Stereotypes and Advocacy

I’m sick of many of us in advocacy simply stereotyping people who are not part of our particular movement. Stereotypes and assumptions prevent us from communicating. Too often, rather than listening to what someone who is not one of us says, we simply assume that they believe what other people with a certain trait believe.

Parents, professionals, and therapists deserve to be treated with respect. As all people do.

Sure, a lot of time the people doing horrible things to autistics are parents, professionals, and therapists. So they don’t get a free pass just because they had a kid or have a professional job.  But, at the same time, before we pronounce someone guilty, we probably should make sure they really are guilty – not with accusatory questions, but by sincerely listening.

We don’t want to be tone policed in advocacy circles. If I need to express something happening to my people that is harming them, I shouldn’t be silenced unless I can say things politely. I agree with this.

That said, if I can say them politely, I probably should. I should at least try a decent interaction with people, with an assumption that the person may be a potential ally, not an enemy, who simply doesn’t know any better, who is doing something a certain way for a reason that negates my concern, or simply doesn’t know any better – but agrees that autistic people (or whatever other group) need to be treated decently. If they prove themselves otherwise, fine, be an ass. But let’s wait until they prove it, rather than having us assume it. There may be nuance that I don’t know about unless I ask.

I’ve had this in my own advocacy. Sometimes I see something in the advocacy world that I don’t think is particularly effective advocacy – so I speak up and say so. I try to do so respectfully, sometimes I do, sometimes I fail. Like all of us. But more often then not, the response isn’t to read my words or listen to my thoughts, getting clarifications when something is unclear. No, it’s to read one thing and then dismiss everything I’m about to say, on the basis of what stereotypes about people who say that one thing think.

I’ve seen this in my arguments against the widespread usage of the word “cis-” to refer to people who are not trans (ex: cis-male is a person born with normal male genitals and treated as a boy/man throughout his life, and who identifies with that identity). The initial assumption is that my actions are formed by the same ignorance and arrogance that causes some to fight against the word – but my thoughts are quite a bit more nuanced than that. But it’s hard for me to express them, because the initial assumption is that I’m full of shit and saying this for the same reason they’ve seen others say this (and there is a lot of bullshit on the web about what is wrong with the cis- prefix, bullshit that is horrible and wrong and definitely anti-trans).

Yet, I make an argument like that, and people make assumptions, without really listening to what I want to say. And, often, these people are advocates for some cause. I probably agree with them far more than I disagree, but they immediately put me in the category of “hateful, anti-trans bigot”, assuming that I hold a bunch of other views (on things other than cis- prefixes) that I don’t hold, because I hold a view on the cis- prefix that is contrary to some of the louder advocacy right now (that said, I’m not the only person that holds this view for the reasons I hold it).

I’ve seen it in other areas of advocacy too. People are fine making assumptions about you if you don’t say exactly the right words, exactly the right way. I might say I don’t support food stamps, which is an accurate statement of my beliefs (for people outside the USA, food stamps aren’t stamps anymore, but are assistance given by the government that can only be used to buy food). Immediately, I can sense my readership getting angry, about to tell me a few pieces of their mind. Some people stopped reading and declared me a conservative asshole. Others assume that I must never have been without food, because if I had been, I could never say something like this. A lot of stereotypes.

Of course when I say I don’t support food stamps, I’m talking something else entirely. I agree with economists that food stamps are a wasteful, inefficient redistribution of income that doesn’t help the economy as much as it could, which doesn’t get people out of poverty, and which is inefficient for the person needing assistance. Oh, again, I’m in the conservative asshole category in the eyes of my readers! I also agree with the most progressive anti-poverty activists (who, ironically agree with the economists!) in that cash distribution is a much better way of helping poor people than earmarked funds are. Rather than giving a family $400 of food assistance, $600 of rent assistance, $350 of medical assistance, $200 of transportation assistance, why not give them the cash for these things? Maybe they can economically eat for less than $400 (I couldn’t if I had a family, but some people have resources I don’t have or abilities I lack). But to get that better job, they need $250 in transportation assistance. Why shouldn’t the people most connected with their needs make that decision? (hint on why people disagree with me: “What if they buy $1000 of lottery tickets?” And that’s a legitimate concern – what if someone runs out of money in the beginning of the month? We can’t let their kids starve. And I agree with that – I won’t get into details now, but there are solutions for that too that don’t involve kids starving; but that said, contrary to what most people seem think, most poor people aren’t poor because they are too stupid to spend their money on food and rent, but rather they are poor because they don’t have enough money – and will spend money they have wisely).  So my view isn’t “Cut support” but rather “Put people in charge of determining what they need, rather than us dictating.” This isn’t even a fringe view – most people who study this field (poverty) would agree with me, including people in government. But it is opposed from the right wing (“ABUSE!!! THINK OF THE ABUSE!!!”) and from other advocates who only read “get rid of food stamps” and immediately make some assumptions. So it probably will never happen.

