Hey everyone. No recipe here, and not a light subject either, but please read, and amplify this. We need help.
“Where’s Carly?” is a question that I’ve been asking for over a year now, along with many others. At this point, many of us are fearing the worst for her, and something needs to be done.
Carly Fleischmann is the 25 year old non-verbal autistic woman behind “Carly’s Voice”. You might know her from the media coverage she’s gotten over interviewing people like Channing Tatum, or for the “Carly’s Voice” book that she wrote with her dad.
She is beloved by the autistic community.
Now – full disclaimer – I didn’t see a few of the posts that I’m going to be referring to as they happened, so I’m piecing together what I’ve heard from those who had, to get the story out there.
In early 2019, Carly posted on Facebook to say that she had been molested by her father’s boyfriend, and that her father wasn’t being supportive of her in the aftermath of that. (Here’s an article about that, including a screen shot of the post. I’ve included another screen shot of the same post at the bottom of this blog entry.)
A lot of people were VERY concerned – many have said that the tone and content of the post led them to believe she was in immediate danger.
The post(s) disappeared – along with her personal FB profile – and was quickly followed up with a post to her public page on February 2, 2019:
“I took down my old post bc people were threatening my families life. They put my address online that made me unsafe. I have started working on making my life a safer place. My parents have heard my voice. They will listen to words to keep me safe. Thank you for believing my words. I am safe.”
Two days later, a new post was made on her Facebook page. It has since been deleted, but a truncated version remains on her Twitter account:
“THIS IS AN ADMINISTRATOR OF CARLY’S ACCOUNT (NOT CARLY). THIS ACCOUNT WAS HACKED. THE LAST VERIFIABLE POST BY CARLY WAS ON MAY 30, 2018. WE HAVE LOCKED DOWN THE ACCOUNT. CARLY IS SAFE AND WELL – BUT WAS TAKING A…”
… and that’s the last the world heard from Carly (If the followup posts were indeed Carly – MANY of us have our doubts) , on any of her publicly facing social media accounts, and in the media.
To add to all of that, both the father (Arthur) and the brother (Matthew) have been presenting conflicting information:
The screen capture on the left shows the father’s reply to her post about being sexually assaulted by her father’s boyfriend. The image on the right shows the brother claiming that her account really was hacked.
If the post about being sexually assaulted was a hack, why would her father respond in such a way? That is not the way someone who has *just* learned of such an allegation would respond, that is the response of someone that’s already been gaslighting a victim over the allegation would respond. If there was no assault and the account truly was hacked, ANY father would have responded in a very different way.
… so why is the brother claiming a hack? What exactly is the family trying to cover up? WHERE’S CARLY?
It’s been well over a year since this vulnerable abuse survivor spoke out and was silenced. Asking around the community, not even people who knew her personally have heard from her, or been able to make contact.
For the past year, community members have been asking about her whereabouts, for confirmation that she’s OK, etc – to absolute radio silence. (Check out the replies to the “HACKED!” tweet for some examples)
There have been posts made by people, saying that people claiming to be Carly’s family have asked them – autistics online – to remove any posts asking if Carly is OK. This has been going on for more than a year now.
Also, the current pinned post on Carly’s page, from 2018 (You can view it here) starts out like this:
Presumably that’s not a “hacked post”, as it’s been up this whole time.
SO I ask again – Where’s Carly?!
Frankly, I’m tired of asking – and seeing the community ask – to learn nothing. I’m tired of worrying that we’re going to see her name pop up on Disability Day Of Mourning – both 2019 and 2020, I scanned the list of new murder victims, dreading seeing her name.
(Note: Statistically, the greatest threat to the life of the average autistic person tends to be their caregivers. This is why we not only have a disability day of mourning – that we have enough of our own murdered by their caregivers to necessitate such an observation day! – but also why the average lifespan of an autistic person is 35 years old. Think about that!)
More needs to be done. I’m putting this out there now: Spread the word. If you know anyone involved with the Toronto Police – or any other organization that can check in on her… please get them involved.
Also: Due to the nature of Carly’s communication – and the suspicious circumstances surrounding her disappearance from social media… please trust only visual communication, either in person or by video. There have been multiple instances now of posts claiming to be Carly, that didn’t “sound” like her. Given that it appears her father wanted her silenced… be sure that “Carly” is actually Carly, and not someone speaking on her behalf. Please and thank you!
Here’s what we know:
Location: Toronto (?) or Greater Toronto Area
Father’s Name: Arthur Fleischmann
Older brother’s Name: Matthew
Mother’s Name: Tammy Starr (According to Twitter)
Note: For some reason, the mother has tagged Carly’s Twitter account as recently as April 2020, though nothing has posted to that account since February 2019.
I’m not an investigator. I have no idea how to look into any of this, or how to get results. I’m just hoping to use my platform for good, to amplify any chance that we’ll find her.
I hope she’s OK. I hope she’s out of danger, no longer being molested, and allowed to communicate in some way, even if not with the community that cares about her and is very concerned for her well being.
Thanks in advance for any help you can provide.
Links to My Previous Posts on Autism
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I’ve said it before, I’ll say it again: This whole pandemic situation has really separated the introverts from the extroverts, across my social media feeds. It’s actually been sort of interesting to see people that I assumed to be introverts come out as extroverts, and vice versa.
As an introvert myself, I – as well as many of my fellow autistics – am actually pretty happy to engage in social isolation. We’re experts at “You don’t have to be in the same room as someone to be social with them!”, after all.
For our part, we have everything we need, now, so I’m holed up with my husband, happily puttering around on projects. We have no social obligations, have complete control over our environment at all times, and it’s pretty chill.
Of course, it’s easy for me to say “We all need to do our part and STAY HOME”, but I do realize that such a proposition is kind of scary to people who don’t have a lifetime of experience, here. So, I put together this list of suggestions and tips on how to not survive this, but THRIVE. This is the mother of all staycations, after all!
In no particular order:
– “Kung Fury” exists, and you can watch it on Youtube, here. This movie is not only a must-see on its own, but it has a sequel coming out later this year! Best get ready now, right?
– The Metropolitan Opera is doing a nightly – and FREE – live stream of different operas! They have the first week’s worth scheduled, and plan to continue until they’re able to reopen. Each new presentation goes live at 7:30 pm (Eastern, I think?), and stays online til 3:30pm the next day. We’ve been streaming it through their app on our Amazon Firestick, but they offer a few more options, as well. See here for their announcement.
Last night, we watched “Carmen” – it was my husband’s first exposure to the opera, outside of knowing “Every single figure skater EVER ends up skating to Carmen at some point”. Fabulous!
– Explore a Museum! Google has teamed up with 500 museums to post collections online, and/or offer virtual tours. Click here for the listing of collections to view, or here for an article listing 12 with virtual tours.
– Clean your house. Sure, it’s not necessarily fun… but there’s always a lot to do, right? Think about all those lists of what you should do every 6 months, or year, or whatever. When’s the last time you flipped your mattress, cleaned light fixtures and base boards, or laundered your curtains?
– Organize your house! Think about all those organization projects that you haven’t had time for. Did you move in 5 years ago and never tackled unpacking the last of your boxes? Are your books shelved all willy-nilly? Is your spice collection NOT in alphabetical order? This is exciting stuff to do – and imagine how awesome it’ll be to live in a house with everything organized!
– On that note, tackle the projects you’ve been neglecting. I have a closet with a folding door that doesn’t close all the way, one of my cats is OBSESSED with it, and it drives my nuts. Yesterday, my husband finally got around to installing a little hook to keep it shut. Life is good! We all have lists of things we’ve been meaning to get around to FOREVER.
I’m not saying the whole time needs to be productive, but … time is a gift. Picking away at repair lists is not only a great way to kill some time, it will leave you feeling accomplished, which is a great morale booster – something we could all use right now.
– On THAT note… learn a new skill! Does your to do list have some kind of relatively minor task that you don’t know how to do? Head to youtube and expand your skillset!
I remember feeling so frustrated and helpless after our tornado… until the day I decided to demolish the bathroom, by myself. I watched some videos, googled a bit, and went to it. It was great fun, and I felt SOO good afterwards, it really carried me through. HERE is a post I wrote about that day.
My husband would like to add that learning to change your oil is a great way to get started, and ends up saving you a lot of money. That’s where he started learning handyman stuff, and he’s gone on to keep our cars under repair at all times (I haven’t gone to a mechanic in 14 years!), build us a kitchen, and more.
Maybe you’ve always wanted to learn to knit, or sew, or crochet, or fix a clogged drain. Do the thing!
– Video conferencing is a thing, and can be used for more that just chatting. Play games with a friend, anywhere in the world. Battleship, Chess, whatever. Get creative! If you have multiple people in households, try long distance video charades!
Again: You don’t need to be in the same room as someone, to be social!
– Start a Pandemic Diary. Whether digital or handwritten, it’s good to get your thoughts down, to look back on someday… or pass along to future generations. It’s something I wish I’d done earlier, during the tornado. I’ve started one for the pandemic. Just a few thoughts every day on what we’ve done, any major events in the news, etc. It doesn’t have to be heavy, and I’m not personally keeping track of any of the numbers… just my own personal thoughts.
And hey, if you’re one of those people who do the whole “Bullet Journal” thing, think of how extra you can leave YOUR record of this, for people in the future. None of the accounts of previous pandemics involved glitter markers and stickers, after all!
– Plant something! For those of us in the northern hemisphere, this is actually a great time to get seedlings started, clear away overgrowth, etc. And hey, depending on what happens with regards to food supply / shipping, etc – it could be a *really* good idea later! Personally,yesterday I planted a bunch of herbs… and will start some veggies, when I work up the desire to get into the ACTUAL dirt. (I love these little instant peat pods, you can do the gardening without getting super grimy!)
– Do food challenges, either with yourself, against the people in your house, or with friends online. Pick a couple ingredients and/or a piece of equipment that everyone involved has, and see what you can come up with, with just what you have in your house. I bet people could come up with wild ways to use canned beans, if looking at it more like a cooking show challenge, than quarantine drudgery! Also: Would be a fun entry in your quarantine diary!
– Find new ways of working out, if you’re able to and so inclined. A lot of us found ourselves without gyms this week… so make your own gym at home, get creative with it. No weights? Canned food, bottled water, etc can work. No more cardio class? Browse Youtube for all kinds of online fitness classes. No jump rope? Maybe you have some heavy enough twine or rope that would work – cut off an appropriate length, use some duct tape to create a smoother handle for a few inches on each end. Maybe this is the time you take up hiking, or explore the walking trails in your area. Just stay a few metres away from others, and you’ll be good.
