And now, I draw the line on this blog

In its 4.5-year existence, this blog has featured 658 posts. A couple of dozen still sit there, as drafts, ideas started but not completed, probably some rants begun and then fizzled away. A grand total of 280 of those posts have been about parenting, but 310...almost half...have been about autism. Ever since our oldest boy received his diagnosis at age 3, a diagnosis I had long anticipated, our parenting has, indeed, been knowingly about autism. Before that, it was also about autism, but we didn't know it yet.

The bytes and bits here have chronicled our lives--the ups and downs, the roller coasters--the fears and worries, decisions and realizations big and small. Through it all, we've had help. Support from insightful and caring autistics who have stepped in every time I've asked to let my son know that it gets better. Support from parents with whom I may not always have agreed but whose thoughtful insights have sometimes been revelations.

Writing here has involved catharsis, enlightenment, missteps, and moments of epiphany. It has been one of my deepest pleasures and greatest needs. But my son is now 10 and a half. I've noted recently that I cannot in good conscience continue to write about him while maintaining my sense of what I owe him as an individual and to respect his personhood. My other sons are also getting older, and I am becoming acutely aware of the need to maintain their privacy, as well. I will continue to blog, but not specifically about them or about our lives, and not here. While our lives less ordinary continue, this blog has run its course.

One thing I've always noticed about blogging is that it's not my posts about our personal lives, about our upheavals, that attract people and pile up the comments. It's always the controversies, the things that anger people, the posts that cross some line that divides...those are the ones that get people to read. Frankly, while I write posts like that compulsively when I come across something that raises my ire, I've always found it off-putting that people generally don't seem to care nearly as much about, you know, life and all that as they do about fighting with each other. It's not news to me, but it has left me somewhat cynical.

In my penultimate post, I sketched out the core of what I've learned so far in my years in the autism community, most particularly what autistic people have taught me about listening, about individuality, about voices. All change takes time. As we continue to work for that change, fight for that change--and yes, it takes conflict to make it happen--we probably will all, whether we're writing about it or not, continue our fascination with autism as we remain, turning and turning, in its ever-widening gyre.

In the autism community, we're fond of drawing lines

In the autism community, you are required to draw lines. There's no way to ride a fence, park it in the middle of the road. Even if you try--and why would you?--people will beckon to you from either side, try to convince you, or at least get pissed off at you. There isn't a potential line in existence that someone in the autism community hasn't drawn, almost to the refinement of pointillism. The upshot of these lines is that people who can't trace their origins, who have no real investment in doing so, can't quite get a grasp of what autism might be. Obviously, this state of affairs isn't useful to autistic people, especially those who advocate for a better world for themselves and autistic people who come after them.

Where do we draw the lines? Wherever we can find the slightest reason to do so.

