There’s a great deal of talk about acceptance regarding autism this month, which is a wonderful shift from all the talk about “awareness”. As I think more about acceptance I am aware of how often I think about “embracing” as in embracing all that each of us is, without trying to mold ourselves to be something we aren’t. What if instead of doing everything in our power to force our autistic children to behave like some imaginary and impossible non-Autistic version of themselves, we instead encouraged them to be the very best Autistic them they could be? The same way we do everything in our power to help our non Autistic children be the very best they can be.
Isn’t that what all of us are trying to do? Aren’t we all trying to be the very best we can each be? So what does that look like, how do we do that? Well, by recognizing what we’re good at, for starters. One of my brothers is an astrophysicist and the other is a micro-biologist. My mother was a chemist, my father a financial advisor and I don’t have a “science-y” gene in my entire body. In college I did everything in my power to avoid both science AND economics. These subjects are of no interest to me. Were someone to tell me, well, you know, your most successful same age peers all love and excel at these topics, therefore you need to apply yourself more to them, and I was then forced to take these classes and was not allowed to pursue my love of art, drawing, design, literature and writing, I would be miserable.
I don’t want to spend my life crunching numbers, looking at stock portfolios, and peering through microscopes. None of that interests me. Hand me a book on quantum physics and I fall asleep. The only good that comes from giving me books like that to read is the money I save on unfilled Ambien prescriptions. I will never be, nor do I want to be, a scientist or economist, I accept this fact completely. I don’t feel ashamed by my lack of interest. I don’t feel this is something I should feign interest in. I have other interests and talents; I focus on those and am very happy. That’s what we all do. We avoid the things we aren’t so great at, and often have little interest in, and focus on what does interest us and where our talents lie. If we were lucky we also had parents who encouraged, supported and cheered us on in pursuing those interests.
Why should any of this be different for our Autistic children? I don’t want Emma to try to be someone she isn’t. I want Emma to be the very best Emma that she can be. Which means I need to support her interests and help her find the best way to communicate. Verbal language is tough for her, typing seems to help her access a part of her mind, that verbal language cannot, so we are doing all we can to support her typing. How she communicates is not as important as that she be able to. She loves to perform and sing loudly, so we have a variety of microphones and an amp that she can use to hone her singing skills. She loves her books, so in between reading her favorite Miss Spider book, I am teaching her about arachnids, what they eat, how long they live, how many legs they have and how they spin webs. Spiders are actually kind of fascinating. Even though Emma loves the Miss Spider books because one of them includes an electrical storm (lesson plan coming on that topic soon!) and Miss Spider has a great many big emotions, which Emma likes to act out, complete with wringing her hands and pretend tears and cries of anguish, there are a great many topics I can piggy back on, to teach her about things like – the weather, electrical storms, any and all big emotions, pretend and real, etc.
I want to encourage her to explore all of these things and more. Last night she wanted to watch a really bad movie that she’d seen her brother Nic watching about a two-headed shark who attacks a group of teenagers. And despite my misgivings about the content (and just awful quality of the movie in general… The acting is phenomenally bad, the shark is the best thing in the movie) it was age appropriate and I figured I could turn it off if it got too gory and awful. There was a great deal of emoting and blood curdling screams, which Emma thought hilarious. She kept saying, “Watch out, the shark is going to come and eat you! Oh no! He’s going to bite your arm off!” Then she pretended to bite me. Bad movie, great time was had by all AND I now have another lesson plan I intend to create regarding sharks!
Be the very best YOU, you can be. Now that’s the kind of acceptance I can get behind!
Emma's Hope Book 
That’s it! Bingo! That’s it exactly! You have put into this one short post the essence of how to raise ANY child. You have chosen to do for Emma exactly what my amazing mother chose for me. She saw talent and potential in me when no one else did, and gave me access to anything that drew my interest. She believed me. In my darkest hours as an adult, I was always able to find my way, because I knew my capacity, and believed in myself. This is the gift my mother gave me. She gave me…me ❤
Chou Chou, so glad to hear this. I love that you wrote, “She gave me… me” That’s the best compliment any parent could ever hope for and want to hear from their child, or at least that is what I hope for and want to hear when mine are grown! ❤
You’re so right we should encourage all kids to be the best that they can be. All of gravitate to things we are good at and enjoy why should it be any different for people who have Autism.
😀
I’m really upset right now…trying to decide if I should delete my comments from a fb thread or let them stay – the ASA president put out a pretty decent message, but then it got sidetracked by the numbers argument, and people were focusing in on that and how it’s “too high” and “we need to stop it” – and I don’t ever comment on stuff like that normally, but it really ticked me off today, and I said something. And, as if to prove why I never want to say anything, people were diving into the fray trying to convince me that autism is a disease. I wasn’t expecting everyone to agree with what I said, but it’s really, really disheartening how many parents were saying yes it’s a disease, a mental disease, and that they would change their kids if they could. Beyond how terrifying that mindset is to me…how on earth do people think that? I have never believed the “disease model”, not ever. I feel sick right now…and though I would love to delete the comments, I feel like doing so lets them have the last word…unless anyone else wants to dive in.
