So your child was diagnosed with autism: Tips for navigating the internet

Oh, hello! For those of you who don't know me, I'm Jill, and my kid, who I call Child 1, is autistic. He's 12 now and he received his first diagnosis in May 2004. I've also been on the internet since 1993, ever since America Online spent all their time mailing out those floppy disks that everybody ended up using as coasters. I thought I would take my years of combined experiences and write up a post giving my advice to the parent whose child is recently diagnosed with autism. Because, you see, it's ugly out there. It's messy and it's no fun and if you're new to this you could very easily be freaked out enough to just grab your kid and run and hide; that's probably what I would have done. So let me give you some advice that you might be able to use along the way.

1. Don't take my advice.

Wait. What? Don't take… huh???

See, you have to think about The Internet like a great big beach, full of individual grains of sand, and your brain like the head of a pin. Each of those grains is one person's opinion, or one person's experience, or one organization's mission statement, or one Facebook page's viewpoint, and your job now is to wade through that beach and find the 10 or so grains of sand that will fit on the head of your pin. The only way to find those 10 grains is to dip yourself into the entire beach and go through all the individual grains; taking what you need, leaving behind what you don't. Many of them will not work for you, many of them will cause you to run, screaming for the hills, but some of them will be the ones that speak to you and you need to find those. So don't just take one person's advice and leave it at that, you have to read all the advice, and even if you end up back at that first place that you started, at least you got there on your own, fully armed with knowledge. So the next few months your job is to get in front of your computer and start reading, and read it all, even the most batshit, explosively crazy stuff: you've got to read it all. Take notes, remember the places you like, remember the places you don't like, and then come out the other side with your 10 grains of sand.

2. There is no one "right" way to think

There is no instruction manual here. Every person, every child, is an individual with individual needs and experiences. What works for one person might be the most horrible thing for another, but you won't know what works for you until you figure out what all your options are. ABA was awesome for my kid, but that doesn't automatically mean that ABA is awesome in general: it just means that it was awesome for my kid. Anybody who makes blanket statements about what is good and what is bad for a child with autism, when these issues are not black and white, is not somebody who I believe to be helpful.

Additionally, there are a lot of people out there who may tell you that what you think is wrong, or how you feel is hurtful, and they feel justified in telling you this because they know more about this stuff than you do, and it's probably true that they do know more than you do: about autism. But they don't know you, they don't know your experience and more importantly, they don't know your kid. Remember this as you wade through that beach, because it's the most important thing you can hold in your mind right now: You are an expert on your own child. Nobody else knows your kid like you do, particularly an internet person who has never met them. Nobody else can claim that they know what is best for your child, only you can claim that.

Another thing to remember is not to be swayed by what seems like popularity. Just because somebody has written some books, has been doing this since May 2004, has fancy letters after their name, or is a Facebook page has a lot of likes, it doesn't mean that they're any better than anybody else. First of all, Facebook likes can be easily bought, so a page with high numbers isn't an automatic brand of respectability. Respect has to be earned, it can't just be bought, so if somebody is telling you what to think or feel, rather than helping you to learn, their numbes are meaningless. That's not helping, that's preaching, and you don't need that right now.

3. Trust your instincts

As you sludge through the sand, don't be afraid to stop and ask questions, because you need to meet people right now. There are lots of good people and good places out there who have the information and experience that can help support you and inform your opinion, and these are the people who are going to help get you through this. And there are also lots of bad ones. For example, if you find yourself in the middle of an argument that doesn't seem to have anything to do with you, or people are calling you names for no reason that you can tell, or if you're suddenly having to defend your parenting, or are saying things like "but, that's not even what I said…" RUN. RUN LIKE THE WIND. You've got an entire beach you need to get through, you don't have time to spend defending yourself against things you never even said, or having to repeatedly insist that you actually do love your child, because what the hell kind of crazy talk is that?? Know that everybody brings their own baggage to the table, and because their baggage has nothing to do with you, you have no obligation to spend your time fighting about it. It doesn't matter the horrible thing somebody says to you: it's not about you, it's about them. If it feels wrong to you, then it is wrong for you, so just cut your losses, delete your comments, and get the hell out. The next place you land will be better.

