Monday, October 05, 2009

The Plague of Autism Charities

Ask me why Autism Awareness T-Shirt shirt
Ask me why Autism Awareness T-Shirt by webcarve
Create a personalized tshirt online at zazzle.
The central image is free for use by anyone, so long as it remains intact.

I review ads for Graphictruth. I try to avoid things that might offend my readers and I reserve the right to refuse accounts that offend me. I blog about ethics, after all.

I filter out make-money-fast links, anything of any sort that suggests in boldfaced text that you can make thousands working from home with little or no investment or effort, quack cures, patent nostrums, gambling sites, lotteries, sites advocating hate speech, sites that spread dangerous misinformation, promote unreasoning fear, conspiracy theories about black helicopters or vaccines. If I have reason to doubt the ethics of a site, I'll reject it out of hand.

And that is why you do not see charities for autism taking up ad space - because several of the more prominent ones meet one or more of those criteria. There are places (Like Neurodiversity ) that do a better job of due diligence. But I don't specifically blog about Autism. I'm an Autistic who happens to blog about ethics.

Today there was an ad request in my my inbox for, a group that sponsors charity runs, and allows people to "choose" which autism charity to support. There are disputes within the community as to what approach is best, what ideas are most promising and what money should go toward, so an umbrella group that allows everyone to come together for a run to support ALL approaches would seem like a good idea.

But I looked through the choices presented and found none that I could support. I'm an autistic who favors the "autistic rights" or "neurodiversity" movement. There are groups, such as ASAN that I would support. That would seem to be the entire point to such a thing, and when I suspect that I'm being presented with the illusion of choice, rather than a genuine selection of charities, I become skeptical. Sadly, there are a great many reasons to be suspicious of autistic advocacy in general.

Click the title to read the rest. I do go on, I do.

In the Autism "Advocacy" charity world, there are certain things that make me instantly skeptical. 
  • The use of "Puzzle Piece" graphics
  • Emotional Manipulation
  • Questionable Claims (1 in 150 children will be diagnosed as autistic)

The Puzzle Piece: While it's not an absolute indicator, the "Puzzle Piece" logo is considered offensive by many autistics and others on the spectrum, because it defines us as being disabled for "not fitting in."

Many of us see this as being a stance that borders on xenophobia, and even if true, is hardly helpful.

Autism Speaks is the most prominent advocate of this viewpoint has no autistic members on it's board, consistently spreads fear about the risks and tragedy of having an autistic child funds research to eliminate autism by genetic screening, and to say that promotes fear is to understate the matter.

But before before we examine the virtue of any particular group, let's just indulge in a thought experiment.

If you got a mailer from a group claiming to support civil rights, and they used a watermelon superimposed on a confederate flag as a logo, would you be inclined to read further? You would immediately know that whatever the motives of the group, they were completely out of touch with the sensibilities of those they claimed to represent.

While the puzzle-piece is not so obviously offensive, and many argue that autistics should not take offense at it, it's a fact that it is offensive to many autistics who are quite capable of articulating their objection.

I am autistic.  Also I am a jewlery artist.  First, let me say that many of us autistics don't like "person first" language.  In this, we are not alone.  Little people prefer to be called Little People rather than "people with dwarfism" and Deaf people prefer to be called Deaf people rather "people with deafness."  And of course, women are women, not "people with femaleness" and Black people are Black people, not "people with blackness."  I say this in introduction to my next comment.

We don't like to be referred to as puzzles.  We are whole people, not broken puzzles with pieces missing.  Many of us autistics find the puzzle symbols very offensive.

Leftbrain-Rightbrain (A blog that supports the Neurodiverse perspective of Autism that I ascribe to) says:

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Please read the whole thing; it's detailed and specific.

Emotional Manipulation: Let's go to the horse's mouth, Autism Speaks. Their latest video has unleashed a firestorm of objections from the autistic community, and this is not the first time they have tried this tactic.

This latest video is so blatantly manipulative, with it's imagery that reminds one strongly of 20's and 30's eugenics propaganda - that it has drawn both outrage - and parody.

After you watch the first video - note the second, related video. If Autistics cannot communicate - how can they do parody? Hm. Perhaps it's that certain people just don't listen. Or maybe "Autism Speaks" for us because we are disinclined to say what they want to hear.

