Monday, April 16, 2012

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:

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.

Monday, April 2, 2012

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.

Friday, March 30, 2012

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.