4. Stay away from reddit

Just trust me on this one. Reddit is not for you.

5. Don't let one bad apple ruin an entire viewpoint

Let's say you ask a question about possibly spacing out vaccines and suddenly you've got this person calling you a murderer and blaming you for all those kids that have died of pertussis in California. First of all, see #3 and get the hell out, but more importantly, don't let that one crazy person alter your viewpoint about vaccines in general. That person doesn't represent the group, they only represent themselves. It doesn't mean that all people who support vaccines are nutjob crazies, it just means that one person is. You can ask your question somewhere else and probably get a reasonable, informative answer, and since you need answers, discounting an entire viewpoint because of just one person might leave you with an uninformed opinion. Try again, it will be better somewhere else.

6. Don't panic. But if you do panic, that's okay, too

This is a lot, I know. And you're possibly feeling overwhelmed. You just got this diagnosis for your kid and now you have to wade through a whole stupid beach just to find 10 stupid grains of sand? Are you kidding me?? Shut up, Jill! Yeah, I totally get that. This sucks. But I've been there, I got out the other end, and you'll get there, too. You will make your way; you will find your tribe. This will not break you, I promise. You love your child, that much is 100% fact, and it is that love that will help guide your way. Hold onto that and let it be your flashlight as you sift through the sand.

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You'll notice I haven't provided any links to places I think are good to read because I didn't want to advocate for any particular opinion here, but I'm happy to answer questions if anybody has them, so feel free to contact me at jillsmo@gmail.com or on Facebook here. I love hearing from you guys and I especially like providing guidance, so don't be afraid to contact me. I don't bite! Despite what you may have heard. 

But don't take my word for it, find out for yourself. What the hell do I know, anyway? I'm just one grain of sand. One itchy, sarcastic grain of sand.

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I'm off to #BlogHer14!

Hello blogging audience to whom I have not spoken in some time. So sorry about my uneventful absence. This weekend I'm headed to San Jose to attend BlogHer and I kind of figured that I should probably... you know... blog something. What with going to a blogging conference and all that. And telling people that I'm a blogger. I should probably actually do that. Just to keep up appearances, anyway.

So I'll arrive Friday and leave on Sunday. My only real plan is to do KARAOKE, BITCHES! Which is happening on Friday night after VOTY. And I've already figured out what I'm wearing that night, so in the interest of saving time I thought I'd show you all a picture of what I will look like so that you can spot me easily.

So if you see me, say hi. But be warned: I'm a hugger.

Oh, I have the app thingy, so... add me as a friend or whatever.

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Dear News Media: You are causing the suffering that you report about by reporting the way you do.

I just want to call your attention to this very important post by my friend Stuart Duncan:

Dear news media, this is how you fail the autism community so badly

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The Dive Bar Welcomes: Adam Tanglewood

Just a reminder that I don't write Dive Bar posts. For more information see the tab at the top. This post was sent to me by a good blogger friend who wishes to remain anonymous.

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Any time a parent takes the life of their child it is a tragedy independent of neurology. Any time a parent takes the life of an autistic child not only is it tragic, but it inevitably also turns into fuel for the ongoing Autism Wars and acts as a lightning seed to a shitstorm. A shit-ning seed, if you will.

Well, it’s happened again. And it sucks, and it’s tragic, tragic for the child, tragic for the mother, just straight up tragic. And now the sides will again rise up… and inundate the comments of your favorite autism bloggers.

I haven't seen a shitstorm yet. I think because I don't really watch my timeline anymore and only look at groups I miss most of this stuff.

