Marco Rubio and autism – a history lesson

The I may write more on this at a later date, but for now, I’m republishing something I wrote elsewhere on the Internet back in 2013.

These words and thoughts have consequences, especially considering the confirmation of Betsy DeVos and Rubio’s hand in that.

Again, more on that at a later date.

I saw that a few other people had included their form responses, so I thought I’d include mine.

Dear <my name>, 

 Thank you for taking the time to contact me about autism awareness, research, and education.  I understand this is an important issue impacting many people in our country, and I appreciate hearing your thoughts about ways to help those with disorders along the autism spectrum.

This completely ignored the fact that I actually explained that I AM AUTISTIC AND SO ARE MY KIDS, you know, so I’m not just this bystander concerned about “ways to help those with disorders along the autism spectrum”.  Also, how clunky is that phrase in quotes? Good Lord.

 As you know, researchers and medical professionals across our nation are committed to finding a cure for autism, and creating ways to help those with autism spectrum disorders control and manage symptoms through medications as well as changes in their lifestyles.  The federal government has historically funded opportunities for biomedical research on autism through the National Institute of Mental Health at the National Institutes of Health (NIH), as well as numerous other institutes and health centers, and through grant opportunities aimed at autism research, education, awareness, and support services.

What the everloving fuck.  So I write to you explaining that I don’t want to be cured, that I don’t want to be some horrific entity that you should want to eradicate or cure, and the first thing you talk about is how committed you are to finding a cure? Well alrighty then.

I mean, many of us have conditions RELATED to our autism that can be helped by medication, so that’s valid.  I want all of us to have access to medication and to health care.  But it sounds like “medication fixes autism” to me and I don’t think that’s even close to the case.  I know that there are parents who put their kids on so much medication that the kid has no choice but to suppress the urge to stim and to sit quietly, but that’s not natural.  Not when you’re autistic.And it’s very often harmful not only now, but later in life.

“Lifestyle changes” sounds a lot like “therapy to make you normal”.  Because in most cases, that’s what is happening.  

On May 26, 2011, Senator Robert Menendez (D-NJ) introduced the Combating Autism Reauthorization Act (S. 1094) in the U.S. Senate.  This legislation would amend the Public Health Service Act to combat autism through research, screening, intervention, and education

Interesting that three out of four of those really sounds like it’s try to fix or eliminate people like me, isn’t it? Research into what? Ways to target autism before birth? Through genetic screenings? That’s what the screening part talks about, I believe, unless we’re talking about the M-CHAT, which is a test given to diagnose an autistic person (most often a child).  Intervention, ah, again, so we can pretend to be normal, and be bad version of ourselves, instead of you know, just being the best autistic people we could be.  Now education? That’s something I could get behind.  Educating professionals, including doctors, teachers, mental health professionals, etc etc etc, about what it’s like to be autisitc, and educating the community so there’s no longer a fear of autism? That I’d get behind 100%.  But since this is part of the COMBATING AUTISM ACT as if we’re in some fucking war against people like me, well, I’m going to guess that it doesn’t have anything to do with anything but fearmongering, yet again.

Identical legislation has been introduced in the U.S. House of Representatives (H.R. 2005) by Congressman Christopher Smith (R-NJ).  Since this legislation will ensure the continued success of autism research and targeted programs, I officially cosponsored the Senate version of the Combating Autism Reauthorization Act.  The House-introduced version of the Combating Autism Reauthorization Act (H.R. 2005) was passed in the U.S. House of Representatives on September 20 and in the U.S. Senate on September 26, and the Combating Autism Reauthorization Act was signed into law by President Obama on September 30, 2011.

 Federal funding for the NIH is currently appropriated by the Consolidated Appropriations Act, 2014 (H.R. 3547), which funds the federal government until September 30, 2014, and was passed by Congress on January 16. I could not support this trillion-dollar spending bill because it again postponed any significant action on pro-growth spending reforms to address our nation’s debt crisis.

 I will continue to keep your thoughts regarding autism awareness, research, federal funding and education in mind during the 113th Congress.  Again, thank you for contacting me about this matter, and I welcome any thoughts or input you wish to share in the future.

Sincerely,

Marco Rubio
United States Senator

You didn’t listen, sir.  You didn’t listen at all.

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.”

Four years

Content warning : Autism Speaks, filicide, propaganda, brief mention of rape and death threats

I realized not too long ago that it’s been four years since I wrote my first post about Autism Speaks.  I have two major ones that exist, both of them available under the “pages” tool on my blog here.  Feel free to read them if you have the time or the stomach to do so.  It’s a lot, and though there’s quite a bit that needs to be updated (notably that there are now two autistic board members), most of the points still stand.

