Friday, September 30, 2011

Thought I'd Visit...Don't Get Around Much Anymore

It's been two weeks of dialogues at TPGA. As we each work to figure out what it means to be a part of this community and where the boundaries are, I thought I'd share my latest from Countering. --KWombles

Thought I'd Visit...Don't Get Around Much Anymore

"My mind's more at ease, but nevertheless, why stir up memories?"

And ain't that the truth?

I don't get around to many blogs anymore, too many papers to grade, and an ever earlier and earlier bedtime as I find myself worn out. Some nights I beat the girls to bed, and am grateful that Rick shoulders the bedtime duty. I miss some of my blogging buddies, those women and men whose lives I got to share in, but I don't miss the drama of visiting places that are angry, hostile places.

What I have read, though, are the dialogues at TPGA, some of the comments, and many of the posts written by other bloggers in response to those posts and comments. We've been putting those blog posts over at the directory as I'm able to find time to contact the blog writers and get their permission. If I haven't gotten around to you and you've written one, email me and I'll get it up.

When I started blogging in 2009, the autism community seemed to be clearly divided into two vocal camps: neurodiversity followers versus those who believed autism was caused by vaccines. The neurodiversity camp also lined up in opposition to autistic adults who very much want a cure for their autism. Of course, that's an oversimplification, but those were the factions I was initially exposed to. It was easier to find a place, in some ways, because you were immediately routed to one camp or the other based on what you thought about vaccines.

I made several close friends in the midst of blogging, advocating, and trying to make a difference. I made some enemies, too. I acted intemperately at times. I stumbled, occasionally, and I learned a lot. I lost some friends, too, people who quit blogging, or who retreated when something besides vaccines popped up and revealed that there was another line that could create a divide.

The directory that Kathleen and I run, the bloggers we've met through that, has changed my views, tempered my opinions, and led me to react differently than I did back in the summer of 2009. You can't practice inclusion, read hundreds of people with a variety of beliefs and experiences and not come away changed.

What I learned from reading parents who believe a multitude of things that differ from my own beliefs is that they write to reach out, to get comfort, to know they are not alone. Adults on the spectrum write for the same reasons. We all want the same basic things: acceptance, appreciation, accommodation, and to know that when needed, people will act on our behalf for our benefit.

Far too often, they don't find this, even in a community where we should have an abundance of experiences that should lock us together in solidarity. And yet, it often doesn't. Far too often there is rancor and strife and instead of making people's lives easier, we make them harder. Instead of finding comfort, we find drama.

Perhaps we could all spend a little more time asking what we bring to the equation: comfort or drama. And if I've brought you drama in the past, I'm sorry.

Thursday, September 29, 2011

Showcase: Jessica of ASLAspergirl


Social Thinking

During the summer I came across "Social Thinking", which was coined by Michelle Garcia Winner. Basically, social thinking is the ability to think oneself from a social perspective. In order to develop social skills, one must have evolved social thinking process. As an Aspergian, I constantly have to use my intellect to ensure that I practice appropriate social skills, which does not come naturally to me. Having sufficient appropriate social skills took me years to master and through trial-and-error. I was not diagnosed with Asperger's Syndrome until age 30, so a lot of my social skills blunders were painful and frustrating. There did not seem to be a "manual" on how to navigate oneself in the social world.

Now, I am 31 years old and have looked back in my life. It really amazes me that I have had expended so much mental energy in figuring out the social world without any form of guidance. Hopefully that the current generation will benefit from a wide-range of resources related to social thinking. There are an abundance of books that would assist a socially-challenged individual with their navigation. However, one must remember that the social world is everchanging and evolving. What may have worked at one time may not be appropriate for a "similar", but different time.

The most painful lesson that I had to learn was to accept that people's behaviour are "illogical". No matter what people said or have done, NEVER criticize them. They will take offense by it despite your good intentions. I've faced so many angry and frustrated people were deeply hurt by my "critical" comments. My intention was to "point out" why they were in their current situation. I wasn't trying to cause harm to them, but unfortunately my blunt approach wasn't taken graciously. I have a cause-and-effect type of thinking, which makes it difficult for me to stop myself from thinking of causes for current scenarios.

Social thinking is an important skill to develop in order to survive in the neurotypical world. No matter how much you want to avoid or disregard the importance of social skills, you will not be taken seriously if you do not attempt to develop it. You must consider it as equal to your special interests. Consider learning about social thinking as a process to improve yourself as an individual. The more you learn about social thinking, the more you can find appropriate resources to assist you in becoming more socially competent.