– For my fellow figure skaters our there: Get to work on your flexibility! You could return to the ice with a killer spiral, maybe even the spread eagle you’ve always wanted. Now is the time to work on cranky muscles without worry about how it’ll screw with your session tomorrow. Pro tip: Ankle weights (Which you can get on Amazon, below!) are KEY to a great spiral – it’s not just about flexibility, it’s about strength… especially as skates are heavier than the running shoes you do off ice in!
Do some work on plyometrics, and your jumps will improve when you finally get back on the ice. Seriously, you can add a couple inches in height, with a bit of work. Let’s use this time to really BRING IT, next season!
– While a lot of my tips have been about catching up, you could use the time to get ahead, also. Organize your Christmas card / gift list – or design your holiday cards – for example. Take a look at your calendar and see what you’ve got coming up in the next 8-12 months or so – is there anything to tackle now? Remember, when life returns to normal, most of us will be catching up on things we couldn’t do during this time…. so a little pre-planning now will free up your time for after this period.
– Long distance viewing parties. Pick a movie that friends have access to, start up a thread on Facebook or whatever, and all start watching – and chatting – at the same time. The cheezier the movie, the better.
– Hold a photo shoot for your cats, kids, or self. Go serious – maybe get that perfect profile pic you’ve been wanting – or ridiculous… just have fun. Also, if you do take photos of your pets, be sure to share… especially if costumes are involved!
– If you do end up having to get out for some groceries, remember: Indian and Asian grocery stores have the BEST snacks. Trust me.
– On a totally self serving note, if you’ve made some recipes from this site before, consider leaving a review on that page! I’ve been working hard to convert past recipes over to a new format to help with SEO, and – with the huge disruption to income right now – a few reviews go a long way to helping me out, long term!
All converted recipes have a stars review option just over the comments section. If the recipe you want to review doesn’t have the option, let me know which recipe it is, and I’ll bump it up on the conversion line.
Please and thank you 🙂
This is getting a bit long, so I’ll cut it off here. Did I miss anything? What are YOU occupying your time with, these days?
Links to My Previous Posts on Autism
If you’ve been following my social media for the past week or two, you probably know that I went to protest the premiere of VAXXED 2 in Toronto this past weekend.
… and, if you were following my social media a few years ago, you may remember that I went to a VAXXED event in Minneapolis. It was absolutely horrifying, and I ended up doxxed and harassed by those associated with the event, as well as the fans they sicced on me.
Between some discussions I had at the protest, and a subsequent media interview, it’s become quite apparent to me that a lot of people are missing some pretty important knowledge of history. I’ve thought long and hard about it, and I think it’s time to disseminate some education here.
Buckle up, kids. We’re going to talk about Nazis.
First, a couple of caveats:
For one, I want to state up front that I am talking about actual Nazis. This is not Godwin, this is not “people who disagree with me”, this is an important part of history that is often glossed over or completely avoided when talking about WWII and the Holocaust. Also: it is ABSOLUTELY pertinent to any discussion as to why VAXXED – and many autism orgs / fundraisers / etc are super problematic.
Secondly: I am posting this, fully aware that I’ll probably end up doxxed and harassed by those involved, once again. If you are reading this now and firing up an angry comment or email to me, or post about this… please stop, finish reading, and think about it before you do. Ask why an actual history lesson – and the very real parallels to current life – would trigger you to harass a woman in the very marginalized group being affected. Ask yourself, realistically … WHO would you have been, back in the mid-late 1930s, knowing everything that happened down the road.
Third: People have been talking about “Freedom of Speech” a lot when it comes to VAXXED. The thing is, not all speech is protected. Ironically – as we’re discussing a movie – one of the most popular examples of speech that isn’t protected involves a movie theatre. From both a public health issue perspective (Preventable diseases coming back. I don’t know about you, but I would certainly like to avoid an iron lung if possible!), AND a historical perspective – as I’m about to get into – VAXXED is morally and functionally no different than falsely yelling “fire” in a crowded theatre.
Fourth: Just… all the content warnings on this one. Nazis, abuse, eugenics, filicide.
Before I take you WAY back in history, I want to go just a few years back – to that VAXXED event in Minneapolis. It was at a public park near my house, and – though it was far from my first exposure to anti-vaxxers – it was my first exposure to that particular production and … fandom. My husband and I went, to see what it was about.
There was a large tour bus there, and they were calling it something like a “rolling monument to those lost to autism”. I forget the exact wording, but that was the gist of it. Parents were invited to write the names of their kids who had been “vaccine injured” right on the outside of the bus. There were the usual propaganda pieces and homemade signage about how Big Pharma is evil, and plenty of dehumanization of autistic people. There was one kid in a wheelchair, almost completely obscured by all of the homemade, disgusting signage that had been affixed to their wheelchair – their care givers had seen fit to basically turn them into a rolling protest display, the child was absolutely secondary to the “message” they wanted out.
… but nothing could have prepared me for what was to come.
They had fold out rental chairs laid out, as you would for an outdoor wedding or similar event. I assumed it was just to hear the producers speak about the movie, or whatnot. NOPE.
It was a memorial service – for kids “lost to autism” … eulogies and everything.
Now, not only is that concept utterly repugnant, it managed to get even worse – the children being eulogized were in attendance, watching their own memorial. But hey, they were given goodie bags to entertain them during their own memorials, so that was considerate … or something.
Think about that for a minute. Think about having a parent – or parents – that are SO put off by your neurology, that they would not only attend an event and support a movie propagandizing the idea that autism is a boogeyman worthy of bringing back all kinds of preventable diseases… but that those parents would actually eulogize you – in front of your face AND a crowd of strangers – as if you didn’t even exist. As if you were literally dead to them.
I haven’t even been able to recount the incident to anyone without choking up. It was absolutely horrifying, I’ve been through the aftermath of having my house – and neighborhood – destroyed by a tornado. Between the city and the vultures that followed the storm, I thought I’d seen the worse of humanity.
I’ve been to LA, through reality tv. The producers, and what they did to elicit dramatic enough reactions for their bloodthirsty audience? I definitely thought I’d seen the worst of humanity there. I’ve written about that whole ordeal extensively.
… But watching these people eulogizing living children, with those very children in attendance? That shook me in a way nothing before that day ever had. It chills me right to the bone even today, just thinking about it.
The thing is, this movie – and that event – aren’t lone issues, and they didn’t happen in a vacuum. They’re both part of what has been a long, well funded, and drawn out campaign of dehumanization of autistic people. As an autistic self advocate, I see the manifestation – and results – of this dehumanization on a near daily basis. Some examples:
– The use of autism as a scare tactic. This is usually to raise money / earn profits, such as with VAXXED and Autism Speaks.
– The murders of autistic children, and they way those murders are covered by the media, treated by the “justice” system, and commented on by the masses. The next time you see coverage of an autistic child murdered in the media, take note of the tone. Take note of the comments section. See how sympathetic both are to the murderer, and see how they talk about the murder victim.
Spoiler: Most of the time, the comments section is riddled with garbage like “Oh, that poor mom, she must have been under SO much stress” and “That kid must have been a MONSTER to push her to do that!”.
Yes, when talking about a parent killing their child… we autistics usually have to brace for such things. We read about the loss of our own, knowing that THAT is what we have to look forward to in the comments and general framing. That our lives mean so little – that we are seen as so unworthy of life – that we will be expected to watch our young – even 4-5 year olds – blamed for their own murders.
On the subject of VAXXED, specifically: Polly Tommey -VAXXED’s producer – has spoken publicly in support of those who murder autistic children, going so far as to say she will never judge those who do so HERE is a link to that video.
Fun fact: The murder of autistics – and other disabled people – by their care givers is SUCH a common thing, that every year on March 1, we observe Disability Day of Mourning. Yes, there is a specific occasion to mark the many, many such murders.
– Any time there’s a mass shooting, the media speculates that the shooter may be autistic. I believe that’s been the case in ONE of the incidents, and as such is definitely not a common denominator. (Of course, we can’t talk about the actual common denominators in those situations. Best just go with an easy boogieman!)
– This one falls under the earlier mention of child murder, but really deserves its own mention. Autism Speaks – the largest and most powerful autism org in the world – put out a video a few years ago. In it, a woman was saying horrible things about her autistic daughter, right in front of her. At one point, she openly discussed how she considered driving off a bridge with that kid – committing a murder-suicide – but that the only thing that stopped her was thinking about her other, allistic kid. HERE is the video for that. Note that she’s not at all disturbed by what she’s saying – you can tell she is speaking about this because she knows she will find support for those feelings.
Of course, that’s on top of Autism Speaks’ other disgusting videos, such as “I am Autism”, which used dark imagery and ominous music, talking about autism like it’s a sentient monster out to wreck lives and marriages. HERE is that link.
– One of the last things I did while still living in Minnesota was to draw public attention to a measure that one senator was trying to bring into law. It was for the mandatory registry of autistic people, hidden in a public safety bill (along with a bunch of anti-vax nonsense). It was horrifying as a possibility then, and it was even more horrifying to learn that several states already had such registries. In at least one case (ND? NJ? I forget), the law explicitly stated that medical professionals who failed to report autistics were at risk of losing their licenses over it.
Now, no one with any grasp of history at all is going to see that as a good, well-intentioned thing. It’s actually the reason I’ve been recommending that Americans avoid getting diagnosed – such registries could harm them greatly in the future – schooling, housing, child custody fights… or worse.
I could rant for days about the myriad ways that we are constantly subjected to dehumanization, but that last point seems like a good place to bring it back to Nazis:
It means “Life unworthy of life”. While people seem to think that the holocaust just started out of nowhere, and POOF there were gas chambers… this one phrase is foundational to the start of it all.
Back in 1920, two professors in Germany published a book with the term in the title, which translated to “Allowing the Destruction of Life Unworthy of Life”. It was about how mentally ill, autistic, intellectually disabled, and etc people were not only unworthy of living, but that they – we – were burdens to society, and that it was in society’s best interest to get rid of them.
Chillingly, it used some of the very same terminology that is common for warrior parents to describe their children – not only “burden”, but “empty shell (of a child)”, etc.
Hitler took the idea and ran with it. A campaign was started, supporting the idea that the disabled were burdens to society, etc. You can still find propaganda posters for this online (I can’t bring myself to share them here)
First, hundreds of thousands of people were forcibly sterilized – mentally ill, autistic, or physically disabled people, for the most part.
Quick note: The fact that forced and coerced sterilization of “undesirables” wasn’t limited to Germany, but was a legal and respected practice in other countries – including Canada and the USA – seems to not be common knowledge. Disabled people have been sterilized on this continent against their will up until the 90s at least. In Canada, First Nations women have been coerced into sterilization as a condition of seeing their babies as recently as 3 years ago. We’re by NO means innocent when it comes to such things… but hopefully we can learn from the past.
