Friday, September 28, 2012

Colin Meloy in Defense of Not Reading the Huffington Post

Colin Meloy
colinmeloy.tumblr.com

A friend of mine wrote me asking why I’d suggested on Twitter that people stop reading the Huffington Post, saying that the political reporting is still really strong and important. This is what I wrote in response:
Hey Sarah,

Yeah, so maybe I got a little short in that tweet, but it’s hard to fit detailed reasoning into 140 characters -- it was mostly just a frustration vent. I clearly hit emergency levels re: HuffPo, which seems to happen too often.

Agreed: a lot of the political reporting is good. The editorial is awful, though. For whatever progress is made by the clear, insightful reporting done by the site’s fine political reporters is deeply undercut by the way it’s presented, with 5,678 point type headlines manufacturing outrage and sensation over every little thing that comes across their desk. Also: the constant feed of ugly, demeaning celebrity-worship-perpetuating trash that seems to make up most of the site’s front page is fucking neanderthal. And the fact it’s supposedly the flagship e-rag for the left (which I think many people believe) is only undermining the real left, the left that I know, for whom the bar is high and care, thoughtfulness, and intelligence is the real gold standard.

But that ain’t the least of it. The most awful thing about that site is its science reporting. Most egregious: its science reporting when it comes to autism. The fact that they give a platform to Jenny McCarthy and her out of touch anti-vaccine screeds is pretty unconscionable in a day and age when the the autism-vaccine link has been completely debunked and whooping cough cases are on the rise in affluent, left leaning communities. Communities who likely read the Huffington Post.
This is the story that got me going this morning, and I hesitate to link to it because I suspect that the bigger reason why HuffPo publishes salacious, misleading, and poorly-vetted stories is to court controversy and up their click-throughs or whatever (which is awful, too): http://www.huffingtonpost.com/franco-antonello/for-the-friends-of-andrea_b_1911321.html

I’m sympathetic to the writer; he seems to be writing with the best of intentions. But as a fellow parent of a kid on the autism spectrum, of a kid who does listen to how his disability is represented in the media, I have very little patience for people who write about autism the way this guy does -- and very little patience for the outlets who publish it. Not only does the writer make an off-the-cuff suggestion that vaccines cause autism, but he equates “deadly diseases” such as HIV to autism, which is awful. Language like that is not only harmful to the autistic community, it spreads bad information to the public at large. It’s irresponsible journalism. To publish it is irresponsible editorial work. And unfortunately, that’s sadly representative of a lot of the HuffPo’s science and autism coverage.

But that’s the thing: The HuffPo has made it their MO to barrage readers with content content content without having much of a thought to what sort of harmful misinformation they might be dispensing. So that’s why I encourage not reading it.

There you go. Sorry to bog your inbox with my rant. Hope all is well with you -- and keep up the good work!

best

colin. 


A version of this letter was originally published at colinmeloy.tumblr.com.

Please contact the The Huffington Post if you share Mr. Meloy's opinions, and consider also expressing appreciation for their autism and science contributors like Todd Drezner, Ariane Zurcher, and Seth Mnookin, who support neurodiversity and autism acceptance. -The Editors

Wednesday, September 26, 2012

A Video Explanation From a Nonspeaking (at times) Autistic

Paula C Durbin-Westby
paulacdurbinwestbyautisticblog.blogspot.com

I am not a completely nonspeaking Autistic, of course. Many people have seen me speak and some do not even know that I lose speech at times. My loss of speech is temporary, and can last a few seconds to a few hours or the good part of a day. Sometimes it really is the good part of the day, as I often find talking to be exhausting and it's nice to not have to do it, even if it is because I temporarily can't do it.

The following short video clip is part of what is going to be a longer video. I have about 5 or 6 of the segments made, but need to get to a much faster Internet connection to upload them, and need some more time to edit it all into one video. Here's for starters. This one was made recently, when I was not able to speak.

For me, not being able to speak does not always coincide with "social anxiety." I was at home, with only the dogs around. No social anxiety. I also was a bit tired all day because I had insomnia the night before, which made me less likely to be able to talk. I only have so much energy. Various things precipitate my not being able to speak: being tired, being overloaded, trying to talk when other people are talking too fast over me, reading or seeing something disturbing, thinking more in visual images than in words. Or, in the case of yesterday, because I was not speaking to anyone but working at the computer, I was "not used to talking anymore" and so had trouble getting started again. It does not take more than half a day of not talking for whatever reason before I need to sort of urge myself to take it up again.

Not being able to speak is very much like, and perhaps exactly like, having an epidural and not being able to wiggle your toe because you are numb from the waist down. I had an epidural once. I tried to wiggle my toe. I tried a lot. It was an experiment! A doctor saw me and said "Cut it out!"

"Cut what out?"

"You're trying to wiggle your toe." (How could he tell?!)

He said that attempting to wiggle my toe was making all the nerves fire that led from my brain to my toe, only nothing was going to happen. He explained that I was wasting precious physical energy that I would need for recovery (kidney stone procedure). About five years ago I tried another experiment -- to talk when I could not. I tried to force myself -- mind over matter! -- and had that same feeling. It's like the nerves that go from my brain to my mouth have disconnected, temporarily.

Regarding the analogy to an epidural. The analogy is more than a simple comparison. The epidural kept me from being able to wiggle my toe, of course, even though all the neurons were firing (although I was having fun trying until the doctor sort of yelled at me). I felt physically exhausted, even though nothing had moved! And, the day I did the two-hour experiment to try to make myself talk, I felt that same feeling of physical exhaustion and thought "I have had this experience before..." and remembered the epidural episode. Probably the process is not exactly the same, but for me (and this might not apply to anyone else, but probably does for some Autistics and others with communication disabilities), it was the same experience and feeling, trying to do something I could not physically do, and being exhausted from trying. During the time I was doing the two-hour "trying to talk" experiment, I was perfectly able (of course!) to write to people and say "Hey, I am trying to make myself talk! This is hard!", with some people writing back, concerned that I should just wait until I started talking again. I had to explain to them that I was doing an experiment on purpose. :) After two hours, I emitted a squeak. I realized that no one, including me, would be able to interpret a squeak, although they might recognize that I was trying to communicate something. It was then that I decided to carry an autism card with me, in case something happened like being the witness to a crime or overloaded in the airport and not able to speak. I also carry writing materials. I don't have any AAC device, yet, and a lot of time it's easy to write, but you can see for yourself how long it takes!

I will write more in the coming few days and weeks. I have been wanting to make one of these for a long time but I had to have a time when I could not talk and I wanted to make a video and I remembered to do it and I was not having a bad hair day. ;)

(One clarification: At the part when the text says "I guess I should try harder" and then I say "That makes me sad," I don't mean sad about not speaking. I mean sad about people saying "Oh, you should just try harder" about things that people can't do, or can't do as easily as others, and especially when children with disabilities hear that.)

---

TRANSCRIPT:

(In general there is mostly silence, sort of white noise in the background most of the time. The scratching/scritching sounds are me writing with a black magic marker on sheets of paper.) First sheet of paper:

OK, right now? I am not able to talk. I am going to try a little experiment. Let's see if I can make myself talk."

Then it shows me trying to talk. I am really trying to even move my mouth but I am not able to do it much. So then I write a note (scritching sounds). I am smiling while I am writing this. Then I try once more to make some sounds

"I can't even move my mouth! I thought I would do that...." (means I thought I would be able to move my mouth and get started on talking.) Then I am smiling while I write the next one:

"I am probably not trying hard enough."