When we listen to a parent speak, we need to be careful to not make any assumptions. Maybe the parent is an awful curebie who wants sympathy at any cost to their child’s privacy, so is fine posting exaggerated stories about shit smearing on their mommy blog. There certainly are plenty of parents in this category. But maybe they are talking about what they are talking about in a respectful, appropriate way that respects the child’s privacy.  Maybe the child is old enough to understand the implications of consent and has given it, but the mother didn’t know that she was going to be stereotyped as a “mother who wants sympathy” and thus needed to make it clear she didn’t fit the stereotype. But we should be listening, and asking non-accusatory questions, giving people not the benefit of the doubt, but simply recognizing “I don’t know here, but it’s important.”

Now, a good ally won’t be bothered by someone confronting them over a stereotype the self-advocate has about the group the ally is part of. Even if it’s done somewhat aggressively and rudely. They’ll recognize that a minority community has to put up with a lot of shit, and sometimes that is expressed in direct, up-front ways. They’ll see where the pain and anger is coming from. Or maybe the ally is wrong, and does need to be corrected, and is willing to be corrected (if they are an ally, they will listen; note that I don’t believe an ally to autistics has to agree with any one autistic on anything, either – and that’s where things get complicated and messy).

But at the same time, I think sometimes we get a bit too aggressive in our advocacy, seeing enemies that aren’t there. Advocacy is very nuanced much of the time, and not about just the big major things. It’s not just about whether JRC is giving electric shocks to their prisoners (they are, and, yes, it’s wrong). It’s about an assumption that “more intensive” treatment is the right answer for “more severe” behavior. And that “more intensive” treatment works better and quicker for all types of behavior than less intensive. It’s the assumption that the more effort put into therapy, the more positive results. It’s the assumption that behavior X and Y are maladjusted and need therapy. Sometimes they do, but sometimes that “behavior” is just odd but okay.

I’ve also seen the reverse – I’ve seen it assumed that an autistic who speaks on advocacy is anti-parent, angry, and even militant. I’ve had all these things used against me, and while I can’t speak for their accuracy in an unbiased way, I work very hard at channeling my anger appropriately and recognizing the importance of good parents. I certainly don’t see “parents” as the enemy, nor am I trying to wage a war. I’m trying to help people understand and trying to make sure my people can fully participate in and enjoy society – nothing more. So this isn’t exactly a one-way set of stereotypes.

So, when you hear something you disagree with today, I’ll give my thought on what your response should be: Consider whether there may be nuances you aren’t aware of. When someone says they want to get rid of food stamps, are they saying, “I want the poor to starve” or are they saying, “I think the poor know where this money should go better than I do?” When a parent says their 18 year old son wears a diaper, is it possible their 18 year old son has agreed to share that for a shared advocacy reason? Let’s not assume that’s not the case. No, I’m not saying to assume it is the case either. But we should listen and ask true questions, not just jump to accusations.

What’s Wrong with Advanced Directives

Do you want to cut health care costs in America?  It’s simple – you could save substantial money by doing one thing. You encourage people to create advance directives for what they would like to happen if they are unable to speak for themselves in the hospital.

For instance, someone might say they don’t want CPR, don’t want a ventilator, don’t want procedures that are painful and only prolong life by months, don’t want procedures that would save their life but leave them disabled.

