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!

Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

A Little Knowledge is a Good Thing?

We’ve heard it a lot.  We need more awareness.  Whether it’s racism, ablism, homophobia, or something else, it’s about awareness.  Once people understand, they’ll become decent humans.

That’s somewhat true – ignorance does cause a lot of problems.  But there’s a problem with just thinking awareness will solve it.  People who aren’t good at something often think they are – see Dunning-Kruger Effect.  Of course what Dunning and Kruger studied was areas where people already thought they had some understanding – things like humor.  Very few people are completely incompetent at humor (that’s no joke).

Ask an 12 year old who is reasonably good at math if they are good at math, although maybe not quite a genius at it.  Now ask a math professor with years of post-graduate research.  I’ll be the math professor rates himself lower.  He knows a lot better how much math he doesn’t know.  He also probably knows some really, really, really great experts in math.  The 12 year old probably doesn’t.  He probably wouldn’t even define math the same way.

But what if you ask someone about astrophysics?  Or auto mechanics?  I’m not sure, but I know in other commonly-perceived to be difficult tasks – such as chess or computer programming, people generally underestimate their skills compared to their peers – they think others are better than they are, even when they aren’t.  The key is that people focus on their own skills – if they feel reasonably competent at something, they are of course above average, while if they don’t feel competent, then they are below average.  And of course you don’t feel average about things you know nothing about – even if most people also know nothing about them.

How does this apply to disability or other minorities?  I think it explains a ton of mistreatment.  Someone who knows nothing about a minority or disability, and knows it, will probably be decent.  Why?  They’ll listen.  And since everyone with a disability or who is a member of a minority (or both) is unique, that’s important.  Lack of knowledge in this case is actually a good thing.

What happens when someone has had an hour or two of disability awareness, LGBT sensitivity training, or racial relations education?  They now know a lot more than they used to – not enough to actually be useful, but more than they did.  They know more than a lot of people do, and almost certainly more than they think most people know.  They’re feeling pretty good about themselves.

That’s dangerous.

That’s dangerous because it’s exactly then that people make assumptions.  “Oh, I know about blind people.  They want me to tell them where their food is on their plate” (they may, but they also might already know – before you spend 5 minutes explaining, you might ask!).  Meanwhile they will not think of telling the blind person, “Your bathroom curtains are open, so you’ll probably want to close them before you shower.” That wasn’t covered (again, you should ask and not assume!).  But if they asked the blind person, “Do you want any help, and if so, what can I do?” the blind person would probably let them know what they should (or shouldn’t do).

I’ve seen this with LGBT issues – if someone knows the words (What’s a demisexual?  What’s a cismale?  What does “curious” mean when someone talks about their orientation?), then they see themselves as fairly knowledgable.  But of course there’s a lot more to understanding the LGBT community than knowing definitions – people literally spend their lives trying to understand the LGBT community from both the inside and the outside of that community.  Even more significantly, if I know a man is gay, what do I know about his attractions?  It turns out, not much.  Sure, I can probably guess he’s likely more attracted to men than women in an abstract sense, but I have no way of knowing from just knowing he’s gay if he’s attracted to any specific man.  Or if he says he’s straight, that doesn’t mean he hasn’t had consensual homosexual sex.  But too often the thrill of being educated about LGBT issues hides the complexity of real lives.  Someone that knows nothing will probably be more receptive to some of the complexity.

With autistic people, what I fear most are people who have been exposed in very limited situations to autistic people (for instance, worked part time for a short time in a group home or institution).  They don’t know what they don’t know – they’ve seen only a few autistic people in only a few environments.  They’ve heard about them from others that share their primary experience of being in those environments with autistic people.  So it starts a bit skewed.  Add to that, the person now knows a lot more than they did before, assuming they knew almost nothing about autism.  They now have awareness.

Awareness isn’t the same as competence or understanding, however.  They know only a little bit.  Unfortunately, people often think they know more than that.  This goes both ways in the autism community – people generalize about adults on the basis of a child they know.  Or adults with autism, who haven’t had children, generalize about parenting when they have little experience other than having been raised by parents.  A little knowledge is a dangerous thing indeed.