After the forced sterilization, the Nazis moved on and expanded the scope of their eugenics. What would later become known as “Aktion T4″ began when two parents wrote to Hitler and asked him to allow the “mercy killing” of their child. They referred to that *5 month old child* much in the same way that many refer to autistic kids – as a “monster”. The child’s name was Gerhard Kretschmar, and he was the first disabled person euthanized by the Nazi regime.
From there, Aktion T4 snowballed.
Parents – having been sufficiently convinced that their disabled children were burdens, monsters, and “unworthy of life” would give up their kids willingly, to be killed.
Then, the murders moved on to become completely involuntary, with the disabled being murdered without the request/permission of their families. Asylums became death sentences, several euthanasia centers opened. The Nazis experimented with mass murder, honing the ideas and techniques that would eventually be used in the Holocaust death camps, including the implementation of gas chambers.
Eventually – through more dehumanization campaigns – Lebensunwertes Leben was extended to include more and more groups: those Hitler saw as “racially impure”, following the “wrong” religion, and/or loving the “wrong” people.
Parallel to everything that was going on with the disabled people and euthanasia asylums, Hitler was also working on dehumanizing Jews and other groups. A few years after Aktion T4 got going, the death camps started up.
You see, the concentration and death camps didn’t start out of nowhere. They couldn’t – people would likely have fought back. Hitler was HUGE on marketing and propaganda, and knew that the campaigns of dehumanization were necessary to make the mass killing of people more acceptable – even desirable – to the masses. The holocaust happened as the conclusion to a long, drawn out path of propaganda, manipulation, and dehumanization.
Over the years, he managed to convince people that there were humans who were unworthy of living, and that killing those people would benefit society. Each step was incremental, training the masses to accept atrocities on an ever-increasing level. The thing is, once people are convinced that *any* group is disposable, they’re going to be much more susceptible to the idea that other groups are also disposable. If you are capable of seeing groups of fellow humans as less than human, and unworthy of life… that kind of thing isn’t easily contained. Once “this person is different from me, and unworthy of life” becomes something that people agree with, where do they draw the line, exactly? It’s like a virus.
This history lesson is important to put things in context: We’re not angry because they’re “saying mean things about us”. We’re terrified because we’ve seen this all before. We KNOW where this goes. The language may have changed, but the terminology hasn’t.
… and that’s something everyone should heed. In this day and age, we’re seeing dehumanization campaigns taking place all around us. We have a world leader – of one of the WWII Allied countries, no less – referring to actual, arm band wearing Nazis as “very fine people”. We’re seeing brown people in cages – treated worse than dogs – with many saying that they deserve it. There is an acute lack of empathy in the world these days, and – to a patterns person with a good grasp of history – it’s beyond concerning.
So when you see us, other disabled people, or any ethnicity being dehumanized, pay attention to what’s happening. Know that this has all happened before. In the 30s, it didn’t stop with the hundreds of thousands of disabled people who were murdered en masse.
As we know, the Nazis went on to kill millions of others – Jews, Roma, GLBT+, Non-Christians, and more.
… and, honestly, the idea that these current dehumanization campaigns are going to stop with the very group being targeted in each campaign? That’s completely lacking in any acknowledgment of history, and in human tendencies. I’ll say it again: Once you can be convinced that one group is less than human…
Now, do I think that every parent supporting this film is a dyed in the wool, goose stepping Nazi? No, of course not – no more so than the parents caught up in Aktion T4. I actually have some degree empathy for them, and see them – many of them – as victims of VAXXED, as well.
The producers of that movie, much like Autism Speaks, use fear and dehumanization as powerful, predatory marketing tools. They prey on fragile people who are shaken by a diagnosis that they have been conditioned – by those same dehumanization campaigns – to see as the worst possible thing for their children. If people didn’t hate autistics and weren’t afraid of autism, Autism Speaks would not have the power it does, and VAXXED would not be making the money it does. Fear is an INCREDIBLE motivator… and it’s often used to manipulate people to further horrible agendas – as history clearly shows.
When you see autism used as this boogeyman, when you see people say “better dead than autistic”, when groups like VAXXED and Autism Speaks frame our lives as being unworthy of life, and us as being nothing but burdens… I just want you to remember that this has all been done before.
While none of us has the power to go back in time and stop things from having happened, we DO have the opportunity to learn from that past – IF we know about it – and use that knowledge to prevent recurrence.
Now that I think about it… this post is a bit of an inoculation of sorts. And, much like with actual vaccines… one that’s only going to work if mass amounts of people make use of it.
Links to My Previous Posts on Autism
Every year in the time leading up to April, I write a post about autism, in the hope of educating people. Usually it’s with the goal of helping parents understand their autistic kids and treat them better – or empowering autistics themselves – but this year is going to be a bit different.
With this post, I am hoping to reach all the people that fall outside of the “autistic” and “parent of autistic” circles. I want to reach all of the people who don’t know what ABA is, and who assume that the “therapies” being fought for in the news MUST be a good thing. I’m hoping to reach the politicians who probably think that they’re fighting FOR autistics, when really they’re just alienating a key voting base for themselves.
There’s a lot to say, so I’m going to break it up into sections.
Thankfully, I did not go through ABA – “Applied Behavioural Analysis” myself. I WAS subjected to some sort of “therapy” in elementary school, but it was only a few hours a week, and I’m unable to find any details about it. I remember it creeped me out, and now the school and school district say they have no record, and didn’t even keep employee records. (I tried asking about the “therapist” – I remembered his first name). CURIOUS.
However, I am someone with a lot of empathy. I am friends with a lot of autistic survivors of ABA, and I’m acquainted with many, many more. I’m horrified by the abuse they went through, I hear them, and I LISTEN to them. No one should have to go through what these people have endured.
The Origins of ABA
First of all, I’d like to discuss how ABA came about. While one common argument against autistic self advocates is “that was the past”, it’s really not – it’s the very foundation.
ABA is the brainchild of Ole Ivar Lovaas, a psychologist, professor, and bigot. A couple examples of what he thought of autistic people:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
“In any case, what one usually sees when first meeting an autistic child who is 2, 3, or even 10 years of age is a child who has all the external physical characteristics of a normal child—that is, he has hair, and he has eyes and he has a nose, and he may be dressed in a shirt and trousers—but who really has no behaviors that one can single out as distinctively ‘human’. The major job then, for a therapist—whether he’s behaviorally oriented or not—would seem to be a very intriguing and significant one, namely, the creation or construction of a truly human behavioral repertoire where none exists.”
Yes, ABA therapy was invented by someone who saw autistics as inhuman / subhuman.
Lovaas went on to co author such works as “Behavioral treatment of deviant sex-role behaviors in a male child”, and co-create “The Feminine Boy Project” – a relative to ABA, which sought to “pre-treat homosexuality among young children”. If a boy was deemed to be too feminine / not living up to male gender roles enough, they were subjected to “therapy” to “prevent them from being (staying) gay”.
This was “accomplished” (sorry for all of the quotation marks, I’m too literal not to temper these words, in this context!) Through what would become known as gay conversion therapy – often through physical violence. At least one of the program’s earliest survivors ended up killing himself as a result.
Aside from both “therapies” originating with the same person, they also have the same mindset, the same goals. That autistics and gay people are subhuman / broken, and should not be allowed to be themselves. That they should be subjected to inhumane treatment until “molded” into something deemed more acceptable to society / their parents.
As with gay conversion therapy, ABA doesn’t actually change the subject into what the program / their parents want. A gay kid does not become straight through the therapy, an autistic kid does not become allistic. What it does accomplish is to essentially brainwash the subjects into *acting* more like the type of person desired by the program. After enough bullying, shaming, coercion, and general breaking down of a child’s personality and defenses, that child learns to pretend to be straight / allistic as much as possible, to please authority figures (the “therapist” / parents / teachers), and avoid negative consequences (beatings, denial of food, denial of affection, denial of water, denial of washroom breaks, etc).
So when autistics point out that ABA is “autistic conversion therapy”, and warrior parents act like we’re being histrionic… know that we’re not. This is literally the genesis of ABA. The goals were – and still are – the exact same for both.
Most of society has realized that gay conversion therapy is barbaric, bigoted, and uncalled for. Unfortunately, we can’t say the same for ABA.
What ABA is
The “quick and dirty” analogy is that ABA is essentially like a form of dog training that is generally frowned upon as abusive. It’s intensive “training” using aversive and coercive methods, to force change in a child’s behaviour. A lot of the time, this is about changing harmless self-sooothing behaviours in autistic children – stimming.
Stimming is the rocking, leg shaking, flapping, humming, dance, etc that we tend to do. It expends excess energy, it acts as communication, and it feels good. Stimming can prevent meltdowns, stimming can communicate an oncoming meltdown with enough time to mitigate things – when parents pay attention, learn autistic communication, and learn to recognize patterns. Suppressing stimming is a popular goal of ABA, and to us – that’s completely nonsensical. When you see mention of “quiet hands”, that’s suppression of stimming. The thing is – wiggling our fingers to release energy – as an example – harms no one. Yelling at / slapping the hands of / etc an autistic child who has that energy to release is not only uncalled for, it’s damaging. Teaching a child to suppress something that is obviously a help to them? Why do that? Is wiggling fingers or a bouncing leg really so disruptive that it is worth making a child feel like a pressure cooker?
Anyway. I digress.
ABA is an intensive therapy, usually 35-40 hours a week, of compliance training. Children are (usually) pulled out of school for a good chunk of these hours, missing out on actual education, for what is essentially a full time job. Imagine having to do compliance training – as a 6 year old – for as long as your grown, adult parents spend at a full time job!
In these sessions you may see things like a child being told to pick up a pencil, then put it down. Then pick it up. Then put it down – generally meaningless tasks. This goes on ad nauseum, with the child being “rewarded” – usually with a small candy – for complying. When the children do not comply, aversives are used to punish the child. This can be harsh words, denial of food/water/toilet break/affection (parents), etc.
Harsher aversives *tend* not to be used any more – there are exceptions – and parents love to point this out. However, this does not change the premise or goal of the “therapy”, or the fact that you have a child being subjected to extremely repetitive menial tasks in a brainwashing setting, for 35-40 hours a week.
This is one of those times when I’m not sure how well that I – as an autistic – can convey the horror of something that autistic people feel, to people who are not autistic themselves. It’s like when I talk about hand dryers – I’m sure it seems silly to non autistics, who don’t tend to grasp just how painful they can be to me, and to many like me.