From my perspective, I wish there was someone who would just address the "severe needs" side of this to ANYONE'S satisfaction. Someone who could talk intelligently about it from a self-advocate's perspective without saying that the reason child "A" self harms, or is aggressive is because the parent is doing something wrong. Someone who understands that it isn't practically possible to wrap our lives in fucking bubble gum and rainbows because they're not typically for sale, and when they are they're being sold by quacks and they're not ACTUAL rainbows, and the bubble gum is sugarless.

I wish someone would write something that said "Here is the evidence supporting the way to sensitively get children to stop harming themselves and being aggressive".

But there's not anyone. Because this is autism. And the autistic self-advocates, though in possession of great insights about what it is like to be autistic, and what things helped them...and despite their hatred of the phrase, "your autism is not like my child's autism" will never acknowledge that they are just as ignorant as NT (or autistic) parents about how to make it stop and how to make it better.

When I was at my lowest point getting slammed by self advocates for slights both real and imagined, a very close autistic friend of mine said something to me that made me feel a lot better. She said, "Do you think these people speak for ME? Because they don't." And while I get that they speak for SOME...so do the Autism is an Epidemic people, so do the I Hate Autism People, so do the neurodiversity people, and the Autism is a Blessing people and so do I. And I can't help but think that we each know just as much about this shit as any of the others do...nothing.

It feels like the analogy is this: if I raise an NT daughter, then I can't speak for that daughter because I'm not an NT woman. And only an NT woman (childless or a parent, really doesn’t matter for the analogy) would truly understand what an NT girl is going through. So what I should do is find an NT woman who doesn't know my daughter or her life and get her to please explain to me how to best parent my daughter because I'm a man and as a man don't "understand" my child the way this childless, but female person would.

Fuck you. I'm sorry. I reject the notion that you know what my daughter is going through because you hypothetically share neurology. Because the truth is you actually don't. Autism Spectrum contains within it a HOST of different conditions and issues that are all labeled under this huge autism umbrella. It's like treating "Cancer" (Yeah, I went there) as all one cancer and ignoring that leukemia gets treated differently than skin cancer gets treated differently than breast cancer gets treated differently than prostate cancer.

So that if you get breast cancer you should go ask someone who had skin cancer what to expect...because that's what those fucking assholes are implying...that Retts and Asperger's and PDD NOS and Classic Autism and every other disorder and comorbid condition from SPD to Epilepsy you can include on the spectrum are all the same and feel the same and should be treated the same. And they know best because they are autistic. Fuck that.

If you’re someone who is a parent who is trying to make sense of this all, and failing. and you’re surprised/shocked/saddened that autistic people are, because of your thinking, calling you a bigot, a murderer, an abuser, then this post is for you.

Those people don’t speak for the autism community. They do not represent “the majority” of autistics. They do not represent your son or daughter (unless your son or daughter is reading this and saying, “yeah, those guys represent me). They are just angry, angry fucking people. And I get why they’re angry. I do. But being angry isn’t the same thing as being right.

Bad things happen in this world. NT parents have killed their NT kids. NT kids have killed their NT parents. NT parents have killed their autistic kids. Autistic kids have killed their NT parents…people kill people. It’s fucked up. It’s tragic. We’ll never stop asking “why did that happen?” But it's not the foregone conclusion of someone’s politically charged “NT Parents are murderers” agenda.

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April 1, 2014: it's not a joke

About a week ago I heard about Travis Stratton, a 4 year old autistic boy in California who went missing and drowned. There was only about a 3 hour period between his parents calling the police and when his body was found in a neighbor's swimming pool. My heart was shattered for this boy and his family. And honestly? I was angry. Because little 4 year old boys should not be drowning, but also because he was another in a too long line of names of autistic children who have died. I thought it would be a nice gesture to light a virtual candle in remembrance of the lives that have been lost, and so the Candlelight Vigil for Autistic Children Who Lost Their Lives After Wandering was born.

