Autism Speaks, I Want to Say: A Flash Blog

Autism Speaks recently released a video called "I Want To Say" about Augmentive and Assisted Communication (AAC) devices and apps, related to its Hack Autism* initiative this month.

Sounds like a great idea, right? Except they don't let any of the autistics shown in the video communicate in their own words! It's allll about the parents and how tragic autism is for the parents. Originally, only parents would evaluate the apps at Hacking Autism; apparently the autistic holding the Windows tablet is not the end user, the parent is. The cosponsors at the Bing Fund gave in after some social media pressure, but it says a lot that it wasn't planned that way. Nothing about us, without us.

Here's a pingback to the blog that discusses it in detail, from the perspective of an Autistic Deaf person who compared how much assistance Deaf people get in actually communicating as opposed to playing normal.

http://timetolisten.blogspot.com/2013/02/hackathon-for-autism-with-no-autistics.html

So here's what I want to say: Autism Speaks, stop silencing actual autistics.

I want to say: Nothing about us, without us.

I want to say: Autism Speaks, stop making autism all about the parents.

I want to say: Autism Speaks, stop portraying autism as a curse from a fairy tale or horror movie.

I want to say: Autism Speaks, stop sucking up the vast majority of charitable donations under the pretense of helping autistics when only token amounts actually do.

I want to say: Autism Speaks, put a majority of autistics on your board, some of whom use AAC or sign language or other non-spoken communication, and let them set the priorities. Nothing about us, without us!

I don't use an AAC device, as I didn't have a speech delay. I might find one useful for when I'm having difficulty with speech or know I'm not going to put the right spin on things, but I can get along OK. However, other autistics communicate primarily via keyboard, such as Amy Sequenzia. Here's what she said about "I Want To Say."

http://autisticswanttosay.blogspot.com/2013/03/autism-speaks-i-want-to-say-flash-blog.html

*Regarding the event title, "hack" is a very positive term in the programming community. It does not mean "hacking" as in the popular media definition of breaking into computers/networks, or the dictionary definition of chopping things wildly and destructively. To someone who writes computer programs, "hacking" means finding a creative solution to a technical challenge, often with overtones of doing it for fun. "Hack Autism" was a day where programmers got together to write apps for autistic people. Or at least for parents who wished their kids could seem less autistic. That error in judgment was the basis of anything negative, not the name, or competing with the head start Apple has with the iPad and various apps for autistic kids.

Autistic People Are Not Letting Autism Speaks Erase Us From Our Success

Trigger Warning: Discussion of Autism Speaks and ableist rhetoric.

I had a lot of things in mind I was going to write for the "Autistic People Are..." Flash Blog Event, but those ideas were pre-empted by current events.

I found out via Facebook on Friday, March 1st, that Autism Speaks has erased the success of Autistic bloggers in getting Google's attention and a promise to change their autocompletion feature when the top search strings are the hateful things we blogged about last Saturday. The Autism Speaks news blurb and Facebook page mentioned Google's altruism but not why they suddenly noticed the issue, despite linking to a story that properly credits the Autistic bloggers' hard work. (That reporter interviewed the flash blog leader, the owner of Yes, That Too.) Correction: The reporter interviewed a different team member, whose blog is Unstrange Minds.

So, let me get this straight. Nearly a hundred Autistic bloggers banded together to protest something and succeeded in getting the attention of one of the largest, best-known Internet companies to fix some unintended consequences of their flagship product. You would think that would be big news for the world's largest Autism charity, wouldn't you?

That would be true if Autism Speaks were truly interested in the well-being of Autistic people. Instead, they chose to report this as though Google just magically realized one day there was a problem, with no mention of the activists or the flash blog. Autism Speaks erased the Autistic advocates who dared to speak for themselves.

And to add insult to injury, they pulled this stunt the day before ASAN's National Day of Mourning for Autistics killed by their caregivers. This event grew out of last year's vigils for George Hodgins, an Autistic youth I never met who lived within 5 miles of me and was killed at age 22 by his mother. News reports not only treated the murderer sympathetically, they erased him from the story of his own murder by leaving out the types of human interest details you almost always see about a crime victim.