But then, that makes me start to look sad, on the video. I write another piece of paper

"That was supposed to be a joke, but it makes me sad. :( "

Then I add to that: "Especially for KIDS." And I do not look very happy at all.

My last piece of paper says: "OK, this is SO not working. ttyl. (Type to ya later.)

Then I smile a little bit and wave goodbye.




A version of this essay was previously posted at paulacdurbinwestbyautisticblog.blogspot.com

Monday, September 24, 2012

Healing

Kate
 
When I was a fifteen years old, my psychiatrist told me that in ten years' time, there would be a machine that would scan my brain and tell the doctors exactly what medicine to give me to make me normal, to make me whole.

That was thirteen years ago, and though I have not yet heard of any such machine, I've realized that I never needed it. What I needed was acceptance. What I needed was love. These are the things that made me realize that I had, in fact, been whole all along.

Sometimes, I feel as if my life were a long, cold winter, and that spring took a very long time coming. Like many autistic adults, I did not have an easy time of it growing up. Even in adulthood, I struggled with loneliness, employment, and a host of other issues. Though I was almost unaware of it starting, a thaw was coming; the air growing warmer around me. I was finding myself, and I was finding myself healing.

Healing myself does not mean ‘fixing’ or ‘curing’ my autism. I spent a lifetime trying to do that, and although I can now make small talk and eye contact with strangers, I still cannot hide who I am from those who know me well.  For years, I hated myself for the mistakes I made. I knew that everything that went wrong was my fault, and I accepted without protesting whatever pain and abuse came my way. I thought I had it coming, that it was my fault for still being autistic.

Slowly, though, things started changing. I found a wonderful therapist who validated me as a person and  told me that the way people treated me was not okay. I learned about autism and what it meant. I learned that just because other people do not have my same experiences, it does not make my experiences invalid. When I hear things that nobody else can hear, it does not mean that I am crazy. It means that I have sensory processing disorder. Who knew?

I am lucky enough to live in a part of the country with a very active local Asperger’s group as well as a nearby chapter of the Autistic Self Advocacy Network. And I will fully admit, that when I first met ASAN members who said that they were autistic and proud of it, I thought that they were crazy. How could you be proud of something that was so bad? But the people there did not judge me, they knew that I had to come to a place of acceptance on my own, and they knew that healing would take time.

Healing is giving yourself that time. It is acknowledging that you are in pain, and the pain hurts like hell, but at some point in the future the pain will pass. It is telling yourself that you do not need a magic machine, but there is no shame in taking help (or medication) when needed. Healing is doing quite a lot of hard work on your own, just to get to the place where you can accept yourself.

Healing is realizing that you can be both broken and whole. You can be autistic and dislike parts of it, even as you embrace your whole self with all its’ flaws. You have a lifetime of learning ahead of you, and accepting yourself does not mean that you will never change, grow, or find new tricks to make life smoother. You will continue to both defy stereotypes and embrace them. You will stim in the middle of a dance party. You will have days when you are verbal, days when you are not. Being autistic is to be in a liminal state; healing is learning to live with the liminality around you.

Healing is not letting yourself be taken in by charlatans or those promising a cure. In college and high school, I was an easy recruit for evangelical Christian groups, but they were quick to dismiss me when it became clear that I really found that whole Jesus/deity in the sky thing to be a load of bunk. In my twenties, however, I discovered a religion where it is perfectly okay to be an atheist. It is perfectly okay to be a humanist. It is perfectly okay to be whatever you are, as long as you treat others kindly and fairly. Embracing Unitarian Universalism has done more for my healing than anything else. It has given me a community where there truly is unconditional love, although it took me a long time before I really believed them.

Healing sometimes means distancing yourself from people who do not accept you as you are, and who do not love you and support you unconditionally. Sometimes, these people are family members, and it can be very hard at the holidays when everyone is celebrating and you have chosen not to be there. But if every encounter with that person makes you feel unworthy, if they tell you that if you really tried, you wouldn’t be autistic, then being around them is not good for your physical or psychological health.

Healing is forgiving. It is acknowledging that the people who harmed you did not usually do so maliciously. It can be very easy to lay the blame on others, when in fact the blame should go to no one. Anger about the past is useless, as nothing can be done about it. If we think about our dark times, it should only be to warn others against them and to celebrate how far we have come. Throughout your life people may wrong you, and it will not be your fault.

Healing is forgiving yourself. We all make mistakes, and we are all put into situations which are too hard for us to bear. Our past behaviors were not meant maliciously, and those who continue to think so are not healthy for us to be around. We will make mistakes in the future, and we must acknowledge that it is okay to do so, and it is okay to forgive yourself. If you can truly forgive yourself, then you can forgive others as well.

Healing is freedom. Freedom to design your sensory environment perfectly, to choose where you work, where you live, what you eat. It is being in charge of your own self. It is realizing that there is absolutely nothing wrong with spending hours, or even days, deep in the throes of your latest obsession, as long as your life is still getting lived. It is counting your spoons and deciding if going to a social event is worth it, and going to bed early on New Years Eve because you are tired, and there is nothing bad about that. There is nothing bad about you.

Healing is experiences. It's making new memories that you can store in your excellent brain. It is cherishing every moment. It is closing your eyes and singing. It is having people understand your odd quirks and mannerisms, and respecting your knowledge about yourself. It's funny that when you know that you can have a total meltdown, and it will be all okay, you find yourself having fewer meltdowns.

One evening this July, as I sat with friends around the dinner table at a vacation cabin, I realized that I had not had a ‘break’ from being around people all day. Usually, social events leave me so exhausted I have to leave after a couple of hours. But the friends I was with were so open and accepting of me that the tension and anxiety I am constantly carrying had managed to leave. I had relaxed -- in the presence of other people -- for quite possibly the first time in my life. I was healing, and damn, but it felt good.

It is a lot of work to vanquish the demons of your past. When you have internalized a lifetime’s worth of insults and abuse, realizing that you deserve to be treated fairly and respectfully means that your entire worldview will need to change. And when people begin to treat you the way you deserve to be treated, you will become keenly aware of your need to change your view: Because if these people accept me and think that I am worthy of their love, then why do I not think I am worthy of my own love?

Healing is having the courage to love again, even when you have been hurt, even when you know that you will be hurt again. It is acknowledging this radical, exuberant, dizzying idea that you are worthy of your own and other people’s love. What a fantastic concept- I am worthy of my love. I am worthy of yours. You are worthy of this love, just as you are.

Love; the promise of it, the certainty of it, is at the heart of all the healing you will do. Love makes your soul feel weightless, as the pain is lifted and you feel the sunlight on your face. Spring has sprung; summer is coming, summer is here.

Healing has come.

Friday, September 21, 2012

Yes, You May Approach the Short Bus

Shannon Des Roches Rosa
www.squidalicious.com

What I want people to know -- and why I write -- about parenting my autistic son
 
When I realized my son Leo had autism and was a special needs child, I had a visual epiphany similar to the wide-eyed new parent who suddenly sees babies everywhere -- except I saw short buses.

Short buses. The kind that take kids like my autistic son to and from school every day. They’re everywhere, and if you don’t believe me, take a tally the next time you drive around any reasonably-sized town. Then think about all the kids who must be riding on those buses, and those kids’ parents and families. Think about all the kids who used to ride that bus and are now adults. That’ll give you some idea about the size of the local special needs community. I’m guessing it’s larger than you might have thought.

