Obsessions, “special interests”, and BBC Sherlock

When you are neurotypical, people call the things you love “obsessions” and they think it’s cute.  When you are Autistic, people medicalize your passions and call them “special interests”.  And when you talk about your special interests, you are “infodumping”.  I know plenty of neurotypical people who do this, who infodump about their favorite character on TV and why they love them.  But somehow, it’s a problem when I do it.  When I infodump, it’s a “symptom” of my autism, not just me sharing something I love.  I suppose the difference lies in the fact that oftentimes, I can’t read when someone is disinterested, so I keep talking and talking until they’re frustrated with me and downright bored.  I’m sorry for that, but unless you tell me, I don’t automatically pick up on it most of the time.

So I’m going to talk about a few of my favorites – characters, TV shows, etc. in media and why I find them amazing. I was planning on this being just one post, but well, I infodumped and this became quite longer than I meant it to be.

Sherlock Holmes.  This particularly relates to the BBC version of Sherlock (which, hint, hint, is on Netflix, and you should watch if you haven’t already).  I am also enjoying Elementary, the CBS drama with Jonny Lee Miller and Lucy Liu and think it’s fabulous in a way that other adaptations are not.  But Sherlock is what drew me in to Sherlock Holmes — a love that had been pretty stagnant for a good decade and a half, when I last picked up the books.  But Sherlock was a new, modern day adaptation and you know what? Even though it was easy to see myself and the non-neurotypical ways of Sherlock Holmes’ brain in every adaptation, even from the original stories, this was positively glaring. There was absolutely no way for me to watch BBC Sherlock and not see myself reflected. Later, when I read articles about how Benedict Cumberbatch deliberately played Sherlock as  “slightly autistic, perhaps a bit sociopathic” (the latter a hugely problematic term, but a redeeming one when the term is used somewhat sarcastically in the show itself), I could not contain my glee.

(A side note: Benedict himself is not immune to being ableist, which I want to lay out here at the outset so no one thinks that I’ve idolized any of the actors here.  Please read here for more information regarding Benedict’s foot in mouth/ableist commentary, and be warned that profanity is abundant at the link, if that sort of thing bothers you.)  

I saw myself on screen, in Sherlock’s movements, his social gaffes (oh, poor Molly Hooper; I hurt for her, but know that I’ve been exactly that oblivious more than once), his sharp, too-blunt tongue, and simply, how his brain works.  I still regard the second episode of the second season, The Hounds of Baskerville, to be by far my favorite episode for a number of reasons.  First, though this segment of his acting was highly criticized (by mostly NT fans, I’m sure), Sherlock has a meltdown when he isn’t sure how to deal with what he’s seeing vs. what he knows to be true.  Fans criticized him for being too emotional for Sherlock, and I think if you view him from an NT perspective, I can see where they’re coming from. But this was every bit a panic attack or a meltdown (I see it as the latter, but if you see him as differently neuroatypical, as in not autistic but still not NT, it could be classified as a panic attack), and I think it’s very important to note that it’s a very good representation of how non-autistic people sometimes react to us when we are in the middle of a meltdown.  Sherlock sets boundaries, and John Watson tramples all over them. I have gone as far as to call him a “bad ally” and have been fairly demonized in the Sherlock fandom because of that.  But I digress.  In addition to that instance, this episode brought us as close to a canonical diagnosis as I think we’ll ever get.  Sherlock reacts rather oddly to seeing Lestrade at Baskerville, and to me, that seems as close to face blindness as we’re going to get.  I don’t think Sherlock is face blind by any means, but seeing someone out of context could be somewhat startling regardless.  Sherlock reacts by calling Lestrade his “handler” (which could certainly be code for “caretaker” or someone that is sent to watch over him). A few moments later, the following dialogue (transcript source here) occurs between John and Lestrade when they believe Sherlock to be out of earshot.

JOHN: You know he’s actually pleased you’re here?
(Greg throws him a disbelieving look.)
JOHN: Secretly pleased.
LESTRADE: Is he? That’s nice(!) I suppose he likes having all the same faces back together. Appeals to his … his …
(He stops and searches for the right word. John provides an appropriate suggestion.)
JOHN: … Asperger’s?