Oh dear, I’m so sorry… you’ll have to provide the link to the thread as I don’t think many will be able to find it…
Are you sure? I just don’t even know what to say at this point. Nobody is interested in fact, it seems. Someone quoted the entire DSM criteria. Someone else helpfully pointed out the difference between disease and disorder. I tried…neurodiversity, how people on the spectrum are really worth listening to, I know how I feel about it…and I may not have expressed myself in the optimal way, but I did my best. Frowny face.
Be forewarned…some of the opinions, and perhaps the letter itself may be of content that not everybody likes. And I apologize if I said anything that doesn’t sound right – I was writing with an excess of spleen at those moments.
https://www.facebook.com/AutismSociety
It’s the thread below the statement from Pres. Obama. from the Pres of ASA – two individuals on the spectrum have responded –
Oh I just leapt into the fray… I, like you, will probably regret it… but, what the hell!
Well, misery loves company, right? 😉
LOL! Thank you for making me laugh! I did “like” your comment. I think it was yours, not sure, sounded like something the “you” I know here, might say. If it wasn’t you I just liked some random person’s comment..
Lol! My name is Anna, and I am not a troll! I swear…and I want to thank everyone here for getting my brain to this new place – as I have mentioned, I never bought into certain theories – but it’s taken a while to find a like-minded group of people whom I can learn from. I’m so grateful to everyone who comments – and I want to say that we parents are (well. some of us) doing our best, and obviously making lots of mistakes…as our parents did before us…being imperfect is about the most amazing thing…it’s diversity at its core…but you’re all helping me be a better mom. I wish I could put all that I’m feeling into better words right now – but I’m crying and my kids will be home in half an hour – and I just ate a cadbury caramel egg to make myself feel better…which may have backfired – but you all are the first place I’ve felt “normal” – so thanks for that
You pegged me! And thanks for putting a calm data wave out there – I could feel my blood pressure getting a little too high!
Well I just joined the party too. I am SO freakin sick of the “troll” remark getting thrown at Autistic adults in these “discussions,” and I said as much. So, I should be getting the hate here shortly myself, luv. 😉
although… i think i am on the wrong thread. lol – will have to try again! hehe
Katrina – I didn’t see your comment on the thread… I think you went to some other one and there were accusations of trolls?!
Gosh, I hope not, but it would not shock me. The other thread below Obama’s msg had a war going about the vaccine thing…I stayed out of that one, but my sister is a research biologist, and I know where I stand there too, lol!
By all means!
I don’t want anyone to get hate, but as I always say when someone tells me I’m going to hell, “At least all my friends will be there!” 🙂
yeah… I saw “troll” being thrown about on the post mentioning President Obama (as opposed to the ASA President) and got sucked in. Then realized that was not the thread you were talking about. Ah well, someone needed a straightening out in that discussion as well. It was received as I expected… Like Ariane said though, “What the hell!” Sure I’ll be seeing all my friends there as well 😉
I went and had a peek. Looks like the online equivalent of people throwing pies at one another, I assume today is “World Autism Argument Day”?
LOL! So that’s what today is!!
I’m struggling with Autism Awareness today and had to write about it. I much prefer the word “acceptance,” thank you for your post.
I’m a bit annoyed with the word awareness. I live in a household of all males. They can all be perfectly aware that a drill (or a dirty sock) was left on the floor, and leave it there. Awareness doesn’t necessarily lead to action.
I think I’m going to add the word adapt. Autism Acceptance and Adaptation. Acceptance is a bit kinder and more involved than mere awareness, but it’s what I adapt (in my own behavior and my son’s) that will create new actions. Hmmm…Autism Acceptance and Adaptation in Action (Four A’s so Triple A doesn’t get mad at me lol)
Hey, so glad you reached out!
The biggest problem I have with “awareness” is that depending on who is at the helm, awareness can mean pretty much anything. Aware that autism is a neurology? Sure. Aware that some people think their neurology is superior? Yup. Aware that certain organizations are making a tremendous amount of money off of the very concept? Yup.
I am much more interest in practicing a celebration of humans in all their diversity! That’s exciting! All this other stuff… not so much. And as you said, awareness can be pretty passive. We don’t need passivity.
I can so relate to boy overload…except they mostly are not aware of just having peed on the floor instead of the loo. And I hope we parents here can be the start of a total overhaul in thinking 🙂
Reblogged this on seventhvoice.
Anna – my own blog wouldn’t let me reply to your last comment – the one about eating the Cadbury egg… oh how I can relate to that urge… but more to the point, so glad you are here and commenting! Always love reading your thoughts, always! ❤
Thank you! I want to always say more, but restrain…partly bc I don’t want to be tiresome, partly bc I should be working on my book…oops!
We knew the fear mongering would increase during the month of April, but I am still amazed by the ignorance of so many people commenting on the ASA site. So much for “awareness.” And sadly so many are parents and relatives of autistic persons. When I saw the headlines about the survey figure, I knew it would lead to so much fear and quick judgements; a “survey” now becomes “diagnosed” and then they are off to the races with “growing epidemic.” The researchers who put out that figure also knew what they were doing. I am sure they are raising a lot of money this month while spreading misinformation.
