Smearing of Feces – How Common Is It?

Read any of the many anti-vaccine, alternative-medicine, or Autism Speaks message boards about autism and you’ll find that autistics have one disgusting habit that exemplifies the need to do anything, no matter what the risk, to cure us: we smear feces.

Everywhere.

I decided to test this theory.  I put up a poll and announced it on Facebook, on this topic.

The question?  “Did you or do you smear shit on walls, people, your clothing, etc? This does not include toileting accidents.”  I also added a note that I was looking only for answers from people who consider themselves autistic.  The survey was anonymous.

The results?  54 people filled out this survey. There were five options people could select:

  1. Yes and I routinely do this today: NOBODY selected this.
  2. Yes, but this was an act of protest confined to a certain time and place: ONE person selected this option.  So, at least one person did this because it would cause a scene, maybe for a good reason, maybe not, but clearly as a protest. This form of protest is hardly unique to autistic people  – the most extreme example I know of is the Dirty Protest.
  3. I did so at some point years ago as a teen or an adult but no longer do so: NOBODY selected this.
  4. I may have done so as a young child, but have not done so since: 9 people, or 17% of the sample, selected this option.  I want to discuss this below.
  5. No, I have not done this: 40 responses, or 74% of the sample.
  6. Other (with prompting for an explanation) elicited 4 responses.  The responses were two people who indicated they smeared poo once as a very young child and never did so again. One person indicated they can’t recall their childhood well so can’t rule it out, but also that they have never been told they did this, while the final person selecting this option said they did so as a toddler but not ever after that.

So, 74% of adult autistics, in this admittedly biased survey, are fairly sure they never smeared feces anywhere.  You may believe that a Facebook survey may be a bit biased towards non-typical autistics, but I remind you that if you accept the 1 in 68 number for prevalence of autistics, most autistics will grow up into adults who can read, write, and participate in online discourse.  You can’t cite this statistic and then dismiss everyone who doesn’t fit your expectations, the

What about the rest, particularly the 17% who said that they may have smeared feces as a young child? I suspect the majority of this is just people that are being honest about not knowing their childhood history. They might have, they might not have. This was a badly worded question, unfortunately.

Regardless, it’s clear that autistic adults – at least the 54 that answered the survey – don’t generally go around smearing feces after growing past the toddler stage.

And, you know what? Smearing feces as a toddler is not an unusual thing.  SeriouslyIt’s not.  Plenty of non-autistics do this.  Not everything is about autism. Even in an autistic.

Equally, it’s possible that some kids when toileting get poop on their hands – autistic or non-autistic those hands may be. And of course anyone who has seen a young child eat knows that once something gets on a kid’s hand, it gets everywhere. But that’s not necessarily bad behavior or anything to do with autism – nor is it necessarily “fecal smearing.”

Now, I’m not saying it’s fun, healthy, or pleasant to clean up someone’s fecal matter.  It’s not. It is disgusting. It smells, it’s gross, and it’s full of potentially harmful bacteria.  It’s something that parents do need to work with their kids to stop when it happens – autistic or not. And certainly this behavior – as is seen from this survey of 54 presumably adult autistic people – is not normal in an adult or teenager, autistic or not.

But, too often, woe-is-me parent boards are full of people seemingly trying to shock and outdo the next parent. “You think raising your daughter is hard? Mine smears shit everywhere!” It’s a combination of competition and proving that you have a right to be frustrated – that your child really is that bad. Your child has real autism, you see.

Want a hint? All parents have cleaned up shit. Nobody likes it.

Another strange thing? This connection – without documentation – between fecal smearing and autism is so strong that parents who have typically developing kids who smear feces (it’s a rather normal, albeit disgusting, phase many people go through growing up) are now terrified that their kids have autism. That’s just one part of how screwed up this kind of thing makes people – not only is something that is relatively normal for a kid to do (albeit gross and unhealthy) now seen as unusual, but it’s autism and everyone knows that’s horrible (okay, that last part is sarcasm).

Go, autism awareness! We’ve made people aware of something that has no apparent actual measured connection to autism, as if it is a key symptom of autism. And that something is relatively normal for neurotypical toddlers to engage in. Autism awareness messages have both scared parents of normal kids that their kids are autistic (no, this is not a sign of autism) and showed how disgusting us autistic people are. Go awareness! Perhaps that’s one more reason I hate this month of autism awareness. If I tell people I’m autistic, are they going to be scared to touch me, as I may be covered in the feces I was supposedly smearing?