There were mixed reactions to this particular revelation.  I myself positively screeched in excitement when the word was first uttered. Later, when I thought back on it, I sort of felt a little sick to my stomach.  Not because of the word.  There is nothing to be feared about the word Asperger’s or autism for that matter.  It isn’t even that the media seems to get things wrong regarding the diagnosis.  The problem lies in who said the word.  That character was John Watson.

John Watson should know better.  John Watson is a doctor, and should understand to respect his friend’s privacy.  He refers to Sherlock as his friend several times throughout the series, and Sherlock eventually in this particular episode, confirms that John is his only friend.  John and Lestrade are literally talking about Sherlock behind his back.  Everyone knows he’s different.  Sally Donovan, as much as I like her and thinks she has potential as a character (though we will unfortunately probably not see her character receive the treatment she deserves, which is not to be villainized) from the first moment we’re introduced to her calls Sherlock “freak”.  He knows he’s different, and so does everyone else.  When I thought about the conversation between John and Lestrade, my heart sunk.  Because it felt like being outed.  It felt like someone saying, “oh by the way, he has this diagnosis”, which shouldn’t be revealed to other people by someone else, but by the person who is most affected.

I would also like to talk about how Sherlock is treated by the other characters at large.  There’s Mycroft, who is his older brother, but who, to me, acts more like a parent.  We don’t know their backstory, but I suspect he behaved as more of a parent than either of their actual parents.  And as someone who is only seven years older than Sherlock, I can’t imagine their childhood was at all very pretty.  I believe that Sherlock probably was forced to behave in a neurotypical way, even though he was clearly anything but.  Privileged, of course, and wealthy, yes, but certainly that doesn’t erase the way he was likely treated.  Lestrade, I think, is more of a father than any of the characters, and behaves in a guiding Sherlock onto the right path sort of way.  I dislike the following line, but I think it paints a good picture of how Lestrade sees him:

“Sherlock Holmes is a great man.  And one day, if we’re very very lucky, he might even be a good one.”‘

John treats him alternately like he is brilliant and perfect and like he is terrible for some of the things he says.  I think as their friendship progresses by the end of season 2, he is much more understanding and even guides him socially (which can definitely be seen at the beginning of The Reichenbach Fall, when he says things like “say thank you” and the like, when Sherlock is bemused by a gift by the fact that he doesn’t, in fact, wear cufflinks). But we have the fireplace scene in Hounds, where John oversteps his boundaries.  Sherlock repeats “leave me alone” several times, and John blatantly ignores him, and ignores all the signs that Sherlock is afraid, and on the verge of a panic attack (or meltdown, whichever you prefer).  He’s shaking, sweating,eyes watering, lip quivering, breathing hard, trying to calm himself in any way possible.  His hand trembles with a glass of something (we’re meant to assume alcohol, I believe) in his hand, And John tells him to “take it easy”, calls him “Spock”, and eventually, when Sherlock says “I don’t have friends”, John says, “I wonder why”.  And the next morning, when Sherlock apologizes, we’re supposed to accept that as some sort of good thing? Instead of being called on his slut shaming behavior toward Sally in the first episode, or his blatant disregard for police procedures, or the cruel things he says intentionally, we’re supposed to think it’s a victory that Sherlock apologizes for lashing out in the middle of a meltdown.  Well, all right then.