That’s the kind of thinking I’m hoping to jumpstart. I want you to see all of those buses, and consider what they represent.

More than that, I want you to feel comfortable with my child. I want you to feel so comfortable that you don't give his disabilities any more thought than you do the quirks of “typical” kids who never say thank you, pee on the sidewalk when they think no one’s looking, or live on naught but chicken nuggets.

I want you to get to know my son and the people with disabilities in your life, in your neighborhood, in your kids’ schools, to learn what makes those people special because they are unique, not because they're disabled.

That knowledge and ease doesn’t always come naturally. During my own elementary school years, children with special needs were rarely seen or heard, and never included. They were kept apart from us other students, which meant we were tacitly taught to consider them separate and unapproachable.

I don’t want my son to be hidden away like that, to be an unmentionable. I don’t want his sisters to feel like they can't talk about their quirky brother with their friends. I don’t want their schoolmates or cousins to pussyfoot around Leo’s autism. I want all of those kids to discuss disabilities as freely as they do eye, skin, and hair color. I want them to try to include Leo in the discussion, and then laugh instead of squirm if his reaction is inappropriate.

I want you to feel the same way.

I also want you to understand that as positive as I try to be and as much as I love my son and despite all the sweet times we have together, I would be lying if I told you that being Leo's mom is a cakewalk. (Dude, parenting is never a cakewalk.) Instead, I’m going to tell you what it’s really like to have a kid with special needs. I promise to be entertaining, or at the very least engaging. In return I expect you to listen and learn, and hopefully, eventually, to take action.

I don’t mind if you decide to sit on the sidelines for a while while you absorb what I have to say. I don’t even mind if you indulge in occasional voyeur’s gratitude for your own non-disabled children, or differently disabled children -- or lack of children. But I do hope that, once you've listened for a while, you’ll understand why children with special needs are not only worthy of your attention, but they're your responsibility, too.

Childless or child-full, if you are of parenting age and live in the United States, then you will be supported by and/or have to support my son’s generation. Think about that. And then I hope you will realize how critical it is to challenge those who complain about the expense of educating students with special needs, or try to spin them as burdens on the rest of society -- because it makes financial sense to invest in education and therapies for my son and students like him, and give them a chance to learn skills and contribute to society. The costs and social burden are much greater when we relegate people with disabilities to life-long dependency.

Whether you choose to learn, participate, and help foster attitudes of inclusivity that will eventually lead to better care, opportunities, employment, and community for people with disabilities is up to you. I'd love to help show you the way, if you're willing.



A version of this post was previously published at www.blogher.com.

Wednesday, September 19, 2012

My Path to Autism Acceptance

Linda at Outrunning the Storm
outrunningthestorm.wordpress.com

My son, Charlie fell apart last fall when kindergarten started. So did I. It was one of the darkest times in my life. But, I can say today -- and I don’t say this lightly -- that I am so very glad for everything that happened last year.

All of it.

You see, last fall I felt like my child was broken. I knew I was broken and I had no idea what to do about any of it. Most days Charlie wasn’t fit to leave the house. I stopped talking to people. What could I say? I live in fear of my five year old child’s violence?

I couldn’t. I didn’t.

Instead I went to my blog. Under the guise of anonymity, I went to my blog and I wrote and I wrote and then I started reading. Everyday, I read every single post that appeared in the WordPress autism/aspergers tags section. Every single one.

And that is how I came across this. Quiet Hands, by Julia Bascom. (You might note I am the first commenter on the piece.)

That was the day that started to change my life.

It is an undeniably beautiful piece of writing, but initially it didn’t seem overly relevant to my son’s life. I had never heard the phrase ‘quiet hands’ used before. We had never been introduced to ABA and I knew nothing about the therapy. My son did not have any visible stims that I was aware of.

But, there was one phrase that echoed through my mind over and over.
“...because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.”
For weeks whenever I was interacting with my son I would hear that phrase in my head.

I had really wanted to be one of those mothers I read about who moved heaven and earth to save my son. I was so sure the right thing to do was to teach him simply to fit in and to be more like the rest of us. I didn’t want to bury his quirks, I always thought those were beautiful. I just wanted him to learn to behave.

But, it wasn’t working. I was failing. He was failing.

That phrase just kept playing through my mind and I started to think. I started to question how much I was expecting him to move towards me. I sought out more autistic bloggers. I listened. I learned. Even when the voices were angry. Even when the message was hard to hear.

I started paying attention to the ways I could move towards him. Instead of just seeing his behaviors as an unreasonable attack on me because of his autism I told myself this was the best way he could communicate with me in that moment. I did my best to listen. I did my best to learn. Even when the message was hard to hear. Even when the message was violent.

For once I strove to meet him. Just where he was. Just as he was. I let go of the fight and I accepted and embraced autism.

Nothing has ever felt better.

I hear it said a lot that autism acceptance and autism positivity are just spreading hearts and flowers and ignoring the hard realities of autism. I’m not here to tell you that my decision to embrace autism is what turned things around for Charlie. It was one part of a much more complex equation.

What I will say is that it is what changed me. It is what brought me peace. It is what made me stop caring what strangers in the supermarket thought or mourning for the life I thought my son wasn’t having.

I don’t think of acceptance as a destination or a permanent state I have reached. It is a path I strive to follow everyday and I believe I still have much to learn on this road.

And yes, there are still moments that I wish my son wasn’t autistic. Just like there are moments when I wish I didn’t have kids at all. Just like there are moments when I wish I wasn’t gay or a woman or that I had more money or any number of things that really just mean my life in that moment feels a little too hard or overwhelming or scary for a particular reason and I want there to be something that makes it easier.

I don’t beat myself up over these thoughts. I take them for what they are; a reminder to step back, take a break, walk away, ask for help.

So, today I can tell you I am grateful for every premature gray hair on my head and wrinkle on my face that I acquired during last year’s stress.

Because it all brought me to this place. A place where I am ready when things get hard again, as I know they will, at some point, in some way.

This time I will be ready. Maybe not yet with all the tools he will need for the situation at hand. But, with the tools I will need.

I will accept.

I will listen.

I will be sure I am moving towards him as much as he is being asked to move towards me.

----

A version of this post previously appeared at outrunningthestorm.wordpress.com

TPGA Acquisitions Editor: Rob Gross

Monday, September 17, 2012

An AAC App and Autism Success Story

AAC, or Augmentative and Alternative Communication, provides many autistic people with communication options. We keep hearing how some of those same people are discovering new tablet- or app-based AAC options that even better suit their needs. One such person is Nathan, whose mother Lisa Valerio describes him as, "a 9 year old boy with autism who loves playing outside, swimming, jumping on the trampoline, painting, and putting together puzzles. He uses his the LAMP for Words app now to communicate."

Can you tell us a little bit about how you came to be an AAC family?

My son Nathan has autism and verbal apraxia, and after many years of struggling to communicate (and intense SLP services) we determined he needed an AAC device -- and became an AAC family.

What kind of AAC technology has Nathan been using? How did you choose it?

When Nathan was younger we started with PECS and then moved him to the Go Talk 20.  Then, seeing how he gravitated to a touch screen monitor  -- I knew that a touch screen device was going to be the answer to his communication. I worked closely with Nathan's school SLP and we hired an outside AAC specialist to test him on various devices.

