Routines

So one thing you should know about me as an Autistic person, and this might apply to others, but I don’t know that it’s totally widespread among the Autistic population, is that I am pretty tied to my routines. They’re essential to how I function in the workplace, and they’re essential to how I function at home  (the latter helps my kids, too – knowing what to expect on a day to day basis is important to them, too).  I don’t do well when they’re interrupted.

I work a really good job for me.  I’m the cook at a local preschool (that provides childcare and education to kids from 6 weeks old to 5 years old).  It is a far cry from my last job, which was very social intensive, and could vary quite a bit.  There were ways of doing things, but if something came up (like a bus full of high school athletes pulled into our parking lot, for example), we had to roll with the punches, as it were. But now, I spend a lot of time in my own space away from people, and a lot of my work is solitary.  I’m very set in my routines.  I’ve been there for just over two months and I have my own way of doing things and in my own order.

But as I cannot stay for 10 hours a day, and as we have an inspection coming up soon, they sent me someone to help with the order today, and to help go through what I need to focus on for the inspection.

This is good! But this is also bad.

It’s good because yes, I need the help in order to get everything in order, because this is the first corporate inspection I’ve had, and I need to know what to expect.

It’s bad because my brain is going “holy crap I don’t know what to do here because I have this way of doing things and now you’re moving stuff around and what if I can’t find things? And ack, why are you moving that around? It’s been there since the first day I worked here, and why are you doing that?”

Breathe.

I’m grateful for the help, I am.  I am just having such a hard time getting my brain to cooperate and believe that this is 100% a good thing.

Next time, I wish I had some notice.  Or I wish she would have come to me when it was spring break (like I had asked) when I could have stayed for longer because I had paid for childcare for the entire week, from 6am-630pm if I had wanted to stay that long.

But this interrupting me at 9:45 am, and again at 1pm, and moving things around and now I don’t have places for things I did have places for before? I don’t know.  I’m frustrated.

And it’s easy to go “@#$%# neurotypicals!”

But I know it’s not her fault.  It’s not even the office’s fault. It’s just that I need to be more explicit about accommodations and what I need.  It means that I need to say “you need to write down what you want me to do with these things” instead of them sending someone in to help.

Tomorrow is another day.  The order is put away, so hopefully she’ll just have some notes and I’ll get everything in order.

The world will not end because today, my routine was interrupted.  I will adapt, and I’ve told myself the truth – “you’ve dealt with worse.”

Who, me?

So its been several years since I first wrote my Autism Speaks post, which has quite a funny story behind it. It might never have existed at all had I not typed and re typed the same answers to the same questions over and over again. I’m kind of a researcher by nature and I was posting a lot of responses to people who wondered why I disliked Autism Speaks so much. I had some basic reasons, like “negative stereotypes, awful ad campaigns and pro-cure rhetoric” but knew there was more out there. So I did what came naturally to me –  I looked up their financial records, times they’ve come under fire in the news, read some op-ed pieces and other personalized accounts. So I decided, wow, if I put this all in one place, this could be really useful! People could have a post with all these links to further information about Autism Speaks so they could read more in detail.

My initial post was much smaller than the two that exist today. I’ve edited the first one quite a few times, adding and removing sponsors (yay Panera and Build a Bear! You rock!),  editing broken links etc.

I never would have guessed that so many people would read these two posts, that people would reference me in research papers, that I’d be linked in various op-eds and blogs. I’ve been linked in The Huffington Post, TIME magazine online and a few others and it’s mind boggling. Love Explosions ans The Diary of a Mom have linked me, and they have huge fan bases.

Because when it comes down to it, I’m kind of a nobody. I’m an autistic adult who works in fast food management and who cries at the end of their shifts a lot of the time. Who can’t focus or remember things a lot of the time, who needs medication to make it through the day without breaking down, who has hearing and auditory processing issues, but who does the best that I can because I have two kids counting on me. I’m just me. And I’ve never been really good at anything except maybe condensing information, which is what I’ve done with my Autism Speaks posts.  I’m thrilled and humbled and honored. I’m proud to have written something that matters to people. I get messages on Facebook and Twitter and Tumblr from fellow autistic people who tell me that they felt hopeless and broken until they realized that the negative messages and stereotypes that Autism Speaks and their ilk were perpetuating had a huge impact on the way they felt about themselves. It’s an honor to have been part of that self acceptance.