I hope that allistic people reading this can picture a 5 year old, 6 year old, whatever – sat at a table for 35 hours a week, being told to do the same thing over and over again, and see how awful that is. How spirit crushing it is, and how inappropriate of a way to treat humans it is. I just don’t know.
As an aside – at 30-40 hours a week of this training – an autistic child is subjected to more of this training in one year, than their “therapist” went through to be qualified to administer ABA.
What ABA is Not
You may hear a lot of claims about what ABA is, that are pretty histrionic. “Life saving” is my favourite. “Medically necessary” is another. Both are false statements.
With the goal of ABA being to force the child to act allistic, that goal is solely to improve the life of the parents / family around the child. It’s to make their kid appear less “broken” than they see them. A common misconception – what with the name “therapy”, and all – is that this is done to help the autistic child.
The real fact of the matter is that no part of ABA is actually designed to help the child actually deal with autistic issues that affect *them*. It doesn’t teach children to actually calm themselves in the face of overstimulation, it doesn’t teach them healthy ways to release energy (ie: finding a good/better stim), all it teaches is suppression. Suppression is unhealthy.
Healthy stims are a good thing to teach. Working together with parent and autistic child to help the PARENT learn to recognize autistic communication would be a good thing. Helping an autistic child to learn ways around their sensory triggers would be a great thing – however, this is not what ABA is.
What ABA does to Autistic People
Now that I’ve touched on what happens in ABA sessions, I’d like to address what happens afterwards, how ABA can impact autistic children for the rest of their lives.
First and foremost, when subjected to compliance training for 35-40 hours a week, autistic children are taught that they lack autonomy. They are taught that they do not have the right to say “no” to something that they do not want to experience. This is drilled into their head, in a very intensive manner, from a very young age… and that’s incredibly harmful and dangerous. This leaves autistic survivors of ABA to be highly susceptible to various forms of abuse both as a child, and later on in life.
A child’s ability to decline physical contact is FAR more important than a parent’s desire for a hug.
Additionally, the whole “pretending to not be autistic” thing is extremely problematic.
This is called masking, and does not change the fact that the child is autistic, it merely brainwashes them into maintaining a facade. Masking is also the reason that many women are not diagnosed until much later in life – because of gender roles and conditioning, we tend to be a lot better at masking, early on.
Masking is why you may think or say “you don’t look autistic” when you meet an older autistic person. We – and masking is something I do, myself – have had an entire lifetime of masking to fit in, whether it was forcibly coerced, or just picked up as a survival skill.
Anyway, this masking – along with the actual ABA itself – is not only exhausting, it has been shown to have disastrous, lifelong effects on ABA survivors.
A large percentage of ABA survivors end up with PTSD as a result of the “treatment”.
A study in 2007 found that nearly half of all ABA survivors met the diagnostic threshold for PTSD. I’ve seen other studies referenced that put the number closer to 85%, and also include C-PTSD.
Is having a child that can better fake “normalcy” really worth setting them up for a lifetime of PTSD and training them to be a perfect target for physical and sexual abuse?
Who Benefits from ABA
The other day, a conservative politician retweeted a tweet from an autistic advocate, that highlighted one of Lovaas’s awful quotes, mentioned above.
I really shouldn’t have been, at this point, but I was shocked to see that “warrior moms” – parents of autistic kids who spend a lot of time going after autistic adults online – attacked his sharing of the quote, calling it hate speech.
Cognitive dissonance about calling it hate speech one minute, while continuing to subject your child to the “therapy” founded on the same principle, by the same person aside… it IS hate speech. That’s the point. ABA was founded on a basis of hatred and ignorance about autistic people.
I digress. I wanted to share that incident, as it had a pretty wild outcome – the parents were accusing the politician of using it to “further his agenda”. (Of course, they don’t accuse politicians on their side of doing the same, when sharing anything pro-ABA. Again, I digress…).
Additionally, autistic advocates – myself included – have also been accused of “agenda!!!”. So, I’d like to touch on that for a minute – the agendas of all parties involved.
Politicians are going to politic. That’s the same for any subject.
The parents are fighting for ABA, because they want “normal” (appearing) kids. It’s not about the child’s health, mental well-being, or future, as discussed above.
ABA “therapists” – BCBA, or “Board certified behaviour analyst” – stand to lose a TON of money if ABA is relegated to the same place that its twin – gay conversion therapy – is.
I saw an article the other day, that parents are paying something like $25,000 for 3 months of ABA. There are many articles out there about how parents “have to sell their house” to afford ABA. That’s… wild.
Adult autistic self advocates that are fighting to abolish ABA are doing so without any hope of personal gain. In fact, we open ourselves up to LOSS by fighting for autistic kids of today. We are constantly harassed by warrior moms and BCBAs online – up to and including death threats, in some cases – and it’s extremely stressful. Some take time off work and pay for commutes and materials to counter protest.
This can come at an extreme cost – not only financially (and many autistics are under/unemployed to start), but also physically and emotionally. Any giant, loud crowd can be extremely distressing and draining, even for pleasant circumstances (I’m personally bracing myself for a big outdoor concert later this year. ) … but it’s so much worse when you’re outnumbered and surrounded by people who are angry, and whose signage is full of hateful rhetoric about people LIKE YOU.
Yet, we do it. We’re not paid, the best we can hope to gain from our actions is to prevent more autistic children from being subjected to the barbaric and inhumane treatment that many of us have been.
… and that would make it worth it. That is literally our entire goal, our agenda.
Attacks on Autistic Adults
In the past few days, I’ve not only been accused of “agenda!” and “personal gain!”, but also of supporting Autism Speaks (Uh, NO) because of my anti-ABA stance, and more. I’ve had my twitter responses flooded by angry, hateful parents who are *enraged* that adult autistics are speaking up for the child autistics of today. That’s not all, and I’m far from alone in that. With April starting in just a few days, many/most of the “out and proud” autistics I know of only have already been subjected to much of the excess nastiness we’re accustomed to April (“Autism Awareness Month” bringing our way.
As I told one such venomous warrior mom on twitter:
I, for one, cannot wait until the current generation of ABA survivors are all grown up – the children of warrior moms/mommy bloggers. The generation that was blogged about, had their private bathroom habits discussed publicly, who had their meltdowns videotaped and posted for the world to see (and for their parents to gain social media or real currency from!).
These kids had it so much worse than we did. I honestly don’t even think I’d still be here, if my own mother had the backing of warrior moms back in the day. I can’t imagine going through school – hard enough as it was – with the added hell of having my childhood blogged about, as ammunition for bullies. I just.. Can’t.
If the parents who attack and harass adult autistics online for speaking up think that WE are angry… just wait til their kids grow up. They don’t seem to realize that we WERE those kids… and those kids will grow up to be us.
The difference, though – aside from all the extra awful they’re enduring?
Back in the day, no one was standing up against ABA and abusing autistic kids, to our generations’ parents.
I can’t imagine how much angrier I’d be to grow up and see archives of my parents fighting against autistic adults standing up for me. Yikes.
These kids will grow up, they *will* find their community – and their voices – as so many of us have.
I hope the parents that abuse autistic adults online are ready for that day, and ready for themselves serving as a firsthand example *to other parents* of why ABA is a bad idea.
A Word to the Left Wing Politicians:
It is, frankly, appalling to me to see the very politicians who champion women’s rights and fight against rape culture, to fight so loudly for an abusive, unnecessary industry that sets up children to become sexual and physical abuse victims.
As a society, we realize that gay conversion therapy is inhumane. We look at the type of dog training that most closely resembles ABA to be animal abuse. We look at residential schools – an idea that bares striking resemblance to the concept and execution of ABA – as a dark spot on our country’s history, and one that we are trying to make reparations for now, after the fact.
I invite you to take a good hard look at ABA, at what these children are being subjected to, and realize that you are not learning from the mistakes of the past. You’re repackaging and repeating them, with the same tired old justifications that were used back then. You are the parents that subjected gay children to conversion therapy in an attempt to “fix” them – for them to fit in better and have a better life, of course – and you are the colonizers that removed First Nations children – people like my own grandmother, who raised me – from their culture, in an effort to “tame” and assimilate them, forcing them to fit in to mainstream society, and the dominant culture. Not even the lingo and excuses have changed. Be better.
If none of that info, if none of this post is enough to discourage you from continuing the fight to fund ABA, I ask you to consider this:
Many of the qualities and traits of autism put us squarely in the NDP’s key voting demographic. There is no such unifying feature to being an allistic parent of an autistic child.
So, if you won’t consider the actual needs of autistic children, maybe you could consider the actual needs of your political party.
Do you have any idea how many ABA survivors are voting age? How many autistics are voting age? Those numbers increase every year. I’m asking you to consider that, as you continue to work on harming the younger versions of us. We see, and we remember. (And BOY, we can hold onto memories and grudges!)
I would suggest not only doing some real research into autistic experiences of ABA, but also into common traits of autistic adults. For instance, are you aware of the huge percentage of autistics that are GLBT, non-binary, etc? Are you aware of how our empathy and sense of justice tends to make us extremely social justice minded?
Do you have any idea how you’re alienating a great voting demographic, out of ignorance? It’s really disappointing. I want BETTER from the parties that purport to champion marginalized groups.
In fact, I hope you can consider what it feels like to watch a party fight for the rights of EVERY other marginalized group, but our own. To see that your empathy ends JUST short of autistic lives and well-being mattering.
Well, I’m on page 7 of a WordPerfect document here, so I should probably wrap this up.
Like I’d said in the beginning, there was a lot of information to cover – and I hope this has been educational for anyone who has read this far.
I’d like to end with a request, for observation of #AutismAwarenessMonth / #AutismAcceptanceMonth:
This April, please consider checking in with your doctor about your vaccine record, and arrange to have any outstanding vaccines or booster shots dealt with.
It may not be the quick trip to AutismLand that some like to claim, BUT I think it’s on theme for the month.
Not only would you be helping autistics – by fighting the nonsense stigma people are tarring vaccines with, in OUR name! – you’d be helping everyone – including yourself! Win-win-win!
This is looking to be an especially demonizing / dehumanizing “awareness” month, so it would be nice to see progress made against autistics being used as a boogeyman to usher in a new round of polio, you know?
Please and thank you!
Links to My Previous Posts on Autism
With Autism Awareness/ Acceptance month more than half over (WHEW!), I’d like to take the opportunity to spread a little more awareness.
Autistic people face an infuriating Catch-22 situation, and I’m not entirely sure that neurotypicals are even aware of it – even the well-meaning allies. So, consider this a PSA of sorts.
People who meet the neurotypical definition of “autistic enough” – maybe they’re nonverbal, don’t withhold their stimming, and/or need assistance of some sort – are seen as being less than human. .. And less than capable of speaking up for themselves.