If I want to tell someone about my autism, for any reason, I hope and pray that they don’t know anything about autism.  If they do, I have to figure out what they know and somehow unteach that part of it from them, or at least provide evidence it doesn’t apply to me.  That’s difficult (how can I know what they’ve been taught?).  It can be downright deadly in a medical environment – if the doctor associates autism with crazy, you may receive treatment for “crazy” while your primary complaint is ignored.  A little knowledge is dangerous indeed.

Yet, if I’m in a medical situation and the person has never heard of autism, then I’m in the position to teach them what matters for me.  That’s actually a better place to be in.  I can explain that it makes it hard for me to express that I’m in pain or localize a symptom or make appointments.  Rather than having to teach that it doesn’t mean I’m violent, don’t want to socialize, can’t participate in my own treatment, or whatever else.  It’s a lot more efficient to be the first person to tell someone.  It’s nice when I don’t have to break through the wall of “I already know about this.”

Maybe awareness is good.  But not in small doses.

 

The Awareness I Want to See

I want to see us move on from the past and move into “I didn’t mourn for you.” To me, that will be true autism awareness.

I’ve heard the argument that people need to mourn when they find out their child is autistic. I get it. I even get the argument about how they mourn for their own lost dreams when they realize they child they have is not the child they though they have.

But, you know what? We don’t have to have mourning at all.

I look at the LGBT community. 20 years ago, it would be pretty darn common for a parent to be sad, mourn, maybe even be angry when their child said, “Mom, dad, I’m gay.” The best, most pro-gay parent groups at the time talked about the need to give yourself (as a parent) time to adjust to who your child is, and that it’s okay to feel sadness. That it’s a real, authentic feeling.

Nobody doubts the sincerity of their feelings. But that didn’t make it right. While I applaud people who’s views about homosexuality have changed after a family member came out – and am genuinely glad they now accept their child – the reality is that before their views changed, they saw homosexuality in a negative way, not a neutral and certainly not a positive way. It took something very powerful – the love for their child – to help them overcome their own prejudice.

Now, I’m not saying these people are horrible people for having once held prejudiced views. They have changed, after all. And that’s admirable. But at the same time, wouldn’t it be even better to not have been prejudiced in the first place? We can’t necessarily help our upbringing and our ignorance, and, yes, how we respond when confronted with new information is what truly matters. But at the same time, do you not think a gay child (who hasn’t yet come out) is going to feel more comfortable coming out in a family where the parents have already shown acceptance of gay people rather than in one that it will take a process for the parents to grapple with their past prejudice? Of course it’s better to have the acceptance early, not just late.

Likewise, it’s possible for a parent to not be crushed when they find out their child has an autism diagnosis. It’s possible for them to say, “This is part of who my child is” and move on, without tears and pain and fear. And I think focusing so much on the need for some to mourn (which, obviously, is legitimate) keeps us from seeing what the world could look like. The world could be a place where “your child is autistic” doesn’t sound like a death sentence or a painful disease.

As an autistic adult who likes who he is, I’ve found I now have to add a disclaimer: Yes, of course, I’m not saying you should like seizures, aggression, pain, or anything else like that. But of course those things aren’t autism either. And before you make assumptions about me and my life, disabilities I do or don’t have, I challenge you to consider your assumptions. I’m not saying I’m just like your kid, but at the same time, don’t expect me to be happy when you say, “but if you were like my kid, you’d hate autism.”

I’m just wanting “your child has autism” to be seen as what it is: another insight into the makeup of your child. Alone, that statement doesn’t tell you much about the child. It doesn’t tell you if they will have an easy or hard life, if she’ll excel in academics or her career, if she’ll get married or have kids, or even if your family will be able to do A, B, or C – whatever A, B, and C are. It’s possible to not go through months of mourning for that child you thought you had.

Now, maybe you need to go through that. That’s fine, and it’s certainly better to go through it and come out the other side with a positive view of autism than for you to simply hold onto that view. But wouldn’t it be nice to just skip the mourning completely, and continue to celebrate the child you already have? That’s the vision I have. A vision where no autistic child has the experience of bringing devastation to their parents just for having a name for the type of person they are.

That’s the world I want to live in. That is autism awareness and acceptance.