This awareness has actually quantified a key element in lots of discrimination: that people who are the targets of discrimination are disease carriers and dirty. You see that in Nazi propaganda. You see that in racism. You see that in LGBT bigotry. The people discriminated against are dirty and diseased. As you would be if you were covered in feces.

Now I know not all parents are full of the woe-is-me attitude so common on too many online forums – and for that I applaud you for seeing your children as something other than an unjust punishment. If you aren’t in the woe-is-me group, please be assured I am not talking about you and that I respect both the joys and trials you go through to raise a kid – any kid.

In the meantime, I’d love to see this studied more in depth, with real scientific rigor (unlike my survey which was created as much in tongue-and-cheek frustration as a desire to find out if there may be validity to the overemphasis on feces among too many autism parents). I’d love to find out one thing – do autistic kids actually do this more often than non-autistic kids?  I suspect the answer would surprise some, but probably not actual autistic people.

Of course if people know of actual quantitative studies of this, I’d love to know about them. I’m not interested in case studies – I’ve seen plenty of those.

 

1 in 34? Uh, no shit. Uh, actually more shit.

On the Autism Speaks blog, there’s a post about parents having a 1 in 34 chance of autistic kids. No, not true.

It scares me that an organization so focused on research as they claim to be can’t manage basic math. But they can’t. Sadly I wasn’t surprised.

They use this logic: A new estimate for autism is 1 in 68. I admit I haven’t dug into this estimate much because, frankly, it doesn’t matter. If you’re autistic, that matters. If you’re not, it doesn’t. Sure, schools and politicians need to consider this number, it’s source, and it’s reliability. But the problem I have is that this Autism Speaks blog entry talks about how, for parents, it’s 1 in 34. Because there are two parents of a child.  So a parent has a 1 in 34 chance of being affected by autism.  Two parents, twice the chance.  Apparently.

Maybe this was tongue in cheek, but it didn’t look that way to me.

That said, even it if is, let me explain.  Let’s say I give every family, whether single parent family or multiple parent family a 6 sided die. I ask them to roll it.  What’s the chance of it turning up a 6? Oh, one in six. One sixth of the families will get a 6. Does it matter how many people watched the die roll? Of course not. If we take the 1 in 68 estimate as true, then a child has a 1 in 68 chance.

Ah, you say, what about a 2 child family?  Wouldn’t that be 1 in 34? Perhaps, if autism is evenly distributed among the population. However, we know it isn’t. We know there is a genetic component. There’s also tons of speculation that there is an environmental component. Regardless of whether or not environment plays a role, some families are more likely to have the genetics and the possible environmental factor than others. So, autism will tend to cluster in some families and avoid others. So, no, it’s not 1 in 34 for a two-child family.

This estimation of family impact also ignores the adults in these families – who also may be autistic. Yes, autistic people can marry, have sex, and produce children. And they do. Someone might not be able to envision their 3 year old having sex or marrying, but to be frank I can’t envision most 3 year olds doing that. If you want to accept the high prevalence of autism as a fact, you can’t then cherry pick and decide that real autism only involves people who won’t get married or have sex or have kids. You’re taking all of us, at least if I have anything to say about it, if you’re going to use us to raise money for your salary (check out Autism Speaks expenditures on salary and fund raising expense).

I’ll leave it to others to comment on the tone of the article – yet another, “Look at how much this affects people who aren’t autistic” article about “awareness.” It continues to focus on what the writer sees as the “lowest functioning” autistics (a label I reject being applied to people because there are not only two types of autistics, and much of the limitations “low functioning” autistics experience has little to do with their abilities but more to do with expectations and support). It talks about shit smearing (these types of people, focusing on how horrible things are for them, really do have an unnatural fascination with shit). I never smeared shit. Nor have most of the autistics I know! And, no, I don’t ignore people other than “highly successful” autistics. I know what your prejudice brings: most of my autistic friends can’t work, not because they lack abilities, but because we’ve built a culture that assumes disability is inability. I could explain more, but lack the time right now – but it’s in part due to the shit articles like this spread. Who wants to hire someone who will smear shit everywhere? It’s a lot of bullshit.

I’m sick of April. I wish the month would disappear. Autism Speaks has made it a month of awareness. A month where I will hear how horrible people like me are. Thank you, Autism Speaks!

Too Big to Fail

Apparently, in the autism world, there’s a concept of “too big to fail.”

Autism Speaks, apparently, is too big to fail.