These reports uncritically repeated stereotypes and "autism mom" tropes that turned out to be false. Mother was tired of spending 24/7 with her adult Autistic son because she had nowhere to turn for support and no program would take him? No, he was an alumnus of the Morgan Autism Center and they said he was always welcome there. And it goes on from there. (Besides the point that if it were true, murder is still murder even if Mom is tired and frustrated.)

Many in the Autistic community consider Autism Speaks an accessory before the fact in these cases, because this group for parents of Autistics spent so much time, money, and effort to convince America that having an Autistic child is a disaster that will ruin your life. Parent kills non-autistic child, world hates them. Parent kills autistic child, world is sympathetic because services/burden/etc. According to Autism Speaks, Autistics are a puzzle (probably missing a few pieces, nudge nudge wink wink), an epidemic, a tsunami--a disaster waiting to happen to YOUR family, if you don't donate now. Not really people because we have strange behaviors and don't communicate the same way.

Just having a reporter contact an actual Autistic adult for a news story is a major step forward in Autistic Acceptance. Google paying attention to Autistics' complaints? That's a huge advance. But to Autism Speaks, our role in our own stories isn't worth mentioning.

I don't know if Autism Speaks just doesn't realize what they did, or if they're conscious of the cognitive dissonance between their "autism is a devastating disease" rhetoric that makes Autistics helpless burdens who have no voice of their own and the success of a social media campaign designed and completed by Autistics. How can they keep extracting money from frightened parents who don't want their kids to grow up to be enigmatic, subhuman burdens on society if parents realize that Autistics can take initiative and carry out a campaign like we did?

So the Autistic community is not letting Autism Speaks erase us from our success.

Please, don't just comment here. Comment on the Autism Speaks Facebook page and website and feel free to link here. They need to know we won't just sit back and let them silence us.

(And please visit other "Autistic People Are..." blogs, too!)

Chronology:

February 16, 2013: The author of Yes, That Too, an Autistic advocate and college student, announced the two Flash Blogs in response to outrage in our community that the autocomplete suggestions in Google and Facebook Search for "autistic people should..." and "autistic people are..." were horrible, triggering, hateful things. So many people using these search functions hate autistics that these are the most common searches.

http://autisticpeopleshould.blogspot.com/2013/02/autistic-people-are.html

February 23, 2013: Nearly 100 Autistic advocates posted blog entries on the "Autistic People Should..." theme and submitted them to the blogroll.

http://autisticpeopleshould.blogspot.com/p/postroll.html

February 27, 2013: Kathleen O'Brian, reporter for the Star-Ledger, posted this article announcing that Google had responded to the Flash Blog event by announcing it would figure out how to block search suggestions that constitute hate speech. She interviewed the Yes, That Too blogger for the background of the Flash Blog.

http://www.nj.com/parenting/index.ssf/2013/02/google_changes_policy_for_auti.html


February 28, 2013: Autism Speaks announces on its Facebook page that Google has decided to change its auto-suggestion algorithm to filter out "autistics should die" types of auto-complete. No mention whatsoever of the flash blog.

Screencap of Facebook discussion:

 
https://www.facebook.com/autismspeaks/posts/191178214339598

http://www.autismspeaks.org/news/news-item/google-eliminates-039die039-search-suggestion-autism

https://docs.google.com/file/d/0ByKde_Fh7TRqTUNCbTBWVlFmeW8/edit?usp=sharing

Autistic People Should Be Accepted

Today is "Autistic People Should... " Flash Blog Day in the online Autistic self-advocacy community.

What's that, and why are we doing it?

Someone, I forget who was first, noticed that if you type "autistic people should" into your search box in Google, Bing, and particularly Facebook, the autocomplete suggestions based on previous searches are pretty horrifying. So the Autistic community decided to add some positive content for people to find.

I believe that Autistic people should be accepted in society without being looked down on or bullied for being different. Different does not necessarily mean dangerous. Who is harmed if I flap my hands when I'm happy or rock while waiting in line? Why does Western society place such a high value on eye contact when other cultures consider it disrespectful? Why do non-Autistics believe that if someone can't speak with their mouth, they must not be able to understand others or to think at all?