Through this process Nathan actually chose his device, because within minutes of  testing him on the Vantage Lite he was asking for cookie, chips, bubbles, balloons, outside, etc. (all things he really wanted).  He was also tested various other devices and he did not find them intuitive and/or figure out how to immediately communicate with them.

Can you give us examples of how using AAC makes a difference for your son? Does he communicate differently with it than without it?

It has significantly decreased frustration and meltdowns -- he now has a voice to tell us what he wants and needs. He has some very basic sign language and word approximations that he will use to try to communicate if his device is out of battery or is not in close proximity.  But, only a few of us understand his signs and word approximations, so without his device he now truly is without an effective way of communicating.

Nathan using his "Talker"
Does Nathan want to comment about AAC and doors it opens for him? 

I asked him if he like his Talker and he said "yes."

It has opened the doors to a world of learning and communicating.  He is now starting to answer basic questions with it and to make social gestures. However, he proactively uses it to express his wants and needs. He loves to tell me, "Mama, I need a break" and "Go to McDonalds Eat French Fries."

Has Nathan used other AAC apps before?

Yes, we tested the Proloque2Go and Nathan did not find it intuitive or easy to communicate.  Also, once we got the Vantage Lite I did not want to introduce two communication devices -- I wanted him to work on mastering one and not get confused.

Why are you so excited about this specific AAC app? Have you used it yet?

I am excited about Vantage Lite's LAMP for Words app for various reasons:
  • It is now more affordable and so many more people will be able to communicate -- it is a $7000-plus technology system on an iPad for $299. Hopefully through funding sources this app (and iPads) can become more available to underserved populations.
  • The motor planning and language on this device have been tested for over 18 years, and work effectively with children with autism.
  • Selfishly, we now have a back up should Nathan's device break down or get left at school.
  • Nathan can have a "Voice" 24/7.
  • It will be so easy to carry around an iPad with this app on it --  so light weight and easy to stick in a backpack or purse -- so perfect for traveling, doing errands, going out to eat, taking to a friend's house, etc.
Also, I have downloaded the app and created some linked pages to mirror Nathan's Vantage Lite Device. The pages (links) are  friends, family, special activities, favorite foods, etc. Making the edits to the app was twice as fast as on the Vantage Lite and very user-friendly. I can now take a picture on his iPad of a new food item or toy and immediately upload it.

Nathan was not fazed to see his communication system on an iPad.  When I showed it to him, he pressed "Watch TV Wiggles" -- clearly, he saw it as his communication device.

When we posted about the LAMP Words for Life app on our Facebook page, people wanted to know how this app differed from currently available AAC apps, if it was better. What's your opinion?

In my opinion this app can not compare to anything else on the market.  PRC has been the leader in AAC for 45 years.  When the iPad first came out the technology could not meet the needs of what this app needed to do. However, with the advancements in the iPad technology, PRC was now able to bring the technology into an app.

The other comment we received is that $299 is a lot of money for an app. Why is this app worth the price tag?

As noted above, it is a $7k device in an app at $299. The technology behind this app has been researched for 18 years and utilizes the LAMP approach and the Unity® language system: http://www.aacandautism.com/lamp.

----

Do you, your child, your student, or your client use AAC? What system best suits your (or their) needs? What are your favorite AAC apps? 

Friday, September 14, 2012

Passing

Kate

It happens, not every day, but often. You’re at a social gathering, feeling good, feeling alive, and this conversation leads to that leads to “Oh yeah, I’m autistic. I have Asperger’s syndrome.” And the almost-inevitable response.

“Really?  You don’t look/seem/come off as autistic.”

I can never quite decide if this is supposed to be a compliment or not.  To take it as a compliment would mean accepting the premise that to be autistic is something bad, which it’s not,  that my social skills are good enough to ‘pass’ for neuro-typical in public and that is a good thing, since people have so many ‘bad’ stereotypes of what autism is and might misjudge me.

Which is weird, because I’m pretty sure that anyone who makes a statement that I don’t look autistic doesn’t know me well, and doesn’t know autism well.

Here’s the thing.  I can ‘pass’ for neuro-typical in a public setting for one reason only: training. Years of social skills therapy and intense independent study of my particular culture means that, by exerting enormous efforts, I can make eye contact and small talk. I can resist the urge to stim using whatever is at hand. I can remember (sometimes) to not interrupt, to steer the conversation away from myself, to laugh politely even when I don’t get the joke.

I was born into this culture, but not of it.  My brain is wired for a different language, for a more straightforward world where people say what they mean and mean what they say. Twenty-eight years of being forced into the neurotypical box means that, painful as it is, I acknowledge that life is easier for others when I follow typical social rules. It might hurt to be inside the box, but life is more smooth, and I get places faster, more efficiently.

But the box isn’t me, and far more often that I’d like, I make a mistake, say something wrong, react differently than people expect, and people are surprised, offended, upset. I apologize, even when I don’t know exactly what I did, and berate myself endlessly for the mistake, vow to stay more tightly bound than ever.

“You don’t seem autistic.”
            
What does it mean to seem autistic?  Does it mean I sit in the corner, flapping my hands, or run around wildly, screeching?  Is there anything wrong with people who do these things?  If I were to invite you into my home, expose my secret routines, rituals, and all-encompassing obsessions, would I seem more autistic then?  If you knew me as a child who couldn’t make eye contact or hold a conversation, who had loud, noisy meltdowns where I screamed and cried, would you think that I had somehow learned to put the autism away, to separate it from myself and not be autistic?

Ironically, the situations where I seem the least autistic to people are undoubtedly ones where the majority of people there know and accept me for whom I am, autism and all.  At a church gathering where I know no one will get upset if stim a bit, where people will answer my questions honestly, help me when I need it -- there, I need less help because the warmth and love surrounding me helps to hold me up.  It is when I am forced, all by myself, to conform to a situation that I do not understand, that my quirks and mannerisms become all too apparent and too autistic.

So if I don’t seem autistic to you, I guess that’s good, because it means that I am somewhat at ease in the situation. But do not fault me when my autism ‘slips out.’ Do not get mad at me when I do not conform to your social or cultural mores. Passing for neurotypical and being in any sort of social situation requires enormous effort, so I appreciate your recognition of this fact.  But next time, instead of telling people that they don’t seem autistic, why not acknowledge that autism is different for everyone?

Wednesday, September 12, 2012

From Autism Stress to Autism Acceptance

Brenda Rothman
mamabegood.blogspot.com

I had a lovely conversation with another mom of an autistic child, face to face, sipping coffee, while we talked about hot-button issues in the autism community. Without losing respect or good will for each other. Maybe it was the coffee. It was good coffee.

We debated "cure:" why some parents want it and why autistic persons are offended by it. She said the desire for a cure would never disappear for some autism parents because their children are more severely challenged. She told me the story of a single mom with an adult autistic son, who was non-verbal, had restricted motor abilities, was self-injurious, and would never live independently.  She related how difficult it is for the single mom to handle her grown child, how distraught she is about how she would care for her child as she aged, who would care for her child after she was gone.  She asked, "Wouldn't you want a cure in that situation?"

Her argument for a cure was framed like this: Some autistic children are more severe. Those parents need relief from that situation. Therefore, let's find a cure.

But the logic that leapt out at me was this.  A cure won't help that single mom.  It won't help her adult son. But they both could use relief from the stress of challenges.