Child 1 is not what we call "a runner," I don't have to spend any time (at this point) worrying about his safety if I'm not keeping a constant eye on him. But this is my personal experience with autism, this is not the universal experience. I have way, way too many friends who spend literally every moment of their lives afraid of what might happen to their babies if they look away for just one second. My point in creating the vigil is not only to remember the people that have died, but to help show that there are many experiences with autism, and regardless of our personal opinions we all can agree that when children die it is an unimaginable tragedy.

If autism acceptance and awareness really is the true goal, we need to put egos aside and stand together. We all need to recognize that our personal experiences are not universal experiences, that each of us is unique in our own way, we all bring a different voice to the table, and working together is the only way to achieve this goal. And you can dislike me for the things I've written about in the past, but you can't just ignore this very real issue because I'm the one trying to bring awareness to it.

This isn't about me. This isn't about you. This is about all of us. Together. 

Are you willing to acknowledge that acceptance and awareness is a group effort? I am.  Will you join me?

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Let's stand together on April 1st

There is a Facebook event I would like to tell you all about: A virtual candlelight vigil to remember and respect the lives of autistic children who have died after an elopement. On April 1, 2014, please use the above graphic and spread it as far and as wide as you can. Post it to your wall, use it as your avatar, post it to your friends' walls and group and pages, tweet it, pin it, do whatever you can think of so that people will remember the children who have died after an elopement. (Go ahead and take it, you don't need to ask permission.)

The Kennedy Krieger Institute reported in a 2012 study that up to 48% of all children with autism will engage in wandering behavior or "elopement," which is defined as the tendency to leave a safe space and enter into a potentially dangerous one, and is a rate 4 times higher than their neurotypical siblings.

The Krieger Institute also reported that "35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means."

In 2012, the National Autism Association reported that "accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement."

This vigil is being organized to spread awareness of the very real issue of wandering behavior in autistic people and the unspeakable tragedies that can, and have occurred as a result.

Please join us in respectful remembrance of the children who have died.

This event is not about placing blame or even to talk about solutions. The sole purpose of what the vigil was created this for is to simply remember the children who have died. We're hoping that personal feelings about each other can be put aside long enough so that the community can come together and mourn the unspeakable loss of innocent young lives. Let's forget our differences for one day. Maybe that will lead to something better.

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I am both offended by the word "retard" and a zealous supporter of free speech

I don't usually give much power to words; at least not as much as other people can. There aren't very many words, in fact, that I will take offense to. It used to be that "retard" (I prefer to just say it, as opposed to "The R Word") didn't bother me at all; my theory was that what was important wasn't the word itself, it was the intent behind it. Was it just a joke? I can understand jokes, even ones in bad taste. Is it just a word, it doesn't mean that much? I understand that, I think we give too much power to simple words. After all, like they say on the internets, you don't call retarded people retards, you call your friends retards when they're acting retarded. So it shouldn't even be offensive. Honestly? I used to be able to understand and agree with that. I've even blogged about it.

Like I say in my title, I am a zealous supporter of free speech. I believe in speaking the truth at all times. I believe in censoring absolutely nothing. I believe that we give too much power to words, and that oftentimes they will become the ignition source of an argument that actually has nothing to do with the word itself; semantics, I would say.

But then Child 1 had his first brush with being bullied, and immediately the word took on a new meaning for me. Overnight it went from an innocent word with no real power, to the symbol of all the bullying that he might, and probably will, face at the hands of other people. When I hear, or read, that word now, I don't try to analyze the intent behind it, I think about my sweet child and how he will be the recipient of that word. It may be as a joke, it may be as an outright insult, I don't know. Whatever it is, though, it will be used against him. Do you watch Breaking Bad? I always think of this scene. No, they don't use the word retard in this scene, but this is how I picture the people who would use that word against my kid.


Hypocritical, you say? Perhaps. These two schools of thought don't necessarily go together, which is why I often have a difficult time talking about it. In fact, I used to see the word go by a lot in my twitter timeline, and instead of saying something every time I saw it, I decided to add a tweet deck filter so that I wouldn't ever see it. That filter, ironically, will make it so that I will not see any of my own tweets about this posts or any of your retweets. But I felt it was the only acceptable option for me, because I always want to say something, but then I feel like a hypocrite for it. So I just filter it out.