By acceptance, I don't mean that parents should refrain from teaching skills or manners, or that they should ignore medical issues, even though many parents and professionals claim this is what "Autistic Acceptance" means. Parents have responsibilities to help their children develop to the best of their potential, Autistic as well as non-Autistic. But in the public sphere, people need to stop judging Autistics just because they don't always fit the social norms.

After all, people who have demonstrated exceptional talent are allowed to break social norms. It's almost expected that geniuses and artists will be eccentric, so much so that it would be unusual for a fictional genius or artist to be unexceptional in their habits and demeanor. So if we can accept someone's differences because they're exceptionally talented, and enjoy the eccentricities of fictitious characters, why can't we accept someone's differences just because that's the way they are?

Some Autistics are also geniuses and artists, and I don't just mean historical figures who have been retro-diagnosed as a party game or an attempt to build positive associations for Autistics. Pretty much everyone knows about Dr. Temple Grandin, the Autistic who revolutionized animal handling in the meat industry; she grew up with self-confidence, found and made her opportunities to excel, and her quirks are accepted because she's recognized as an expert in her field. Let's extend this level of acceptance to all Autistics, not just those with special talents.
 
But the current lack of acceptance leads the majority of parents to assume the best they can do for their children is to make them less Autistic. Not better at coping with the world, not more confident in their abilities, but to be someone they are not. And that's no way to live. 

So what does accepting Autistics look like?

Unfortunately, that looks pretty much the opposite of the prevailing ways to treat Autistics in our society, thanks to negative, fear-based "autism awareness" fundraising campaigns by organizations run by non-Autistics.

• Accept that Autistic people should be free from bullying, whether as children or as adults. (Teach your children not to bully anyone, for that matter.)
 
• Accept that Autistic people should be allowed to avoid eye contact without being considered disrespectful or dishonest.
 
• Accept that Autistic people should be invited to share their special interests instead of being expected to make small talk.
 
• Accept that Autistic people should be spoken to directly and honestly, rather than expecting them to pick up on body language or hints.
 
• Accept that Autistic people should be forgiven if they don't recognize you, particularly out of the context where they usually encounter you (school, work, etc.).
 
• Accept that Autistic people should not be asked personal questions about their bodily functions, sex life, etc.
 
• Accept that Autistic people should be presumed competent, whether they speak with their mouth, their hands, or a device.
 
• Accept that Autistic people should get academic supports and workplace accommodations.
 
• Accept that Autistic people should be permitted to mitigate noxious sensory input or leave a hostile environment.
 
• Accept that Autistics should have access to whatever supports or accommodations they require without argument that if they can do X they don't need help with Y.
 
• Accept that Autistic people should live, study, and play in the least restrictive environment.
 
• Accept that Autistic people should be treated as individuals, not stereotyped.
 
• Accept that Autistic people should be respected as human beings at any age or ability level.
 
• Accept that Autistic people should marry and have families if they want to and they find a partner who loves them.
 
• Accept that Autistic people should be anything they want to be.
 

That's what Autistic Acceptance looks like.

Choosing to protest for autistic rights

This afternoon, I happened to mention to a friend that I wasn't going to make it to Maker Faire this year. It's May 19-20, and I'd just realized I couldn't realistically turn down a chance to sell crafts somewhere else on the 20th. And on the 19th, I had a much bigger commitment: Protesting for disability rights. She asked me to explain, but I was too tired to access the right mental files to explain why the Autistic Self-Advocacy Network is protesting the Autism Speaks fundraiser in San Jose on May 19, 2012. It was difficult to decide not to attend one of my favorite annual events to go get heckled by people who think I'm not really human, but I don't think I can justify skipping the protest this year.

The autistic community is in a justifiable uproar because of a recent string of parents killing their autistic children (often committing or attempting to commit suicide afterwards). How much of the actual blame for the murders is the mothers' own problems and how much is their misconceptions of their children being tragedies and burdens on society we can't know, but we do know that most of the public response to news reports has been sympathy with the killers. Sympathy based on the picture of autism as a tragic, devastating disorder that replaces children with mysterious automata and destroys families--the picture promoted by Autism Speaks to generate pity and raise funds.