Showcase: Laura of Life in the House that Asperger Built

“Seek first to understand…”

Eight days.
“The Dialogues” over at TPGA have been going on now for eight days, and there’s more to come.  To date I’ve felt the posters have been respectful, well-reasoned (for the most part), and there has been a give and take happening.  The internet being what it is, I’ve stayed away from the comments.  I had a feeling it would be there that things would fall apart;  where there would be name calling, and finger-pointing.  Then, in the comments of another blog I read where things had calmed down today.  So I went and had a look.
If I understand correctly, the purpose of this dialogue is to try to find common ground between Self Advocates and Parent Advocates.  I think they’re trying to get to a place where everyone can stand shoulder to shoulder with a common purpose and everyone’s point of view is respected, whether it’s agreed upon or not.  From what I saw in the comments today, that appears to be a nearly unattainable goal.
There’s no way to get there.  One person expresses how they feel, someone offers a different perspective on it, and BAM! It’s on.  Suddenly offering an alternative viewpoint is seen as completely invalidating how the first person feels.  Further, by pointing that out to the second person, their feelings are completely invalidated too.  Self advocates are shouted down for being too capable and not understanding what it is to parent a child with a disability.  Parent advocates are shouted down for being too capable not understanding what it is to be a person with a disability.
What about disabled parents of disabled children?  Well, if they’re like me, they’re often caught in the middle.  To many in both groups, I’m not disabled enough to warrant listening to, and neither are my children.  We become invisible.  For those disabled parents of disabled children who are not like me, I’m not sure where they fall.   I suspect that many have refrained from commenting, just as I have.  And that’s too bad if you think about it.  They are the only people in the unique position of knowing exactly what it is to be disabledand what it is to parent a child with a disability.  They should be the E.F. Huttons in the conversation.  That’s not to say that we shouldn’t be listening to everybody, but that’s just it.  We’re not listening to everybody.   In fact, sometimes it appears that no one is listening to anyone.
I used to think if everyone could just calm down, and enter the conversation seeking first to understand rather than to be understood, we would be able to come together for our common purpose.  I no longer believe that.  People seem either unwilling or unable these days to really listen.  Everyone is just quietly waiting to talk.

“So when you are listening to somebody, completely, attentively, then you are listening not only to the words, but also to the feeling of what is being conveyed, to the whole of it, not part of it.”
Jiddu Krishnamurti

Wednesday, September 28, 2011

Showcase: Rachel's A Protest March is Not Dialogue

Continuing our posting of bloggers' thoughts on the dialogue between advocates and parents, here is Rachel's post from today.

A Protest March is Not Dialogue

by Rachel Cohen-Rottenberg

I’ve been doing some more thinking about the Self-Advocate/Parent Dialogues on The Thinking Person’s Guide to Autism.

