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.

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.

 

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.

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.

What is the Problem with the Autism Speaks Summit – A Parent’s Words

Sometimes we autistic people get a lot of criticism when we comment about Autism Speaks. We’re told, “But you’re not a parent, you don’t understand.” And sometimes that criticism is valid – although not nearly as often as the criticism is made (for one, it ignores the people who are both autistic and parents of an autistic). But regardless, most of us do value parent allies who advocate for their children strongly while listening to our point of view.

So, it’s always refreshing when someone speaks clearly from the parent perspective about what is wrong with Autism Speaks’ summit – this time, criticizing the press release and rhetoric (not the only problem with the organization or event by any means, but a very valid criticism).

At “A Diary of a Mom,” the writer writes:

Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?

Powerful. It’s even more powerful coming from someone who was part of Autism Speaks.

So go read it yourself.