I can’t tell you how many times I’ve seen people written off as “stupid”, just because they don’t communicate verbally. (Not talking is not the same as not thinking… it’s not even the same thing as “not communicating”)
I can’t tell you how many times I’ve seen autistic self-advocacy written off because, essentially, autistic opinions aren’t “human” enough to matter.
Autistic people are under immense pressure from society to conform, and to present as neurotypical as possible. “Until every piece fits“, after all. Even beyond the ridiculously offensive idea of “curing” us, most “therapies”, etc are about bullying us (torture, in some cases – ABA, for instance) into submission, and appearing more allistic. It’s not about helping us with things like over-stimulation, it’s more about goals of forcing autistic people to not flap their hands, etc. Parents and teachers telling autistic kids “Quiet hands!!”- when a child is stimming – is actually a thing.
(Don’t get me started on the whole issue of parents being upset about a lack of (verbal) “communication”, while actively working to silence actual, non-verbal communication by autistics. Words aren’t the only way to communicate, and for a society that is so hung up on body language… many neurotypical people sure go out of their way to ignore/squash Autistic body language!)
… but when you spend your life observing, mimicking, putting yourself through horrible discomfort, watching your every word and movement, etc… you know what your reward is for finally reaching that ability to “pass”?
It’s being told that you’re not autistic enough.
Autistic people who “pass” are frequently told that they’re not autistic enough, or just plain aren’t autistic. This usually happens when an autistic person speaks up for autistic rights, etc. I just read a tweet where the woman “came out” in a college class, was told she shouldn’t say “autistic”, she should say “person with autism”. When she said “I am autistic, and I disagree”, she was shut down with the “not autistic enough” nonsense.
This is not only completely illogical behaviour from neurotypicals, I’m pretty sure it’s related to gaslighting – if not actual gaslighting. The idea that we lack agency to talk for ourselves if “autistic enough”, and then lose agency to speak as autistic people if we DO try conforming is cruel and abusive.
I want to discuss something I don’t usually talk about. I don’t know if it’s a personal taboo or more of a community culture thing, but I don’t tend to talk about how much effort goes into “passing”. Like many other things in life, I suppose… the key to “passing” is to make it seem natural, and for people to not actually realize the effort that went into it. (I think I just made a makeup metaphor. Lord. All that work on “passing” is corrupting me!)
As a kid, I chewed shirt collars… all the time, all through elementary school. I’d chew them until my chin was red and irritated. It was just a source of comfort – stimming – during the constant stress I was put through at school and at home. I had no peace, and I had to be constantly on alert.
Through behavioural counseling at school and eventually moving in with my grandmother (and away from major stressors), that particular stim went away – but not without a lot of work. I had to be constantly conscious of it, until it was just habit to not do it anymore.
It wasn’t the only way I trained myself to pass. I spent YEARS watching faces, making note of patterns, and even studying facial expressions. I put myself in super uncomfortable social situations, to learn. I observed other kids interacting, and worked on mimicking. It was a lot of hard work, resulted in a lot of discomfort, and even more bullying.
These days, I can get along with neurotypicals, even if they’re not always the most logical creatures on the planet. I still have to watch everything I say (NT/allistic people are big on filtered speech, however inefficient that restriction may be), keep the rocking and flapping to a minimum, etc. When I’m out running errands, I have to endure incredible pain from high pitched electronic noises that you may not even hear… simply because wearing noise canceling headphones would be seen as “weird”. My eyes hurt from too-bright florescent light in stores, because wearing sunglasses inside is similarly seen as weird. I could be so much more comfortable, if I wasn’t so focused on passing.
You may see someone who passes as one of you, but what you don’t see is how much brainpower and energy is being wasted in trying to live up to an allistic standard, or the physical pain I can be in. Because you don’t see that, it can be easy to write me off as “not autistic” or “not autistic enough”… and that is incredibly frustrating.
The thing is, living as an autistic in a neurotypical world feels a lot like an abusive relationship. We bend over backwards, and our efforts are rarely – if ever – reciprocated. Rather than being met halfway, we’re expected to do all of the changing. We have to understand allistic facial expressions, but allistic people aren’t expected to figure out autistic body language. We have to go through sensory hell, rather than expect stores to just tone down the brightness and noise. Let’s be real, NO ONE needs things that bright and noisy!
Because of this lack of reciprocity – and I can’t believe I’m admitting this – I often fantasize about just NOT trying to “pass” anymore. It’s a delicious fantasy – just being as comfortable as possible, no longer concerned about trying to live up to the allistic “standard”.
I don’t really have the guts – or means (No longer passing would definitely affect my income!) – to drop my efforts entirely. The other day I felt a bit ballsy and wore my sunglasses inside – it felt completely subversive.
Maybe someday I’ll invest in noise cancelling headphones to wear while running groceries. It certainly would be nice to drown out all of the high pitched electronic nonsense that’s *everywhere*, but again… the beaten-in desire to “pass” prevents me from doing so, even though I’d be FAR more comfortable.
I guess the awareness I’d like to raise, through this post, is that you never can tell what someone else is going through, to present neurotypical. I wish people would think about this when trying to silence autistic voices.
PS Here are some of my previous posts on Autism.
Well, it’s just about April … so I guess it’s time for my yearly rant about it. I’ve actually got a few mini rants this time around, all basically connected.
The other day, a sponsored post came across my Facebook feed. As an intentionally vague description, it used stolen artwork to associate the puzzle piece “Autism symbol” with a popular piece of pop culture, for commercial gain – not even linked to ANY non-profit. It was gross and appropriative on many levels… and then I read the comments.
… Where to even start with this?
First of all, props to all of the Autistic people in the thread who tried to speak up against it, while being wholly drowned out by non-Autistic people. It can be hard to speak up for ourselves, in the face of being outnumbered by many. I will never understand why some NT people have such a need to shout down Autistic people speaking up on Autistic issues.
A few issues to discuss here, as a result:
1. If you are not Autistic, you do not get to police how Autistic people address themselves.
This is a HUGE issue when it comes to identity-first vs person-first language. Autistic people tend to prefer identity first language – “I am Autistic”, “They are Autistic”, etc – VS person-first language – “She has Autism”, “He is a person with Autism”, etc.
Identity-first language acknowledges that this is who we ARE. We’re not inflicted with some disease, that we don’t need a “cure”, etc. Person-first language distances the autism from the person, and is associated with the view that it’s a disease. You have a cold, you have cancer, you don’t “have” autism. Autism is our Operating System, it’s tied up in to our personalities, our senses, the way we think, the way we experience life. It’s not some *thing* you can just take away.
I get so tired of seeing neurotypical people “correcting” Autistics on their choice of language. “You’re not ‘autistic’, you’re a person with autism!” is never an acceptable thing to say to anyone, period. That goes double when THAT is the response to an Autistic person explaining why something that NT people are doing is problematic.
Hell, even if you are Autistic, you don’t get to police the language that Autistic people use for refer to themselves. Some – not many, but some – Autistic people prefer person-first language. Many don’t. Let people address themselves the way they see fit, and have some respect for their choices.
2. If you are not Autistic, you are not Autistic.
This is an issue both on a smaller, individual level, and on a societal level. So often, we will see NT people in Autistic spaces, speaking over Autistic people, because they are related to an Autistic person. Relation does not equal authority, and it most certainly does not grant some sort of divine permission to speak OVER Autistic people.
On a societal level, this is a problem when it comes to issues of representation. So often, parents of Autistic people are looked to as “consultants” in matters of Autism (note: matters of Autism, specifically. NOT matters of being a parent to an Autistic child).
Under no circumstances is a neurotypical parent of an Autistic child an expert on what it is to be Autistic, nor should they be the sole voice when it comes to things like consulting for the creation of an Autistic character in the media. With so many actual Autistic people out there who are more than willing to consult on such things, there is really no reason for an NT parent to be consulted at all. There are, after all, Autistic parents of Autistic children out there!
Right now, this is the issue we’re seeing with Sesame Street’s new Autistic character. While they apparently did consult with Autistic people, they also consulted with Autism Speaks and NT parents “for balance”. This is probably a big part of the reason that all of their marketing uses person-first language, much to the disgust of basically every Autistic person who has said anything about the whole thing.
When you are specifically talking about women’s lives, you do NOT need to consult men “for balance”. When you are talking about black lives, specifically, you do not – AND SHOULD NOT – need to consult white people about it, “for balance”.
When you reach outside the actual community for such input, you are taking agency away from those actually impacted by the portrayal being discussed. There are far too many Autistics that are willing and able to educate and/or fight for proper representation, to keep them silenced in favour of NT people.
Autism Speaks – an organization almost universally despised by those it purports to represent – tends not to have any Autistics actually involved with the organization… go figure.
Autistic Self Advocacy Network, on the other hand, is vocal about “Nothing about us, without us”.
3. Let’s talk about the puzzle piece. Again.
This is a subject I’ve ranted about before, but let me try to condense this down into a shorter form.
The puzzle piece was around before Autism Speaks, though it is HIGHLY associated with them. The idea that we are a puzzle to be solved is dehumanizing and offensive to a lot of us.
The accompanying “Until every piece fits” may sound pleasant enough to the average neurotypical person, but you have to remember – your experience is not ours. You may hear that and think “yes! Autistic people should fit in!”. We hear it, and our thoughts are usually elsewhere. A few examples:
– ABA “therapy” (Which has left many Autistics with PTSD), other compliance therapy (Which could/should be considered torture, in many cases) and many other ways that many Autistics are forced to “fit”.
– The knowledge that the organization most associated with that phrase/image is also one who is big on researching in-utero markers for Autism. Yes, they want to employ eugenics against us. Much like words matter, context matters. Knowing what history knows, that phrase would sound an awful lot less warm and fuzzy if you heard Hitler saying it, wouldn’t it?
– There’s the issue that the puzzle piece – usually done up in primary colours – is infantilizing. These days, people are more likely to be diagnosed in childhood, but it’s not a childhood thing. There’s a lot of erasure of adult Autistics in the community. When it comes to “awareness”, support, etc, many Autistics feel that we are forgotten once we age out of childhood. When it comes to any online discussion involving Autistics, adult Autistics are frequently discounted or ignored entirely. We don’t become Neurotypical once we hit age 18, you know! To have such a “childish” symbol associated with us is a reminder of that whole issue.