• Parents draw lines when they think their voices don't matter.
• Autism parents draw lines between themselves and other parents based on parental philosophies more than even garden-variety parents in San Francisco. And that's saying something.
• Autistics draw lines because their lives have been one slammed door, one sneer, one derisive laugh, one bullying incident, one misinterpreted communication after another.
• There are lines around and through different diagnoses, enough to slice a community to ribbons if the divisions are drawn sharp enough.
• There's the disability pissing contest--mine's worse than yours. We suffer more. Your suffering cannot compare. My suffering kicks your suffering's ass.
• You think that doesn't cause autism? You are completely irrational and a minion of Big Pharma.
• Are you a positive person with a positive outlook? Get to that side please. This side of the aisle is reserved only for people who are negative--because negativity, you see, is the only honest interpretation of autism and disability.
• You can talk? You're consigned to "not as important." Only parents of nonverbal children on this side of the line.
• Wait, did you say something? You're not autistic. Sorry. People who can speak aren't really autistic. You can't speak for my nonverbal child.
• Oh, you can type? Articulate yourself well? Sorry, you don't count. You're clearly fully functioning and have no voice for people who are truly autistic.
• Your child's diet is not GFCF? Obviously, you've failed as a parent. Please join the other failures over there.
• You vaccinate? Dumbass.
• Did you just say that it's hard for you? Oh, quit whining.
• You have Asperger's? Why are you even in this tent? People like you? You're not autistic. You're just "quirky," possibly even "cutesie." Also, when you reach adulthood, you don't exist.
• Speaking of non-existent, I'm sorry, but you can't be a middle-aged autistic person because, well, autistic people didn't exist when you were born.
• Did you write something positive about your autistic child? Clearly, you are lying and/or willfully delusional. Please, take your place elsewhere. You don't belong with the rest of us.
• You're grieving the loss of hopes you had? Sorry, but that's not allowed.
• You have a job, a significant other, an education? You can't be autistic. Autistic people can't do these things.
• Oh, you can feel for other people? You can't possibly have autism.
• You say you have a disability, but you're happy? Then clearly, you are not disabled.
• I'm sorry, I didn't quite hear that. What? You find positives in your autism? That's simply impossible. There is nothing about autism that is positive.
• Did you just make a joke? You must have been joking when you said you were autistic. Autistic people don't have a sense of humor.
• Oh, you had a bad day because of autism, yours or your child's? Nope. Only the good stuff here.
• Oh, I'm sorry...those autistic people can't talk to you because they have nothing to say that might someday open a door for your autistic child.
• You don't worry that autistic people might read what you say and perhaps find it offensive? Oh...you say it's because truly autistic people can't read, much less feel offense?
• That woman over there thinks that behavior is communication. She's obviously deluded and doesn't realize that her child is simply toxic and that's the autism talking, not the person.
• If you don't think autism stole your child, you are living in a land of rainbows and unicorns. Slap, slap. Wake up. You're an idiot.
• Your child is mainstreamed? Not autism. 
• If your experience with autism isn't my experience with autism, then you're not on my side.
• If your experience with autism isn't my experience with autism, you cannot have my trust, and I will judge you.

In other words, in the autism community, if you haven't drawn a line, positioned yourself on one side or the other of a million tiny divisions, staked your claim and marked your territory, well...clearly, you're not paying attention.

Do I have lines? Yes, I do. Here are my lines:

• Respect autistic people and listen to what they have to say. Period.
• Make no assumptions about capacity, but always assume potential.
• Do not second-guess the personal experiences of others.
• Do not second-guess someone's diagnosis or self identification of autism.
• Do not write things about my family members--including my children--that compromise their privacy or personhood.
• Do not expect anyone else to feel as I do about their experiences or mine.
• Remember that everyone is fighting a personal battle.
• Remember that disability does not mean "no ability" and that different does not mean "less."

Those are my lines. If I find that someone has willfully or accidentally crossed them, I will have something to say about it. I always have.

"Autism and Asperger aren't even in the same universe." I beg to differ

This day, it has been a day. My two sons, one of whom is diagnosed with Asperger Syndrome (AS) and the other of whom has ADHD so disabling that he can’t be in a regular classroom (meds are contraindicated because of his tics and OCD), were very, very off today. Homeschooling was disastrous. There was much flapping, odd body posturing, echolaling, patterned grimacing, vocalizing, and a complete inability to focus. It was an intensely frustrating morning with two non-neurotypical children who were utterly dysregulated, possibly because of related GI issues. That left me with some dysregulation as well, something that was not helped by coming across this blog post from someone who is a parent of three children, one with autism and two, he says, with AS.

The post contradicts itself from beginning to end. But that’s not what made it one of the most angering posts I’ve seen in the autism blogosphere in a long, long time. Nope. What the writer did in this post was take his personal example with his children and (a) claim that unnamed people are harassing him to be more positive about autism, (b) that autism and AS are “not even in the same universe," and (c) that autism is so very, very much more horrible than AS, based on his experience with his children, that it’s simply unacceptable for anyone to behave as though they were similar or as though autism could have any positive aspects to it.

The writer trots out ideas and concepts that I thought were seeing the final dying of the light. Ideas such as a diagnostic and binary separation between AS and autism. Ideas that the autistic people who speak out on behalf of autism as something besides a wholesale tragedy are all AS or “high functioning.” These chestnuts from the autism files nevertheless emerged in this post as Golden Truths.

I’d ignore the entire thing if it weren’t for the fact that it’s been “liked” and retweeted many, many times. The fact that it exists, the fact that people still seem to buy into these erroneous and unsupported assertions—especially that all autism parents with positive attitudes are parents of “high-functioning” children and that all autistic people who advocate are “high functioning”—the fact that people are still buying into this makes me ill. It’s offensive and demoralizing to me, so I can only imagine how autism parents whose children have intense autism or autistic people who are intensely autistic must feel when they read this kind of thing.