It doesn’t make it any less surprising.

The problem with Sevenly

Dear reader,

You may not know who Sevenly is.  You may not know why supporting them is a problem.  On the surface, they seem like a great cause.  Their mission, according to their website is

We believe people matter. We have found that there is no greater calling than to provide, heal, rescue, and serve the others. Ultimately, our desire is to move a generation toward generosity and an intentional love for others. Our overall purpose is driven from this verse found in the book of Matthew 22:36-40.

 

That sounds nice, doesn’t it? Also from their website is a short excerpt of what they do:

Sevenly is a weekly cause activation platform cause marketplace that raises money for the world’s greatest causes through the selling of unique and exclusive products. Some have even called us a cause crowdfunding platform. Every week (7 days) we partner with a new non-profit organization, raising funding and awareness that these organizations desperately need. we and create unique art and limited edition products that we sell exclusively on our website Sevenly.org for 7 days. For every product sold, we give that week’s non-profit organization $7. For example, if we sold 1,000 products, Sevenly would donate $7,000.

 

You may know that Sevenly helps victims of domestic violence, burn victims who need surgery, victims of bullying.  It sounds like a really great cause, doesn’t it? An organization sells (most often) a t-shirt, and $7 of the proceeds go toward a charity, as they say a “non-profit organization”.

Here’s the problem.  Over and over and over again, Sevenly has claimed to “support autism” while giving to organizations that are downright hateful and harmful.

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First, about a year ago, they donated for the first time to Autism Speaks with their “It’s Time to Listen” shirt.  That campaign’s revenue was $22,855.  Autistic people (including myself) protested, citing information on their Facebook page and contacting them via their website to let them know about why Autism Speaks doesn’t help autistic people, and why they should not partner with such an organization.  

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Then they released their “Live Loud for Autism” shirt, which seems absolutely ridiculously insulting and I know a few of my fellow autistic folks rolled their eyes in disbelief at that choice.  Not only is sound sensitivity most certainly a thing for autistic people, but the fact that Autistic people’s voices are silenced is very well known in the autism/neurodiversity community.  Again they donated to Autism Speaks, this time to the tune of $204,377.

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Then they asked us to “Light it up blue for autism”, a common slogan for Autism Awareness month, headed up by no other than Autism Speaks.  This time, they raised $245,709.

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Then, it seemed like things might be changing, when they premiered their “Different Not Less” shirt, quoting the words of Temple Grandin.  This time, their charity changed to the National Autism Association, which was at least slightly better than Autism Speaks.  This time, they only raised $34,531.

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They supported the National Autism Association for a second time with their “Radical Possibilities: Stand up for Autism” shirt.  They raised $53,332, and it appeared (at least to me) that maybe the tide was turning.

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Then, they proved that they didn’t listen to a word that autistic people and our families, friends, and other allies were saying.  That’s when they chose to support Generation Rescue.  For those unaware, Generation Rescue is the foundation that Jenny McCarthy founded, and they are behind many biomedical “cures” that are harmful, if not downright deadly to autistic children.  This time, Sevenly raised $19,516.

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This week, Sevenly is again donating to Autism Speaks.  As I write this, over $61,000 has been raised.  This time, the support of Sevenly’s sponsors has increased the amount of money donated to $14 per item rather than the usual $7.  A variety of shirts are being sold, from the “Different Not Less” to the “Live Loud for Autism”.  Their infographic on their website uses fear-mongering techniques not unlike those of Autism Speaks in order to gain support, such as the “fact” that autism costs the average family $60,000 a year.  (My inner skeptic is yelling “QUIT THE ABUSIVE THERAPY AND YOU WON’T BE SPENDING $60K).  

