are autism awareness days a good thing?

Elmo

{Image is a photo of Elmo and Maria talking to a firefighter from Elmo Visits the Firehouse}

Last week, a reader had a question. I tend to try to answer questions quickly and move on, but this one didn’t lend itself to either a quick answer or to moving on. This was what she asked.

My question to you is how do you feel about Autism Awareness Day at school? We live in a tiny, tiny town where everyone knows everyone. The teachers know my son, they know who he is and he is accepted by his peers for the most part. I am sure people know my son is autistic, but I don’t find it necessary to have an Autism Awareness Day at the school because there are maybe a handful of students in the school who are on the spectrum and they (the teachers and administration) are calling out their differences and putting a label on these children. My son has enough challenges in his life – he doesn’t need his peers pointing them out to him. He needs acceptance, friendship, love. I was opposed to it last year when they wanted a big hoopla (kids creating puzzle pieces in the classroom, talking about autism in the classroom, having an event in the gymnasium (ummm, sensory overload anyone??) etc). I asked why they couldn’t have a ‘difference’ day and how everyone is different and the kids need to accept ALL differences, not just autism. To me, it’s a very ‘old fashioned’ way of thinking these days. We need acceptance of all differences, not just autism.

Am I being too sensitive? By the way, the school did not mention to the parents of the kids on the spectrum that they were doing this – no email, no note, nothing. Maybe I was the only parent they didn’t contact because I was opposed to it last year and the director of special ed wanted to get her way this year.

I know it’s a seemingly straightforward question, but as we’ve all learned together here, this stuff is messy and sticky and layered upon layers of other sticky, messy stuff. I’ll do my best, but be forewarned: my answer is likely to be as messy as the question.

I have no idea where to start with the first question, “How do you feel about Autism Awareness Day at school?” so I’ll follow my own advice to novice writers and start in the middle and let it become the beginning.

I think that if an “Autism Awareness DAY” is necessary then there’s a problem. (That doesn’t mean it might not be good, but necessary is different from good.) Awareness, acceptance, and celebration of differences should be part of the every day curriculum at school. (Should almost never means is, but bear with me.) Once we get to the point where those with neurological and other differences are wholly accepted and understood, then we can do away with these types of events. Sadly, I don’t think we’re there yet. Not even close.

But, does that mean that Autism Awareness Day is a good idea? Well, maybe. But it’s all in the execution. In our school system, we have a curriculum that addresses a number of differences (I believe three are covered per grade level beginning in third grade). The district invites speakers (often high school or college students) in who have those differences to speak about them. Autism is one of the differences covered, I believe in fourth grade.) The kids learn about autism along with deafness and blindness and learning disabilities. They hear from (and are able to ask questions of) someone on the spectrum along with someone who is deaf, someone who is blind, someone who has dyslexia, etc. Although I believe it should start earlier, I think it’s a wonderful program because it offers insight into autism in the context of many other differences.

I don’t believe that “calling out differences” is a bad thing nor do I think that labeling them is inherently problematic. I”m actually a fan of both. I wrote a post recently about why I’m not raising my children to be blind to difference. The short version is that a) I don’t think it’s realistic and b) I think that pretending differences don’t exist or willfully ignoring them is actually harmful, particularly to those who need some accommodation to participate successfully.

Nonetheless, I think it’s vital to respect one another’s choices regarding disclosure. In many places, it’s simply not comfortable nor even safe to disclose one’s diagnosis any more than it would be one’s sexuality. But either way, safe or not, disclosure is a very personal decision and should be treated as such.

That said, I think that, ultimately, the only thing that will get us to the place where it IS safe and comfortable to proudly wear a label is awareness. But — big, flaming, neon BUT — cutting out puzzle pieces ain’t awareness. I’ve long said that there’s a very big difference between true awareness and what I call cocktail party awareness. Cocktail party awareness is recognizing a blue puzzle piece pin and calling it autism. It’s spouting numbers and statistics “According to the latest numbers out of the CDC it’s 1 in 88 children and 1 in 54 boys!” or crowing about how much you loved Clare Danes’ performance as Temple Grandin. It’s a start, I suppose, but cocktail party awareness doesn’t do jack for my kid.

Real awareness is about people. It’s about understanding how autistic people experience the world. It’s learning what it feels like to live inside a brain that is wired differently.

To separate autism awareness from autistic people should be unthinkable. To have an Autism Awareness Day in a school where three kids are on the spectrum and to not talk to them and their families about it first, to not let them lead the planning and drive the content and structure of the day is .. well, it’s absurd. To me, it shows not a real interest in promoting understanding, but instead a desire to check a box, feel as though we’ve done the right thing and move on. I think it does more harm than good.

My nearly eleven year old daughter loves Elmo’s World. We watch it a lot. Like, a LOT. And in nearly every episode, Elmo tells the audience that he wants to learn more about the topic at hand. (Of course he says, “Elmo wants to learn more,” because, ya know, Elmo ain’t got time for pronouns.) And then he says something like, “If we want to learn more about firefighters, we need to talk to a firefighter!” and in walks a firefighter to tell us what it’s like to be one.