People will want to tell me now that when you try to get a word banned you go down a slippery slope which can ultimately erode the first amendment, and I don't disagree with that. I am not saying "please stop saying it," I am saying "I am offended by it, and here's why." I'm not telling anybody what to do or what to say, I'm telling you that it offends me and I'm telling you why. I am not asking anybody to change; I am asking you to think. If, after reading this, you will still go about your life calling your friends retards, well, that's your choice, of course. But you're an asshole for it.

And that's the thing about what they call "politically correct speech." In my opinion, it's not about one group of people trying to rule over another one, it's just about not being an asshole. It's about being respectful to other people and their feelings, even if you disagree with them. If you know somebody is offended and upset by your use of a word, and you still do it? You're an asshole; and I want nothing to do with you.

Am I being oversensitive? Probably. After all, this is all about emotion for me. The word has power over me because my son is autistic, so, sure: I'm oversensitive. I'll accept that. What's that you say? I shouldn't be so sensitive? Yeah, you're probably right about that; I probably shouldn't be so sensitive. And yet.... here we are.

And you're still going to say it? And then defend yourself because it's your first amendment right? Cool. Go for it. I support your first amendment rights. But you're still an asshole. And I still want nothing to do with you.

Watch that video up there and pretend you were one of those parents. Pretend you are that boy. How would you feel?

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I'm going to BlogHer 14

For those of you who don't know, BlogHer is an annual conference for Bloggers. This year it is in San Jose, CA, July 24th through July 26th. You can read about it more here.

I'm going this year because it's only an hour south of me so I don't have to pay for travel, which is convenient; I understand that folks live all over the world and that's not as convenient for everybody else, though.

I'm curious to know if people would say the kind of thing that they would type into a Facebook comment when they're actually looking their foe in the face. So let's get together! If you're going, or thinking about going, and you're one of those people who thinks I'm the Devil Incarnate, or even just somebody who only slightly dislikes me but doesn't really care all that much, I will personally buy all the drinks for anybody who is willing to sit down in front of me and have a conversation.  Let's see what happens when we're face to face.

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Skyping

(Oh my god, she posted twice in one day? What the hell is happening???? I DON'T EVEN KNOW WHO I AM ANYMORE. I figured I should just post it all at once, otherwise it would depart my brain forever, never to return. And this shit is important, too.)


I had a Skype conference call with a client earlier today. Skype calls are awesome because you don't need to shower AND you don't need to wear pants!

Unfortunately, though, since I was having this call from my office at home, it looked like this much of the time:

No pants, though.....

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Pilates

I've been working out a lot lately; doing a lot of cardio. And I was thinking I should maybe mix things up a bit, and from what I've read it's important to "strengthen the core," as it were; and I don't mean kegels. (I don't just mean kegels, anyway. AAAAAAAAAAAAnd release).

So what's good core strengthening exercise? Yoga, right? And pilates? I guess. But I'm kind of afraid to take one of those classes because the chances of me doing something stupid and looking like a complete fool are pretty high. I mean, the chances of those things happening are pretty high on a regular day, but get me on a big pilates ball? In front of people? There's just no way that can turn out well for me.

So I've decided to do the next best thing and just draw me doing pilates.

Boom. Core strengthened.


(Apparently I already had a tag labeled "this one is kind of dumb." Who knew?)

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For Avonte

Avonte, I am so sorry that this happened to you.

I am so sorry that the people who were supposed to keep you safe did not do their job.

I am so sorry that you died because of their failure.

I am so sorry that you weren't protected.

I am so sorry for the unspeakable grief your family is feeling.

I am so sorry that our society doesn't care enough to make a commitment to you.

I am so sorry that the people who are supposed to speak for you failed to keep you safe.

I am so sorry that our failure lead to your death.