– The very fact that we shouldn’t NEED to fit. Society benefits from the Autistic mind in so many ways – where do you think we would be right now, technologically speaking, without Autistics? You would not even be on the internet right now – it would not exist – and able to read this rant, if not for the many, many people on the spectrum who made the internet happen. It’s not logical to benefit from our brain differences, while simultaneously carrying on about how we should be just like you. Diversity is important, on so many levels. Even beyond just representation… but I’ll spare you the tangent about evolutionary biology. For now 🙂
I’ve said it before, I’ll say it again. We are UNIX minds in a Windows world… and the analogy works on many levels.
While the puzzle piece and phrase may sound positive to well-intentioned NT people, they can have MUCH darker connotations to those of us on the spectrum.
All of this, and I still see NT people shouting down Autistic people who try to explain how problematic the symbol is. We shouldn’t have to look past the dark, creepy overtones to the symbol and phrase, just because they make neurotypical people feel good. That’s not how this works.
Awareness vs Acceptance
It’s 2017. We’ve been around for a very long time, and we’ve even been known for a long time. It’s time to move on from “awareness” in April.
I’ve noticed a very clear divide in the hashtags used by Autistic people, and by non-Autistic people in April. We tend to use #AutismAcceptance”, while those not on the spectrum tend to use #AutismAwareness. Words do matter, whether it’s this set of two options, or the earlier discussed identifying language.
This April, please reconsider your words. Please reconsider the use of the puzzle piece. Please consider NOT “Lighting it up Blue” – an Autism Speaks initiative – and consider one of the alternatives, being promoted by actual Autistic people to combat the “Light it up Blue”.
A few hashtags to follow on Twitter, or to use to search for further reading:
Just now, I see there’s a new movement.. To use #AutismAppreciation. I like it!
Now, if you’ll pardon me, I think it’s about time for my yearly viewing of X-Men: The Last Stand.
PS Here are some of my previous posts on Autism.
|CFAC is a local nonprofit which brings costumers together to volunteer their talents for local charities, to aid and enrich their fundraisers and other events. Dressed as princesses, superheroes, and more, we do appearances at events such as charity walks, Children’s hospital TV programming, and more.
Prior to joining The Royal Sisterhood, I was involved with another division of Costumers for a Cause, doing appearances as Superheroes/ villains, along with my husband. (I went as Beast, he would usually go as Magneto or Loki, all from the Marvel Cinematic Universe.)
At a TRS meeting yesterday, my friend Sara did a great presentation on gender inclusiveness while doing charity appearances. With an Autism Walk coming up, I asked if the group had ever discussed interacting with Autistic children. I have seen some pretty bizarre things with regards to Neurotypicals interacting with Autistics, after all.
After sharing a few thoughts on the matter, I was asked to write up a bit of a guide. I went home, brainstormed with my husband, and here we are! While this was written specifically for a group of Princesses, we thought that it was good advice for those doing charity appearances in general, so decided to post it here.
prior to a charity appearance.
Interacting with an Autistic Child
1. Don’t force eye contact.
Eye contact can feel very threatening/intimidating to some, and far too intimate to others. If it’s obvious they don’t want to make eye contact, talk to their shoulder or their chin. Just because they’re not looking at you, doesn’t mean they’re not looking at you… if that makes sense. Don’t take it personally if they don’t want to look you in the face.
2. Do not touch – even a fist bump or high five – without asking first.
Don’t take it personally if they don’t want to touch you, or shy away from you physically.
3. Talk to the autistic child first, not their parent.
For example, ask the child if they want a hug, not the adult if it’s OK. If it turns out that the child needs the adult to communicate for them, the adult will step in. Asking the adult first is a sore point in the community.
4. Be mindful of sensory issues.
Avoid or go very light on perfume, etc when attending an Autistic event. Be mindful of the fact that loud voices (loud to us, not to you!) can be very startling.
Of particular note for princess events: The high, very girly princess voice and accompanying laugh can be difficult/painful, especially in groups. If you are in a group of two or more princesses, try to keep laughter subdued.
5. Know your audience.
Autistics are very, VERY literal. There’s a fine line between staying in character, and offending the children. Many of us have no ability to suspend disbelief, and some of the things said to enhance “character” can come off as lying, or as mocking the Autistic child.
For example, if you say “I just came from Arendelle…”, an Autistic child is likely to process it something like: “Arendelle doesn’t exist. Is she making fun of me? Does she think I’m stupid? What am I supposed to say to that?”.
It can be very awkward and uncomfortable. If at all possible, avoid making definitive statements about the fictional world you’re portraying (I know, this is super counter-intuitive, for showing up in character). For this reason, various figures of speech can also be confusing and make things awkward.
6. Speak very clearly. Enunciate!
Many Autistics also have sensory processing disorders, which can be exacerbated by busy environments like the charity walk. When you hear EVERYTHING going on around you, it can be very hard to pick out a certain person talking, even if right in front of you.
Please don’t be offended if you’re asked to repeat something, or if you are misunderstood. Also know that many rely on reading lips, even if they don’t have a hearing problem. Try to face in their general direction when talking to them, even if eye contact is an issue.
7. Give plenty of time for a response.
Autistic children can take longer to reply than neurotypical children. If you’re sure they heard you, just have a bit of patience in waiting for a reply. They’re processing! Also, know that long pauses may feel really awkward to you, but aren’t necessarily to Autistics. Autistics can enjoy your quiet presence, and don’t necessarily need nonstop conversation. Social cues are not our strong point!
8. Ask about hobbies, BUT…
… be prepared to have your ear talked off. If you get an Autistic child talking about an area of special interest, they can go on and on. It can be hard for them to tell when the other party is not interested, or the conversation should move on. Be ready to be very, very patient!
On that point, know that when the conversation has ended, be clear that you are ending it. Don’t hint around that you have to move on, just be clear and honest that you need to meet others, etc. Again, social cues!
9. Do not take anything personally.
I’ve touched on this with a couple of other points, but it should be expanded on. For one thing, Autistics can be very frank with you. There’s not usually a lot of sugar coating, more just saying what’s on the mind. It can come off rude, but is usually not ever INTENDED to be rude. These can fall into observations or questions about physical appearance, etc. Try to roll with things, even if something hurts a bit.
10. Watch your wording.
Please avoid the use of “high functioning” or “low functioning” to describe an Autistic person. Don’t compare an Autistic to a non Autistic, or use phrases like “For an Autistic…” (“You’re so friendly/empathetic/well spoken for an Autistic”, for example). Though it likely won’t come up, it needs to be said: Don’t use “cure” language.
Additionally, know that – much like gender pronouns – How you refer to an Autistic is important. Many/most Autistic adults prefer identity-first language, ie: Autistic person, Autistic child, etc… while many non-Autistic people seem to think that person-first language is most appropriate: “Person with Autism”, “Person who has Autism”. Many of us see “with” or “who has” to be offensive, as it usually accompanies the idea of us being “inflicted” with something, that it’s something separate from us, and/or is a temporary/ “curable” thing. Autism is our Operating System, it’s who we are.
If an Autistic person tells you what their preference is – identity-first or person-first – please respect it. Also: Please don’t ever say “suffers from Autism”.
11. Tone matters.
You don’t necessarily need to mimic how the parent talks to the Autistic child. Some parents of Autistics are… less than ideal in how they treat their kids, and can talk to them like they’re babies and/or idiots. Aside from issues mentioned above (eye contact, enunciation, literal speech), you shouldn’t feel the need to talk any differently to an Autistic child, than you would a neurotypical child. As an example, nonverbal children are often looked at as stupid or lesser-than, and are frequently talked down to. The fact that they don’t speak *doesn’t* mean they don’t understand, or aren’t intelligent. Some of the most intelligent people I’ve ever known are non-verbal.
12. Know that every Autistic is different.
Some of these tips won’t apply to everyone. For some, every single one will. You will likely meet Autistic children who “pass” for neurotypical.
As a bit of an aside – this isn’t so much about dealing with Autistic children, as it is a bit of information about the Autism community, culture, etc…
April is coming up, and with it… “Autism Awareness Month”. Every Autistic adult I know dreads this month, as the promotion and observance of it tends to be hugely offensive to Autistic people. I’ve written about it Here, Here, and Here. I’d encourage anyone planning to do Autism charity appearances to read through those posts.
1. Autism Speaks is a horrible organization, on so many levels. Most Autistic adults and many parents of Autistics are horrified by their campaigns and treatment of Autistics. Please consider NOT supporting A$, and look to alternative organizations. I tend to recommend Autistic Self Advocacy Network, as it is “Nothing about us, without us”
2. As an extension of #1, the puzzle piece and “Light it up blue” are very much Autism Speaks symbols, and as such are pretty offensive to a many Autistics. For more information/perspective, I recommend Goggling such things as “Don’t light it up blue”, and “Autism Speaks doesn’t speak for me”.
3. The #ActuallyAutistic tag on social media – particularly Twitter – is a good read if you’d like to hear what Autistic people have to say.
Recently, I applied for a job.
This is a unique experience for me, as someone who’s long considered herself unemployable. It’s not that I’m incapable of working, or that I’d even be considered an undesirable hire … it’s more a matter of … how do I put this?
I’ve long felt like any possible outside career I could take up would end – in very short order – with me feeling like a square peg being forced into a round hole. I can do pretty much anything, I can learn – and master – things incredibly fast… but that ends up being a negative, for most careers. Even with my own self employment, I hit a wall and need change, new challenges, etc.
I’ve always joked that the day a career is created where I could basically get paid to problem solve all day (with lots of research involved), but where those problems were ever changing, crossing many different subject areas… that’s the day I could settle into a career.
Until that point, I would keep doing what I’m doing. I know myself well enough to have settled into a pretty decent grove – keeping things varied between costuming and writing – that I’ve managed to stave off another career regeneration well past my normal limit.
Well, I found that perfect hypothetical career opportunity, and I applied. I know there’s only a very slim chance of getting accepted… but it would be amazing. Not only would it be amazing *for* me, it’s something I could do a great job at it – it’s something that could put almost all of my Aspergian traits to really good use. They could really benefit from adding someone like me to the position.
So. Fingers crossed.
Anyway, I’ve been approaching the whole thing the way I did when I applied for MasterChef. I feel sort of bad for making the comparison, given how that whole experience was… but there are definite similarities in the whole apply -> wait a long time to hear back thing. It’s actually kind of surprising how much it’s been reminding me of the pre-MasterChef period. Though the end goal is VERY different from MasterChef, even a lot of the “training” I’m going through is similar.
I’m doing a LOT of reading and viewing. There is so much subject matter and history to get acquainted with, and it’s fascinating. Also, it’s really exciting to see all of the subject matter I could be dealing with, and interesting people I could be working with.
I’ve been studying up on the logistics involved, and formulating the plans for the life upheaval that would be involved, including a move. (This part was easy – I’m a logistics nerd, so we’re all set!)