In fact, they do. They say exactly these things when asked – at least a lot of people do. People want to “die with dignity.”

Here’s where I have the problem: If the decisions are made with informed consent and out of personal desire, I’m generally fine with this. But I don’t think most of these decisions are made with consent.

I was recently listening to a Planet Money podcast on this – listen to the actual story, as this isn’t in the article, if you want to hear what I’m concerned about.  Basically, this town has a remarkably high number of people who have completed advance directives, something I agree most people should do, but do carefully.

The problem comes with two things. First, as the show points out, this saves money, by not keeping people alive with expensive procedures who indicated they don’t want to stay alive in those situations. This can be ethically neutral, unless the person thinks, “I want to leave my life savings to my kids, so I don’t want the hospital using all of my money on me. In other words, I worry about people making a financial decision on whether they should live, and I have a huge objection to someone dying who might want to live on the basis of finances. Directives in favor of discontinuing care are scary when there is finances involved. This certainly could be solved through funding healthcare properly, so that it’s not a concern. In other words my heirs shouldn’t have less money because I told the doctors to do everything they can for me.

The second problem was when one man in the story was asked about situations and his choice – situations like whether he would want to have life saving surgery that would leave him blind or leave him unable to walk. In both cases, the man, likely sincerely, said, “No, I don’t want those surgeries.” Now, this is hypothetical and this probably wasn’t a real possibility for the man, but it is scary. What was he basing this decision on? I don’t know what he does and doesn’t know about disability, but if he’s like most people in the USA, disability is terrifying to him – there is probably few things worse than being “confined to a wheelchair” or being blind. To people with those disabilities, these disabilities need to keep anyone from leading a full and exciting life that they enjoy. But chances are he doesn’t know many people in a wheelchair or blind. Even more concerning was that the question wasn’t, “You’re going to die shortly and be blind if this surgery happens, and probably be in a lot of pain. Do you want to die painlessly in that situation?” That’s probably the question the guy thought he was answering (that said, I could be wrong, and hope I am).  He answered that he didn’t want those surgeries – even if he would live another 60 years without any other problem from the surgery) – because the question just asked if he wanted these types of procedures that could leave him with a disability for the sake of curing illness. In other words, this wasn’t exactly an end of life question, even though he probably thought it was.

And that’s where I have the problem. I don’t like people making decisions about their death on the basis of biases against disability. I hate it for a bunch of reasons. I hate it because I wonder whether or not this man would make this decision if his wife was disabled and he knew better what disability is like. Or if he was presented this information in another way. Equally, I’m scared about how disabled people are viewed by him, and if these prejudices are shared by other people – like people in hospitals. Do they see a disabled person and do a calculation, “This person is suffering more and would probably prefer death?” There’s evidence that this does happen. Routinely.

I do think people should fill out advance directives and let their families know what they want for medical treatment, if they are unable to speak. I believe very fully in this. But only with consent and without the financial motivation to choose death.
I have a good life. So do my blind friends, my wheelchair using friends, and, indeed, “even” my friends with chronic pain. Learn about us before you decide a life like ours isn’t worth living.

Mass Murderers Might be Autistic – and Why the term “High Functioning” is Discriminatory

As most people probably know, a few days ago a man murdered 6 people and injured several more.  The murderer may have been autistic.

Before I go any further, I want to note that I recognize the horror of what happened in California and am very sad for what happened to the victims and their families. I do believe the entire autism community is united in this aspect and feels the same way.

One of the first reactions of any community, including the autistic community, when something like this happens is to want to distance themselves from the evil person. Some of this is in the form of, “We are not like that!” That’s valid, and true. Autistic people are less likely than average to commit violent crime (and more likely to be the victims – so we’re not the ones that someone needs to be protected from, we’re the ones that need to be protected from someone else).

But, there’s also a darker response: “He’s not autistic.” I can’t accept this knee-jerk response, as much as I do wish that the murderer is not autistic. Sure, we don’t know for sure that he was autistic, and that’s fine to point out in some limited contexts (but not as a way of saying, “So autistic people are okay”). Whether or not this murderer was autistic, the violence he displayed was something that isn’t part of autism, nor is it part of any number of other things (such as being a man, being a college student, being a gun owner, being a white sort-of-well-off kid). But it certainly isn’t part of his autism. That doesn’t mean he isn’t autistic, though.