There is talk in fandom that John Watson makes Sherlock Holmes “more human”.  The final words that John Watson says to Sherlock Holmes before his faceoff with Moriarty on the rooftop is “You machine”.  There are graphics about how Sherlock Holmes is the mind and John Watson is the heart.  And I get how it’s easy to do.  John Watson is quasi-neurotypical.  The only mention of his PTSD is in episode one, and then it’s never spoken of again.  John is understanding, and though he’s strong, he is also fairly good with social graces.  He smooths things over, makes things easier for Sherlock.  He speaks to Mycroft, Mrs. Hudson, and Lestrade about Sherlock, trying to make sure things are okay for him.  I understand what it means to have a friend like that, one who is as much on your side as a non-autistic friend can be.  I don’t expect John Watson to be perfect.  I really don’t.  But I want the fandom at large to recognize its treatment of John Watson as some beacon of light who makes Sherlock more human, because that phrase is so, so damaging to autistic individuals.  Sherlock is expected to apologize for being himself.  Not for horrible actions – no, that’s not what he’s criticized for by the other characters.  No one has, thus far, talked about how horrible what he did to John in another scene from Hounds was.  It was horrible, and sneaky and abusive, and no one is talking about it.  But everyone focuses on “I don’t have friends” and how much he hurt John’s feelings.  Funny, no one seems to be so reactive when Sebastian Wilkes says “We hated him” to John in The Blind Banker, referencing how he and his classmates regarded Sherlock.  This is said in Sherlock’s presence, as though he’s not even there.  Here is a good post about legitimate criticism vs. criticism for neurology.

Sherlock Holmes, as a character, is human.  He does not need to prove it by acting neurotypical.  He doesn’t need John to help soften his heart and make him more emotional, and have emotional = more human.  And let me be frank – Sherlock is plenty emotional.  I wonder when people say that he’s entirely cold and emotionless what show they’re watching, because the one I’m watching, and have watched dozens of times, depicts Sherlock as quite emotional, but someone who hides it well.

I relate to Sherlock Holmes.

I can relate to the mind palace idea, and have done something like it myself.

I have an eidetic memory to some extent, and on bad days, my cognitive function is at least intact enough that if I can’t remember what I’m trying to remember, at the very least, I know where to find the information.  I know what the page looked like where I read it.  I remember some association to where it is, even if it’s not something I’ll immediately be able to find.

Sherlock (or perhaps, just Benedict) stims just the way I do.

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I often ask what Sherlock asks his brother in A Scandal in Belgravia:  “Do you ever wonder if there’s something wrong with us?”

It is difficult to be an Autistic fan of Sherlock.  That isn’t because it’s difficult to relate to him, but it is difficult to hear some of the things fans say.  And then we have things like this, where a non-autistic panel of Sherlock fans, and a psychologist proclaim the following:

And he doesn’t have Asperger’s by the way, he can read people better than anyone else, and–

People who have Asperger’s can’t read social cues and have trouble reading people’s emotions. When Holmes comes into a room he can tell you who’s sleeping with whom for how long, and who likes whom and who doesn’t like whom and who’s lying and who’s not, I mean, who is a better reader of faces and of people than Sherlock Holmes? I don’t know of any.

Reading people is far different from deducing facts from someone’s appearance.

Melinda: People on that spectrum wouldn’t be able to see Helen Stoner [Speckled Band] and just be immediately calm her down, they would exude this sort of like, “I am sympathetic to your cause I’m gonna take care of this.”

Maria: Yes! And, I mean, also note how kind he is, he never takes payment from people who can’t afford it, he’s really, even though he says he only takes the cases that challenge him, he’ll take a case when people appeal to him on a human level. And he’s the first one to give people a second chance and to be more sympathetic when Watson’s like “whoa, that guy’s a bastard, did you hear how he talked about her?” and Holmes is like “cut him some slack, Watson.”

So, there you have it. Autistic people can’t be kind.  We can’t be sympathetic.  Because a psychologist said so.  Because one of the Baker Street Babes said so.  The owners of said podcast and I exchanged some inbox messages on Tumblr, and in the end, I ended up not posting or responding to most of them, in part, because they did just what they criticized in their Hounds of Baskerville podcast – they outed one of the people associated with them as being “on the spectrum”.  It seemed a bit too convenient for me, and really really crappy, as I’ve said before.  It also reminds me of Kassiane’s post here. IDing as autistic or on the spectrum is not a get out of jail free card, and I find it far too convenient that the opinions of Autistic folks, in this case, Autistic fans of Sherlock, are dismissed so easily by just one phrase: “well, I’m autistic too”, as though that somehow erases the way that folks treat the character of Sherlock, as though he’s some “problem” to be handled.  As though there’s no way he can be autistic because he’s “too kind” and “has emotions”.  This is damaging to real life people.