Like many people, I’ve felt frustrated, angry, and saddened by what I’ve watched go on there. And I’m realizing that it’s because, each day, I show up wanting peaceful dialogue, and each day, I find myself in the middle of a protest march that keeps turning into a brawl. It feels exactly like wandering into a demonstration and counter-demonstration in which the police barricades, put in place to keep people from tearing one another apart, keep getting overrun.
Maybe it’s just me (and judging from the events of the past week, I’m beginning to think that it may very well be just me), but there are things that I’ve always expected from a dialogue, and that I’ve always assumed were both necessary and reasonable:
  • Expressions of respect for the other party
  • Listening and responding rather than reacting
  • Speaking with civility, even in the midst of great anger
  • Asking questions that go to the heart of intent
  • Equal time and representation for both sides to express their perspectives
  • Care and concern for individuals across division
  • An ability to acknowledge errors on both sides
But here are the things that I’m seeing in the The Dialogues:
  • Yelling. And I mean yelling that happens IN ALL CAPS because otherwise, MAYBE other people won’t KNOW how WRONG they OBVIOUSLY ARE.
  • People taking their pain out on one another. I see parents doing it because they feel stressed and abandoned and get to do it everywhere else in the autism world, and I see autistics doing it because they feel stressed and abandoned and never get to do it anywhere else in the autism world. On behalf of both parties, it hurts me to watch.
  • Accusations of ill-intent along the lines of “You’re just trying to derail the conversation,” as though accusing someone of derailing the conversation — rather than bringing the conversation back on point — isn’t derailing the conversation.
  • Lots and lots of sentences beginning with “You,” such as “You just refuse to understand” and “You need to park your privilege at the door” and “You have no right to be upset about whatever it is you’re upset about, because it’s irrelevant.”
Anyone here ever try to carry on a relationship in which both parties start every sentence with “you” rather than with “I”? It doesn’t go well. Telling the other person everything he or she has done wrong, over and over, instead of talking about its impact on you and what you want to see change, usually doesn’t get you very far. It’s quite cathartic, but in the end, it damages the relationship, and then there is repair work to do on top of the problems that were there in the first place.
  • People laughing derisively at each other, judging each other, attacking each other, and accusing each other of saying things they never said and meaning things they never meant.
  • People treating one another as walking incarnations of all of life’s injustices, rather than as actual people with feelings and thoughts and tears. It’s easy to take a swipe at an incarnation of life’s injustices. It’s quite a bit more difficult to do it when you realize that a person is standing in front of you.
  • People getting their feelings trampled underfoot on the road to — what? Making life better for all of us? Excellent. But there’s one little problem: I’m not all that interested in creating change with people who think that’s the way to go about it — for the simple reason that I fear for what the world will look like when we get there.
  • People being unable to acknowledge any wrongdoing, either because they’re oppressed and the wrongs done them are so much worse than what they’ve done to others, or because as long as the cause is right, who cares? So, unlike most people who seem to have moved on as though nothing happened, I’m still pissed as hell at what happened to Emily, and I’m still waiting for someone else to sober up and say, “My God, we’re so sorry. You didn’t deserve that.” And I can feel, in my bones, just how irrelevant people seem to think that is. Who cares about Emily when we’re talking about oppression?
I do. It’s not that I think that Emily is still hurting. It’s the failure to take responsibility that concerns me so much. If we can’t engage in self-reflection and mend things that are broken in our community, how can we have a prayer of mending a broken world?
I’m having memories of my days in Berkeley, when I’d go to gatherings about social justice issues, hoping to listen to a few speakers and have a reasoned discussion, only to watch people yell and punch holes in walls and talk about how it wasn’t such a big deal because people were suffering in the world. Yeah, the wall doesn’t suffer, but the people in the room who watch it happen do. It’s scary, it’s intimidating, and it’s not conducive to dialogue.
Now, I can hear the objections to everything I’m saying here: “Well, we’re oppressed. You can’t expect us to be civil and well-spoken about it. There is too much at stake. And besides, we’re angry. And besides, why don’t you talk about what we’re saying rather than about how we’re saying it?”
All I can say is that, in a protest march, or in a diatribe, you have to yell and say what you have to say, however you want to say it. And I share your suffering, and I share your desire to be loud about it, and I want change to happen right now, just as you do. I’m a member of two minority groups that have suffered bitterly for generations upon generations, so I can hardly be accused of not getting it.
But a dialogue involves something very different. A dialogue involves saying things in a way that other people can hear them. This is not an argument from tone. This is a realistic appraisal of how to work around people’s defenses and get them to hear us so that we can make change. We can’t get people to listen to us by telling them that we’re right and they’re wrong, over and over. They’ll either put up their defenses and start beating up on us in the same way, or they’ll go away altogether. Either way, we’ve lost much-needed allies.
When I look at history, I see oppressed people creating change by forming alliances with the majority, and by doing it in a way that takes the moral high ground. The civil rights movement finally had its day because Martin Luther King, Jr. invited white folk to join him in taking that moral high ground. You had people who had watched their loved ones lynched and raped, but they came together, in the spirit of peaceful dialogue and a yearning for justice, with representatives of the privileged class whose members had done the lynching and raping.
That’s what I keep hoping for: that we carry this forward with some discipline, some respect for the perspective of the other, and some trust that we can make change by being the change we want to see. But after the events of the past week, my sense is that we’re a long, long way from there.
© 2011 by Rachel Cohen-Rottenberg

Showcase: Rachel's Impact, Intent, and Dialogue in the Autism Community

We're continuing to run posts by bloggers on advocacy and dialogues. This time, it's Rachel's eloquent piece. Please remember, we welcome your pieces here, so if you'd like to be showcased, please email me your piece or a link to it to

Impact, Intent, and Dialogue in the Autism Community
Rachel Cohen-Rottenberg

This post discusses an issue arising from the Parent/Self-Advocate Dialogues that began last week on The Thinking Person’s Guide to Autism.

For those who haven’t been following the Dialogues, a rather contentious argument arose about a Twitter exchange between Rob, one of the participants, and Emily, one of the editors, in which it appeared to many people that Emily had ill intent. As it turned out, she did not – quite the contrary – and the ensuing conflict was based on a misintepretation. Given that Twitter does not allow for much in the way of nuance or explanation, a misinterpretation wasn’t all that surprising. Twitter probably wasn’t the best medium in which to attempt a conversation about a serious issue in the first place.

K over at Radical Neurodivergence Speaking has a great post up about the whole incident, with a very good discussion of why the larger social/emotional/historical context in which it happened made misinterpretation almost inevitable. If you aren’t familiar with the situation and want to have some idea of what the rest of this post is about, take a look at K’s piece.

I originally began my post as a comment on what K had written. But as I wrestled with my feelings about the situation, I began to see larger issues that I want to explore here.

In the context of a world in which autistic people are so often rendered invisible, I understand why people interpreted Emily’s words as they did. We’re used to people not listening to us, and when it appeared to be happening again, people drew conclusions based on life experience. I completely understand it, and for anyone who doesn’t, I hope that K’s post makes the reasons clear. From the outset, I did not interpret Emily’s words the way that others did, but I understand why other people arrived at a different conclusion.

That’s not what troubles me.

What troubles me is that, despite Emily being a respected member of the community with an impressive track record on advocacy issues, the rush to judgment about her intentions was so swift. I watched it happen in the comments section to the Dialogues, and I kept wondering when someone was going to say, “You know, given that it’s Emily we’re talking about, we must be missing something. Perhaps we should ask for clarification.” Instead, I saw commenters looking at the Twitter exchange and then drawing very pejorative conclusions about Emily’s intent – that she was attempting to derail dialogue, to silence autistics, to encourage dismissal, and so on – without asking what her intent actually was, and without considering the fact that the conclusions being drawn and her track record were so much at odds.

