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!

Don’t Mourn For Us. Even as a phase.

In 1993, Jim Sinclair wrote what has become a key foundational writing of the autism movement – Don’t Mourn for Us.  It is time to move past this as a community however.

In 1993, Jim’s words were revolutionary – you may need to mourn for the imaginary child you didn’t have on the path to accepting the child you actually have. That the child you mourn for never existed.  That you need to go through that phase and move on. That you may need to mourn for the loss of your dreams and expectations, the realization that you never had what you thought you had (a neurotypical child).

That’s powerful and I won’t detract from Jim’s words here.

But it’s time to move past that. It’s time to move past the expectation that it is normal and okay to be upset when you find out your child is autistic. Even if that normal and okay upset isn’t directed at the autistic child, but directed at this mythical non-existent child you thought you had.

The gay community has went through this. 25 years ago, a child telling their parent, “I’m gay” would cause grief, denial, anger, etc. If the parent was a good parent, they would move past this phase and embrace their child. That was considered a great thing – that the child only had to watch mom and dad mourn for a bit, and that mom and dad got past it.

Today, we see story after story of a different reality – that of mom and dad saying, “That’s awesome, let’s celebrate!” There is now, in many families, joy that their child is living their life in a way that makes the child happy and complete.  Not sadness for loss of expectations or an imagined child, but joy.

Near the end of Don’t Mourn for Us, Jim says:

After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”

I say parent’s can do this without letting go.  And where they can’t, we’ve failed as advocates to express what it means to be autistic.  Just as it took the LGB community years to get to the point where many parents no longer have to go through a -1-2morning process, it can take us years to get there.  But make no mistake – that is where we need to go.

We need to go to a world that finding out your child is autistic is no more tramatic or horrible or scary than finding out your child is gay (yes, I realize some people don’t have parents that can accept LGBT people – but that’s changing and the next generation will have an easier time, until one day no child is rejected on the basis of LGBT identity). Yes, your child may be disabled. Yes, your child may need to be raised differently than non-autistic children. Yes, your child may not be able to do some things (what child can do all things?). But I’m waiting and looking forward to the day when we don’t talk about how you need to love the child you have, this new-to-you creature, but rather that you just keep loving the child you’ve always known. Sure, you have a new label, but you knew your child before and you will still know your child.

THAT is what I want to see for the autistic community. Maybe that’s radical, but I don’t think it is. I think it is possible, even today, and should be the expectation. Sure, we should recognize the reality that some parents will have to grieve over the child they never had. But that doesn’t mean we should normalize this process or assume that everyone has to go through it. They don’t. It’s okay to not mourn. It’s okay to not mourn for any child, imaginary or real. And that should be the expectation for normalcy of parenting, with compassion (but not normalization) extended to parents that might not quite be here yet.

Making the Privileged Feel Better

What kind of things do physically disabled or blind persons need?  It’s simple: access to society.  The specifics are different – the wheelchair user might want to be able to go to school or work without having to literally drag themself up a step.  And the blind person might desire websites that are usable with screen readers.

Of course, these aren’t the only things desired – there’s a lot of inaccessibility in society as a whole that needs to be cleared up.

So, what do social justice minded, but non-physically disabled, non-trans, and non-blind people come up with? We need to worry about our language. We need to avoid saying, “Let’s run out to the store,” because that erases the existence of someone who rolls out to the store. We need to avoid saying, “Did you see that movie?” because that’s abelist and erases the existence of people who experience movies without using sight.

And that sounds good.  It sounds good to say, “Did you experience that move?” or “Let’s go to the store” rather than the abelist, yet common, alternatives.

Yet, I’m going to cry out and say, “ENOUGH!”  Not because I think these are bad things to think about, but because, too often, what is behind these suggested changes is a bit more sinister than it appears. Sure, it could be a sincere desire to think about others. But where it fails is in actually listening to others.

For instance, my (albeit limited) circle of friends includes a couple of blind people who “watch TV” (their words, not mine), and neither would notice (or care) if the TV picture was present or not.  My wheelchair using friends “run to the store” occasionally, in their words. It’s important to listen to their words.

Sure, there may be people who are blind or physically disabled who dislike words like “see” and “run.”  But most blind or physically use these words exactly like the rest of us: as something other than literally seeing or literally running.  Few non-physically disabled people literally run to the store: we hop in our cars and drive, or, if we don’t drive, walk or use transit.  But little actual running is involved. As for “seeing” TV or  a movie, a better word would likely be “experience” to reflect literally what is going on, but seeing, in context, basically means the same thing.

Now, I recognize I’m privileged, and could be an ablest ping now - and hope that people (particularly people who aren’t privileged in the same way) speak up and let me have it, if they believe it’s appropriate.  I can demonstrate my true character by listening to what is said.  But, at the same time, I do believe I’ve listened to disabled people and that this type of language is not viewed as insulting, as it seems to be used by the vast majority of people for whom it is supposed to be insulting.

It’s also – ironically – appropriated words like look, see, run, walk, etc, which have a general meaning, and made them into words that can be used only when referring to the privileged classes! In essence, privileged people have decided when these words are appropriate or not, rather than allowing the non-privileged people to tell us what they find offensive and how we should respond to that.  That’s both arrogant and dismissive, and the utter opposite of respect.

But it feels good.  It feels good to look at yourself and say, “I’m more progressive and social justice minded, because I know there are wheel chair users in the world, so I avoid using phrases like, ‘take the dog for a walk’ or ‘running to the store.’”  It’s the same old thing that always makes privileged people feel good: being better than someone else (in this case, it’s mostly the other privileged people who aren’t so liberally minded, but it is done by “walking” over the top of the very people for whom this language is supposedly changed for).

