April 2nd is World Autism Awareness Day. It was interesting to go back and read my reflection last year about this day, especially since it came just a couple of weeks after we got the J-Man’s diagnosis. Looking back, my awareness of the public landscape of autism for parents was pretty spot on, which honestly depresses me somewhat.
However, what I was barely aware of at the time was the overwhelmingly supportive community of parents, teachers, professionals, and advocates and all the wonderful children we’ve met in our journey since. Admittedly, we live only in our little corner of the spectrum, venturing only on occasion outside of our Pre-Kindergarten world. But we know there’s a whole universe of wonder out there that we haven’t yet explored.
So, ‘awareness’ for me right now comes in working to expand our horizons outside of our five-years-old-and-under world and soaking in all the goodness out there. But first, there’s this whole thing about us having a baby. 
But for this post, I wanted to offer a little commentary based on what I’ve discovered over the past year for people who don’t know a lot about autism yet but want to learn. Here’s what you can do on World Autism Awareness Day, or really any day for that matter.
1. Whenever autism is mentioned on TV, mute the volume or turn it off. Whenever you read the word ‘autism’ in a newspaper, move on and read something else. Ditto for major magazines and online news media. Why? The mainstream media has demonstrated no ability in sorting out the quality information from the BS. Anybody with a loud voice, money, and a crazy idea can get prime media real estate to talk about their autism theory. The media either can’t or won’t referee the quality of the information. Lately, all they seem interested in is fomenting the controversies, which only confuses people – especially scared parents – more. Plus, you really won’t learn anything useful in any of those media outlets anyway.
On a related point – there are a lot of snake oil salespeople out there and a lot of people with their own agendas. Be very wary.
2. Which brings us to where you can learn some things – go read blogs written by parents who are telling their stories about life with their autistic children. I’ll guarantee you what you read will sound very different than 99% of the crap in the media. Where should you start? Why, there are some great blogs listed in the right column of our site! (Note: a few of them aren’t about autism directly – Wrightslaw, Rachel, Speech Therapy Today, and to some degree Special Needs Truth – though they are all important reads in my opinion for what they do.)
3. Go read some blogs written by people with autism. There you will get an even more very different view from the media. I haven’t finished my blogroll of sites written by autistic persons yet, but for starters I’ve learned a lot from reading blogs like Asperger Square 8 and Whose Planet is it Anyway? and from reading sites like Wrong Planet. In about 30 seconds you’ll realize that most people talking in the broader media about autism haven’t even bothered reading sites like these.
4. Decide today – if you do ever say it – that you won’t use the ‘R’ word anymore. I will confess publicly that I have at times in the past used this word, and I admit that to my shame. Time for us all to fix that. By the way, Spread The Word To End The Word ‘r’ Word Awareness Day was the 31st.
5. Expunge from your speech the often-used negative rhetoric about autism, starting with not repeating any of it that you hear. My child isn’t an empty shell or a shadow. He isn’t lost or broken. He is not cursed or stolen from us. He is perfect the way he is, and he is the treasure of all of our days. He has made me a better human being; he is the best teacher I’ve ever had. And he’s not even 4 yet. If anyone thinks my child is defective, I’ll set up a place to meet with them and they can tell that to my face. I suggest they bring money for cab fare to get home and a copy of their insurance card.
Decide to have a more positive view of autism in spite of all the negative messages out there. There are countless wonderful people with talents to share with the world, except that world often ignores them or assumes they have nothing to offer. Everyone deserve the opportunity to live out their potential. Go fight to help make that happen.
And don’t feel sorry for people with autism or for people like us who are proudly their parents. Support, advocate, cheer, and celebrate instead.
Extra Credit – Be aware that our kid is the cutest kid in the world!
Super Extra Credit - Remember, whenever someone says anything bad about autism or people with autism, they’re saying it about this beautiful little child – my beloved son.
Posts that hopefully are similar:
- The Many Flavors of Autism Awareness
- What do parents of autistic kids want?
- “Checklist of Neurotypical Privilege” – A Must Read for All Parents
- 1 in
- Decision Against Alex Barton’s Teacher – At Least For Now
- What Blogging for a Year Has Taught Us
- Be Aware – For Everyone
{ 9 comments… read them below or add one }
Hi! I found your blog through one of the others that I read and I’ve really been enjoying your site. I love your post for World Autism Day. Another really good blog you could add to your list written by a person with autism is the incipient turvy http://incipientturvy.blogspot.com/ “M” is a gifted writer and has taught me so much already about what life might be like for my little girl in the future.