When you talk about Sherlock not being human, or being a machine, or any variation thereof, you are dehumanizing people who possess a similar neurology.  Who are abused.  Told that we have no emotions and it’s okay to do x, y, and z therapy to us because we can’t feel anything anyways.  Here are some more thoughts on dehumanization of Autistic people.  Here, here, here (Trigger warnings on all three links for dehumanization, institutionalization, abuse, murder of disabled people).  People often say “it’s just fiction.”  Nothing is “just fiction.”  Representation matters, and when we talk about a character who many many Autistic people identify with a character as being just like them,especially when there are very few just like them characters on television, dismissing that is harmful.  Here is a really good post (dissecting The Baker Street Babes issue far better than I did) about just that.

I will write another post about Elementary because it is very different from Sherlock and I don’t think that the two should be compared.  But I did want to touch on one thing.  There are many people who call Jonny Lee Miller’s Sherlock “more human” or “more relatable” and that’s not cool.  There have been a few posts on Tumblr about that.  Here, here and here.  Thankfully, it seems like the Elementary fandom is far more understanding and their responses to “hey, that’s not cool” tend to be “I’m so sorry; I didn’t realize how harmful that is” rather than the reactions of the Sherlock fandom.

I think that might be enough infodumping for one day.  I leave you with what I consider to be by far the best series regarding Sherlock on the internet, and that’s The Slumber of Feelings: A study of autism and BBC Sherlock, which was written mostly before series 2 even aired, but hits every point about how I feel about BBC Sherlock and the fact that he is, indeed, very much Autistic.

 

Autistic people should…

Today is flash blog day! Autistic people like myself were asked to complete the phrase “autistic people should…” This is in response to the current Google autocomplete searches for those phrases, which are, to be kind, problematic at best, and downright triggering at worst.

So here’s mine.

Autistic people should exist.

That seems really simple and obvious, doesn’t it? I mean, I’m sure even now, there are some of you scoffing at the idea that anyone would wish that we didn’t exist.

But it happens.

It happens too much.

When we hear talk of a cure for autism, we don’t hear “help treat the more distressing symptoms that often accompany autism (but may not be linked at all)”. We hear that you don’t want people like us to exist. You advocate for research, but you leave us out of the conversation and we are erased. Autism isn’t something that exists; it’s a thing that happens to our parents.

I refuse to accept that.

I exist.

My children exist.

My friends exist.

Autistic people around the world exist.

And you are barking up the wrong tree if you think I’m going to sit back and let you wish people like me out of existence. You may have the power, but I have a loud voice when things matter. I will make my voice heard.

I deserve to exist.

I deserve to be respected for who I am.

I deserve to not hear ableist rhetoric multiple times a day about how “tragic” my life supposedly is – or better yet, how “tragic” my parents’lives are because I exist.

My neurology is not a tragedy.

I am a mother, an educator, a writer, a singer…l am all of those things. But I’m also Autistic, with a capital A.

I exist.

I deserve to exist.

Autistic people should exist.

Simple, no?

You’re not really an ally

Trigger Warning for pro-Autism Speaks arguments, silencing of autistic people, and curebie rhetoric

You’re not really an ally if you ignore and silence Autistic people.  If, when you ask for followers to tell you the pros and the cons of Autism Speaks, you say that the Autistic people didn’t give you “rational” arguments, ignoring the fact that some of your followers triggered me into a near non-communicative state, well, you’re not an ally.  If you threaten to shut down the conversation if things get “out of hand”, but don’t shut it down for oppressive, bullying comments by the parents and only shut it down when a number of Autistics begin to argue against those points, you are not an ally.