Those posts are rich in information, most of it fairly dry and straightforward.  The point of those posts was to have something to go to when someone asked me “but why don’t you like Autism Speaks?”.  The first ever post I made on the subject was on my tumblr blog four years ago, and it was in response to someone asking me exactly that question.  After a week of the same question repeatedly (after the first ask had been buried under other posts), I decided to make it a post.

The research on that was harrowing.  It was a lot to take in, it was difficult to read.  I was committed to making it as detailed as possible and I tried my best to not impose too many biased and outlandish statements within it.  I can’t say I was entirely successful, but the me of four years ago was far more intense about these sorts of things than the me of today.

And then I edited that post.  And I edited it again.  And I realized that I was adding so much to the post that I may as well make a second one.  So the updated Autism Speaks post came into existence just two years ago.

I don’t think I have ever really talked about the impact of those posts on me, what it feels like to not only have them floating around the internet, but to have been linked in articles in major news outlets.  Nor have I talked about the way that Autism Speaks makes me feel.

So this is what I’m doing now.  This isn’t edited for clarity.  It isn’t particularly newsworthy or perfectly constructed.  But this is me.

I feel heartbroken.  Every time I hear the words “epidemic” or “tragedy” or the words “until all the pieces fit” along with the imagery of a puzzle piece being forced into the wrong shape, it breaks my heart.  It makes me think of all the times when well-meaning family and friends tried to make me be something I’m not.  Less autistic, more neurotypical.  Maybe even sometimes more straight (though that’s a different story in itself).

Every time a parent whose clothing is covered by puzzle pieces or autism “awareness” slogans tells me I don’t count because I can speak, even while I’m stuttering and turning red and unable to continue and they think they’ve won the fight…my heart breaks.

Every time an autistic activist receives a hateful comment, a rape or a death threat, it makes me want to scream.

Every time I read about places like the Judge Rotenberg Center, or posts about people who have been subject to 40+ hours of ABA therapy a week since they were two years old (or younger!), it makes me want to scream .

Every time I see Autism Speaks release yet another pile of steaming bullshit, whether it’s in the form of a celebrity benefit or those damn gold bunnies, or some ridiculous computer simulation of a person who avoid eye contact (as if that’s the absolute worst ever), I get angry.

I am a highly empathetic person.  I know that word empathy is thrown around and used improperly and it’s difficult to pinpoint exactly what it means when you’re an autistic who has a lot of empathy.  But I do, and I’m affected not just emotionally but physically by other people’s pain, and it hurts.  Every time one of us hurts, I hurt.

And then I see the result of all this propaganda that Autism Speaks puts out, the flat out denial of our humanity.  The fact that every time one of us is killed by our caretakers, that the number one comment will be about services, services, services.  That it doesn’t matter that we are people deserving of love and respect and life .  We are problems to be solved, and that can only happen through services.  So many excuses, and yet so many of these parents had access to services, were filthy fucking rich, and they still killed their kids.

I know this – that the only time Autism Speaks has directly commented on a parent killing their autistic kid was the attempted murder of Issy Stapleton, and how Autism Speaks called it “an unfortunate incident” and refused to directly comment on Kelli Stapleton and how she tried to kill her autistic daughter.  Is it because she was an autism mom blogger and well known in that community? I think so.  I can’t prove that, but I have a pretty good instinct about it.

I am heartbroken about it all.  I see every single parent that tries to explain these things to me as if I don’t know, as if I just don’t understand.  See, because even though I am one of them (a parent of autistic kids), I’m not really one of them.  I’m “other”.  I know many people like me (autistic parent of autistic kids), but the “autism parents” like to think that we don’t exist.

I do understand.  I understand the fears.  I understand the frustration, especially if you’re a single parent.  But I don’t understand how a person disrespects their child, takes away their autonomy again and again and again, refuses to explain to them that they’re even autistic, and makes them feel so very broken. I don’t understand parents who, instead of accepting their child’s neurology as who they are, spends time and money on Autism Speaks’ walks to “find a cure”.  I don’t understand parents who go there with their children (both actual children and their adult offspring), who speak as though their kids aren’t even there or capable of understanding, and who talk over Autistic advocates who try to explain the problems with Autism Speaks.

I get it.  It’s the first resource that doctors offer upon a diagnosis being confirmed.  I get that.  I know that I’m much more informed and open-minded than a lot of people.  But when I read Autism Speaks’ “The First 100 days”, I felt sick to my stomach.  These people were describing my child? How dare they! How dare they describe her with such foul words? How dare they dehumanize her?

Respect your kids. Respect yourself.  And Boycott Autism Speaks.

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

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.

Image

Image

Image

 

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.