We have good and bad people in our community.  Just like there are good and bad men, good and bad college students, good and bad gun owners, good and bad sort-of-well-off people. And I do believe we can and should judge individuals as individuals. And, yes, I recognize that there is typically a power – privilege if you like – differential between men and women, whites and people of color, sort-of-well-off people and poor people. But there’s a huge difference between being a member of a group that has social privilege and being a bad person. I’m not saying that privilege doesn’t exist or people shouldn’t be aware of it, but I am saying that it’s not a moral failing to be a member of such a group!

But, back to the autism, we can (and, in fact, should expect we have) bad people in our community. There’s a lot of myths that autistic people have perpetuated about how we’re beyond deceiving people, honest, trustworthy, kind, and any number of other positive things. But we’re not. I’m not saying we’re dishonest, untrustworthy, unkind, liars, either. We’re neither of these things, neither angels nor devils. We’re like everyone else: we have good things in each of us and also some ugly things in each of us. We’re not beyond jealousy, greed, or malice. We have good people and bad people in our community, and we need to recognize that. It’s a mistake to think a group I am part of is better than another group. It’s a mistake that the murderer in California made, one that fed into his evil acts – he felt he was better than the men and women he murdered. Obviously the rest of us have a different opinion. Autistic (or Aspie) supremacist stuff is bullshit.

But, when the “angel theory of autism” isn’t being used to try to discount the murder’s potential autism, another ugly belief pops up: that the murderer was too functional to be autistic. The logic is, essentially, “He was too high functioning to be anything like most autistics. He could talk normally, he could go to college, he drove a car.” Whether or not this leads to someone saying he wasn’t autistic, the point is the same: if you drive, go to school, and talk, then you’re not like real (phrased as most) autistics.

Two things lead to this: first, people have limited experience with autistic people. They may only know one or two, often children. And the person they know probably doesn’t go to college, drive, and may have obvious communication differences. Of course the person they know might only be 6 (how many 6 year olds go to college or drive?), but none-the-less when someone thinks of autism, they think of what they know. If the person they know is an adult that cannot do these these things, too often it is assumed that others are like this.

The other problem is that people think the world works as follows:

Two arrows, one pointing left, one pointing right. The left arrow says "Low functioning" and has, under it, "More Autistic."  The right arrow says "High Functioning" and under it says "Normal"In other words, there’s a line on which we can place autistic people.  There are middle-functioning people in the middle, still clearly autistic, but in the middle of autistic. There’s a few geniuses like Temple Grandin off to the right, approaching “normal” and definitely “high functioning”, and there is a bunch of people on the left who are more affected and thus “low functioning.”

But that’s all bullshit.

You might be able to draw a line like the above for one very narrowly defined skill. But it has to be really narrow. For instance, we all know there are good and bad car drivers. Some people are just plain better at it than others. But is it even that simple? For instance, someone might be great at driving on-road, but horrible driving a jeep on an off-road trail. Are they a low functioning driver?  Probably not. Or they might be fine driving during the day, but not at night. Or they might be great in a city, but easily fall asleep on a rural highway. Or they might be fine driving a little compact car, but totally lost if they are asked to back up a truck with a 35 foot long camper attached. They might be better at driving fast, but is someone that frequently exceed the speed limit a high functioning or a low functioning driver? Where would you be on the line (assuming you drive)? It probably depends on the situation and environment – I suspect I’d be pretty far to the left, near low functioning, if you put me in the cab of a tractor trailer, since I probably wouldn’t even know how to release the parking brake. But maybe I’m pretty far to the right when it comes to backing up a trailer (I can usually get into a tight spot on the first attempt easily). I’m probably somewhere in the middle for most tasks. So, am I a mid-functioning driver? Would you say the same thing if I said I am a professional tractor-trailer driver who can’t release the brakes (but is, on average, mid-functioning considering other skills)? Probably not – context matters. We probably need several lines, for different skills, like “Winter Driving”, “Trailer Backing”, “Tractor-Trailer Brake Operation”, “Night Driving”, “Rural Awareness Maintenance”, and “Speed Limit Obedience.”