Earlier this week on the Ink4Autism page, several Autistic adults posted a link to my “Why I am Against Autism Speaks” article that I posted on Tumblr just about a year ago.  Because of this, the page opened up discussion as to why Autism Speaks isn’t the best organization for supporting actual Autistic people. (Just a bit of background: Ink4Autism is a group of tattoo artists who are sending the proceeds of their inking to Autism Speaks for the month of April).  After about 12-14 hours of discussion, the discussion was closed.  You can read the entirety of the discussion at the link above, but I’m going to quote a few gems (leaving out the names, but the discussion is on a public page, so you can go to the above link for more).  

Could be internet trolls just trying to get our panties in a bunch….relentless little f’s

 

This was in response to why people sent information against Autism Speaks.  Because instead of listening to Autistic adults, we’re just “internet trolls”.

 people may not like the word “cure” but I am sorry. I want my son to speak, i want my son to not be looked at differently, I want my son to be able to tolerate noises, I want my son to be able to do alot of htings he cant do because of the autism in him. I love him with all my heart — we all love kids to death but if they can find a pill for people with depression, dementia, personality disorders, and so many other things to aleviate symptoms…maybe not “cure” it. Why not hope for one where a child can suddnely speak, a child can look you in the eyes and say I love you. May not want to say “cure” but……

 

Because accepting the child you have and helping to expand their abilities through support rather than trying to therapy them into looking like they’re neurotypical is just too much to ask? Because eye contact and verbal communication are the end all? 

 I think any organization that brings awareness about Autism is awesome. I do not want a cure for my son, but I sure would like to know what causes Autism and I would LOVE to spread awareness to others. Autism Speaks does that. My son is high functioning, but it is HARD, and I love that there is multiple resources available to me.

 

I find it interesting when parents bringing up the “cause” argument. Autism is not a disease.  It doesn’t need to be “treated” (except with respect, support and understanding).  So why do we need to know why it exists? I am certainly not anti-science. I just don’t see what good spending all this research money on a cause (and thereby developing a prenatal test to screen for autism) when there are plenty of autistic people here right now who could tell you what the issues we face are, and how to mitigate those.  I have a few ideas.  Ask me.

 One of the greatest achievements of Autism Speaks, which I haven’t seen mentioned yet, is their efforts to get proper insurance coverage in every state for autism therapies. They were essential in the fight for military families, who fall under federal law, to gain autism coverage as well. Without their lobbying and organization, none of this would have been possible.

 

This was a “pro”.  This was something they see as good.  This is something that they see as helping autistic children and their families.  Please read The Cost of Compliance is Unreasonable. I am not in favor of ABA, though I have utilized ABA therapists for educational purposes when our school district failed us.  I have been very careful about who I allow to interact with my child and how they do so.  Here are a few articles on why ABA isn’t a good thing (besides the one above, which if you haven’t read, you need to).

The Truth about ABA (references abuse and aversives). 

An Open Letter to Families (very explicit references to abuse)

What They Should be Talking About 

are you saying a parent can’t decide for a child and that we need to wait for a child to become an adult before a decision/contribution can be made? What about the non-verbal? Should they have an advocate speak on their behalf?

 

Oh Lordy.  This one got me.  No, a nonspeaking person does not necessarily need an advocate.  They may need assistive technology and support, but they don’t need someone to speak over them.

Listen, I’m all for folks expressing their opinions.  I promise.  I’d rather know what you really think, what you really believe than have you lie to me.  I want to hear different viewpoints, and trust me, my own have changed over the years.  The thing is, non-autistic parents of autistic children have their voices listened to almost constantly.  Autistic people have to fight every single day to get someone, anyone to listen to us.  Let me give you a sampling of some of the thoughts voiced after the discussion on the Ink4Autism page.  

 Pick the organization that fits you the best. Nothing is stopping the complainers from doing something to raise money for their org of choice. But I guess it’s easier to criticize the person trying to make a difference than it is to actually DO something. Keep up the good work and thank you raising awareness. After seeing your page, I got an autism tattoo last April. That tat has sparked many conversations that have made my Aspie’s life a little easier.

 

 

To the people who aren’t happy with that choice… Go and start your own page supporting the people you want to. If you’re giving money to a registered charity on the street you don’t tell the person holding the bucket ‘I’ll only support you if you change charity’. You either support them or you don’t, the choice is yours.