The Autistic Self Advocacy Network has implored autistic people and our allies to not support Sevenly, and to let them know what they think in this post.Many of us have done so, but unfortunately, it doesn’t seem like Sevenly wants to hear from autistic people.  They have made posts on their Facebook page asking who loves a person with autism, who is a teacher for autistic kids, who is a father or brother or other male relative (to promote their “men’s line”) of an autistic person.  But nowhere is there any mention of being an autistic person.  Their comments section has been flooded by autistic people and neurodiversity advocates who have told them time and time again that Autism Speaks isn’t good for autistic people, and have laid out the reasons why.  But they don’t want to listen.

So, Sevenly.  What is it going to take? When will you listen to the people who you claim you want to help? Or are you just another company who wants to pat themselves on the back for “supporting” autistic people, while ignoring us at the same time?

 

Autism is… (for the “This is Autism” flashblog)

Autism is needing a visual schedule even at age 30.

Autism is the joy of flapping your hands when something makes your heart sing.

Autism is needing to allot hours to performing basic skills.

Autism is objects ceasing to exist if you can’t see them.

Autism is reveling in the good textures – running your fingers over every bump, curve and rivet.

Autism is finding a pair of headphones that makes going out in public bearable.

Autism is holding a bachelor’s degree but working in a drive thru.

Autism is echolalia.

Autism is seeing details that others miss.

Autism is being able to recite pages and pages of text that you learned when you were sixteen but unable to remember something you read an hour ago.

Autism is the fantastic feeling of not needing a weighted blanket because your (also autistic) seven year old is more than willing to press herself on top of your chest.

Autism is explaining to a new friend every last detail of your latest obsession and being overcome with relief when they don’t call you a freak.

Autism is joy and it is struggle.

Autism is not a tragedy or a health crisis.

You aren’t my friend if you Light it Up Blue

Today is World Autism Day. Today, many people have participated in “Light it Up Blue”. I am not one of them.

Please do not misunderstand. I am not trying to ignore autism. I am not trying to say acknowledgment of autism and the move toward greater awareness is a bad thing.

But you are not my friend if you participate KNOWINGLY in an event that was created by an organization who portrays autistic people as burdens, who for a long time were very anti-vaccine in their rhetoric, who have filmed a then-member of their board talking about her thoughts about killing her autistic child and herself (but didn’t because her NT child needed her), and who silences autistic people, removing the very mention of us from our own stories, because clearly, portraying us as capable would ruin the image they are attempting to portray of us. This organization, of course, is Autism Speaks. If you don’t know the detailed reasons why they do not speak for many autistic people, please read my link here.

Today isn’t a very pleasant day for me. I was, thankfully, spared from much of the Light it Up Blue hoopla. I apparently do well in choosing my Facebook friends, for the most part. But I had a few moments that brought me to unwelcome tears. One of those was a longtime friend of mine (not a very close friend, but still a friend) posting information for another friend about curing autism with essential oils and how antidepressants in pregnancy cause autism. I was hurt, amd how do you explain that? How do you explain “this is hurtful because you believe my neurotype is inferior and needs to be fixed rather an accepted” when you think it should be self explanatory?

The truth of the matter is, I shouldn’t have to. I shouldn’t have to explain that, and anyone who brushes me off as an angry autistic, well, yes, you’re right. But it gets tiring defending my right to exist and be treated like a human being. This goes for many other forms of oppression, too, so please don’t believe that I think this is exclusive to autism. It absolutely is not.

If I were to write a letter to the world about what World Autism day is about for me, this is what I would say.

We have always been here among you. Please do not fear the increase in diagnoses because of advances in medical care. We are not scary, and we are different, but we are no less worthy of love and understanding. We deserve to exist and to be accepted for who we are. We need access to medical care of our choosing. We need a voice that belongs to us, not our parents, caretakers, teachers or therapists. Listen to us. We may not all speak your language. We aren’t a monolith. Pay attention. And learn.

Why I am Against Autism Speaks (and you should be, too)

Edit 6/20/14 I have updated this and created a new and hopefully better sourced and easier to read document.  Please go here:

https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

(TW: Ableism) Autism Speaks is the most well-known autism charity.  They have the most media coverage and are endorsed by many celebrities, but this certainly does not make them a good organization.