In the context of dialogue, the failure to ask about intent worries me, because dialogue involves a willingness to ask questions in order to discern intent. Without that, a crucial part of the picture is missing, and dialogue becomes unproductive.

In fact, a failure to ask about intent ultimately discourages dialogue. Because of the pejorative things said about Emily’s intentions, it’s taken me days to post my feelings about the situation. For the first time since I’ve started blogging, I’ve felt inclined to stay silent about my feelings regarding an issue I care about. And if someone like me could feel that way, I can only imagine what people new to the community must have felt while they were watching the whole situation unfold.

As I’ve struggled with speaking to the issue, I’ve been asking myself questions along these somewhat worrisome lines: What will happen if people misread my words as an attack? What will happen if they think I’m dismissing the pain involved for everyone? What if they think I am assigning ill intent to them?

Will they ask me to clarify my intent? Will they try to understand where I’m coming from? Or will they assume ill intent where none exists?

It’s taken me four days to say: I hope they’ll read carefully. I hope they’ll consider who they know me to be. I hope they’ll ask if something is unclear. But I really can’t worry about that.

I know that this whole debacle came out of the pain that so many of us carry, and out of the injustices we’ve suffered. I do. When people read words that appear to be dismissive – even if they are in no way intended to be dismissive – the impact is going to be profound. That reality has to be part of these conversations. And what also needs to be part of these conversations is an understanding that it’s often very ill-advised to draw a conclusion about intent based on impact, especially in a dialogue. When that conclusion is wrong, it can cause a lot of hurt. As a community, we have a responsibility not just to explain why these misinterpretations happen, but also to acknowledge the impact on the person who was misinterpreted.

Emily had people saying some pretty awful things about her thoughts and intentions last week. She’d have to be made of teflon not to feel hurt while it was happening. So while it’s crucial that we talk about the impact of power and privilege and context and silencing and dismissal on us, it’s also crucial that we acknowledge what happens to individuals at the epicenter of these blow-ups, and about the ways in which these kinds of things can fracture a community and discourage dialogue.

So I’m doing now what I should have done in the Dialogues thread last week: I’m speaking up. I hope that people will understand that I’m doing so because I care about the future of dialogue in our community, and because I care about our community being a safe space. If this sort of thing can happen to Emily, it can happen to any one of us.
© 2011 by Rachel Cohen-Rottenberg

Tuesday, September 27, 2011

Spectrummy Mummy: A is for Advocacy

Spectrummy Mummy

A is for Advocacy

I have decided to begin an A to Z series of postings. Because I’m the kind of person who just has to start at the beginning, here I am at the letter A. A is for many things. A is for Autism and Asperger’s, of course. A is also for ADHD, another diagnosis for Pudding. A is for anxiety, goodness knows I’ve written about that, and hardly covered how it impacts our life. A is for auditory processing dysfunction. I could keep going, but today I’m starting with advocacy.

Whenever power cuts and my lousy internet connection have permitted, I’ve been following the dialogue series between parent-advocates and self-advocates. I’m glad I have, it has been illuminating, and I’m very gladTGPA provided this forum to air this most necessary discussion. Are we as parent-advocates listening enough to what self-advocates are saying? Can we really be doing so when organizations involving autism research and support don’t consult with adults with autism, effectively barring them from the conversation about them. Who knows autism better? Someone who lives with it, or someone who parents a child with the diagnosis? Both the (ongoing) series of posts, and the many comments have left me with much food for thought.

We have to start listening to what adults on the spectrum are saying, and supporting them in their advocacy efforts, particularly when, especially when we as parents don’t like hearing what they have to say. As was mentioned in the posts and comments, there is a difference between parental advocacy and public advocacy, and it is clear that adults on the spectrum will do a much better role at the centre of the latter. I plan to embrace my role as supporter and ally, learning when to speak out for my child, and when to listen.

I can’t help but think of Pudding, and how she might feel as an adult if her opinions and advocacy efforts were dismissed in favour of mine. It would be absurd, it would be wrong. Yet this is the experience of many adults brave enough to advocate in a world that doesn’t welcome them or their opinions. It is hard, for us as parents who have nurtured and protected our dependent children to relinquish that role as our children age. I saw it in several families when I worked as a carer. I’m certain that I’ll struggle with it too, as most parents do. My job is to help Pudding become as independent as possible, even independent of me.

Pudding herself as an independent streak running through her. If she is able to do something herself, she will do it, and refuse any assistance. Our efforts as parents lie in encouraging and motivating her to do those things that she struggles with, many of which will be necessary for independent living. Her current educational/therapeutic program features some intensive occupational therapy. She makes a game effort, but sometimes the tasks are just too much for her.