Back to Ink4Autism, you can’t please 100% of the people 100% of the time. What you can do is believe you are doing a great thing. Any work done towards raising awareness is amazing and helps our community. You are doing something for nothing and you’re doing it with grace and style. There aren’t many who are brave enough or driven enough to do what you do. Don’t let this bump in the road bring you down, it’ll pass, people will move on and you’ll still have something great in your life story.

 

 Don’t let these people get you down. You’re doing a great thing. And I’m very proud to be one of the artists doing work to help the cause. Keep up the good work.

 

And there we have the othering.  “These people.”  Instead of talking about us like we matter, we’re just “the other” who are asking for far too much or just stirring up trouble, rather than raising legitimate concerns about an organization that really does actually hurt us.  

 what really matters is that we are all at peace with our choices and decisions regarding our children and our support. Each and everyday I know I am doing exactly what I am suppose to be doing for my child and my community, thats a wonderful feeling.

 

Actually, it does matter.  It DOES matter which organization you choose.  Would you rather donate to an organization run by people who actually are Autistic, or an organization that seeks to eliminate people who are? The answer seems kind of simple to me, depending on what your aim is.  If your aim is to never again have another person like me born,who tells you that autism is a tragedy that should be prevented and that we need to “fix” autism (i.e., make them “look neurotypical”), well, I suppose then Autism Speaks is your best choice  If your aim is to support Autistic people who exist and live in your communities, I definitely think The Autistic Self Advocacy Network is your best bet.  

I wrote the following post on the Ink4Autism page the other night, and I continue to stand by it (please forgive grammar errors; I had been rendered nonverbal and was very close to complete meltdown mode).

Dear Ink4Autism, I want to tell you that I’m grateful that you’ve opened up the conversation about Autism Speaks. I am the author of the attached piece, which I see has been widely shared here. http://goldenheartedrose.tumblr.com/post/17644810872/why-i-am-against-autism-speaks-made-rebloggable-by

I want to say one thing, and that’s your words are one thing. Saying that you’re listening to autistic adults like myself is one thing. Your actions are another. I am certain that there are a good number of us who will see what comes of this discussion. It is one thing to allow autistic people to have a voice in the discussion (and really, it isn’t something that should be rare…mostly, we should lead the discussion).

If you or any of your followers think that we are self centered, trolls, or care only about ourselves, you’re dead wrong. We want to pave the way for a better future. For us, for our kids (I have two on the spectrum besides being autistic myself), for other autistic and otherwise disabled people. Are you aware that the rate of abuse of disabled people is 70%? And that autistic adults face an 85% unemployment/underemployment rate? This is now. This is what we face right now. Please consider that and I hope you drop your support for Autism Speaks.

 

What you do to actually help and support Autistic people who you are claiming to help and not simply their families to “deal with their burden” of having to deal with an autistic child is what speaks loudest to me as an Autistic person.  Not what you say you will do.  Not what your intent is.  What you are actually doing is what is important.  Think about that.  

 

On Functioning

I often wonder how most allistic (not autistic, but possibly still not neurotypical)/NT people define high and low functioning when it comes to autism.

Is it our communication? Does that account for simply being able to utter words or are social communication deficits acknowledged, too? How about if a person can be articulate on paper, but has little or not verbal communication?

Is it the ability to live alone/”independently”? Why is this only a factor for disabled individuals, not realizing for one second that we all depend on others, and why, though teased, my NT peers who didn’t move out of their parents’ home at age 18 weren’t ready to be independent, either, and that was okay for them, but concerning for me?

Is it the level of support we need? If we have parents/siblings/spouses who are willing to help, is that acceptable, but if we have to hire someone, do we automatically shift from high to low functioning according to allistic/NT standards?