  • Autism Speaks does not have a single autistic member on their board.
  • Autism Speaks only spends 4% of their budget on “family services”.
  • Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel.
  • Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film produced by the same person who directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”

In short, Autism Speaks is a very large part of the problem; they create a stigma that makes it far more difficult for actual autistic people like myself to be heard, to have our opinions matter, and to fall anywhere outside of the “autistic angel” and “screaming, violent, rocking in the corner autistic” stereotypes. In addition, for them, as well as many other organizations (and the media), autism is considered to be a child’s disorder/disability, and you will often hear people say “where are all the adult autistics?” I can’t tell you how many times I’ve heard that in the past 5 years or so. The answer to that is simple!  We’re right here in front of you.  We may have been misdiagnosed as children with learning disabilities, intellectual disabilities and the like when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now.  We may not have been diagnosed at all and simply treated as though our difficulties are our own doing. We vary in where we fall on the spectrum, though functioning labels are gross and you shouldn’t use them.

For further reading, here are a few resources about Autism Speaks:

Here are a few other terrible things that Autism Speaks has done recently.

  • This woman’s job offer was rescinded after she asked Autism Speaks for accommodations in caring for her autistic son.  They refused, and she made necessary accommodations for childcare, but they withdrew her offer anyways.
  • Autism Speaks shared the news of Google removing hate speech regarding autistics from Google’s autofill feature, completely erasing any mention of autistic people’s flashblogs having anything to do with the change.  It was only after a member of the autism community (and not a parent, but an autistic person themselves) spoke with a reporter about the flashblog and a statement was released to the media that Google decided to make this change.
  • Autism Speaks highlighted AAC use, while erasing those those who actually use AAC devices to communicate.  The focus was on the caretakers, not on the autistic people themselves. (The attached link has a link to a rebuttal by a nonspeaking autistic person, Amy Sequenzia).

There are a number of corporate partners — big businesses (for the most part) who align themselves with Autism Speaks. This can take many different forms, but in general, you should consider that a purchase to any of these companies may benefit Autism Speaks. The list is as follows (thank you, austryzor):

  • ATA Martial Arts
  • Bachman Pretzels
  • Bob’s Red Mill
  • Build A Bear
  • Capital One
  • Casey’s General Stores
  • Continental Accessory
  • Dollar General
  • Dover International Speedway
  • eTrak
  • Fashion Bug
  • FedEx
  • Fox Sports
  • GAP
  • Joe’s Crab Shack
  • Kid Natural Hero
  • Landscape Structures
  • Lindt and Sprungli
  • Mattress Warehouse
  • Med Claims Liaison
  • Modell’s Sporting Goods
  • Panera Bread
  • Pump it Up
  • Queens Flowers
  • Scentsy
  • Shoprite Supermarkets
  • Sprouts Farmers Markets
  • Stadium NEST Fragrances
  • Stella & Dot
  • The Home Depot
  • TJMaxx
  • Total Wine and More
  • Toys R Us
  • White Castle
  • Zales

Some people have contacted me with requests for what organizations actually do help autistic people.  There are a few, in fact, that actually focus on autistic people, and not just autistic children. The final two are actually general disability organizations, and not specific to autism.

The Autistic Self Advocacy Network is pretty much the best choice.

The Autism National Committee

Autism Network International

Autism Women’s Network

TASH

ADAPT

Autistic people are…

Last week, we blogged about “Autistic people should…” as a response to Google’s autocomplete suggestions for “autistic people should” and “autistic people can”.  This was a flash blogging event, and there are more entries chronicled here. 

Since then, a number of things have happened.  People took notice. This is a good thing! Google is going to change their search terms. Even large organizations like Autism Speaks noticed! That’s a good thing, right? Oh wait.  Autism Speaks mentioned Google.  They didn’t mention anything about the Autistic people who made this happen.  Comments on their page by Autistic people have gone completely unanswered.  This, on the day when we as Autistics are taking time to mourn our dead, unjustly killed by their caretakers.  Deaths that were caused by the terrible ideals that Autism Speaks perpetuates.  I am demanding an apology from Autism Speaks.