I have taken the post piece by piece below, in italics, and added commentary.

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I want to preface this post with a few things. I’m not attempting to force anyone to see things my way. I realize, that we will never all be on the same page. However, what I hope to do is point out a problem within the Autism community that contributes to the rift that has occurred between parents of kids in different places on the spectrum.  I think that we need to be able to show a basic level of respect for each other. Everyone’s experience with Autism is different. It’s important to realize that one person’s experience with Autism does not mirror another person’s by default.

First of all, this perpetuates the presumption that the “rift” is between parents of children who are at different places along the spectrum. I’m running down the list of autism parents I know well and with whom I share a similar attitude, and they are split about evenly between having children who have intense autism and having children who are currently diagnosed with PDD-NOS or AS. I’ve seen this hoary old chestnut dug up again and again, yet reality defies its assertions. Attitudes about autism, from my experience, have little to do with the autism itself and everything to do with the owner of the attitude.

I have noticed a lot of criticism lately aimed at parent’s that tend to not see the positive side of Autism. I really am dumbfounded by the lack of compassion individuals in the Autism community can have for one another. I realize that my blog is sorta unique in the sense that I don’t try to paint a positive image where there isn’t one and I’m not afraid to address the reality of how Autism has affected my family.

I’d like to see the links to this criticism. Where is it? And I can’t see how this  blog is unique in presenting the reality of autism. I read many, many blogs and Tumblrs whose writers—both autistic and parents of autistic people—articulate quite clearly the realities of autism. I address the realities on my own blog, in fact. There are no unicorns and rainbows there or here. If I choose not to present a negative experience (or a positive one, for that matter) here, it's not from intellectual or willful dishonesty or fear but because I always strive to honor my children's right to personhood and individuality and work to avoid public writing about things that might be humiliating or shaming to them, whether they would be aware or not.

Many of the Autism related blogs out there are really upbeat and positive…and that’s cool, if that’s their experience. I just wonder why people are so afraid to be more honest about their experience, especially when that experience is more negative?  I say this all the time but I’ll say it again. It’s so vitally important that we share our stories, both good and bad. The only way people (including those within the Autism community) are going to ever recognize and acknowledge that there is a difference between raising a child with Aspergers and raising a child with lower functioning Autism,  is if they know it’s there.

This is a presumption that people are being dishonest in how they describe their lives and an implication that “being upbeat and positive” is somehow the equivalent of living a lie. That they're "afraid" to be honest. Those implications are absolutely not cool--you are taking it upon yourself to accuse people of intellectual dishonesty. Some people are naturally upbeat and positive, and some people are naturally negative and suffer from martyr complexes. If you don’t like reading writing from people who are generally happy about their lives or who take a positively realistic attitude about them, then don’t.

If we don’t speak up, no one will ever hear our voice and the world will go on seeing only one part of what Autism is.

Who is “we” here?

I think it’s important for people to be as transparent as possible when it comes to something as misunderstood as Autism. I say misunderstood because the general public, heck, the special needs parents within the Autism community itself, seem to lack the understanding of just how profoundly dynamic Autism can and will be.

I again would like to see some evidence of this lack of understanding within the special needs community, specifically the autism community, at least besides this egregiously misinformed post. I’ve never come across it.

I know I sound like a scratched record, but Autism and Aspergers aren’t even in the same universe and I can comfortable say this having children in both places on the spectrum. What happens all to often, is that Aspergers becomes the public face of the Autism spectrum and it’s only voice. This is a huge problem, especially for families like mine. As a parent to 2 boys with Aspergers and 1 with Autism, I feel very comfortable saying that.

Autism and AS are “not even in the same universe,” and your evidence for this claim is within your own family? That’s not evidence. That’s not a “HUGE” problem. It’s your problem. You’re presuming that the autistic voices you hear are all from people with AS. I’d like to see your evidence of that. From my personal experience, many autistic voices I hear and read are from people who would be considered intensely autistic. Also from my experience, my son has a diagnosis of AS. The reason? He used words “on time.” Without that criterion, he would have an autism diagnosis. The line is that fine. By the way, those words he used? They were echolalia, but in 2002, we didn’t know that.