The most perplexing area of preparation/study/etc is what I actually planned to discuss on this blog entry, now that I’ve rambled so. It’s the matter of “mainstreaming”, as someone who … well, who is pretty settled into their ways.
I’m someone who didn’t really know how to meet people and make friends until I was 24. It’s taken time, but I actually do strike up conversations with strangers now!
I’m someone who spends her work days at home, in sweat pants and t-shirts. Comfortable cotton, no irritating closures. When I go outside for errands, it’s nicer sweatpants, yoga pants, etc. Comfortable shoes (men’s sandals).
When it comes to outdoor shoes, my year looks like this:
Socks with sandal season
Kamik boots season
Socks with sandal season
… back to sandals season.
Those sandals are the exact same manufacturer and style across the past few years, btw.
AUGH. I am saying goodbye to my men’s sandals, for the most part. Boo – they are so comfortable! I have invested in a few pairs of fall boots – replacing my “socks with sandals” season. They have actual heels, which is really throwing my body/senses for a loop. It’s been interesting, feeling which muscles are engaging in the whole process of walking in heels. Certain muscles feel good, as it’s a nice stretch… others aren’t as nice.
I’m training my feet for wearing heels, as my large toe joint in particular has an issue with this whole idea. A few hours every day, I wear them at my desk, walk around a bit, etc. When we go out, I wear the smallest heel, for now – I’ll graduate to taller ones little by little.
I have a strong preference for extremely utilitarian, cross-body messenger bags. For the past year or so, this has taken the shape of a Star Trek sciences uniform bag, which I adore. I’ve also been eyeing the Klingon one, which has a built in bat’leth as decoration.
.. However awesome these are, they’re not so great for the whole idea of professional look, mainstreaming. There is a lot of baggage (hah!) wrapped up in the carrying of a handbag, so this has been a weird bit of study for me. I’ve developed a bit of an obsession, though on a different track than the sort of stereotypical female handbag worship thing.
For one, I have a definite “type”, and eschew anything outside of it. As my husband was quick to point out, the ones I deem acceptable all fall pretty close to Golden Ratio proportions. It’s not something I was consciously considering, but it definitely has been holding true.
Beyond shape/ratio, I have a strong preference for actual leather, no logos. Decorative pockets are great, as long as their locations, shape, and size are pleasing.
For me, this has all culminated into the realization that I am into old Coach bags. I am not a fan of their recent stuff, or basically anything that is “current” fashion, regardless of designer. While not being into anything current is a bit of a blessing on the wallet, I’m a bit dismayed at my apparent steadfast preference for a designer name – it’s jarring, for someone with a past refusal to spend more than $30 on a purse.
On the upside, “old” means “much more reasonably priced on Ebay”… and they’re built like SADDLES. I’m pretty sure their old leather purses will last decades. A $130 purse that lasts even a decade is a more economically sound choice than spending $30, and replacing every year when worn out.
It’s been weird, researching purses with regards to looking more adult/professional/”neurotypical”. I knew that there are a lot of status-type issues wrapped up in the choice and purchase of a purse; I knew that colours and styles are seasonal, etc.
What I had never considered before were the logistics and “status” messages wrapped up in the type of purse you carry – handbag, cross-body, etc. While I understood that my Star Trek messenger bag would be deemed less than professional, I assumed it was solely because of the “Star Trek” – not necessarily the “messenger bag”. Sure enough, when observing people… you don’t see a lot of professionally attired women carrying cross-body purses. (Those that do have skinny straps that dig in, not nice, wide utilitarian ones!)
Switching to a shoulder bag has been weird, with losing some use of the arm I’m carrying it on. I’m constantly adjusting it to be on my actual shoulder, as it slides.
Handbags are even worse, carrying in the crook of the elbow. I actually had to google “how do you carry a handbag?”, as it was something I’d never paid attention to. My preferred method is to put my forearm through the straps, aim it downward, and support the bottom of the bag with my hand – it’s less strain on the elbow, and prevents it from flapping around and annoying me.
My husband says it looks like I’m carrying a football, however. He demonstrated how the professional women at his work carry theirs, with their hand aimed upwards. He then related it to a Tyrannosaurus Rex, made a generic “raptor” noise, and we both dissolved into giggles.
I find the whole thing fascinating, though sort of ridiculous. I don’t get the point of spending more money, to lose the use of one arm. If you are a professional, you are likely very busy and DOING things… why is it seen as a more professional look to hamper the use of one – usually the dominant – arm? That’s illogical.
I’m assuming that – much like pockets in women’s clothing – it has its roots in ingrained, systemic sexism. That a woman doesn’t need to be doing anything, so it doesn’t matter if her mobility is hampered. That being the case, shouldn’t messenger bags be ULTRA professional?
The same thought can be applied to shoes. Heels are “professional” (to a degree, anyway), but comfortable sandals are not. Heels cause you to take smaller strides, hamper speed, etc. They cause bodily fatigue – why is that professional? Men’s dress shoes are such that their strides aren’t significantly hampered, after all. It’s kind of a gross message, when you think about it – especially considering many workplaces actually require women to wear heels.
When you combine heels and handbags, the problem is even greater than just “your stride is hampered and your arm/hand dexterity is hampered”… you add in issues of balance and muscle strain.
Who knew there would be so much to consider when choosing *accessories* that have literally no impact on anyone else!
Anyway, I digress. Unfortunately, my glorious TARDIS wallet was similarly ruled to be less than professional, and I’ve had to buy a more adult looking wallet. While my TARDIS wasn’t actually “bigger on the inside”, it held a lot of stuff – plenty of cards, a coin area, a sections for bills, etc. It’s been hard to find something similar in “professional”.
Wallets shouldn’t be so hard to buy! While searching for a nicer wallet, I’ve found that many are tiny. A whole bunch of them don’t have space for bills, and/or don’t have a clear window for ID, etc. Many don’t hold more than 5 cards. I’m no credit card demon, but almost every store one shops at now has some kind of loyalty card involved!
Perhaps not carrying loyalty/reward/discount membership cards is also a status thing? I suppose that fits the pattern established.
We are getting out of the habit of holing up in our “Fortress of Solitude”, and aiming to be more social. While that has led to more going out to events *with friends*, the big change has been going out more just us + strangers. We recently went to an event for Canadians living in Minneapolis, and met people! We’ve also been going out to the theater, which has been fun.
It’s kind of amusing to me that the social stuff has been far less stressful / less effort than figuring out the handbags/shoes thing!
To be fair, though, I’ve spent a lifetime observing neurotypicals. I’ve paid attention to their behaviours, social norms, etc. For the most part, I can sort of blend in on that front, now… though I wish I’d paid attention to things like “how do you carry a purse?”!
So, I’ve been focusing on honing my reactions to people online – quite the task, given the current political climate. I’ve gotten a lot better about measuring my responses, and just keeping my mouth shut in certain instances. I’m waiting for my husband to get sick of my “LOOK AT WHAT I RESTRAINED MYSELF FROM REPLYING TO!” messages!
… So, that’s about where I’m at right now.
The next two areas to tackle are clothing (suits, ack!), and nails. I’m a “short nails, no polish” kinda person. I don’t see the short nails thing changing (even though I know long nails are a professional/feminine thing), but I have resolved to try nail wraps. Perhaps that would solve my problem of chipping polish almost immediately.
Overall, I’m finding it really amazing to me how much I have to actively work *against* comfort, to project an image of professionalism. Uncomfortable shoes and handbags that hamper mobility. Restrictive clothing that requires MORE care than just normal laundry. Nail length that restricts activity, polish that doesn’t hold up to working hands.
To go to work, you’re expected to maintain an image that actively hampers work. To show that you can do a job, you have to employ attire and accessories that eschew comfort and hamper your stamina and focus.
We are a truly bizarre species, aren’t we?
Earlier this week, I had to go see a doctor about an ear issue. As they asked me “On a scale of 1-10, what is your pain level”, I struggled to provide an answer they would understand.
After over three and a half decades of life as an autistic woman, I can honestly say that one of the most frustrating things about life on the spectrum is the lack of shared frame of reference between autistic people and neurotypical people. Many/most people tend to think of their views as being the default, and have no idea what others live.
We’re guilty of it too, of course. Neither my husband or I had ANY idea that most people don’t feel their entire digestive system / process happening. We weren’t really aware that – much like the variety in sensitivity to smells, for example … people can have wildly different levels of interoception.
Interoception is your internal sense, your awareness of what’s going on with your body. Hunger, thirst, temperature, and more.
For most people, interoception covers the basics: Tells you when you’re hungry, lets you know when you’re getting sick, alerts you of the coming need to find a washroom.
For some autistics, interoception is muted: They don’t get the same feelings until much later in the game.
For others, our interoception is hyper sensitive. We feel EVERYTHING… and it’s really annoying. Where you feel “hungry”, I can feel when I’ve specifically not had enough animal protein lately. (It’s a terrible, full-body feeling. It feels like every cell in my body is sluggish and dying). I can feel when I’m low on iron, before it dips past the low bar of “acceptable”.
Think of it like the dashboard of a car.
For the most part, it will tell you when you need to top up your oil, how fast you’re going, etc. It lets you take good care of your car, without overwhelming you with unnecessary information.
For those with less sensitive interoception, it would be like having a car where the sensors don’t tell you that you’re running low on oil until you’re basically on fumes, and about to blow your engine.
For those like me, it’s like… having a car where all of the sensors are WAY too sensitive. You hit a small bump in the road, and it sets off, say, the O2 sensor.
Unlike the earlier two examples, however, the hyper sensitive interoception wouldn’t be akin to the warning light blinking on for a few seconds. It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.
Take pulse, for example. That’s another instance of assuming that my experience is just the default – I had no idea that most people aren’t *constantly* aware of their pulse. I hear and feel my own constantly, whether it’s running low or high. I don’t have to think about it, it’s just there – like slightly too-loud background music.
The problematic thing is that I am also hyper aware of tempo and force with it. If my pulse goes up or down by even 3-5 BPM, if my blood pressure rises or drops a little, I can sense that change – and the warning lights go off. I understand that those with normal interoception can feel their pulse “racing” when it happens – as a result of strenuous activity, for example. For me, an uptick of even 5 BPM comes off as “racing” to me, even when it’s completely within the normal, healthy pulse range. It’s… distracting.
I’m not even sure I’m explaining this in a way that makes sense, because I don’t have a ton of frame of reference on life as a neurotypical, beyond conversations that I’ve had with friends. Fascinating conversations happen, when both sides discuss “what is this like?”, “How does X feel to you?”, and “If you can feel Y, then what about ….?”. I learn a lot from such conversations.