One day last week I collected her from school, and her teacher informed me with a smile that Pudding had been “non-compliant” during a challenging activity. Struggling to find the right words to tell her she needed a break, she told the teacher that she (Pudding) was naughty and needed a time out. Her school has a calm room with a ball pit and swings, and her teacher directed her there for as long as she needed. We’ve established goals for speech therapy to learn the phrases to say when she has had enough, and we continue in occupational therapy to find ways to help Pudding learn what helps her to regulate when her senses are overloaded.

My girl is fortunate enough to be in a place where she can assert herself, and she will be listened to and respected for it. I only hope that I can say the same thing when she gets older. As parents, we don’t have to wait to start listening, not when there are adults struggling to be heard right now. It might be the greatest act of advocacy we can perform.

Autism & Oughtisms: What are you talking about? Of Whales, Ripples, and Advocacy

This morning, we're featuring Autism & Oughtisms' post. If you have a post you'd like to offer for the directory concerning your thoughts about advocacy and dialogues between the different segments of the autism community, please send it to and I'll get it up. Thank you--KWombles

What are you talking about? Of Whales, Ripples, and Advocacy.

Like many others, I have been marvelling at the unproductiveness of the Self-Advocate/Parent Dialogues over at TPGTA. But I don’t think it’s a simple failure of compassion of either side (though there’s definitely some of that going on). Rather, I see a conversation that doesn’t know what it’s even talking about.

On the surface it is a meta-discussion, pleading for parents of autistic children, and adults on the spectrum, to listen to each other. But the validity of the complaint – that one side isn’t listening to the other – is undercut by a lack of concrete examples to ground the discussion. This is incredibly important, because in some areas the experiences and insights of people with autism are highly relevant and a unique and much-needed resource. In other areas, the fact that they have autism is an interesting piece of information but does not give their opinions or experiences more weight.
If the topic under discussion is “bringing up a child who has autism”, then parenting experience is relevant, but again is not the be-all-end-all. It’s important to consider the experience and training of the person we are listening to, but someone can also talk perfect sense and have eye-opening insights despite a lack of training or experience (though this will be rare with something so life-changing and important as parenting). If we want a completely informed opinion we might seek out someone who is autistic themselves, raising an autistic child, and has training relevant to both parenting and autism. But that’s a rarity. And even if you found such an icon, their religious, political or other beliefs might so strongly impact on their advice that it would have always run counter to how you would have raised your own child.

So though we’d like to always hear from those who tick all the right boxes, we must always at the end pay attention to the strength of their arguments: The accuracy of their premises, the validity of their logic, the soundness of the conclusion they draw. If their premises include – for example –  the experience of someone living with very mild autism, and the conclusions we are specifically seeking are ones about the best lives for severely autistic children, then that particular premise might seem absolutely key  in the scheme of things. If the conclusion we’re looking for though is one about the way the autistic mind generally comprehends and interacts with the world, then the severity of autism might not be nearly as important, and the mere experience of living as an autistic person would be highly relevant and carry that much more weight.

There are both autistic people, and those without autism, who (as an example of a divisive issue) want a cure and wish autism didn’t exist. There are also those with and without autism who see autism as a gift and an inherently beautiful aspect of an individual (that needs nurturing and support, rather than denial and destruction). There is nothing inherent in the “having of autism” that means you will feel one way or the other on an issue like this. There may be majorities involved (for example, a majority of autistic people might embrace and cherish their autism), but all that tells you is “we have a majority here.” That matters in democracies, sure, but never to the extent that we don’t care about or don’t want to hear other opinions. Majorities are also irrelevant to certain issues and questions, for example, a majority of the population may say autistic people completely lack empathy if they were asked such a thing, but that doesn’t make it true.

Again, you see that if we don’t know exactly what we’re talking about – attitudes, opinions, or facts – then it is almost impossible to expect agreement at a meta-level about “listening to each other.” Since those engaged with that meta-debate might all agree that listening is great, but still get nowhere because the examples and consequences they have in mind as they converse, colour and motivate responses that otherwise appear un-necessarily aggressive. It’s like an unseen whale moving under the ocean surface. You can see the ocean is unsettled, and talk about how bad that looks when you were expecting and hoping for calm waters, but unless you look under the ocean surface to study and understand the cause, you won’t make any progress.

Even if we take one of the clearer instances of what someone is addressing in such “self-advocate / parenting” dialogues – perhaps they’re focused on attitudes around the advocacy for disability rights – relevant information is glossed over. Are we talking about advocacy for what supports and services parents of disabled children receive; what their children receive directly; or what adult autistics receive? In one of those cases the parents need to be heard the loudest, and in another it’s the autistic adults themselves.