Most of the funds Autism Speaks raises go to fundraising expenses and disproportionately high executive salaries. They have been so successful in positioning themselves as the go-to source for autism information and donations that other autism/autistic groups can't compete successfully. Of the funds spent on research, only a few percent goes to research into improved communication methods or anything else useful to autistics. Most goes to biomarker research so that parents can choose not to give birth to autistic children. Very little funding goes to programs that would support or teach necessary skills to autistics.

Public criticism (mostly by ASAN and local autistic blogger Landon Bryce) has encouraged Autism Speaks to tone down the derogatory language and fund a few token projects. It's hard to forget that a former leader of Autism Speaks, Alison Singer, discussed in a video her decision not to drive off a bridge with her autistic child in the car--and the reason she didn't was that she didn't want to abandon her non-autistic child. This was portrayed as a natural response to difficulty finding a good school for the autistic child. (Is it only a coincidence that this was the same motivation George Hodgins' mother claimed before shooting him and then herself in Sunnyvale last month?)

I don't know if our protest (7 people RSVPd so far) will change any of the hardcore members' minds about the organization, but we hope to have some effect on management (incremental) and perhaps friends of members who are just going to the walkathon due to social connections.

Here's what a fantastic non-autistic mother has to say about the whole (Autism Speaks-led) Autism Awareness campaigns: http://autisticadvocacy.org/2012/04/all-done-autism-awareness/

Theoretically, I could do the protest in the morning and catch part of Maker Faire, but after a morning where I'm likely to have people shouting bad names at me, I probably won't be up to pushing through crowds at Maker Faire or representing TechShop.


I am a person, not a puzzle.

Care vs. Cure

One issue that persistently divides autistic self-advocates and their critics is the value of seeking cures for autism, and I believe part of the reason this is so misunderstood is that care and cure are conflated. Today I'm going to address this distinction and try to clarify the rejection of "cures" by the autistic community.

"Cure" derives from the traditional medical model of disability, which can be summarized as the belief that people whose differences prevent them from participating fully in society need to change, or be changed, to fit society's expectations. This is is contradicted by the newer social model of disability, which proposes that society can be more flexible to accommodate people with differences.  For example, if someone can't walk and uses a wheelchair, there are two ways to help them be independent. Under the medical model, the solution is to cure the condition so they can walk. Under the social model, the solution is to provide curb cuts and elevators so they can travel independently.

In the context of autism, you see this application of the medical model of disability when professionals and parents say that autistics will be miserable unless their autism is "cured" or that autism is such a "devastating disorder" that we must work to prevent future children from being born with autism. Deconstructing this would take a whole blog post, so let's just get to the point of today's blog: the false dichotomy of "curing" autism vs. autistics attaining a reasonable quality of life.

This is where the conflation of "care" and "cure" are problematic. There are no "cures" for autism; however, there are many ways to provide care for autistics that improve our quality of life and maximize our development over time.

"Care" simply means providing support to make differences less problematic, acknowledging that the person will still be different, even though their functional capacity may improve over time. This is consistent with the social model of disability and the principles of independent living.

In developmental disabilities such as autism, this is a very important concept to understand. "Curing" someone's autism would mean somehow transforming their nervous system, including (and perhaps especially) the parts of it that determine their personality. (Although plenty of non-autistics would settle for autistics behaving "indistinguishably from their peers" even though their thoughts and sensory reactions are still autistic--plus they feel shame for the way they were born.)

Caring for someone autistic would mean teaching skills they don't automatically learn, finding compensatory strategies for sensory issues or areas of reduced skill, and providing assistance for tasks they can't do on their own. And if they have comorbid medical conditions, care includes treating the medical conditions instead of blaming them on the person's autism and assuming that the only solution is to "cure" the autism.

Certain health problems that seem to be common in the autistic population, such as seizure disorders and digestive issues, can also seem to worsen the severity of autism symptoms. Often, parents who treat the medical issue and see improvement claim this "cured" the autism. Relieving these medical issues allows them to interact with the environment more effectively, but they are still autistic. However, if an autistic does not have seizures, anti-seizure medication is likely to give side effects without benefit; if they don't have celiac disease or related digestive issues, a GFCF diet would be expensive, stressful, potentially nutritionally-deficient, while offering no benefit.