I’ve written about this in a different context – the use of the prefix “cis-” to refer to non-trans people.  While I can find some trans people who do feel people should use the cis- prefix to identify themselves, and it’s a lot harder to find wheelchair users or blind people who object to the language such as “run” or “watch”, I find a striking similarity. I don’t like the term cis- because I feel it erases the existence of binary-identified trans people, particularly post-op transsexuals, and their self-identity. But I get shit for that stand. Ironically, I’d say 99% of the people who have a problem with my word choice are binary-identified and passing as – and thus taking the role of – someone with binary, “cis-gender” privilege.

Now, I recognize the social implications and difficulties faced by minorities trying to express upset towards something the majority does.  So I recognize that even if I was being offensive to trans, blind, or physically disabled people (among others), it’s very likely they would say nothing to me about it. Thus it would be wrong to assume that I’m not wronging them. But it would be equally wrong to not listen to the people who are speaking and advocating from a minority group and to find out what their concerns are, rather than simply assuming that I know what their concerns are, and thus can tell people how to treat “those people” with respect.

It’s actually got a lot in common with the “autistic” vs. “person with autism” debate, which comes down to whether or not autistic people get to define their terms and decide what is or isn’t offensive to us (most of us have decided “autistic” is not offensive).  Yet, well-meaning, socially minded people will actually argue with us and tell us we’re wrong – that we should be offended by “autistic” and should be glad to be referred to with the much-more-respectful “person with autism” label. In other words, they know best about our lives and experience.

Well, they don’t.  No matter how good it makes them feel to think they do.

Driver’s Licenses, Autism, Privilege, and Outing

There’s still a lot of discussion, from people I respect, about driver’s licenses, particularly in the State of Virginia, USA.  I’ve already written a bit about this, but I want to talk about why I’m uneasy about most of the opposition.

Most of the discussion around the VA license has to deal with, essentially, branding a person with a permanent label of autistic, which will impact employment, police officer interaction, and other daily life in negative ways.  When pointed out that the law would require 16 year olds to apply for an ID or license, not their parents (unless they are incompetent legally, which most people aren’t, even severely disabled people, at age 16) or others), and it requires the kid’s signature, a lot of the risk seems to be gone.  It’s a voluntary thing – if you feel the risk is severe, don’t apply for a designation of autistic on your license!  Simple!  If you can serve your needs better with “autism information cards,” that’s awesome.  You should do that instead.  But I’m not pleased when people oppose choice because some people may be hurt by making their own choice.

But the inaccuracies aren’t my only concern with the opposition.  I’m equally concerned that people seem to be speaking about – basically – concerns of those who have privilege, ignoring those who don’t.

Many autistic people, like many LGBT people, would never be “pegged” as part of a stereotyped group, if they chose to live their lives acting as a neurotypical (or a straight person).  Of course acting is hard, but some people find it necessary, because of the prejudice against them.  It’s for this reason we have lots of closeted autistics (and LGBT) people.

But not everyone wants to live in the closet. Nor does everyone have the choice of living in the closet. For some people, being their authentic selves, publicly, is either life-saving or simply unavoidable. For these people, a designation on their license is not going to cause prejudice (and may mitigate it by making the person’s public declaration of self and/or unavoidable expression something that can be validated and not attributed to other things).

There’s a lot about employment, and concerns that my employer will see my license. I’ve never shown a driver’s license to any employer. I’ve used passports, birth certificates, social security cards, and the like, but there are plenty of ways to get jobs without an employer seeing a license – and I’ve never been asked to show identification prior to getting a job. That goes for any job I’ve had, from dish washer, to delivery driver, to IT director (I’ve had about 15 jobs in my life).  So, likely, even this is a non-issue, but if people are concerned about it, simply don’t put it on your license!

That said, again, there are plenty of people who will already be seen as autistic by an employer, with or without it being on their license. Preventing them from using this license to show they are autistic won’t do anything to avoid people seeing them as autistic.

But, there’s an even bigger issue: what right do I have to say, “It’s bad for me to put ‘autism’ on my license, so you shouldn’t be able to do it?”  People should live honest, authentic lives. That includes our autism status being known. Now, like LGBT people, we need to consider disclosure carefully. But as advocates we also need to work not only to make sure people who want privacy can continue to enjoy privacy, but we need to make sure that people who want to live authentic, public, autistic lives can do so.

Should a child be allowed to wear a shirt that says he is autistic? Of course. Just as he should be able to wear a shirt that says he is gay. Should he be able to tell people on Facebook or the local newspaper? Of course. And, equally, of course parents also have the responsibility to make some choices for their kids (such as deciding, “No, this isn’t a good forum to speak your diagnosis” for a very young kid, or, equally, this is a good forum). Parents do this every day with autism diagnosis – they decide who to tell and who not to tell.  They also can and should discuss autism disclosure with their children, both the pros and cons of disclosure.

Those are my concerns with the opposition. You may think it’s a bad idea to publicly disclose autistic status. That’s fine. You may even have the choice for you or your children. That’s also fine. But we shouldn’t assume that our own personal risk analysis is the same as someone else’s risk analysis.

We also shouldn’t assume that others have a choice. No, I’m not talking about being forced to put the word “autistic” on your license. I’m talking about being assumed to be autistic, drunk, drugged, crazy, or whatever other label, no matter what a piece of plastic does or doesn’t say.

I do think there are valid reasons why someone might not want the word autistic (or similar) on their government ID. And I support education efforts that don’t take away choice, but empower people to understand and make their own decisions. Would I put it on my license? Probably not. I have the privilege of passing and would probably seek to keep that privilege as often as I can. But I’m not going to assume everyone else has this privilege.