Stress is like wildfire. If controlled, it can bring rich soil and new growth.  If it runs wild, it can ravage, destroying life and disrupting generations.

How do we go from wildfire to new growth?  How do we bring happiness out of stress?  For families with an autistic child, for an autistic adult, stress can feel insurmountable, a wildfire out of control.  But we can apply some principles to go from distress to peace, to realize the full potential of happiness in our lives.

1. The amount of stress we feel is unrelated to the severity of our child's challenges.

A psychologist told me that, in all her years of seeing families, she found that some parents were more stressed than others.  However, she noted, the level of stress in the parent did not correlate to the severity of the child's disabilities.  Instead, the stress level was solely based on the parent.

That means that, in large part, our stress response is up to us.  We could be a fashion stylist with a fabulous penthouse, a doting spouse, oodles of shoes, assistants, and cars, and a child with mild challenges and still feel our life was crisis, chaos, and miserable. Or we could be a foster parent of several children with severe disabilities, little income, and be happy.  No matter how severe his problems, the foster parent can choose happiness or stress.  So can the fashion stylist.  She just hasn't learned yet how to respond to the wildfires of stress.

2. Our acceptance level of our child's challenges affects our stress level.

Lower levels of acceptance result in higher stress levels.  Stress, any stress, is always caused by struggling against challenges instead of meeting them with equanimity.  If we can respond with a calm balance instead of a desperate struggle to the wildfires, we can reduce our stress.  When we are presented with an autism challenge and we meet it with peaceful equanimity, we can reduce our stress.

3. Acceptance of our children is not dependent on the severity of our child's challenges.

A child who is non-verbal, not potty trained, or self-injurious may present more challenges to a parent, but that parent can still choose to meet challenges with acceptance.  It is not up to the severity of the circumstances.  It's not dependent on the child.  The ability of some parents to joyfully accept their children is not because their child is less severe, less challenging than another child.  It is up to the parent's ability.  Joyful acceptance is about ourselves, not dependent on our child's behavior or development.

Joyful acceptance of our children does not mean not helping our children.  Acceptance does not limit our ability to search for and find services, accommodations, and access for them.  Wildfire stress shuts down our thoughts, our paths to respond.  But we can use the rich soil of acceptance to plant seeds of creativity and problem-solving. 
  
4. Acceptance is not a one-time deal and it's done.

It is an ongoing practice, an active effort to stay mindful to challenges and to our responses.  When we feel higher stress, it's a signal that our minds are struggling against challenges again.  It's natural, just like wildfires are natural, for us to respond with confusion and fear.   It takes practice to respond to stress with acceptance.

5. Our child's difficulties will escalate in a stressful environment. 

Children are remarkably adept at picking up on stress, just like wildfires spread very easily, jumping from parent to child.  Even when children don't understand the source of stress, they feel it.  Even, or I would say especially, when that child is autistic.  Autistic children may respond differently to stress, but they do respond.  Our children have many causes of stress in their lives, but whenever we can practice responding mindfully and reducing our own stress levels, we'll automatically reduce our children's.
  
6. Pinning your hopes on unknown, theoretical solutions, like a cure, does not reduce stress.

Cure does mean not a change in our children's behaviors, temperaments, or stress level.  Cure does not mean a reduction in stress for parents.  Respite for parents and housing, services, access to public transportation, and employment for our children means a reduction in challenges. Cure does not mean a reduction in stress for anyone, except possibly future parents who don't want autistic children because they think it's too stressful for themselves or for their future possibly autistic children.

7. Ruminating about future possible unknowns results in higher stress levels.

Whether we're talking about future potential parents worrying about having autistic children or current actual parents of autistic children, worrying about unknowns is a spark in a dry forest.  It causes stress wildfires.  To reduce stress, we must remain focused on the present, on meeting the challenge of the next twenty minutes, or if you have the equanimity, the challenges of today or this month.  We must remind ourselves not to worry about the challenges of tomorrow, but keep our mind on how we will greet this challenge in front of us right now: with a stress wildfire or the rich soil of acceptance.

8. Having an autistic child or being autistic does not result in an unhappy life.

Even when parents and autistic persons experience high stress levels, they can still lead complete, fulfilling, happy lives.  The number of challenges does not eliminate the potential for happiness.

9.  Every life has the potential for great stress or for great happiness.

Even lives that society does not value, such as those with greater interdependence needs, like language, self-care, or income assistance, have the potential for great happiness.  It's almost an automatic response of society to express pity for lives that aren't valued.  But there are autistic adults who are non-verbal or who require assistance who will tell you that their lives are valuable, worthwhile, adventurous, exciting, and, indeed, happy. 

10. Practice compassion to reduce stress.  

When you feel stressed, treat yourself with compassion.  Breathe long breaths.  In your mind, talk gently to yourself, as if you yourself were still a child.  Say your name to yourself.  Imagine hugging the child that was you, the person that is you.   See yourself being embraced, valued for who you are, when you are most afraid.

Practice compassion to reduce your child's stress.  When your child experiences challenging issues and behaviors, use that same imagery in your mind while you are calming your child.  Breathe long breaths, talk gently, say their name, imagine that small child inside who is scared, imagine telling them - at that moment when they are having the most challenges - that they are the best thing that's happened to you.  It's not just meaningless affirmations.  It calms the fear and confusion your mind is feeling in response to a wildfire.  Greeting your most difficult challenges calmly, embracing them even, stops the stress from burning out of control.

Conclusion

Stress can be a wildfire that consumes us.  It's a self-fulfilling prophecy that has no relation to the size of our problems.  Stress grows if we feed it worry and diminishes if we feed it acceptance and compassion.  While challenges are a part of raising an autistic child or being an autistic adult, wildfire stress does not have to accompany it.  If we practice greeting challenges mindfully, if we can welcome challenges with an accepting, compassionate mind, we can realize the full potential of happiness in our lives and in autistic lives.

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A version of this essay was previously published at
mamabegood.blogspot.com.

Monday, September 10, 2012

A Letter To The Staff at My Daughter’s School

Ariane Zurcher
emmashopebook.com

All examples are misunderstandings or things that have been said and done to Emma by someone within a school setting.

My daughter, Emma will be at your school this year. A few days ago, Emma told me she was “scared to go to new school.” Emma loved her teachers and friends from her old school. So I want to introduce you to her. I cannot speak for Emma, I cannot know if everything I write here is completely accurate, but these are things I have learned over the years, things that are specific to Emma and that may be helpful, at least that is my hope.

Sometimes Emma does not look at you when you are speaking to her, but that doesn’t mean she doesn’t hear you. Her hearing is excellent. She may not know how to process what you’ve said or she may not know what is expected of her. Often if you ask Emma a question, especially if it’s a question she knows the answer to she either won’t answer or will say something nonsensical because she isn’t sure what’s expected of her or why the question has been asked. Sometimes people get nervous and don’t know what to say, so they’ll ask, “Oh Emma, that’s a pretty dress. What are you wearing?” or “What color is that?” These are questions that aren’t being asked for any real purpose or they are testing questions. Typically these are the kinds of questions Emma will not answer.

Change is difficult for all of us and Emma is no exception. Having a written or picture schedule for the day and week will reduce her anxiety. Like everyone, Emma really appreciates having a say in what happens throughout the day. Whenever appropriate allowing her to set a timer for a one, two or five-minute warning before a change in activity will go a long way in helping her do what she needs to prepare herself. Usually Emma will go along with any change if she’s given sufficient warning.