Parents who spend their time and money seeking to "cure" their child's autism could be spending that time on better care that would help their child develop to their full potential, even if that potential may not be what the parents expected. For example, many parents chase so-called "biomedical cures" to "recover" their children because they assume, for example, that the right combination of chemicals will reverse the autism that prevents their child from speaking. (Today's not the day I'm addressing the issue of subjecting children to untested and often painful treatments.) These treatments are often costly and time-consuming, but because they offer the illusory hope of a "normal" child, parents will often pursue these treatments rather than finding other methods of communication.

Many autistic children (and adults) communicate successfully by methods other than the spoken word. One simple but successful method is the Picture Exchange Communication System (PECS), which is based on cards with pictures. This is the predecessor of various Augmented and Alternative Communication (AAC) devices that can speak for the user. The main drawback of the original systems was their bulkiness and expense, but this has been mitigated somewhat in the adoption of the iPad by many families.

It might not be "expected" social behavior to walk into a store, a restaurant, a doctor's office, or even a job interview with an iPad that talks for you, but if it works, society can just broaden its expectations. This technology could even be useful for people without autism, much the way people have come to expect curb cuts when they have strollers or rolling luggage. Imagine not having to stress a sore throat by talking because it's no big deal to just open a talking-app on your smartphone or tablet. Imagine being able to speak this way if you lost your speech abilities after a stroke or injury. It might be slow compared to just speaking naturally, but it would give you more independence than not speaking at all.

I don't think we need a laundry list of autism manifestations and how to apply principles of "care" to each one instead of "cure." My point is that parents who apply the medical "cure" principle to their relationship with their autistic child will be much more frustrated than those who apply care principles. They may very well create a self-fulfilling prophesy that their child will be unhappy--because the parents have forced unnecessary medical treatments and treated them as a burden and a disappointment.

Many parents and their children are enjoying the benefits of doing the best they can with what they have, even for children who are severely affected. Many autistic children have great joys in life, whether or not they do everything non-autistics do--and the same with autistic adults. One of the biggest obstacles for adult autistics is prejudice based on ableist assumptions. We face prejudice and offense taken about things we do not do maliciously, such as flapping or failing to recognize people, and the assumption that anyone who needs care and support after childhood is a failure.

Fighting this prejudice is the core of Autism Acceptance Month, rather than Autism Awareness Month. Although the group that widely promoted the worst stereotypes about autistics in the name of "awareness" has toned down some of their rhetoric, most of what the public thinks about autism and autistics is still very negative. We are still "othered" because of our differences from the social norm. Those promoting the "cure" agenda use our differences against us to raise funds for a "cure" or to prevent us from being born. Previous generations were hidden in institutions or in plain sight as the weirdo who got bullied. 

Until society sees autistics as people with differences who need social acceptance and perhaps some degree of care, rather than as poor broken people who need to be cured, autistics of all ages will face difficulty in living the best lives they can.

Introduction: Nothing about us, without us!

I don't know if I have anything particularly unique to say about autism, but finally I realized that it's valuable just to have another autistic speaking up in support of the autistic community. (And if I'm blogging, maybe I'll get it out of my system instead of ranting to my RL friends.) A lot of other bloggers have discussed the most common issues, so I'll be linking to their posts pretty frequently.

Why now? Well, April is Autism Awareness Month, and the largest and best known autism-related organization has a lot to say about autism and autistics that we'd rather they not say about us. Although evoking pity for autistics and fear of autism affecting one's family is a great way to raise funds, it doesn't exactly help create a better world for autistic children, now or when they grow up. These organizations have such a negative, medicalized view of autistics that they don't include any adult autistics in their leadership, unlike organizations benefiting the Deaf or Blind communities, for example.

As the disability rights movement puts it, Nothing About Us Without Us!

Many members of the autistic community (and even the more positive members of the autism community) prefer Autism Acceptance Month. Instead of just making people "aware" of the symptoms of autism, why not promote the idea of accepting autistics?

I know a lot of people will read that as "you don't want my nonverbal child to learn to speak," but that's not what I mean. That's confusing care with cure, which I'll be discussing in my next post.