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.

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.

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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.

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.  

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.

 

 

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.

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.

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.

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.

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?

 

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:

• Say No to Autism Speaks
• I’m Autistic, But Autism Speaks Doesn’t Speak for Me.
• An Autistic Speaks about Autism Speaks.
• A Chart Regarding Autism Speaks’ Allocation of Funds
• ASAN’s flyer regarding Autism Speaks (this is easily printable and is good for distributing information quickly).

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. 

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.  

 

More on Joe Scarsborough’s autism comments

First, if you haven’t read what Joe Scarsborough said earlier this week, you can read more here.

Also, some good responses, including a not-great-but-not-terrible one from Autism Speaks (and a really fabulous one from Ari Ne’eman) can be found here.

My thoughts are this – in the end, it doesn’t matter whether or not James Holmes is autistic. Maybe Joe Scarsborough is right. I don’t know. It’s certainly possible. It’s equally possible that he has a mental illness or is perfectly neurotypical. The issue for me is that none of that matters. He took the time to plan and commit a horrific crime.  Please, let’s not demonize autistic or mentally ill people and make our lives more difficult because of speculation, of preconceived notions of what it is to be autistic or mentally ill. There are many people who are both or either who manage to live their lives, who have a support system, and who aren’t dangerous to a single person. Does there need to be a lot more support for autistic people and those who are mentally ill? Oh, absolutely! I won’t doubt you there for a second. I realize (based on Scarsnorough’s non apology) that is what he meant to say, and in that case, he’s right. There isn’t a lot of support out there for us, and there should be.

None of that is what people are going to take away from this, however. They are going to hear autism=violence, which makes it all the more difficult for autistic people. It’s going to be more difficult for our voices to be heard, more difficult for us to obtain gainful employment and accommodations. The consequences of his careless words are far reaching.

I wish he hadn’t opened his mouth.

Why I am Against Autism Speaks

Autism Speaks is by far the most well-known charity that exists in the USA regarding autism. Just because they have the most media coverage and celebrity support does not mean they are 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”.
• The majority of Autism Speaks’ money goes toward research, and the majority of that research is to find a way to rid the world of autism, and thus, autistics.
• 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 but can still be found elsewhere.
• Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film comparing autism to cancer, AIDS, and blaming autism as the reason why marriages break up.

In short, Autism Speaks makes it much harder for those of us who have autism to be taken seriously. Autism is considered to be a child’s “disease” (which isn’t really accurate at all, as a disorder and disease are two different things, but Autism Speaks treats it as a disease), and you will often hear people say “where are all the adult autistics?” Well, we’re right here in front of you. We may have been misdiagnosed with learning disorders, mental retardation (now referred to as intellectual disability) and other mental illnesses when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now (there are also a few variants of autism or autism-like disorders that I don’t mention here, like Rett’s, but these are far less common). We vary in where we fall on the spectrum. Don’t make assumptions about us because we can use a computer.

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

Why Autism Speaks is No Good for Autistics.

Autism Speaks Does Not Speak for Me.

I’m Autistic, But Autism Speaks Doesn’t Speak for Me.

An Autistic Speaks about Autism Speaks.

Chart regarding Autism Speaks’ funding allocations

ASAN flyer about Autism Speaks