I hear, so often from people with an Aspergers child, “why are you so negative”, “Autism is a blessing”, “my child is mainstreamed and doing great” or “you just need to be more positive.”... I swear to God, if I hear that one more time my head will explode. This is exactly why Autism and Aspergers should be considered different disorders. I know I won’t make a lot of new friends by saying that but I really don’t care.

Where are you hearing this? Links? Who are these AS parents who are telling you this? They shouldn't step into your life and tell you how to live it any more than you should lecture people about how honest they are about their personal experiences.

While Autism and Aspergers share some of the same traits, raising a child with Autism and raising a child with Aspergers isn’t even in the same league. Now, before you flood me with hate mail, remember, I have a child with Autism as well as 2 boys with Aspergers, so I understand the difference.

I’m not sure you do understand the diagnostic difference, which in our own case happens to be a very murky one, and the current evidence suggests that there may not be one. Again, you use your family n of 1 and your individual n of 3 to support what you’re saying. Do you have any actual links or data?

Now, PLEASE hear me when I say this, I’m NOT saying that raising a child with Aspergers is easy, because it isn’t. I’m completely aware of this fact.

While raising a child with Aspergers is not easy, it is however, very different than raising a child with Autism. Raising a child with Autism is very often infinitely more challenging. I understand why Aspergers was added to the Autism spectrum. I also understand why it’s going to be removed in the next edition of the DSM.

Raising a child is not easy. Period. My child with ADHD, tics, and OCD has considerable disability and struggles that are an extraordinary challenge for us all, but he’s not autistic. Raising him is very different from raising my sole apparently neurotypical child, but my neurotypical child is also a huge challenge, often in some very neurotypical ways. 

Honestly, I don’t personally care, one way or the other as I have much bigger things to worry about.

Clearly, this is untrue, as you’ve devoted this entire blog post to it.

However, and this is a big however, that doesn’t mean I don’t recognize this as a problem. I see and hear almost everyday what the general public and the Autism community itself, thinks Autism is. I find it disturbing that people within the Autism community don’t realize there is more to Autism than Aspergers.

On what do you base this assumed lack of information on the part of the “autism community”? I’ve been deeply involved in this community for about 7 years and have not observed what you describe here. This blanket assertion is baffling to me.

I’m going to say something, with no intentions of offending anyone and with the up most respect. If you think that raising a child with Aspergers is the same as raising a child with Autism, you have no idea what you’re talking about. It’s so unfair to judge a parent struggling with Autism, for not being more positive. The reason they aren’t all sunshine and roses is because many times, there is no positive side to Autism.

You are being offensive. Period. And again, who is it who is hassling you about being more “positive”? And there are a lot of intensely autistic people out there who would take tremendous issue with your assertion that “there is no positive side to autism.” I can only imagine that to them, your words are cruel and incredibly offensive.

Why is this so difficult for people to understand. It’s very clear that many special needs parents out there don’t acknowledge the difference between raising a child with Aspergers and raising a child with Autism, let alone recognize the fact that there is difference in the first place..

It’s unclear still what people are supposed to understand or what you think people find difficult. Your entire post has been devoted to complaining about how different AS and autism are and how people just don’t understand and how negative autism is, but you’ve not provided on iota of evidence or even an example to support what you say. Who are these people who don’t “acknowledge” the differences between raising a child with AS and a child with autism, as you distinguish them in your lexicon? Where are they? I've always acknowledged that raising any of my children will be our own unique experience and not like that of anyone else. 

Autism is by definition, a spectrum disorder. Meaning that Autism is a condition that is not limited to a specific set of symptoms but can and will, vary infinitely within the continuum. This is why Autism for you is NOT Autism for me.

Here, you simply debunk yourself. You say above that AS and autism are not even in the same universe, but they both happen to be spectrum disorders, which you define here as varying “infinitely within a continuum.” How can you assume that your experience applies to all considerations of AS versus autism while then stating the above? Autism for you, I must observe, is not autism for me, either.

I also don’t know anyone who’s ever seriously asserted that their experience with autism is the archetypal experience to which everyone else should refer. Why would they? Hasn’t the trope, “If you’ve met one person with autism, you’ve met one person with autism” been repeated enough yet?