Now, autism is clearly different. Given that it is, at its core, a communication disorder, it’s not always as easy as asking an autistic person how they experience the world. As we so frustratingly know, we have yet to find the individual keys to reliable, mutually functional communication for many, many of our kids and their adult brethren. So we can’t always “just ask the questions” nor always understand the answers.

However, that doesn’t mean that we shouldn’t try, and, for the love of God, at the very least inform, include, and seek the help of kids on the spectrum and their families if we are to create a day about them in their own school. And they should ALWAYS be given the choice to participate or not. For some kids, it’s confusing, overwhelming and uncomfortable for their peers to be talking about them and the way that they experience the world. Cause, ya know, duh. Others might be proud to share and teach their peers. Others might not yet be able to do that, whether they would want to or not. Their desire and ability to participate are likely to be as individual as, well, people. But the choice MUST be theirs.

Many out there in Autism Land have had their fill of Awareness. They tell us that there’s pretty much no one left who doesn’t know about autism. I’d argue that that’s both true and not. There’s lots of cocktail party awareness, but there’s very little real awareness.

I would argue that awareness efforts are still necessary. We will never have acceptance (nor, ultimately, celebration) without awareness. But, to have Autism Awareness Day without autistic people is like learning about fire fighting without talking to a firefighter. And even Elmo knows better than that.

About these ads

24 thoughts on “are autism awareness days a good thing?

  1. Well said, Jess. And thank you for answering my similar question a while back. I appreciate you and your family more than I can say.

  2. Way back when my son was in elementary school, they had an Abilities Awareness Day, where all kinds of differences were addressed.
    They had people come in with workshops the kids rotated to. That included a blind DJ, a man who had lost his legs, a dance team with both abled and disabled members,kids using crutches to get around etc. Maybe, that’s the route to take whereby, autism is not the only disability to be made aware of. I like the concept of Ability Awareness because it was about people overcoming all kinds of challenges to live productive lives.

  3. This turned out to be longer than I was intending it to be, so apologies for the monolog. But:

    I would like to see Education Days rather than Awareness Days.

    Awareness is almost worse than useless, because it gives people just enough info that they think they know all about it and feel confident in lecturing people who live with it on how their years or decades of experience is insufficient because the Awareness Day said this. Or, at least, that’s the impression I get from being someone with several medical conditions and a few developmental disabilities thrown in for good measure. You wouldn’t believe the number of people who think a one-hour info session, a third of which is spent on doing jumping jacks with a straw in their mouths and their noses taped up, is sufficient for them to question my management of the asthma I’ve lived with for 25 years. As just one example.

    Worse, is that awareness stuff doesn’t actually give these people anything useful. Sure, they have stats and medical jargon and what have you, but they don’t have anything that would actually help if the manure hits the fan and I have a severe asthma attack in front of them. But they think they do. And that’s where it’s dangerous. Awareness gives people enough info to think they’ve got it, but not enough to actually be useful.

    This problem comes in the difference between awareness and education.

    Awareness = I now know this is a thing that exists. I am aware that it is a thing.

    Education = I now know this is a thing that exists, and I’ve learned a bit about how little I know about it, focusing on practical things someone with my lack of experience can handle.

    Frankly, prevalence stats shouldn’t be in such events. They don’t matter, not in the sense of making things easier for the people with the thing. They don’t matter in the sense of affecting people’s daily lives. The don’t matter in the sense of being useful. Likewise with simulations, which don’t actually do a good job of simulating disability anyway and just make people go “Oh, it must be so hard to live like that! Pity, pity, pity!” They’re not useful. Not real. Time shouldn’t be wasted on them.

    What should be in there? Common challenges. Things you can do to help. Things you can refrain from doing to help. How to recognize an emergency. How to respond to an emergency. What to do if you feel like offering help. What things people with the thing under discussion consider rude. What things they consider hurtful. Why those things are rude/hurtful. Etc. Practical, useful things that will actually make a positive difference in the lives of the people with it, rather than breed pity and othering.

    Why waste time with prevalence and pity-breeding disability simulations? Why not focus instead on real stuff that’s useful?

    Am I out in left field here?

    • Given that I think that you and I are essentially saying the exact same thing, I don’t think you’re in left field at all. :)

  4. Elmo’s a pretty smart little monster. I have ADHD and belong to an organization that mentors elementary and middle school kids with ADHD, dyslexia, and other LDs using high school and college students who also have the same diagnoses. I was aware of adhd after I got my diagnosis in high school, but I didn’t fully understand it or accept it until I was in a room with 40 other people like me. The magic of being able to look around and know you’re with “your people” is something else. Every weird quirk I have is shared by someone in that organization! For three solid days I was in the majority, and that was awesome. That look in a kid’s eye when he says he has ADHD and you can reply “me too!” is something I’ll always cherish. I can only imagine bringing in someone with a certain disability to speak at school and for a child in the school with the same disability to have a moment of kinship. In addition to the learning about someone from them, you also get a tiny moment of connectedness for a kid who is just like them. It’s a pretty beautiful thing!