Furthermore, the agenda (for example, focusing on parents or autistic adults) may be completely outside of the control of the warring parties. Sometimes the agenda reflects a particular concern at that point in time; maybe children are being focused on because it’s “International Day of the Child” or “Mother’s Day.” Getting angry at others for utilising a platform they didn’t even create, seems misguided. As do attacks along the lines of “you’ve (as a group) had your say, you’ve been heard, now it’s our turn.” The voices of people affected by autism, are not mutually exclusive. One is the voice of a parent raising an autistic child (whether that parent is NT or ASD, or somewhere in between). Another is a voice of an autistic adult. Either trying to say the other voice is less important or less relevant – at least, without a very clear context to establish the relevance and importance – is confused and unhelpful to say the least.

I’m not saying we can’t have such meta-debates, where we talk about advocacy and relationships between those affected by autism; not at all. What I am saying is that where we see high emotion and lack of progress, it makes sense to try to introduce as clearly as possible what people are actually talking about; what examples and issues they have in mind. What I see is rational dedicated adults passionately agreeing on the importance of listening, while arguing on the largely unspoken subtext (the details and precise issues), in ways that bleed into the “listening” issue; making the disagreement a difficult beast to understand or pin-down, and making it last longer and stronger than it has to.
It’s hard to have meaningful dialogue about the ripples across the ocean, if you don’t talk about the wind, the currents and the whales that make those ripples. Only once we tease apart what we’re precisely talking about, can we figure out where the disagreements lie and why. And since I simply don’t see that occurring over at the Dialogues (yet), I am personally weary about getting involved on that platform. I’d be just another under-explained ripple, trying to change the course of the ocean around me.

Autism & Oughtisms ( )

Monday, September 26, 2011

Exchanges, Ideas, and the Chance to Not Talk Past One Another

At this point, most regular autism blog readers are probably aware of the exchanges going on at The Thinking Person's Guide to Autism, as well as the various responses by other bloggers. If you would like the directory to showcase your thoughts on this matter, please email me at and I'll get it up on the directory for you.

Here's my response:

What We Fight For

Have I said I've been in the trenches now for two decades, fighting to get what my children need? I get tired of the fight, tired of the battle with the outer world to get the resources needed, and so, when Bobby was nine, after he'd had a stroke, I realized I couldn't battle it all. I was worn out. I was tired of fighting for an appropriate education all while fighting the medical system to get him help, and honestly, all while fighting with him to give him the basic self-help skills that would let him be potty trained, be able to dress himself, bathe, brush his teeth, comb his hair, and eat meals without disasters. I was tired of being up for 36 hour stretches since he wouldn't sleep and was destructo-kid and couldn't be left unattended.

Tired, worn, and grieving were the first ten years of my son's life. You know what else they were? Enchanted with his beauty, in love with his smile, delighted when he hugged or cuddled or vocalized anything. As tired as I was, I was completely head over heels for my sweet boy. I made the most of every moment with him, spending long afternoons lying in bed with him, surrounded by his favorite books that we would read over and over, day after day.

By the time the girls came along, I'd had a couple years to process his stroke, the real risks of him having another one, and the break from fighting the school system. After his stroke, we brought him home. No more fighting that, no more. It became about teaching him in a safe friendly environment where his psyche was safe, and we resumed those wonderful afternoons surrounded by piles of books.

Eventually, after we moved here, next door to my parents, we worked at getting him into the day center where he would have the chance to work on socialization skills with others like him, where he would be safe, accepted, and loved. And if you've read this blog at all, you know what a shining, bright young man he is and how far he's come. He is sweet, opinionated, giving, loving, and he makes a difference daily. He is happy, he is loved, and he contributes. He is my light.

after helping me move into my office last month

His sisters shine, as he does. They are my garden girlies, and they never cease to delight and amaze. All three of them adore the others, sit on the couch for our evening sci-fi marathons entwined in each other, the three of them: a grown man who loves to play pokemon and yu-gi-oh with them and who loves them so much that all he can talk about is getting them this $50 video game that he knows they'll love for their birthdays, and these two long-limbed girls: they wrap themselves around each other in complicated pretzels and hug and squeeze and loll on each other in a way my brothers and I would never have done.

I fight for them. I don't speak for them. I don't speak for anyone but me. I teach them that their voices matter, that who they are is wonderful, perfect, and lovely and that they can be what they want to be if they are willing to work for it.

There is a difference between fighting for one's children and speaking for them. There is a difference between advocating for equal rights, equal access, and appropriate accommodations and speaking for others. They have nothing to do with each other. Perhaps people have forgotten that.

I do not speak for autistic people. I would not even were I an autistic individual.

I do not speak for parents of children with neurological differences. It is not my place.

I do not speak for anyone, to replace their voices with my own.

I speak for me and my experiences as a mother with her own issues and invisible disabilities who safeguards her children and fights for what they need, while working with them to teach them to fight for themselves for what they need. 

My experiences and my words in no way negate another person's story or perspective nor does it ride roughshod over their own experiences and words.

Maybe if people quit worrying about who's speaking for them and spoke for themselves and let others speak for themselves, there'd be less acrimony and accusations.