General Disposition:
Emma loves people. She is gregarious. Her fall back position is one of happiness. She is also very sensitive. She can tell if someone is upset, stressed or angry, and can become easily overwhelmed by those feelings.

Particularly Good at:
Emma is terrific at leading others. She can be extremely persuasive and is a great negotiator. Her negotiating skills are wonderful for math and science and her leadership skills are wonderful motivators.

Loves:
Emma loves music, dancing, being on stage in front of an audience. Give Em a microphone and she will sing and dance. She loves “talent shows.” She loves any game involving running, swimming, holding her breath under water, laughing and being silly. She loves playing versions of “Duck, duck, goose” or as Emma would say, “Raincoat, raincoat, umbrella!” Musical chairs is another favorite, dance parties, hide and seek, dressing up, bouncing, swinging and going to any playground. Emma is very athletic and very girly. She likes cooking and while she won’t eat most of what she cooks, unless they’re pancakes, she will enjoy the opportunity to cook.

Does Not Like:
Emma gets upset if she is told not to do something she has just done. Example: “You cannot shout!” after she has just shouted is difficult for her. Obviously she CAN shout, she just did, with you right there watching. Telling her she “can’t” is not true and it’s confusing. Instead say, “You mustn’t shout.” Then in a voice that models what you’d like you can say, “Here is how you can speak instead.” By doing that, you are helping to give her other choices. If she is not allowed to do something, be sure to tell her what she can do as an alternative.

Academics:
Emma is fairly new to all academics. Within the past year she has learned to form the letters of the alphabet and is now reading, writing and typing at a 1st – 2nd grade level, likewise with math. Emma loves the Hubble Imax movie and her favorite museum is the American Natural History Museum. She is showing interest in learning about our world, the ocean, the moon, other planets and the universe. She told me last night that she doesn’t want to be an astronaut though, she said she wanted to be a “singer on the stage!”

Needs Extra Help:
Emma resists academics. They are hard for her and she becomes upset when she makes a mistake. She doesn’t like getting anything wrong. But if you help her succeed, she will flourish. If she is reading and doesn’t know a word, give it 15 seconds or so to see if she can work it out on her own, (don’t say “sound it out” or “try again” because she didn’t learn to read phonetically and while she is able to sound some words out on her own, it won’t help her with all those exceptions like 'limb' and 'thought.') Emma has a strong desire to learn and an even stronger desire to do things independently. With your help, she can and will succeed.

Frustration and Signs to Watch for:
Emma gets a look of panic on her face. She may begin breathing with short sharp intakes and she will often talk to herself in a high-pitched questioning voice laced with anxiety. When Emma is overwhelmed she may shut down and withdraw. She may begin scripting, using set phrases she’s heard. Those scripts may be in context with what’s going on or their connection may not be clear to you, but that doesn’t mean there is no connection, it just means you don’t understand or know what it is. Emma often has trouble processing her feelings and the feelings of others. Sometimes she needs help identifying those feelings, just as we all do. Sometimes she will start repeating things other teachers have said to her in the past in a scolding tone, such as, “No Emma! You may not ________. If you _________ we will take __________ away!” When Emma is overwhelmed she has to rely on her scripts as all other words have left her. Try to listen even if the words seem meaningless, she is trying to communicate her feelings of distress to you. Sometimes she might say, “You have to ask for help!” This is what she says when she needs help, but sadly this can confuse those who do not know Emma well. She might also say, “Do you want to go swimming?” Which means she really, really wants to go swimming. If you show her on the schedule when she’ll be able to go she will usually calm down.

It's Too Late! Now What?
This is not the time to engage in a power struggle. Emma is not trying to manipulate you or upset anyone. She is simply expressing her frustration in the only way she knows to. Sometimes if she’s very upset she will bite herself or punch herself, usually on the hand or arm, sometimes if things are very bad, she will punch herself in the face. Do not exacerbate this challenging time by raising your voice or telling her “You cannot hit!” or “You cannot bite!” or even “We don’t bite.” (See Does Not Like paragraph above) Restraining her in an attempt to stop her will not prove helpful either. Emma bites or hits herself because the feelings of frustration are overwhelming her. The pain she causes herself by biting or hitting is within her control and is therefore preferable. It things have escalated to the point where Emma is hurting herself, everyone must try to understand what has happened before things became this derailed and try to prevent them. Sometimes it isn’t possible, but Emma is trying to cope as best she can. When she is calmer you can work on helping her find alternate ways to cope.

What helps you when you feel overwhelmed? What things do you do when you feel anxious, scared or upset and no longer feel you’re able to function? Maybe the things that work for you will help Emma too. Remember, be patient. Showing Emma once or twice will not mean she’s learned, she will likely need to be shown numerous times. Often there is a sensorial component to her upset. She is overwhelmed with feelings or a sensation or too many sensations. She may be tired or hungry, too hot, cold or thirsty. Sometimes a sensory break will do wonders to restore her equilibrium.

Strategies That Work Well:
Make it into a game! Music can be incorporated into just about any activity and can change anything. High affect and silliness can make something that feels difficult seem fun!

Humor:
Emma loves anything silly and ridiculous. Silly faces, silly dances, playful interactions, games! Emma loves to laugh. She loves to make up word games. She enjoys taking a word like “uncle” and changing it to “Jungle.” She will happily tell you that she has a “Jungle Andy and a Jungle Victor.” If you then respond by saying in a loud playful voice, “Jungle Andy? You have a Jungle Andy?” she will find this hysterically funny. Play along, Emma’s humor is infectious!

Things That Have a Tendency to Backfire?
If you say, “You have to do __________. If you don’t, I’m going to take __________ away” will make her upset and anxious. She will have a hard time concentrating because she will worry about having something she wants taken from her. Instead say, “You can ___________, but first you need to ____________.” That way Emma can concentrate on having/doing something she loves as opposed to taking something away.

Emma's String
Emma has a string that she loves. Please do not take away her string or use it as a form of punishment. Her string helps her focus and makes her feel safe. If you take it away or threaten to she will become completely overwhelmed. Sometimes when she is writing or typing and needs both hands to do so, you can ask her to set her string near her or in her lap. If you allow her to control where she puts her string she will feel safe enough to concentrate and do her work. Also (a little secret) if you get some string or ribbon and copy her movements in a playful way, you might see and feel for yourself how wonderful it can be and Emma will be delighted that someone wanted to interact with her in a way that she loves.

Food:
Emma does not have any allergies or foods she cannot eat. However she likes to eat the same food everyday. Some food looks, tastes and smells strange to Emma. Please do not make her eat anything she isn’t interested in eating. Please do not tell her she must finish something in order to have something else. If Emma shows interest in something someone else has or is eating and it’s appropriate, do allow her to smell, lick, taste or eat it if she wants to. And please do tell me so that I can find whatever it is and offer it to her at home too. We will pack Emma’s lunch every day.

One Last Thing:
Assume competence and respect Emma’s process. Emma can and does learn. She may take longer or less time than another child, but she will learn. She is extremely independent. Show her, help her, let her.

I am available to talk, discuss and strategize. I don’t have all the answers, but I may have some. Please let me help in any way that I can. There is no detail about Emma’s day that is too small. Do not hesitate in emailing ________ or calling ________.

Thank you so much,

Ariane


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Previously published at emmashopebook.com.