My heart has been shattered into a million pieces because you got lost and died.

I am so sorry.

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Emily

Reposting on this, the shittiest of anniversaries. I miss you, cousin  

Thanksgiving 2012

I had a beautiful cousin, whose name was Emily, and she died last week. She was 36.

Do you know people who just seem to "get" things? I don't know if I'll explain this properly, but I'll try. Emily understood things. You would explain something, perhaps badly, and she would just understand. I could switch from serious to sarcastic in a second, and she was always right there with me, the whole time; playing along. You could talk with passion about something that meant a lot to you that you couldn't tell anybody else, and Emily would get it. And it wasn't like you just thought she understood, she could repeat back her understanding of your situation perfectly, and she would be right.

Emily was on the same wavelength as me, all the time; but Emily was on the same wavelength as everybody; all the time. She was bipolar, and I think she lived her life feeling not quite the same as everybody else. She was introspective. And analytical. And smart. And so, so funny. And I think it was this combination of things: her immense intelligence, and the way she felt about herself in the world, that made her as understanding as she was. I felt so comfortable around her, and honestly I don't feel that comfortable around people in real life, most of the time. She had a gift.

Her loss will be felt very very strongly in my house. She was my regular babysitter and was here often and she had this incredible connection with my children. She would spend hours playing Pokemon with Child 2 (after he insisted that he teach her how). She listened as he rambled on and and on and on about whatever was happening in his Minecraft world. She was fun, and she was funny, and he loved being around her.  I'll never forget that the last time she babysat Child 2 was jumping up and down saying "YAY! Emily will be here in 10 minutes!!"

But her connection with Child 1 was the most remarkable.

As a parent of a child with autism, one of my hopes is that I can help him find adults who can act as mentors. Adults who have an understanding of his world and who have experienced similar things, who can help guide him through his life. Emily was not autistic, but I think that she spent so much of her life feeling "different" from everybody else, that it allowed her to create such a beautiful bond with Child 1, who is also so "different." She would tirelessly take him on elevator rides, and to the various stores that he wanted to visit. They watched BART trains together, and she never had a need to ask "why does he like BART so much?" she just knew. He loves his trains, and she knew how it felt to love something. She would often mention how much she could relate to him and his quirks. She got it. 

I already miss her so much. We didn't even talk every day, it was about once a week or so, but I already feel her absence from my life so strongly. My children will miss her so much, and I don't know if they understand what death really means, but I grieve for the sadness they will feel as they begin to understand the reality of her being gone.

The last few months had been hard for her; she had been struggling. In my phone I have the last communication we had; a text message I had sent her. It says "I hope you're doing okay. If you ever want to come and just hang out here you are always always welcome. < 3 " I don't think I will ever delete it. I'm just so glad that the last thing I said to her was that she was loved and she was welcomed. She didn't respond, but I hope she knew that I meant it.

I don't think this makes a whole lot of sense, my writing is choppy and I apologize. I'm very sad, and I'm doing my best to explain how awesome she was. Emily would have understood.

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If you are so inclined, you may be interested in making a donation in her name (Emily Salzfass) to Depression and Bipolar Support Alliance.

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So, I hear blogging is dead now

I read an article recently, and my pals have been chatting, that blogging is dead. People don't blog anymore, apparently. I don't really know why, because I when I say I "read" an article, really what I mean is I saw the headline in my Facebook feed. Because I'm an American. But I guess comments are down and traffic is down and the conclusion is that blogging is dead?

I'd just like to point out that THIS blog has been dead for a while, so if the topic is about how blogging is dead, the only natural conclusion is that I've created this Dead Blogging thing. Because I'm a trendsetter. I set trends. Particularly if said trends involve not doing something, or doing something wrong, or looking like an idiot while doing something, or perhaps falling down and hurting yourself in the process of doing something. Because I'm trendy.

So, if anybody was wondering Whatever Happened to Jill's Blog? The blog is dead because blogging is dead.

And trends.

Also irony.

Huh?

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