Showcase: Drawing Roads: A parents blog about navigating autism

Curtis's "BFF" from Kindergarten to Second grade has transferred to a new school down the road. I have written about their relationship in past posts but to refresh a bit - Curtis and "Jenny" have a unique and devoted love to one another that I have never seen between two kids, ever. Jenny is a beautiful blond who is smitten over Curtis's brains, style and personality. Curtis is an adorable young man who is smitten over her brains, style and personality as well. Curtis use to carry her lunch box for her, draw her maps to his house, walk hand in hand with her down the halls and pull out her chair in the classroom when she was approaching. He got so upset one day when his teacher re-arranged the desks in the classroom and placed her desk across the room from his that he insisted on moving them all back so he could sit next to his BFF forever and always. I will never forget watching him take matters into his own hands rearranging the desks back to the places that they "should be" - I sat back and let him do it with such a smile on my face. He is so devoted to Jenny that this year, as he is forming friendships with some new kids, he is making it loud and clear to them that there is only room for one "BFF" in his life -  Jenny. He has voiced that one day he would like to take his BFF and marry her - he has big (but I am assuming quite predictable and simple) plans for this relationship. He has even gone as far as to mention that after they marry and become husband and wife the BFF title will be dropped and no one else will EVER be able to take that place.

Between now and marriage Curtis and myself will be making monthly field trips to her new school to have lunch dates with her, visit her new classroom and play tag at recess. He also has insisted that we stop by a local cupcake shop to get her a cupcake, vanilla of course as she hates chocolate. We have planed to do this "social field trip" the first Monday of every month. In between these field trips, Curtis is writing her letters the old fashion way and drawing beautiful pictures of her (seen in photo). On a personal level I miss "Jenny" a great deal as well - she was always by my side complimenting me on my "style" or scratching Curtis' back if I was too far away. She would always step up and offer comfort to Curtis when I was out sick and make sure he had his water bottle, clip board and red crayon in hand.  All of this was not done out of pity, I can assure you that. I have a good sense in reading people and Jenny truly felt connected to Curtis. I will foster this relationship as much as I can while working with Curtis - in a world where social devotion is limited, this is worth savoring.

Caron, 1:1 School Support

Sunday, September 25, 2011

Showcase: Sides by Pia from The Crack and the Light

From KWombles: Most of us are probably aware of the TPGA dialolgues of this past week and the controversies that have come from the exchanges, as well as some of the side posts written on blogs you can find here on the directory. 

Pia has written an eloquent and important piece on the inportance of listening.

by Pia

There is a saying: All politics are personal and local.
We focus on the world, on issues, and on others, based on our own concerns and experiences. We frame the opinions of others based on our own ideas and thoughts. Our perception of the world is the only as valid as our own experience.
I know what I perceive as the color “red”. You know what you perceive as the color “red”. We might both refer to the same thing as “red”, but in reality I have no idea if you experience ”red” the same way I do. That is just the truth of the human experience. We are, for better or worse, trapped in our own heads.
There has been an on-going ‘dialogue’ the last several weeks regarding the nature of advocacy and the disability community.
di·a·logue: a conversation between two or more persons; an exchange of ideas or opinions on a particular issue…. with a view to reaching an amicable agreement or settlement.
I have found this conversation exceedingly frustrating, as I know many have. Both sides (the original posters and subsequent commenters) have tried to communicate. There has been a problem, however, and I think I have figured it out.
It is The Big But.
It goes something like this:
I hear you saying X, Y, and Z….. BUT you don’t understand A,B,C and you should think A,B,C before X, Y,Z.
Oh, yes, I hear what you are saying about A,B,C, ….. BUT I am concerned about X,Y,Z….
A dialogue requires an exchange of ideas with a goal of understanding the other side of the issue and coming to an agreement of some sort. To do this, we have to start by listening.
lis·ten : to give attention; attend closely for the purpose of hearing; give ear, to pay attention; heed.
You will note that this definition has nothing in it that denotes you speaking or expressing an opinion. It is merely taking in information. From listening, you are working toward understanding.
un·der·stand : to perceive the meaning of; grasp the idea of; comprehend; to grasp the significance, implications, or importance of.

Note that listening and understanding do not necessarily mean agreement. In fact, listening and understanding have nothing to do with your opinion whatsoever. Listening and understanding are about the perception of others, which is terribly difficult for us humans (for reasons stated before). But dialogue will never be successful without close and feverish work toward these two goals.
How do we move toward listening and understanding effectively?
Stop speaking. Yes, you.
Ask questions without your opinion interjected. Seek knowledge.
When you receive an answer, listen. The moment your brain goes “But I think…”, stop. Ask again. Listen again. When your brain goes “But what about…” STOP. Remember that listening and understanding are not about you. Understand their position. It is real and valid. You don’t have to agree, but that doesn’t mean you can’t understand. And once you truly understand, you can accept. And you may find common ground.
You may be saying…. BUT what about my opinion??? Stop.
di·a·logue: a conversation between two or more persons; an exchange of ideas or opinions on a particular issue…. with a view to reaching an amicable agreement or settlement.
A true dialogue means you will be asked questions. Answer them. Do not rage at the other side. In fact, as best as possible, do not mention the other side. It puts the recipient on the defensive. Present yours calmly. Explain what it means to you. Explain what you hope to achieve. Explain what you need help with. Be open to educating. Expect that they may not understand at first. Be okay with that. Allow their humanness.
And with all of this, approach others with compassion.
I fear that this community is not really ready for dialogue. I think questioning and listening with a simple goal toward understanding maybe needs to be where we work. Stop talking. Start listening. It is terrifically hard for us, but a struggle worth working toward.
The world is really good at tearing us apart. We are really good at tearing ourselves apart. Let’s not allow it to happen.