The exploitation of fear is one of the most surefire ways for someone to "get rich quick" - but if it works ON you, it certainly won't BE you. Fear of some strange, dangerous other is one of the favorite recruitment tools of every toxic, cult-like movement, from Al-Queda to Defeat Autism Now.

The best investment you can make in your autistic child's future is a commitment to intense scrutinization of  treatment options. Does an approach make sense, or do you just really, really want to believe it will help? Are there real risks and only possible benefits? Do data and studies support it? If so, are they from independent sources or biased ones? New autism parents need to work past their fear and confusion, and embrace their critical reasoning skills. (If you need a skeptical thinking refresher, Michael Shermer's "Baloney Detection Kit" lists ten criteria for evaluating questionable claims.)

Parents also need to systematically track their child's therapies, behaviors, and health so they have the data to back up any decisions. Gut feelings are not reliable indicators of progress, despite autism cult members' declarations.

I wish someone had given me this frank advice after our son's diagnosis, and prevented my husband and me from becoming one of those frustrated, susceptible post-autism-diagnosis couples. Generation Rescue wasn't around in 2003, so we fell in with a more moderate autism cult, Defeat Autism Now! or DAN!. DAN! promotes the same approaches as Generation Rescue, but through a network of earnest MDs rather than Generation Rescue's and AoA's "warrior" parents.

I consider DAN! an autism cult because they recommend putting autistic children through their customized, costly, and rarely-insured diet, supplements, and alternative medicine wringer whether the child is a legitimate candidate or not (review tales of children helped by DAN!-type methods, and you'll almost always encounter kids who are physically ill in addition to their autism diagnoses; as their physical symptoms improve, their autism symptoms diminish). Think of it this way: would you send your child to a doctor known to prescribe chemotherapy every single time he or she even suspected cancer? My husband and I wanted to believe that DAN! methods would cure our son, but they didn't. It was irresponsible for our doctor to say they would -- there are no guarantees of anything when it comes to autism -- and unethical for him to continue recommending them when it became obvious that our son wasn't a responder.
That's the response of parents who overcame their panic and who are now advocates for a reasoned and individualistic response to the very real challenges Autism presents them and their child. Sadly, some do not recover and subject their children to torturous and dangerous regimes of treatment, while depleting the resources they could have used ensure their child's future.

Questionable Claims - the "1 in 150" The question here is not so much whether the number is accurate, but but what it means.

The prevalence of autism is determined in a number of ways and the number is something of a horseback guess. But it is based on real numbers. One way the number is derived is to look at the diagnosis of autism in children. This is sometimes mis-used to suggest that there's a skyrocketing rate of autism, that must be caused by some environmental factor, such as mercury. While that seemed like a promising idea, it turned out to be completely wrong. And it turned out that some or all of the increase could be ascribed to changes in diagnostic criteria. Asperger's Syndrome was not even recognized in the US until the early '90's.

But the number itself - be it one in 200 or one in 100 - is a significant number, comparable to a large ethnic minority.

It almost certainly includes people that you know and interact with. People you know in your community. People that you don't think of as being dysfunctional or different. And clearly, it could not possibly mean that all those people are so low-functioning that they cannot communicate or care for themselves. It's far too large. Nobody would have to "raise your awareness" about the issue. You would know.

Therefore, if someone implies to you that your child has a 1 in 150 chance of being a uncommunicative, subhuman vegetable that will destroy your marriage and require round-the clock care for the rest of their life, you should be very, very, suspicious.

A far more accurate way of putting it is that you have a 1 in 150 chance of having a child that is geeky enough and has enough other issues that, taken as a whole, will benefit from accommodation in some form. It's far less likely that your child will be disabled to the degree that Autism Speaks implies. But whatever the risk, if you do get dealt that card, fear, horror, panic and loathing is not going to help you cope.

At this point someone always seems to leap in and accuse me of demonizing parents who "only want the best for their child" or accuse me of having no real experience with autism.

But that's not at all what this is about. I'm not offering advice, good or bad. What I'm trying to illustrate is that there is a great deal of bad advice out there, and you can avoid a great deal of expense and anxiety by avoiding anything that tries to get you to give them money by exploiting your fear.

That's a pretty good rule for life in general.

Meanwhile, if you have question about what might or might not help you in relating to an autistic, or what an autistic might consider to be helpful, feel free to run it by me.

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