Autistic self-advocates and our allies have been speaking very loudly, nearly unanimously (like anything, we won’t all agree, but we almost all agree on this) that Autism Speaks is doing more harm than good in the autism world. Autism Speaks promotes an agenda that speaks to fear and prejudice, affirming that fear and prejudice among supporters and volunteers. It speaks to the first thing that goes through a parent’s mind when they hear their child is autistic: “The world’s ended. Your child has been stolen. You won’t have a life. You’re marriage will fall. You really should have built that bomb shelter.” Okay, maybe not the last one, but they absolutely echo that message – despite plenty of parents disagreeing with it (and a large reason for these feelings is the fear and prejudice that Autism Speaks promotes).  But don’t take my word for it – search for “What is wrong with Autism Speaks” and you’ll get plenty of others who feel like I do. I’ll give one link here, from Emma’s Hope Book: What is Wrong with Autism Speaks. But I’m going to assume that most readers of this blog either just did a bit of Googling or read Emma’s link (or any number of other links out there that say the same thing).

So, we’ve been boycotting Autism Speaks and seeking to let their sponsors know we don’t like money going to an organization that makes our life difficult.

In the midst of this, we hear people dismayed that we would not seek to engage and work with Autism Speaks. Well, let me start by saying: we tried. Seriously. Many, many of us tried to engage with Autism Speaks. They do not want autistic people to have a seat at their table, except for a PR role. We’re good for publicity and fundraising, but not actually for coming up with thoughts about what would make our lives better.

But, ignoring that (and this effort continues – should Autism Speaks seek to engage in a meaningful way with autistic people, I’m sure they will have no shortage of ways to engage), there are two main reasons people say we should “engage” and not protest. First, they say “Autism Speaks does good things too.” Typically, they’ll mention local chapters that somehow do something good. Second, they’ll say, “Autism Speaks is the largest, best funded Autism organization and could do a lot of good if they could be pointed in the right direction.”

I’m not going to discuss the first right now, other than saying that while Autism Speaks does occasionally do something good, they do a heck of a lot more bad.

As for the second reason, it’s essentially, “Autism Speaks is big.” Yes, we know that. Of course they are – they are well funded, and spend almost all their resources to grow. Not through helping people, or even research (yes they spend money on research, and, no, autistic people do not oppose research; however, they spend more on salaries and marketing). I’ll add that I’m not comfortable supporting a research organization that can’t understand their own research – but my point is not about research. It’s this idea that if we don’t support this big organization, we won’t have any voice at all.

Let me start by saying that having Autism Speaks not speak would not hurt me or others at all. Nor would it hurt the vast majority of autistic people. In fact, it would allow other organizations that do understand research, that do understand autism, that do care about prejudice and groundless fear, to speak out.

Might doesn’t make right.

Nor is Autism Speaks likely to change course anytime soon. I hope that our efforts to get their attention by letting their sponsors know that donating to Autism Speaks is anything but non-controversial has an impact. I hope Autism does change course. But right now they aren’t doing anything that helps autistic people. Seriously.

A big oil terminal. Exxon-Mobil De-Kastri Terminal (public domain, by russian.dissident via Wikimedia Commons)

A big oil terminal. Exxon-Mobil De-Kastri Terminal (public domain, by russian.dissident via Wikimedia Commons)

We might as well volunteer and donate money to Exxon. After all, Exxon is big. Way bigger than Autism Speaks. And if Exxon wanted to help autistic people, they could do a wonderful job of it with the resources they have. Sure, if you sent a $100 check to Exxon, they probably wouldn’t actually use that to help autistic people. But neither does Autism Speaks. And that’s the point.

If you want to support an organization that encourages discrimination and fear of a minority population, go ahead and mail your check to Autism Speaks for Christmas. But I can suggest a lot of better uses for your money. The first one that comes to mind is ASAN, the Autistic Self-Advocacy Network. Go read about them. They could do a lot of good with your money.

But don’t just give to Autism Speaks. And don’t you dare tell me that I should support them because they are big.

Why I’m Proud of my Community (including our allies!)

This week has been good and bad.

A major autism organization started this off by posting a really horrible essay (the comments are actually good on this one, though – another thing that makes me proud of my community) about their policy summit. Besides for other horrible stuff in the essay (we’ll get to that), the actual summit will apparently consist of a bunch of people chosen by Autism Speaks to tell government “what autism says.” One group is absent though: autistic people. Our voice isn’t important to the group that claims to tell people what autism says.

Immediately, several autistic-run organizations sprang into action. I was thrilled to see an organization I’m part of, Association for Autistic Community, quickly decide, YES, this is something we need to speak out about. We joined with ASAN, an autistic-run group that is extremely effective in advocating for the well-being of autistic people, in issuing a joint statement about what Autism Speaks has done.  But we weren’t the only ones to make a statement: Autism Women’s Network made a statement of their own.