Showcase: Xanthe Wise

Intersex and autism - biological variation or disorder?

I've been researching intersex for a blog post I'm thinking about for my God Confusion blog.

It is estimated as much as 4% of population have some degree of intersex (biologically between male & female). The medical profession made intersex invisible for decades because it was thought to be 'abnormal'. Most people that are intersex would never know it, because they have typical anatomy for male or female and can produce offspring.

Instead of accepting differences, for decades psychiatrists, psychologists and religious fundamentalists have preached that intersex is a defect/deformity/disorder that needs to be fixed. All this has done is create shame and stigma and many broken people.

In order to fit binary sex categories, many children were mutilated with surgery. In the western world, everyone is assigned a legal sex, and too bad if you're intersex and been assigned the sex that prevents you from legally marrying (heterosexual marriage has also been ingrained by religious fundamentalists).

I've read several comments by religious people that claim intersex people are not entitled to marry at all. Even recently, there has been hate speech and claims that people that are intersex are immoral.

My thinking is intersex is a biological variation, not a deformity (it's society that's turned it into a deformity). The labels 'male' and 'female' are human assignments and people have been mutilated for decades to conform to two categories. Biologically, sex is not binary, but is more of a continuum.

There are over 40 different known 'conditions', mostly genetic that result in intersex. Not many of them result in unambiguous genitalia. Intersex is the preferred catch-all label instead of misleading labels such as hermaphrodite.

All labels are human constructs. By their very nature, they exclude people. Labels often carry stigma - look at the stigma that goes with mental illness. I never tell a potential workplace I've suffered depression, as I won't get the job. Part of the reason I write under a pen-name is because of stigma about the topics I write about. It gives me a buffer against ignorant bigots.

I read some heart-breaking stories by people that are intersex - the suffering they endured being made out to be freaks by society. Advocates educate people about the facts, myths and reality of intersex. One pointed out they are not defined by their intersex - they are a human being and intersex is a part of who they are.

For years autism and Asperger's were seen by the psychology and the medical profession as a disorder to be fixed. Like intersex, it was thought to be rare and abnormal. It is now estimated that 1% of the population are/have Asperger's. Asperger's is on the autistic spectrum and there are plans by psychiatry to dispense of the 'Asperger's' label and just have one category, autism.

Psychology/psychiatry is often at odds with personal experience. Autism advocates have spoken out where 'experts' reinforce stigma.

My thinking is that autism/Asperger's is a variation of human personality. Most of my difficulties come because of misunderstanding from society. Like intersex, any way of behaving differently from the majority of society is seen as abnormal, wrong and immoral. The same goes for atheism.

I am an advocate for autism/Asperger's and atheism because I have experienced first hand the stigma from society of being different. My own family don't accept me for my differences - I don't fit their narrow black-and-white worldview ingrained by religion.

Yet, I am not defined by my autism and atheism. That is not all of me - I am also a mother, a wife, a musician, a thinker, a writer, an INTP. I'm a woman (heck, there's a 1 in 25 chance I'm intersex but don't know it).

I'm heterosexual (and sometimes feel I'm asexual as I don't have a particularly high sex drive). I'm celiac and I'm sensitive. I'm part-Maori and part-European. I'm a New Zealand citizen and an Australian resident. These are all labels that only give a glimpse of me.

I am a human being - a multifaceted human being, not just a single dimension. Here's one that upsets a lot of people - I'm an animal and an ape. Yes, humans are classified as apes. Doesn't bother me - I like animals.

Male and female gender roles are labels constructed by society. Gender is what sex a person feels inside, irrespective of their biological sex. I'm female, but not a 'girly' female. I studied a degree dominated by males. Women were oppressed for centuries. Now it's swung the other way somewhat.

Anyone outside the 'norm' still gets despised by much of society (because of the influence of Abrahamic religion) - feminine boys, masculine girls. Bisexuals, gays, transgender etc. Tribal groups often embraced difference such as intersex and transgender - they were considered special and a gift.

I'm all for accepting differences and not being forced to conform to some narrow black-and-white views imposed on individuals by the ignorance of society. The majority bullying minority individuals and groups into submission.

This can only take place with education and challenging current worldviews. Let's do what we can to discard bigoted stereotypes and promote understanding.



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