Think about it … how would you describe a colour – or even explain the concept of colour – to someone who has never had vision before? Conversely, how would a person who was born blind explain their concept of sight /lack thereof – never having had it – to a sighted person? It would be very difficult.
When neurotypicals encounter autistic people with sensory issues – particularly from what I read of parents of autistic children – there seems to be this feeling that autistic people are being babies or drama queens, over sensory overload. There isn’t a lot of effort put into understanding that we just tend to feel things differently.
Now don’t get me wrong, I am 100% OK with being autistic, and I appreciate the “gifts” I have. I put many of my autistic traits to good use. As an Aspergian female – with a keen sense of pattern observation, to boot! – I enjoy a HUGE amount of “pass privilege”. Most people have no idea that I’m on the spectrum when they meet me – though this was certainly not the case even 15 years ago. (Observation, empathy, and pattern recognition put to use in understanding NT ways!).
As soon as I get even a tiny amount of fluid behind my eardrum? All of that “passing” goes right out the window. I am never as visibly, stereotypically autistic as I am when there is something wrong with one or both of my ears – and I cannot help it.
I am 100% aware that my experience of ear issues is completely different than the average neurotypical experience, and that my outward appearance from it definitely comes off as “weak” or “crybaby” or “drama queen”. My neurotypical friends go to work when they have ear infections! That will never cease to amaze me. I’m so terrified of the *possibility* of an ear infection, that the slightest twinge in my ear – feeling like there could be an oncoming issue – is enough to send me into a full, anxiety-ridden meltdown.
I’m not an anxious person. I can deal with major stresses, no problem. I have weathered storms many people will never see – literally even (Tornado!). I may actually thrive on stress, for that matter – I get things done.
I’m also not a wimp, physically. When I was younger, I refused to let a doctor put a cast on my broken ankle, because I had a VERY important (to me) skating competition that weekend. My skates were stiff as bricks, after all – so I figured I’d be fine. I was – I landed my Axel, on that broken ankle… and used crutches while not actually skating. I went in to get it casted up the day after the competition. Smart? Probably not… but I think it does speak to my ability to deal with pain.
Similarly, I’ve landed a botched death drop in such a way that I stabbed the heel of my blade into the palm of my hand, deeply… put a thick glove on and went out to try it (the spin, I mean) again. I have sliced myself wide open, broken bones, pulled and torn muscles. I had a back injury after a car accident that was bad enough, I was told I’d “never walk properly again”. It took a LOT of painful work, but I rehabbed THAT one.
My ears, though… are my Achilles heel. Anything “off” about them is my Kryptonite. I’m not even talking about a full blown infection – which, as I understand it, even NT people feel as actual pain. I’m talking about the subtle, non-painful stuff.
Right now, I have a “small” amount of fluid behind my eardrum. The doctor was very “whatever” about it, it’s no big deal. From all I can tell from neurotypical friends / those with less sensitive interoception, that’s an understandable reaction – that it’s a mild annoyance at best.
It’s not fully clogged, I haven’t lost MUCH hearing (it’s definitely muted slightly), there’s not even enough water that I can hear it sloshing. It’s not even that full/popped feeling you get from changes of pressure. I can absolutely understand how – to those with less ridiculous senses – this would be no big deal.
… but it’s driving me nuts. If you were to have a pillow smothered over your nose and mouth, that’s kind of what it feels like in my ear – complete with the resulting panicky feeling. The AIR feels different in that ear, and I am all too aware of it. It’s off balance from what the other ear is experiencing. While it’s not actually affecting MY balance, the lack of symmetry in ear sensation is tripping my “warning lights” terribly.
… but it’s not PAIN.
The thing is, there is a word for “pain”, and there is a scale for it. Sure, my 5 may not be YOUR 5, but at least we can try to plug in a number based on our perception of 1 and 10.
… there isn’t such a term – or scale – for what drives me to freak out about my ear.
When the doctor asks me “1-10, what is your pain level?”, truthfully, it’s a 1. If I say “1″, he has no sense of the urgency I have to fix this, how absolutely unacceptable the sensation is. People don’t curl into a ball and cry their eyes out over a “1″, after all.
If I translate it into “1-10, what is the level of unacceptability here?”, it would be a 9 or 10. I can’t ANSWER with 9 or 10, because pain is a very specific concept, and he would take that 9 or 10 to mean something VERY different than what is going on.
I have to wonder how medical care of autistic people suffers, because of this break in experience / frame of reference. I’m verbal, and I like to think I’m fairly articulate. I spend a lot of time thinking about stuff like this, and put care into explaining it – but not all people on the spectrum are, can or do. My “bridge” to the NT side of things is fairly well developed, because I’ve been able to put a lot of observation, thought, and effort into it. Not all Autistics enjoy the same level of.. NT fluency?
The reason I write this, is because I’m hopeful it can shed some light on what life can be like for people like me, and hopefully prompt some understanding and empathy for autistics that have a rough go of things.
Remember, though, interoception is only ONE sense, as systemic as it may be. Many of us have multiple senses that are overdeveloped – taste, touch, sight, hearing, etc.
Going back to “It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.” … that’s for just the internal sense. Imagine living with that as your reality, while ALSO being exposed to external stimuli, while experiencing it at a higher sensitivity than most. The sound of an automatic door or grocery conveyor belt that is slightly out of balance can be physically painful, feeling like someone is drilling your brain. Fluorescent lights can be similarly painful.
When your senses are hyperactive, you can have that level of stimulation coming at you from not only multiple outside sources (for example, a HELLISH Cub nearby has the door, conveyor belt, AND lighting issues happening all at once), but internally.
When you see an autistic person having a meltdown, know that there is a very good chance that this is the reality that we are living with.
Everyone is different, the levels to which we experience things are different, and even the triggers are different (for example, mid range tones bother me more than my husband, who is more sensitive to certain frequencies of high pitches than I am. )… but when sensory overstimulation is an issue? Well, it could be something very different than what you experience in your own life.
Not only is this relevant to the time of year – colds/flus/seasonal allergies / hellish barometric pressure swings / etc – the holidays are coming up. With all of the extra smells, lights, noises, etc that the holidays bring… please be kind to the autistic people in your life.
Links to My Previous Posts on Autism
With the official release of Hedonistic Hops just a week away, I participated in an author interview yesterday… and subsequently kicked myself for one of my answers.
The question was something like “If you were stranded on a desert island, what 3 books would you want to have with you?”.
Without hesitation, my reply was “A book on tropical plant identification, a book on survival skills, and a book on primitive boat making”.
Hours later, it hit me that I may have answered the question, but managed to miss the spirit of the question – that they were likely framing “what are your favourite books” in a whimsical manner. I guess I was so focused on the idea of being stuck on a desert island, I went straight to the most logical answer… rather than indulge in whimsy.
I fussed about it a bit online: I categorized it among “social missteps”, which – as an Aspergian adult – I’ve been trying to be better about. My friends were very nice about my gaffe, making comments about how they appreciated my literal interpretation, etc. A comment was made about “Spock level logic”.
How fitting it is that just a few short hours later, September 8th hit – the 50th Anniversary of Star Trek.
As everyone I know seems to be pouring their hearts out about what Star Trek has meant to them, I figured I should do the same!
My introduction to Star Trek came from an unexpected source: non-geek bullies.
Though I wasn’t diagnosed till my mid teens – and there wasn’t even a name for it in my early years – my Aspergers didn’t go unnoticed by the other kids I went to school with. When I was very young, the other kids called me “Spock”. I had no idea what that even meant, until I watched Star Trek. Though it was used in a pejorative sense – as a slur against my being “different ” – I took it as a compliment. This was a character I could relate to!
There was no representation of people like me in the media in those days. While he may have been a pointy eared alien, Spock was the very first “person” I was ever able to relate to – on screen or otherwise. I guess that him being an alien is appropriate enough, having always felt like I’d been dropped off on the wrong planet! (Which I now know is a common feeling with Aspies).
I have no idea where to even start with describing what that’s like. There was no social media back then, there was no one “like me” in my elementary school, no one like me on TV… Except Spock. Kind of a little glimmer of hope that I wasn’t a complete freak, I guess? At the time, I rationalized that… Sure, he may be a fictional character, but SOMEONE came up with him. One way or the other, the Spock character gave me how that there were other people like me out there. It was a BIG DEAL… one that I can’t accurately put into words.
On the subject of “representation matters”, I always appreciated how diverse Star Trek was. I appreciated that there were all these characters of different backgrounds, races, even SPECIES… just working together.
As I grew a bit older, I came to notice and appreciate that the diversity I so loved about the show was so… organic. That it was written so naturally, and not in a “Look at us! We’re being so EDGY!” kind of way. I appreciated that this show – one that was almost a decade and a half before my time – put this vision of the future out there. It was… hopeful.
|As I grew older yet, I met my “tribe” in the Geek community – many of whom are Trekkies. I have friends that I met as Klingons first, and “Klingon” is how I think of them. I suppose some of them might feel the same sort of way about Klingons, as I did – and do – about Spock.
I met and married a man who not only agrees that going to see “A Klingon Christmas Carol” is the only really acceptable holiday tradition for us, but was RIGHT there with me when Leonard Nimoy passed – leaving work early and instituting “grief sushi” as a thing. Nimoy was the first and only celebrity passing either of us cried about, and we were both pretty traumatized by the surprise meeting of Spock Vegas just a month later. (Though he seems to be a lovely man!)
Oh, this is getting dark. I guess it’s hard for me to talk about Star Trek without the fixation on Spock- and Nimoy, by extension. Neither one of us are what you’d consider “Trekkies” – we’re casual fans, in general. We haven’t seen all the series, though we enjoy the movies, and enjoyed TNG as children. We enjoy the enthusiasm of our Trekkie friends, for sure! (I will admit to having been SO pissed off at how they killed of Tasha Yar, that I stopped watching. LOL)
Anyway. In the past years, autism has come to be slightly better represented in the media, so I am very happy that kids of today have non-alien, “real” characters to look up to: Gary from “Alphas” (Ok, he’s a mutant, but STILL), and Connor from “Degrassi” (The most accurate representation I’ve ever come across), for example.
… but I will always be thankful to Star Trek, Gene Roddenberry, and Leonard Nimoy in particular for giving me the gift of Spock, and the gift of … relating.
I’m thankful they’ve given that same gift to other friends of mine, whether as Klingons, as women, and/or as people of colour. It’s a beautiful thing, and definitely a show – and milestone anniversary! – to be celebrated!
So, Happy 50th, Star Trek! May you continue to Live Long and Prosper.
PS: Also, thank you for making William Shatner famous. That man is a national treasure.