stress.

Finally, the blood tests confirm that there’s no immediate risk to life, so they are sent home. They are told that it’s “probably a viral rash” despite absolutely no signs of a viral infection. And that only a dermatologist could tell for sure what it was anyway. That it will probably just clear up on its own but to come back if their health worsens and they are concerned.

So….I wonder if any of my readers can guess what I think the rash actually is? I bet those of you who have Ehlers Danlos Syndrome probably guessed immediately.

Although the main doctor in the ED knew enough about EDS to ask “which type?”, they also thought the types were still numbered and that there were only four types. If she had known more about EDS, she might have known that a common co-occurring yet under-diagnosed condition is Mast Cell Activation Syndrome. And a common symptom of MCAS is….mysterious rashes that appear “out of nowhere”. Or, rather, the trigger for the MACS flare-up that lead to the rash can be very subtle.

Other clues that MCAS was involved…the patient’s eyes were faintly red, their lips were swollen, cracked and very red. This person also has a history of facial flushing, heat intolerance, and various other non-dermatological symptoms.

Understanding of MCAS is still in its infancy. It cannot be diagnosed here in Ireland, or even definitively in the UK (though, as I understand, they can give a dx of “highly probable” there) as the necessary blood and urine tests are only really available in the US.

In the end, the ED was right to discharge the patient. Staying in the hospital any longer would have been completely unnecessary. However, their diagnosis of a “viral rash” was not convincing.

So, if you have EDS and a mysterious rash, it’s wise to go get it checked out to rule out anything serious. But it might also be an idea to look up MCAS if you are not familiar with it. It’s incredibly common for EDSers to have it. I have my own theory as to why, but that’s a subject for a different post.

Images of Autism

I often use the Canva app to add images to my blog. I wanted one of the Rainbow Infinity Autism sign, like this one:

But while I found plenty of rainbows and quite a few infinity signs in various colours, there wasn’t a single image even remotely close to the one above.

So, next I did a search for “autism”. You can see just some of the results below. I stopped taking screenshots less than halfway along. I’m sure I don’t need to explain to any of you why so many of these images are problematic. I’m not saying every single image is problematic, but too many are. It’s so disappointing to see, but not at all surprising.

I wonder if I should write to the developers of Canva and see if they’ll listen. No energy right now to tackle this, but something to add to my to-do list. I’m sure it’s not just a problem with Canva, but with the whole “stock image” industry.