Then, we saw a powerful advocate organize a protest of the Summit. From all accounts, it was a successful protest.

See that? In the span of about 48 hours, we’ve (autistic people, that is) issued formal statements and organized a successful protest against an event. But, uh, sure, we’re not qualified to sit at the table for discussions about what to do about the problem of our existence put on by an organization claiming to understand something intrinsic to our being.

I’m proud that our community did this.

But that’s not all we did. Many, many autistic bloggers wrote about the event. Here’s just a few:

Of course some of us did a bit more digging. Lydia discovered that Judge Rotenberg Center was one of the featured exhibitors at the Washington DC Autism Speaks Autism Walk (edit: I thought it was an upcoming walk, but it was a past walk). Lest you don’t know about JRC, you can watch the below horrific video used in a trial against them:

Again, this video is very disturbing, only click if you can handle that. In the video, a kid is shocked for refusing to remove his coat.

Ironically, Autism Speaks previously issued a statement against the use of shock by JRC. Now, they featured them as a resource to parents at their most well-known event, their autism walk. Disturbing indeed. For what it’s worth, the trial ended in a settlement. I’m proud our community stands up to this and continues to fight – and publicized the support given by Autism Speaks to the only school in the USA to use electric shock to discipline students (and, yes, other students get students that had problems in other programs, a common refrain used by people to justify awful behavior).

This morning, another surprise event – John Elder Robison, one of the only (if not the only) autistic voices on an Autism Speaks advisory panel, resigned. He wasn’t the only one. A mom, invited by Autism Speaks, who personally knew Suzanne Wright (one of the founders), spoke out about the hate as well in one of the most powerful pieces written this week.

But this wasn’t all – our other allies have been here too. Parents are fed up with being told that their kid is a horrible, diseased, terrible, a drain on society, and destroying their families. And they’ve shown themselves to be the allies we (and their children need) – and very much in disagreement that they aren’t “living” but merely existing (as, apparently, a family with an autistic family member exists, and doesn’t live, according to Autism Speaks). They’ve all written brilliant texts that show their main worry about Autism Speaks isn’t political gain, but rather the well-being of their child. Autism Speaks hurts their children.

 

(edit: I also came across this after I made the initial post) And then there’s people like Spaz Girl who aren’t parents of autistic or autistics but might be classified as “just an ally” (there is no such thing as “just an ally” – you all are very important). She wrote This is the Week that Autism Speaks Meets its Downfall.

(edit: added to the original post) Special education professionals also are speaking up! Tim wrote, “The Best Argument Against Autism Speaks: A Special Educator’s Perspective.”

(edit: also after I made the initial post) Even the Autism Society of America (historically hostile to autistic people, but this organization has seen tremendous change in the last few years) has made a statement.

I am proud of my community. I’m proud of these allies. I’m proud that there are people in my community who get it. Who understand that slick advertising isn’t enough, that there actually has to be some substance behind saying you care about autistic people.

I’m so damn proud. We don’t need Autism Speaks to speak for us. Thank God.

The Cost of People

Autism Speaks has said we cost society over $2.3 million over our lifetime.  From their recent event about us and without us:

Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime, and it will be well over $137 billion dollars for all our children.

Actually, Suzanne Wright, one of the founders of Autism Speaks, misquoted her own orgnization’s research, that said:

This research found that intellectual disability plays a major role in the cost of autism to individuals, families, and society as a whole. The costs of autism per year are nearly twice as high on average for children and adults with intellectual disability than for children and adults without intellectual disability, $2.3 million in the U.S. and £1.5 million in the U.K. ($2.4 million) for those individuals who are impacted by intellectual disability compared with more than $1.4 million in the U.S. and £917,000 ($1.46 million) in the U.K. for those who do not have intellectual disability.

They further claim that 45% of individuals with ASD (Autism Spectrum Disorders) have intellectual disabilities.  There’s a lot of reasons why this 45% number is inaccurate, but it doesn’t matter to this discussion.  Let’s just assume that Suzanne did new research that found our cost of autism was $2.3 million over our lifetime.

Usdollar100-mediumTheir research hasn’t yet been officially published as far as I can tell, and, thus, not peer reviewed.  So I don’t know the factors that went into deciding what a “cost” is.