Natalie
Wonderful post! I hate all the autism pity stories out there. Or that it is something to overcome or be cured or whatever. Or how much money it costs. (we’ve never spent a fortune on our kids, really what more do they need than love, patience and faith?? ok, a ton of therapy, but I get that thru the school district) I love my kids for who they, autism and all.
Love this post. Especially #1 on your list: ignore the media!
(Well, and #2, read blogs!) 
Great, great reminders. And you’re right: your son IS beautiful!
@Natalie – Oooh. Great find! ‘M’ has a nice blogroll too. I swear my RSS news reader for autism alone is 10 miles long now! Enjoyed reading a little of your blog too. Will go back and read some more soon! Thanks for reading our site and glad you are enjoying it!
@Mary (MPJ) – I ignored my own advice and read a little of the online news stuff. There were a couple of decent articles. I think they’re at their most effective when they avoid trying to cover all the controversies as ‘fair and balanced’ (ha!) news without any effort or competence at separating the truth from the crap. And this year I did see a couple of pieces that did a more factual (or at least low-interpretation) account of what happened with regard to autism in the last year, and they were pretty good.
@both you and Ecki – I think where the media often does a disservice, even if they do this with good intentions, is in telling human interest stories about autism. Instead of us telling our own stories about what it’s like being a parent of an autistic child – and, of course, God forbid we have people who are autistic telling their own stories – what the media gives us is their interpretation of what they hear when the people they interview tell their stories. The world sees parents and autistic people through the lens of the media rather than hearing from us directly. And a few seconds of us talking to the camera isn’t us telling our story.
So when someone who hasn’t walked a mile in our shoes tries to interpret the story we tell them, they see how hard it can be and see that things aren’t ‘normal’ and they have no frame of reference to understand our lives, so they do like most people do who hear something that both sounds hard and is far outside their understanding – they feel bad for us that we have to ‘go through all this’. And this turns into pieces that sound a lot like pity because they are the ones telling our stories for us. They can’t know what our lives are like.
Now if all of us got together in a circle in some room and said things like, “You know, I feel completely frayed and burned out” or “I haven’t slept in days” or “I’m tired of cleaning shit off the walls in the morning” or whatever, we’d all nod and empathize and maybe even chuckle about it because we’ve been there or at least close to there.
My fear is that I and perhaps many others may overcompensate a bit for the negative media by blowing sunshine at it more than what I normally feel on a daily basis. Parenting is hard work. I wouldn’t trade it for anything in the cosmos regardless, and if any story told about me arrives at a different conclusion, they need to go back and re-edit it.
There are days I feel like complete dung. There are days I’m frustrated or that I don’t sleep much for days on end or that I feel completely overwhelmed. (like right now) I get through many days through a careful balance of caffeine and chemicals (all of them legal or legally-prescribed, don’t worry). That doesn’t change the fact that being the J-Man’s dad is the most indescribably wonderful thing I can think of.
There are magic days and there are utter shit days. But you know what? That’s not about the J-Man or even about autism. That’s about me and my stuff and me being a human with limited understanding and skills and knowledge and strength. There’s nothing broken about my son, and autism is not a tragedy. All that stuff is about me being given this gift and being called to rise to the challenge that comes with it.
If you told me a couple of years ago that this is where we’d be, I’d never have believed I’d be doing a reasonably competent job of being a parent. It would have seemed too unfathomably hard. But back then, I was the one too far outside all this to grasp any part of it. If I thought about it then, all I felt was fear.
But that’s why I’ve kept showing up to class and learning from my teacher. J-Man’s Law states, “I am way awesomer than all those challenges put together. Just be my dad and we’ll figure out the rest as we go.” Good teacher he is. He’s taught me more and more how to drop the lenses and see him for how wonderful he is and how more and more beautiful my life becomes each day.
What I want to see are more media pieces produced by parents with autistic children or people who are autistic about ourselves. Let’s take off the lenses and let people see our lives as they are – warts and joys and whatever else. Something for them to ponder for next Autism Awareness Day.