Friday, September 7, 2012

Autistic Lives: Not Less Valuable

Shannon Des Roches Rosa
www.squidalicious.com
www.blogher.com

Two days ago, Patricia Corby was ordered to stand trial for the murder of her four-year-old autistic son, Daniel Corby. During testimony, the local District Attorney's Office Investigator said that Corby "...felt like she had no life. She wanted Daniel to be normal."

This seems like a good time to revisit the post below, which I wrote for BlogHer.com after another Autistic, George Hodgins, was murdered by his mother Elizabeth -- just three weeks before Daniel died.

----

Obviously, I'm feeling angry and confrontational. Explosively so. With good reason: George Hodgins, a young autistic man from my son's school, was murdered by his mother Elizabeth (who then committed suicide) earlier this month. Mainstream media reports have focused almost exclusively on how difficult life was for his mother, framing parents killing disabled children as an understandable tragedy, while parents killing typical children is considered a preventable tragedy. And I am telling you right now, it doesn't matter how difficult parenting is, a parent killing their child is never justifiable. Never. Ever. Not for any reason.

Because this was written for a parenting column, I need to be clear: I do not lack empathy for Elizabeth Hogdins. How could I? I am her: by all accounts, George was the 22-year-old version of my son Leo. My first reaction to George's murder was gut-busting sobs -- an instinctive reaction to knowing it is only through the caprice of fate that George was Elizabeth's son, and Leo is mine. I'm crying again as I type this, because George was one of our kids.

But I also know three really important things:
  1. George is the victim. He is blameless. His mother's stress and nervous breakdown and suicide were not his fault, and her actions cannot be condoned. No child should ever experience a parent pulling a gun on them.
  2. George had the same right to live out a full happy life as any mother's child. His autism did not make him imperfect, unworthy, or less of a person than a neurotypical child.
  3. Elizabeth and I signed up for this parenting gig, we chose to be mothers -- and that choice came with no warranty, and no guarantees.
That third point is something we don't talk about enough as a culture, don't stress enough: Parenting isn't a rose garden, it's a lottery. You get the children you get. And then, because again it is your choice to parent, you are responsible for not just accepting, not just loving, but championing those children. Wholly.

Leo Hammock Close UpMy parenting reality is different from my daydream version, that's for certain. I anticipated the laughs and love and snuggles, sleepless nights and too much driving to appointments and activities. But I never really entertained the possibility that my lovely, loving Leo, like George, would also have intense autism.

Yet I should have been ready for an autistic child as a possibility. Why wasn't I? Why did I freak out when my son was diagnosed with autism, believe people who told me he was "broken," embark on a crusade to "cure" a child who needs significant support but who is not ill? Because we live in a culture that conditions us to devalue, fear, and dismiss children like George and Leo, that sees them not as people with rights but as problems -- ideally, someone else's.

That attitude needs to change. Our society needs to more honest about parenting realities, needs to better prepare parents-to-be how to accept, support, and respect children with autism and other disabilities. The families and children who find themselves on the special needs path do not deserve to be treated as pity pariahs, as cautionary examples of bad luck, as saints to be patronized.

Instead, we should better educate parents-to-be -- and then be ready to support those  who need it. Our conditioning, our reaction to parents of children with new special needs diagnoses should be, "We are your community, and we're here for you. Parts of this may be really hard, but please know that we accept you and your children, and you will never be alone. Here are the parents who know what it's like to be you. Here are the adults who used to be your children, and who are willing to talk to you and help you understand your children better. Here is your local support group. Here are your internet communities. Here are the resources you'll need to help you choose and secure best options at each stage. Together, we'll support you -- so you can focus on loving your child, on being their parent, on helping them reach their potential."

What are some actions we can take to further a more honest, accepting, and supportive society?
  • Be out in the community to the best of your and your child's tolerance, help make visibility of and participation by people and children with disabilities commonplace.
  • Be aware that people like George and Leo cannot always speak up when family members show signs of instability. Befriend people with autism, spend time with them, look out for them.
  • And speak out loudly and lovingly about accepting our children for who they are, as did Brenda Rothman of Mama Be Good:
"Disability opened doors for me and my son because it opened my mind. I saw choices where I'd seen none before. That other path, that typical path, was set in stone: best schools, best extracurricular, best arts program, best courses, best grades, best university, best job. I couldn't see that all these 'bests' were my anxiety, my trying to control the chaos of life, the ways I was narrowing the experiences life can offer because I was too afraid."
I want life to be easier for Leo. And it can be -- if as a society we refuse to view my son and people with disabilities as others, as not-people, as those people. Leo is one of us, part of society. He is a handsome, silly California boy. Treating him and his autism like a lightning bolt of bad luck, and autism parents as though we are fighting a poignant, tragic battle helps no one -- certainly not people like George Hodgins.

And I don't want what we're conditioned to consider a "perfect" child, or an easy child. I want my giddy, sweet, sneaky Leo. I want his infuriating, clever, exuberant sisters. I want the entire world to stand behind all three of my kids, never questioning their dignity as human beings.

I especially want my children alive, and in my arms.

---
A MacWorld video about Leo, in which our home life, parenting decisions, and the Perfect Child myth are discussed:

Wednesday, September 5, 2012

The Magic of Inclusive Musical Theater

Matt Carey

Imagine the most magical theater experience you've ever had. Imagine watching a beautiful girl stand up in the audience and start swaying to the music, only to move to the aisles where she pulled other kids out of their seats to dance with her. Imagine kids getting up and moving around. Some banging on empty seats. Some leaving for a while only to be welcomed to come back in when they are ready. Imagine audience members' lights glowing with the light of some technological device. Only instead of it being someone trying to surreptitiously read his email on a smartphone, it's a nonverbal kid using an AAC device to type out, "more music, less talking!" Imagine people leaving at the intermission, not because they don't like the show, but because they loved it and half a show was plenty. Imagine most people staying, even though it was a school night and way past many kids' bed times.

Imagine the cast applauding the audience in the end.

Imagine kids beaming as they leave, and parents grinning from ear to ear. Not stressed after trying to keep their kids in their seats for two hours, but happy that their kids were able to move around.

A couple of years ago my wife got a great idea. She gets great ideas all the time, but this was one she was in a good position to put into action: put on a musical theater performance where disabled people, specifically people with sensory issues, could attend. She approached a local community theater company and they not only accepted the idea, they thought it was great!

And they were right. It was a great idea. Since our local theater company started working on this project Broadway has done "sensory friendly" performances of The Lion King and Mary Poppins. The basic idea is straightforward enough that I hope many more theater companies (both professional and community) start doing this. And, not surprisingly, there are lessons to be learned that you can only do by trying:
  • Yes, don't make the auditorium as dark as usual.
  • Turn down the sound level.
  • Weekend matinees are better than night time shows (especially on school nights!)
  • Don't try to pack the house. Leave room for people to move.
  • If you can, only sell out the aisle seats.
Tell the cast and crew that there will be people moving around, making noises, flapping, leaving and coming back. They (the cast and crew) may be anxious about all this until they see the beauty of kids bouncing to the music, dancing in the aisles, tapping on seats...until they see that this is an audience that just loves the experience in a way that your average, experienced theater goer doesn't.

My parents lived in Manhattan in the 1950's. My mother used to tell stories of going to see Broadway shows in one of the heydays of the genre. I can't count how many times I heard about her seeing The Music Man with Robert Preston on stage. I got to see Chitty Chitty Bang Bang opening week in the West End of London.