  5. Actually, I think that was what went on in my kid’s school. There were people who showed how they overcame their challenge. Also, this was elementary school, the kids were exposed to different people and how they lived their lives Kids were in small groups and could ask all kinds of questions. I think addressing the common challenges is a good thing as well as how to be helpful. I remember it as being a really wonderful day for not only my son with Autism but my neurotypical daughter as well.

  6. This post is great, the comments are great and I’m sending this to my son’s school/team. They’re great, too, and I think they’d appreciate the thoughts/ideas in this post/comments. Thanks!

  7. first, where i’m from, a small rural area…very few people have any clue what autism is; when most people think of autism, they think of very old, outdated stereotypes that have very little relationship to the reality. lots and lots and lots of people still need a huge amount of autism awareness. i’m not saying school awareness programs are the way to go…i don’t have an answer for that. but when i hear people say, “wow, it’s 2014…is awareness still an issue?” it is a huge issue, i promise…not everywhere obviously, but in many places.

    also: When i was growing up on the spectrum, I needed a Normalcy Awareness day. And given the large number of kids currently on the spectrum…kids who find their NT peers to be painfully confusing…I think what we need is neurodiversity awareness in a broad, general way. Don’t just tell NT kids how to understand these “special” spectrum kids…tell the spectrum kids how to better understand their “special” neurotypical peers. Talk about the traits, habits (symptoms?) of normalcy. Don’t write “autism traits” on a chalkboard alone…write “normal traits” right beside them. Educate ALL the kids about difference, not just the NT students. All I know is that, as a spectrum little one, I was very curious about others…I would have been grateful for a Normalcy Awareness day.

    (And I agree with others here that awareness should be focused on difference and/or abilities generally, not just autism).

  8. Love all the replies and your post. Personally I think it is important that we begin to look more at awareness that different is ok. That everyone matters. What bugs me is things like this often end being about the “condition” rather than the people. Becomes a box ticking, PR exercise.
    When my son was in preschool there was a picture on the wall of a child in a wheelchair together with another typical child with something written underneath…Looks nice but this is the same place that couldn’t understand my son was special needs because there is nothing to see.. We have only learnt since he left how little they actually understood him….
    I think the world could learn a lot from Sesame Street and Elmo.

  9. I would say awareness has a long way to go. My son just met another boy in our neighborhood and we were speaking with him and we told him that he is autistic. He had no idea what that meant and he is 12. So, we began explaining. We are completely open about autism….and feel we have to be. It is necessary, but we are missing the boat, as you’ve said before.

    I went last month to listen to adult autistics speak and it gave me much needed insight. They were amazing!!!!! Each one vastly different from the other, as all people are…but I found some similar traits. One seventeen year old carries her IEP in her book bag, because a teacher assumed she would understand guidelines of assignments. She is quite literal and an educated teacher, so to speak, who is supposed to be familiar with disabilities was way off the mark and in turn completely disrespectful to her. People still don’t really get it!! I cried when she said she carried her IEP around…because I was extremely proud she was taking charge and in control, but sad that people do not get it…to the point she needs written proof that “HEY!!! I have these provisions because I AM DIFFERENT”….I learned so much that night.

    I also wanted to say that we had a play date with other autistic children and their families and it was so nice!! Another mom and I talked about how much we loved your posts!!! So….in that aspect…..in a little tiny town in SC …..we were speaking of you…..awareness……and in the meantime…her son had stopped hiding and my son was actually interacting together with the group!!! It was a great day!!!

    Sincerely I thank you for your dedication and heartfelt posts!! Everything you write about is so spot on!! My brother is gay and about to marry his lover….and I get your post about talking about differences, like addressing the dad post about two gay dad’s. I sent him your post and cried when I read it. Thank you from the bottom of my heart!!!!

  10. Reblogged this on Spectrum Perspectives and commented:
    “Cocktail party awareness doesn’t do jack for my kid…Real awareness is about people. It’s about understanding how autistic people experience the world. It’s learning what it feels like to live inside a brain that is wired differently.” – so much yes to this.

  11. Pingback: are autism awareness days a good thing? | a diary of a mom | My Autism Site | All About Autism — My Autism Site | All About Autism

  12. What a well written answer on an otherwise REALLY hard question.

    My first instinct would have been to agree with the original poster, why not just “differences awareness day”. We too live in a small town, with a handful of children with autism, mine being one of them. But after reading more of what you’re saying, the fact we need an awareness day shows a problem, and a necessity to have one.

    I don’t think autism awareness is everywhere. I, personally, hardly knew a darn thing about it except for the stereotypes of they must be a boy, and mute, and all that “classic” nonsense. Thankfully my child’s school and my parents were very aware and now, so am I.

    Kudus to eloquent answer on a complicated subject.

  13. Pingback: the unbroken world |

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s