I agree, to much attention is paid to people like Jenny McCarthy and selfish parents who put themselves above their children. My video concerning Jenny McCarthy is the only one of its kind on YouTube “Jenny McCarthy is wrong on Autism.” Every other video about her is “OH WOW, JENNY MCCARTHY!!!!!” Autistics such as myself do not like to be the geinea pigs of snake oil salespersonsjust so that they can make a buck. Many groups shun such treatments however, many desperate parents fall victim to such quacks. The basic principle of parenting is lost in society; place your child before yourself. If anyone doubts the intellegence of autistics and says that they can not contribute to society should read about Dr. Temple Gadin and some such as myself (I’m going to Yale University.)
I was offline for a bit but hope you remember me. You had asked me to leave my e-mail so here it is..reallove2008@hotmail.com.
That pic is amazing and suprisingly your son looks very much like mine. I will send a pic when you send me your e-mail. Has the new baby come yet? I am a few days away from week 37. I am very nervous how Caden will do without all the attention. I hope it comes together easily..lol.
@Alexander – Many, many apologies for not responding to your comment sooner. I am so far behind with comments around here that I feel rather ashamed by it.
I just watched your video and you raise many good points. I think parents need to be wary of every medical intervention (pharmacological, biomedical, etc.) offered to them, not because they are necessarily by definition bogus (some aren’t) but because the snake-oil-to-reputable-treatment ratio for autism right now is about a zillion to one. Parents really need to develop a filter to recognize what is garbage from what is potentially useful, and this is not easy to do with all the information and misinformation out there.
The therapies we employ with our son are based primarily on helping him maximize his ability to learn, communicate, and acquire the skills he needs to realize his full potential. Many people we know are thinking about that from a different place in their lives. When it involves your own children, the stakes get very high, and the emotions even higher. This is a very hard conversation to have among parents.
One comment about “the diet”, I’ve noticed that a couple of the kids we’re around most (typically under age 6) do benefit from gluten/casein free diets. It does nothing to ‘cure’ them – and thinking it would is to completely miss the point of the diet in my opinion – but it does help with certain behavioral, concentration, and related problems so that they are more able to learn and participate in the classroom. To me this isn’t much different than how people with certain food allergies – autistic or not – have problems with their moods, ability to concentrate, etc. when they eat something that their bodies don’t react well to. It’s hard for me to see this as any different than problems with say lactose or how our bodies tend to crash when we have too much sugar. What constitutes a healthy diet can vary from person to person, and I think the GF/CF diet falls within that sort of discussion. People who make it out to be some sort of salvation for their children – at least in my opinion – are missing the point of it. Based on what I’ve read and observed, it seems to offer benefits for about 1 in 5 children – assuming my reading and observations mean anything.
You also raised a very good point about ethics. Let’s suppose for a moment that genetic markers are found some day in the future that would allow you with 100% certainty in an amniocentesis to know that your child is autistic. The obvious question that follows is, would this lead to an increase in abortions of those babies? I’m not about to hypothesize about that, but I know this is the exact dilemma the Down Syndrome organizations, parents, and children and adults with DS faced some time ago, and still do. This is one of the main reasons why I respect them so much and hold them up as examples for those of us having conversations about autism. They devoted an inspiring amount of energy to spreading positive messages about Down Syndrome. Was it effective? It’s hard to find reliable statistics, but based on the reading I’ve done, many parents who decided to continue their pregnancies did so because of all the positive stories they heard, and probably wouldn’t if they hadn’t. If a similar genetic test for autism existed right at this moment, would we see a similar outcome? I suspect not, and that really upsets me.
So your comments about us needing to talk more about the achievements and abilities of children and adults on any part of the ‘spectrum’ and call attention to all those positives is well-taken. I couldn’t agree more.
I could say a lot more here, but I’d practically be writing another post. (Perhaps this is why I am so behind on comments!)
One last thing, I wholeheartedly agree that people should read Temple Grandin’s books. Not only is she brilliant in her field of study, her ability to describe to a lay audience how she processes information, experiences her day-to-day life, and so much more is exceptional and very insightful. I also recommend Daniel Tammet in that regard. I wish I understood myself 1/10 as well as they not only understand themselves but can then communicate those insights to others. At least in my opinion, they should be required reading for all parents.
Alexander, thanks for your comment. Good luck at Yale!