I think, in the end, that we need to realize that we all have different strengths. My speech is odd but passable, and most people don’t realize that I was functionally nonverbal (but boy, could I sing!) until I was eight years old. I can’t make most phone calls without an extensive transcript of how the conversation will go and a list of phrases for an “out” if the auditory processing issues become too much to manage. I cannot go to certain stores because they are overwhelming and I cannot work with kids (who aren’t my own) for more than 5 hours without melting down or shutting down. I still find showering overwhelming and take quite awhile to dress myself as a coping mechanism for calming down from the showers that I must take. Schedule changes throw me for a loop, and though I do have a drivers license and do drive, I avoid it as much as possible and find I’m unable to do it at all in certain circumstances (if I’m tired and it’s both rainy and dark as night, I can’t do it). I have a BA in English and teacher’s certification in three additional subjects beside English, but I had trouble actually being a teacher – I found it difficult to come up with answers to wholly unexpected questions on the spot, and I taught in a very non-NT way that my ESE students loved, but my general Ed and honors students (save for the two kids diagnosed with AS and ADHD in the honors class) hated.

I prefer minimum wage or “easy” jobs because of the routine. I am lucky to be married to someone in the military who has a good wage, insurance,and job security. At nearly 32 years old, I am overqualified for most jobs and am fearfully considering studying for a second degree (this time in computer science) so I may have a career that will bring me more than the wages I currently receive and will, at the same time, provide me the routine I need.

There’s a statistic that 85% of autistic adults are unemployed or underemployed. That doesn’t surprise me in the least. Many jobs are inaccessible to me. I sure can write a blog, but few people want to hire the rocking, flapping, semi verbal woman who can’t make eye contact with any consistency, who still wears clothing more appropriate to the tween crowd.

Sure, I’m “high functioning”. To some people.

On Stimming and why “quiet hands”ing an Autistic person is wrong

Trigger warnings for ableism, abusive therapy, prevention of communication, and self injurious behavior (at the very end)

I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.

When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.

I could potentially go on and on about how my hands help me connect to a world that is often baffling to me, but I prefer to keep this explanation short and simple. Stimming is communication. Did you get that? Let me say it again, until it sinks in. Stimming is communication.

I recall reading, around the time I began to learn ASL, about D/deaf individuals who were forced into becoming oral, who weren’t allowed to use sign language. I would say ASL rather than sign language, but I’m not all that certain that the practice was US-centric. I recall being horrified, but not being surprised, because boy, did that sound familiar.

I was lucky (?) enough to have not received my autism diagnosis in childhood. I was 30 when the diagnosis was confirmed (though a professional suggested it at age 28). This meant that like many of my peers, I was treated as though any issue I had, any difficulties were a result of laziness or stubborness, not because the world was difficult to live in. I was lucky to avoid ABA and most other therapy, but that didn’t save me from well-meaning teachers and relatives who stilled my fingers, my legs, my body, sometimes even physically restraining me during a meltdown (though they thought of them as “tantrums”). These weren’t bad people. I won’t excuse their behavior, but there was far less known about autism at the time, and I doubt the treatment I received would have changed if I had been diagnosed at age 4, 9, 16, whatever. It probably would have been worse. They focused more on me when they felt I was drawing too much attention – to them, to myself.

I don’t recall being publicly shamed for stimming until I was a teenager. It was on a road trip with my high school choral group, and we had just performed for a church service (did I mention we were a private Christian school?). Afterward, we were seated onstage. I couldn’t look at the minister because of the overhead lights, so I focused on my fingers. I rocked and flapped a bit. I didn’t even notice I was doing it until afterward, when my choral director pulled me aside and scolded me, telling me I was “disrespectful” and “an embarrassment” to my school. I prayed that the ground would swallow me up, and I spent the night in my hotel room crying and feeling ashamed. And for what? For finding a way to deal with my overstimulation? For failing to live up to NT standards?

So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.

Sincere thank you to Brenda Rothman @ Mama Be Good for the inspiration to write this.

Final note: Please understand that this is not talking about self injurious behavior and redirecting that. I used to repeatedly bang my head against the wall until I discovered shaking it rapidly side to side worked just as well, providing the same effect. Investigate the cause of SIB and work to redirect to keep your kids safe. But don’t hold them down.