And none of that comes close to seeing a small group of kids getting to enjoy musical theater in a way that was accommodating to their needs.

Monday, September 3, 2012

Writing About Autism and Science? 10 Things to Remember

Emily Willingham
www.emilywillinghamphd.com

Word on the street -- well, really on a blog from a researcher -- is that the writer of the autism/inflammation New York Times op-ed, Moises Velasquez-Manoff, is working on an "annotated" version of the article that will "back up" his claims." Some annotation would have been useful to begin with; as I noted in my analysis of that op-ed, in many instances, discerning the origin of his information was difficult or impossible. I understand that something that appears originally in print can't have hyperlinks to appropriate references, but the writer certainly could have beefed up in-text citations (author names, journal publications), at least avoiding the criticism that the piece was unsatisfactorily sourced.

Sourcing was not the only issue with that piece, however. Velasquez-Manoff has a book to sell, and that book, like many popular science books, has a narrative that may not necessarily stand up to precise scientific scrutiny, if the NYT piece was an indication (people will be able to determine for themselves on September 4). Indeed, a criticism leveled at many such books is this lack of care in qualifying scientific results and interpreting them with caution and caveats. It's an understandable instinct. Think about the good storytellers you know. How much care do they exercise in avoiding hyperbole or sins of co-mission and omission in telling a "good" story? Some writers of popular science books commit these sins to tell a good story, too. Others do not, yet their work is popular and well received. It is possible to be accurate and cautious and still tell a rousing tale.

The problem with writing about science, though, is that science isn't just a story. It's about facts and open questions, and it's almost never defensible to write as though a door has closed, a box has been checked, or a mystery has been completely solved. We owe it to readers to avoid simplification to the point of a sin of omission and to avoid overinterpreting to the point of hyperbole.

When it comes to writing stories about health and medicine, the stakes climb. With these stories, we're not writing only about scientific findings. What we write is also about people. Many writers seek a narrative hook, a personal story that frames the rest of the piece. I can't even count the number of autism-related stories that open with a (very real) tale of woe featuring an overwhelmed or traumatized parent talking about the grief and horror of having a child with autism. This tactic catches the reader -- and happens to be one that the largest autism nonprofit in the United States also employs -- successfully tugging at heart and purse strings and attracting mouse clicks. But this tugging and this narrative approach are so frequent in such stories as to be near-cliches, and they do few favors for the autistic people these stories are really about.

The presentation of autism as a monster to battle or a stalker out to destroy your life has repercussions that some autistic adults argue go beyond an unfair and painful characterization of what they believe is Who They Are. News stories about autistic people whose parents and caregivers have murdered them often carry a clear attitude of "autism is so hard, no wonder they got killed." When every news story you read describes autism as a horrific affliction and all of those with it as suffering, when mainstream news organizations persist in focusing only on what parents have to say about autism rather than talking to autistic people, when stories focus on preventing autism -- with worms, no less -- autistic people, real, living, breathing people, feel pain and get angry and argue that even if they are nonspeaking, they can be perfectly capable of communicating for themselves.

If you are someone who writes about health and medicine and who covers a story related to neurobiology -- particularly autism -- please consider the following 10 suggestions. They might help you avoid the pitfalls of hyperbole and poor interpretation and causing pain to autistic people.
  1. Interview an autistic person for insight whenever possible. If you need suggestions for leads, feel free to contact me [or any TPGA editor]. If you were writing a piece about any other human condition, would you talk only to parents or relatives of people with that condition if the people who have it could communicate for themselves?
  2. If a researcher claims to have "solved" autism, please exercise healthy skepticism and follow up with someone who doesn't have a dog in the hunt. Of all of the neurobiological conditions, autism may be the most variable. It's extremely unlikely that any one research path or group or hypothesis will explain all autism. Don't ride that wave with them.

  3. Don't generalize. Stick with what the findings say, not what the discussion or the conclusions or the authors or the news releases say. Have an ear for when someone is overgeneralizing. Example generalization: "X causes autism." What causes autism has not been established, and the causes themselves -- and how they work -- are likely going to form a very long list. We are still very early in formulating that list, much less what the items on that list do.
  4. Don't mistake correlation for cause. When a study reports a "link," that term usually means a mathematical relationship: When X was more frequent, autism was more frequent." That doesn't mean that X causes autism. It doesn't even mean that X has anything to do with autism.
  5. Don't overstate the meaning of risk. Risk is a scary word, although we all live with the 100% risk of dying someday, regardless of what other risks we face. When a study result refers to "increased risk," look at the numbers. If they say that the presence of factor X was associated with a relative risk of 2.1, for example, then the population with factor X had twice the autism compared to the group without that factor. If the average risk of having a child with autism in the absence of that factor is 1%, then this particular factor was associated with about a 2% risk. And relative risk applies only for that study -- it does not tell you what the actual risk is.
  6. Keep in mind that even these links don't imply a true causal relationship. They're just math associations. A famous example of how these relationships can end up being misinterpreted is the protein CRP and heart disease. Because of a mathematical association between the presence of this protein and the occurrence of heart disease, researchers thought for a pretty long time that CRP might cause heart disease, and drugs were even targeted to lowering its levels. Turns out, it doesn't cause heart disease, so the drugs were no use. Instead, it's either a side effect of heart disease (reverse causality) or just higher because of some indirect influence. Now, take any recent X factor you've heard is "linked" to or "causes" autism and substitute it and autism into the above story to understand how unpromising correlation can really be.
  7. Be aware of how you write about autism and of the fact that autistic people may read what you're writing. How you describe autism is, for those readers, describing themselves, their very being. Please try to avoid lapsing into the parlance of affliction, suffering, disease, desperation for a cure, war, and despair or comparisons of "low" and "high" function. A good science geek knows that function is often a matter of environment, not a constant measure. Although some autism parents may disagree, one key to making this world a better place for autistic people is for society not to see or treat them as unhearing, nonverbal, illiterate rocking obsessives who don't understand what people are saying about them. Unlike neurodegenerative or fatal diseases, autism is not universally perceived or lived as a negative condition, and it's important to remember that.
  8. If the study in question is about mice, never talk about how the results will lead to a therapy or a cure or write about the mice as though somehow, they are just tiny humans with tails. Mice have misled us before. They are only a way to model what might happen in a mammal sorta kinda related to us. They are not Us, otherwise we'd live in tiny, crowded places, having 10 children at once and ignoring them when they grow fur, and this autism thing wouldn't be an issue.
  9. Don't use phrases like "gene that causes autism" or "gene that is linked to autism" or "faulty gene" or "defective gene." What you really want to say is "gene variant" or "version of the gene." There isn't an "autism" gene; there are gene changes that might be linked to autism.
  10. Also avoid referencing "environmental factors" without providing some specific examples. Those examples should not be "chemicals" or "toxins," which are vague, meaningless, and stupid. Established environmental risk factors for autism include parental age and extreme prematurity. Try those, but handle with care.
Finally, I know deadlines are tight, but never take a paper author's interpretation as The Final Word. Try to find someone not connected with the work and get their comment. Journalism 101, I know, but it's surprising how often articles do not include this kind of balance. By balance, I don't mean "gives the other side." I just mean, "possibly modulates enthusiastic author's overinterpretation or overselling of results and their significance."

Which is where we got started with this most recent brouhaha in the first place.

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This essay was previously published at www.emilywillinghamphd.com.