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.

Autism Speaks No Longer Seeking Cure; This Autistic Person Couldn’t Care Less

Yesterday, Disability Scoop published an article stating that Autism Speaks has discontinued its use of the word “cure” in its rhetoric.

Previously, Autism Speaks spoke of unifying the autism community to address what it called an “urgent global health crisis.”

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder,” the old statement indicated.

Well, that’s good, right? It’s good to not be talking so much about a cure anymore, right?

Well, maybe.

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The new version, which the nonprofit says has been in the works since at least late last year, takes a decidedly different tack.

“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”

Not only does it sound like a lot of nice words couched in nice language that don’t actually mean a thing, but it’s very parent focused (still) and doesn’t actually seem to help actual autistics.  Oh, sure, maybe we’re not being called a national health crisis anymore, so I guess in that respect, it’s a small step forward (more like a reluctant shuffle, a tiptoe).  They’re using the language of the neurodiversity movement in order to become more relevant, I suppose.

But Autism Speaks hasn’t done the basic duty of any organization who has continually royally screwed up.

  • They haven’t apologized for plagiarizing an autistic activist’s work.
  • They haven’t apologized for the atrocity that was “I Am Autism”
  • They haven’t apologized for, as part of Autism Everyday, a new promotional video, for a member of their board talking about committing a murder/suicide on camera in front of her autistic child.  Said member of the board then split off from Autism Speaks to form the Autism Science Foundation.
  • They haven’t apologized for giving the Judge Rotenberg Center a table at their walks, a place that uses electric shocks on autistic people and has been condemned by the UN.
  • They haven’t apologized for treating our parents as heroes and saints for the basic minimum duty of caring for us.
  • They haven’t apologized for the abuse that they’ve hurled at autistic activists that dared oppose them on their webpage and Facebook pages.
  • They haven’t apologized for the many times in which they pretended like autistic activists don’t exist.  Notable examples are mostly on Twitter, where they created multiple tags for different events (#MSSNG  and #AutismSpeaks10 , for example) for the express purpose of celebrating parents and professionals and how they’ve benefited from the existence of Autism Speaks.  Autistic activists fought back, used the tags, and they ignored us and changed the tag they were using.

So I’m waiting. For apologies, for acknowledgments.  Maybe they’re capable of changing, but I’m highly doubtful, and I don’t in any way think that this is anything but talk with no action.  I also think that the proper response to criticisms is to start over entirely, not to ignore autistic activists’ criticisms and just change the words.  That doesn’t mean anything.

In addition, “solutions” sounds a whole lot more like eugenics than “cure” ever did.

Vaccines Don’t Cause Autism, But That’s Not the Point | The Scientific Parent

http://thescientificparent.org/vaccines-dont-cause-autism-but-thats-not-the-point/

Vaccines don’t cause autism, that’s true, but what’s the underlying concern about autism. Why is it something to be afraid of?

It wasn’t until I was driving home from class one day and was listening to C-SPAN radio. I was in my mid-20s and living in Washington, DC. This would seem weird anywhere else in America, but in DC it’s perfectly normal. The panel discussion being broadcast was teens and adults with autism and how federal funding could better support them. As the show closed, the moderator asked if anyone on the panel felt a vaccine had caused their autism.

Silence.

One teen panelist spoke up, “no, but it hurts that you would ask that question.”

The moderator’s tone softened, he apologized and asked why. I’m going to paraphrase the boy’s response because it has been several years and for the life of me I have not been able to find a transcript of this event anywhere, which has driven me to madness. If anyone from C-SPAN reads this and knows the talk I’m referring to, please send me a transcript! The panelist’s response was incredibly moving and I wish I could give him credit for it and do his response justice.

As I recall his response was, “because it makes me feel like I’m damaged or broken, when I’m not. I was born this way. My brain just works differently than most other people’s. When people talk about vaccines and autism it makes me feel like I’m not a person but a ‘bad result.’ It reminds me that no one wants a kid like me and parents will risk their kid’s lives and everyone else’s just to make sure their kid doesn’t turn out like me.”

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.

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

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