Life is a whole lot more complex than driving a car. If we can’t just give one score on a continuum to a driver, imagine how much more complex life as a whole is!

I’ll use myself as an example. I have no problem driving a car most of the time (I can’t say I’m perfect, but I’m not a “low functioning” driver either). I attended college, even obtaining a degree. And I do talk.

Of course what this misses is that of these things, the only one I’ve done without significant difficulty is driving. For whatever reason, I’m comfortable operating pretty much any vehicle I’ve had a chance to operate, from bicycles to aircraft. I’m not sure why, considering how uncoordinated I am with most other things, but I can manage motor vehicles just fine. But the other stuff is definitely difficult.

Sure, I attended college. And it only took about 16 years for me to get my degree. I received a 4.0 average my first year. My second year saw me on academic probation. What happened? It wasn’t the material – I could and did understand the material. Trying to keep everything together for over a year was too much for me, and I was loosing the ability to handle all the daily activities of life. Sure, I could force myself through it – and did – for a while. But eventually that catches up. I don’t know many non-autistic college students that had grades decline as steeply (I do know several autistic students that have). I ended up dropping out, only returning a decade later when somehow I was willing to try to force myself through the process again. This is hardly “high functioning.”

I could talk about speech, but I won’t now, other than to say I had similar difficulties and still do – it’s why I still own and occasionally use speech generating devices.

But there were the other areas of my life too. I didn’t eat for a week when I started school, because I didn’t know where the cafeteria was. I was getting a 4.0 GPA at the time, but couldn’t find where the food was kept.  After a week, I was barely functional from hunger. Yet I couldn’t do the obvious thing: ask someone. Eventually, I ended up stalking another freshman for a few hours, figuring he’d eventually eat (fortunately, he did eat in the cafeteria). Food was a problem throughout my adult life, until I got married (my wonderful wife cooks for me – something that is a tremendous blessing after you’ve lived years of your life dangerously underweight because you lack the ability to manage this task yourself).

But I was high functioning. I went to college. I drove a car.

That’s the thing with autism (and, in fact, humanity). Having skill in area X doesn’t mean I have skill in area Y, even when it looks like X and Y should be reasonably related.

Sure, we like to be able to categorize people. We think there must be some difference between that kid we say is low functioning and the high-functioning examples of people like Temple Grandin. And certainly there is a difference – the obvious one is 50 years of age. But, beyond that, autism isn’t about being good or bad at any one thing. It’s about having a set of abilities that doesn’t follow the normal neurotypical model, and this goes both ways. I don’t have the research handy, but I know some researchers have found that autistics with low measured IQs, typically part of the group that is considered low functioning, share, with their higher measured IQ autistic peers, an ability to do certain types of intellectual processing that far surpasses that of neurotypicals. Of course neurotypicals far surpass both groups – the “high” and “low” functioning groups on other tasks. It’s not about better or worse, higher or lower, but rather different.

When people think of the California murderer, and think, “But he’s too high functioning to be autistic,” they are closing the doors to life-saving daily living services that some people need. They are deciding that autistic people can’t learn skills A, B, or C. They are ignoring decades of research. They’re also ignoring the tremendous variance between individuals, even when those individuals are all called autistic. We’re different, with vastly different skills. One autistic person might not just be able to drive a car, but could be a successful race car driver, while another would be a tremendous risk to traffic if they got behind the wheel. That doesn’t mean one is more autistic than the other. It means that one is a shit driver, while the other may be great. But still autistic. Yet others may have tremendous talents, but because they can’t do some random unrelated task, it’s assumed they wouldn’t be able to do whatever they are talented at doing. They’re “low functioning” after all. Well, that’s bullshit. Don’t dismiss us as non-autistic because we can do something, don’t assume we have other skills because we can do X, and don’t assume that we can’t do something because we can’t do X.

If you think you can put autistic people on a functioning line, from high to low functioning, you just don’t know autism.

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!