Look, comparing an Aspergers child to a child with Autism really won’t get us anywhere.

But you just did that.

I do however, think that it’s vitally important to understand that there is a difference and a profound one, at that.

You haven’t explained that at all, provided any sources or examples to support what you’re saying. Nothing in this post demonstrates this point in any way.

We need to remember and even acknowledge these differences and not crucify those that are struggling with something you simply don’t understand. Doing so would a step towards becoming a well informed, special needs parent, and a better, fully unified Autism community.

I’m still in need here of some evidence. Who is crucifying whom? You call here for a "better, fully unified" autism community, but your entire post is about drawing a line in the sand in that community and assigning people to different sides of that line based either on their attitudes or an AS vs autism diagnosis. That is not exemplary of a "well-informed special needs parent," and it does nothing whatsoever to forming a "better, fully unified autism community." It's simply divisive. 


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Follow-up: The person who wrote the above-referenced post has responded to my comments on his blog in a post saying that my comments are so ridiculous, he won't bother to respond. In spite of vowing not to respond, he does take the time to call me "intolerant." I'll let that one soak in its own irony juices. I have responded to his "non-response" as follows:


Thanks for asking permission to strip my entire post and post it here (that would be irony). At least I quoted you in my post and stated as much. 

My problem with your post--as I stated in my blog post, tweeted *to* you, and made you aware of by *posting the link in a comment on your own post*-- is as follows: You take it upon yourself to determine that others should be experiencing and responding to autism the way you do. I am not taking issue with your opinions or experiences; I am taking issue with your assumptions about other people. You presume that they are "afraid" and not being honest with themselves. You imply that only people who are AS represent autism to the world. You say you don't want to offend, but when I express offense and state that others might find what you write offensive, particularly autistic people...you're offended. 

I've responded to each of these statements--with your verbatim words, not "out of context"--in my post. You say that this is your experience--although you provide no details, so I can't tell what your experience is--yet you graft it onto the autism community as a "divide." You call me "intolerant" because I don't think you have a right to dictate to people how they respond to their experiences or to imply incorrectly that autistic voices are all AS voices or to imply that people who don't present autism as an endless misery are dishonest and afraid. Nowhere in my post do I demand that you feel a certain way, react a certain way, be a certain way. I don't accuse you of intellectual or emotional dishonesty. 

You don't bother to respond directly to my well-considered comments because they "are ridiculous," yet you call *me* intolerant. You state that there is nothing positive about autism, even as autistic people speak out for themselves and note what is positive about themselves, yet you call me "intolerant." You don't even allow that autistic people have a voice, yet you call me intolerant. You want proof that your post was divisive? Look at the divide. It's right in front of you in your previous post, positives vs negatives, autism vs AS, and it's something *your* post engendered.
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ETA more: The author of the original post has now added responses to his "non-response" post, highlighted in yellow. They primarily consist of "Because people tell me that" and "because a lot of people think I'm right, so I am," which was his response to me on Twitter, as well. Meanwhile, without mentioning his newfound ability to respond, he has posted a comment here appearing to call some sort of a truce and asking why I didn't respond to his original public and opinionated post--in which he actually acknowledges that he's being inflammatory--by email. I'm somewhat at a loss to understand why someone who publicly posted something he himself felt was controversial is so surprised to find its being criticized. 


For anyone interested in more perspective on why talking about disability this way matters, I encourage reading this post from Lynne Soraya. 

Two posts about anti-vax conspiracies

At the Biology Files, I've written two posts about the interwoven network of anti-vaxx, anti-science, anti-autism entities out there whose echo chamber is so cozy, they seem to think the rest of us can't see it.

On tells us much of what we already know--except had you heard about Mercola's ties to Big Chem?

The other is on a more serious note, tracing the links among the people who are still trying to defend Andrew Wakefield in every available venue while apparently trying to pretend they don't know each other--and don't make these plans among themselves for their transparent campaign.

Thinking Person's Guide to Autism: A Chat with the Editors

Here we all are. Shannon des Roches Rosa and Jennifer Byde-Myers, co-founders of Thinking Person's Guide to Autism and co-editors Liz Ditz, Carol Greenburg, and Yours Truly. We are talking about the upcoming Thinking Person's Guide to Autism book, and we have a lot to say.

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