So today, I am going to tell you a little bit about this community of mine.

Autistic people are authors of our own stories.  Too many times, I find an article about an autistic person that makes me think that their voice is going to be adequately represented, that they’re going to be able to tell their own story.  And while that is sometimes true, most of the time it is not.  I’ve gone into the #autism tag on Tumblr on more than one occasion, seeking to connect with my fellow autistic people, and finding nothing more than parents and siblings and educators and so-called “experts” talking about someone they know who “has autism”.

But Autistic people are speaking! Loudly! In many different forums.  I find that I can connect with a great deal of very diverse Autistic individuals online, because it’s certainly easier for most of us to communicate in text-based ways than verbally or in person.  Autistic people are capable of telling our own stories.  While, yes, we may appreciate being backed up by our family members, we don’t need them trampling all over us in order to tell our story for us, as though we cannot do it on our own.

Autistic people are competent.  There’s a saying that goes for all of the disability community, but is especially relevant to autism, as there are many among us who are nonspeaking.  That phrase is “presume competence”.  Assume that regardless of a person’s level of communication, you must presume that they are able to understand you, I’m constantly reminded whenever we talk about presuming competence of Carly Fleischmann, and how her parents were told that she was incapable of understanding.  They were told incorrect information regarding their daughter’s diagnosis, and as such, they assumed that she didn’t have the ability to understand.  That is, until she turned 11, was given access to a computer keyboard and she began typing her thoughts. This is the case with many nonspeaking individuals.  I recall one of the last documentaries I watched (that wasn’t autistic-led, which is hard to find in the first place) was Loving Lampposts.  In it, one of the nonspeaking Autistics said that people presume that he doesn’t have much to say, that there’s little of worth that he will communicate.  This is the problem with in-person communication between neurotypical folks (who are sometimes considered “experts” but really know very little) and autistic folks.  The NT folks see someone who cannot speak, who stims quite a bit, and they think “weird”, “not having anything to contribute”.  However, if these NT folks came upon some of the nonspeaking Autistics I know online, they would claim that there was no way that they could be “low-functioning,” because in many NT folks’ mind, “low-functioning” equals “non-thinking” or “incapable”.  Autistic people are competent.

Autistic people are more than a functioning label.  This is related to point #2, of course.  It’s a little bit ridiculous, but many allistic and NT folks (allistic simply means “not autistic”, whereas NT means “completely neurotypical with no neurodivergences) tend to like to put these labels on those of us who are Autistic.  “High functioning”, “low functioning” — all of these undefined terms that really don’t mean anything.  Laura Tisoncik described the dichotomy best when she said “The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low- functioning means your assets are ignored.” In other words, it’s a no-win situation.  I’ve had the functioning label thrown at me over and over again.  I’m “too high functioning” to deserve a voice in the debate over a cure, so some say.  But then again, “low functioning” folks don’t get a voice either, because they aren’t able to have coherent thoughts, and opinions and make decisions about their own lives.  I am a person.  Autistic people are people, first and foremost.  We are not functions.  I addressed some of this (and a few other points) in this post.

Autistic people are brilliant. This doesn’t mean “high IQ”.  That’s not what I mean when I say brilliant.  Perhaps it’s somewhat of a throwaway word, overused like “awesome” and “amazing”.  But Autistic people are brilliant.  We are a people who are often treated as though we are not quite human, we are erased, we are dehumanized, we are told we have no empathy, we are monsters, we are not worthy of love or affection, and that in the end, our abusers will be the ones to receive sympathy if we are abused or murdered.  We are told that we are not trustworthy because of our awkward body language and lack of eye contact.  But you know what? We are resilient.  We are survivors, and we fight every single day of our lives to do away with the stigma against people like us.  Not every one of us can be “out” as autistic, because currently, that’s not safe to do.  Despite the fact that autism is a disability covered under the ADA, many of us have been discriminated against with regards to schooling and work, and perhaps it is necessary to hide, to “act neurotypical”.  Autistic people are a community.  We are a community of very different people who share a common experience with the world — an overwhelming yet beautiful place to live.

Autistic people are brilliant. 

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.