For instance, my family has a mortgage payment. Is that a cost? Is it a cost if it is paid for out of Social Security? Is it a cost if it is paid out of employment? What if I rented? If I was in a group home, is that a cost? Is it really a cost to society if someone is being paid with this money, who then uses that money to pay for things like their house?

So let’s look at neurotypicals, while we figure out cost. I would say that US residents cost more than Chinese residents. And I can prove it.

China sets their national poverty line at 2300 RMB per person.  That’s $377 per year, according to Google. I imagine it’s pretty darn tough to live on $377 per year or less per person (somehow 150,000,000 Chinese are making this) but the World Bank says that this is the minimum necessary to live to their standards on, so I’ll take their word for it.

In contrast, the USA’s poverty level, set by the USA government is $23,050 for a family of four, or $5,762 per person (note that different family sizes have different poverty levels).

Now, one could take these apples-and-oranges numbers and say, “Wow, poor Americans cost society 15x more than poor Chinese!” (if you looked at rich Americans and rich Chinese, the numbers would be much more dramatic).

Or you could say this is a bogus comparison. Costs, standards of living, and measurement of poverty differ between the two nations. You can’t compare things that way. But you also can’t say that the American who owns a beat up car (a luxury most Chinese don’t own) is necessarily wasteful – maybe he is, maybe he isn’t (and certainly not all Americans own cars), but regardless he probably doesn’t see his way of getting to work as waste.

Now, I’m not saying China is doing well – obviously when you have 150 million people living on less than $377 a year, there’s a major problem there, and something the rest of the world should care about (although, generally, we don’t).

So, does that American cost world society more than that Chinese? Is this even a valid question to ask?

200px-Carbon_dioxide.svg

Lewis Structure of carbon dioxide, from Wikimedia (Public Domain)

We can try looking at another measure, CO2 emissions. These emissions cost the entire world, not just the country they are created in. Everyone int he world pays for these emissions. So let’s look at China and the USA, the #1 and #2 CO2 emitting countries in the world.

China emits 6.2 tonnes of CO2 per person, according to Wiki in 2009.

The USA emits 17.2 tonnes per person.

So, here, the USA hurts the world about 3 times more than China does, on a per-person basis (of course China has more than 3 times the people so as a country they create more CO2, but they create less CO2 per person).

For what it’s worth, Qatar leads the world in per-capita CO2 emissions at 44.0 tonnes per person, about 2.5x what the US and 7x what China does.

So, is the American not costing the world, while the Qatar citizen is costing the world immensely?

Regardless, how much CO2 cost does the average autistic have?  How does that compare to the successful business executive?  Who really costs more?

What people really mean when they say someone costs society is that someone gets the money that provides for their living through a method that isn’t considered noble or acceptable. It’s noble to be a rich guy who made millions out of selling bogus securities on bad mortgages. Or the guy that knows that a good deal of the people receiving student loans don’t have a chance in hell of actually being able to pay them back, but knows that he can rely on insurance and the government to bail him out. He’s not costing society, even though that student will not be able to purchase a house or start a family because of the crushing loan.

Often people think there is a cost if someone isn’t working. There are 5.1 million stay-at-home mothers in the USA.  That’s 1.7x the number of autistics, according to Autism Speaks! Are they a drain on society? After all, they aren’t working. Yet I never see articles talking about the cost of stay at-home-moms (for good reason).

189px-Lindsey_Graham,_Official_Portrait_2006

Senator Lindsey Graham

Or we can look at people who receive income and services from the government.  In 2011, the average Congressional salary was $174,000 per year.  So, assuming Lindsey Graham made average salary, his 20+ years of congressional service cost us $3,480,000 – not other benefits, which are substantial.  Regardless, it costs us more to have Lindsey Graham in office for just a small portion of Lindsey’s life (20 years is just 27% of a 75 year old estimated lifespan) than it costs for a lifetime of support for an autistic with an intellectual disability, according to Autism Speaks. Assuming a 75 year lifespan, the autistic that “costs” 2.3 million USD will cost, on average, $31,000 per year.  That’s substantially less than the $174,000 we pay the average congressman – 5.6x more than the autistic with intellectual disabilities.

What’s interesting to me is that people allow this type of rhetoric at all. It’s absurd to try to figure out if a Congressman or an autistic person “costs” more. Particularly when cost is a value-laden term – does it cost more if I receive social security and take the bus or if I work and drive a gas guzzling car? If I’m Chinese or American? Do I cost less to society if I create a financial system full of bad loans or if I receive food stamps?

It’s bullshit. The existence of people doesn’t cost society anymore than the need to eat does. You can’t have a society without food. Or people.