The laundry list of what parents “need” to do as told by experts reminds me of all the books you get when you’re pregnant and the long lists of “necessary items” to purchase before the baby comes. With experience you realize so much of it is marketing and not necessary. Same for so much of what is recommended by those paid by the hour to provide those services. I am not saying autistic children and adults don’t need assistance and programs to aid learning and independence, but the beginning of all such programs would be more beneficial if it starts with acceptance.
There is such a significant difference between acceptance and awareness, and part of it has to do with power dynamics. Awareness implies someone else is out there performing and doing something to inform me about something, make me more aware of their situation (it places the person being made aware in a position of power because they get to decide whether to learn from the other person’s efforts). Acceptance requires the effort to come from within, to reflect and think, to go beyond understanding to seeing the other person as an equal.
This month is just another month for fear mongering. These are the types of headlines (“Autism Bankrupts Families, Emotionally…”) we can expect. Our President’s speech only seems to add to that, unfortunately.
To my child and all autistic adults and children out there, I am sorry for the ignorance of our society and will continue to do my best. Please know that you are not alone, you are not a burden, you are loved, respected, and accepted.
Dee
Dee, i so agree and honestly I would have felt so much better and more hopeful had we not been given all the frightening statistics and wording that goes hand in hand with all of that when my daughter was diagnosed. So much pain could have been avoided. thats the kind of awareness id like to hear”
Hey, do you know about Peacock spiders? They’re really cool looking! I found out about them recently and I was really excited, but I didn’t have anyone to tell about it because my girlfriend has arachnophobia so she would have been a poor choice, but if you and Em are working on spiders I can tell you about how pretty the peacock spiders are. You can see some pictures of them here: http://ednieuw.home.xs4all.nl/australian/salticidae/Peacock_spider_Maratus_volans.htm and http://www.flickr.com/photos/59431731@N05/sets/72157625910288895/
Wow! They are so awesome! I just started reading about them, thank you so much for the links. I will definitely show them to Em! They are beautiful.
What they won’t look at because it would decrease the fear factor are epidemiology studies like the one in the UK that found incidence of ASD’s in the adult population to be about what one would expect given current child estimates. Also about a decade ago or more when the epidemic nonesense first started there was a large scale study in California that found while autism rates were indeed seeing an increase there was a corresponding decrease in other pockets of the developmentally disabled so it was a bit of a labelling shift. I don’t find the new figures too surprising but I think the criteria of is this causing significant difficulties here here and there are going to need to be applied.
The hard core science doesn’t support a lot of the hype but that it never did doesn’t stop it from rolling out and more alarmingly being believed for at least 20 years after something has been disproven. That’s why such a firm stance has to be taken against turning Autism into a cash cow for the unethical (wll it already is) but measures need to be taken. Parents fed a steady diet of misinformation from before they even have a child with a diagnosis are going to be hitting the panic button and are potential victims for every snake oil salesman out there.
Challenge everything. I have seen families torn asunder that have an autistic child but the rates of divorce are higher for all families that have an aytpical member. That doesn’t make it a cause. You see the opposite too where parents unite into the kind of partnership that often has me wishing I could go back 40 years and start over with them.
It has always bothered me when people blame their failing marriage on their autistic child. I wish people would separate their difficulties from their children. Chances are the marriage was in trouble prior to any children being born. Children change the dynamics of a relationship, if it’s an unstable relationship, it will further fracture, but to say it’s the Autistic child’s fault, is conflating two different issues. All of this is the fallout from the fear talk. Suddenly everything that is wrong, Dad’s depression, Mom’s workaholism, impending divorce, messed up sibling, gets blamed on the Autistic child. That’s a tremendous burden for the child to have dumped on them.
The whole conversation has to change!
Could not agree more. And yes, we’re fed so much misinformation…I guess it’s no surprise how divided people are on this.
I was telling my son a spooky story yesterday – he laughed in delight at each horrible thing that happened. I had to stop telling the story because it was getting too scary for me – but he begged for more. Love our kids.
Aw…
Em loves drama, the louder, the bigger, the more gruesome, the better. If she witnesses two people fighting and yelling at each other she will mimic them yelling and will begin laughing.
Edgar Allan Poe and Shakespeare, here we come!
Try Neil Gaiman’s The Graveyard Book, Click Clack The Rattlebag…he has a knack for gruesome without gore. Coraline, as well!
@erebusetnox. “getting my brain to this new place”
I can so relate to that. As I strive to be the best me I can be, and that pretty much always to do with autistic self-advocacy these days, I have to deal with the resistance and inertia of my own brain. An autistic sensing leaps ahead, and an over-socialised brain lags way behind. Languaging that sense sees me engaged with wierd and wonderful dealings with my own brain. I’m always in awe of (the raw courage and strength of) autistically developing children who find their own (often unsupported) way through that one.
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