Instructables

Awareness is Empty

It's a new month.  That apparently means it's time for champions of various causes to ask their online friends to repost something about awareness for whatever cause.


This month happens to be April.  One of the many causes assigned to this month is autism awareness.  I'm married to an aspie.  We have three autistic children.

Being "aware" of autism is about as helpful for autistics as posting your bra color in your facebook status is for curing breast cancer.  A well known autism charity likes to champion their feel good cause with pictures of children and alarmist catchphrases about how tragic and dream crushing autism is, and how we need to cure it now.  I really hope that this community doesn't need a lengthy explanation (although I can also cite sources, if you like) about why the notion of curing autism is as offensive and misguided as a campaign for "ridding the world of nerds" might be.  Let me know if you need more information on the heritable physiological structural brain differences that define autism, and the sensory and filtering challenges that determine an individual's struggle with the less advantageous sides to that type of brain.


You know what's more appropriate than autism awareness?  Autism acceptance.  Everyone is born with different challenges and different talents.  Some people have very different reactions to sensory stimuli.  Try to be sensitive to that.  Allow people to be who they are without trying to force them into some arbitrarily shaped mold.

If you want to learn more about what it's like for autistic people, look up first hand accounts (and ask people you might know who are on the spectrum) - there are many accounts out there, and they're quite diverse.  The more you read, the more you'll understand.  I don't understand why people would think they're getting accurate information about autism by searching the website of an organization that actively excludes autistics from any board or leadership position.  Then again, that organization touts operant conditioning as a therapy for autistic children, because apparently it's better to force a child to seem normal than to understand why he acts in unique ways and help meet his unique needs.

Supporting the idea of neurodiversity doesn't mean that every difference is fantastic and easy to deal with.  It's not.
Focusing solely on the negative aspects of anything can make you overlook the gifts that come with it.  I take medication for my ADD to help with the challenges that come with that, but I certainly don't try to eradicate it (which would be impossible anyway).  If my medication muted the positive aspects of ADD, I'd have to seriously reconsider whether it was worth it.  Karate or dance lessons to help with the proprioceptive challenges that can come with autism don't negate any positives, nor does compassionate speech therapy.



I won't be "going blue" this month for awareness, which does little more than promote a large corporation with questionable intent.  I'm all for scientific research, but the agenda behind their funded research is highly suspect.


Do you have an ache to do something for autism whatever month?  Tell a friend that instead of posting images of puzzle pieces, you're going to be more accepting of differences.  If, for some reason, you really want to spend money on a cause, you could try something practical like buying an autistic kid a lego set (not one of my kids, though... I am so sick of stepping on those darn things).  Obviously Legos aren't appropriate for all ages, nor for all spectrum kids... just ask the parents for guidance.  Toys or fidgets relevant to the kid's interests are great, especially if they help the kid further develop their unique analytical skills.

If you really want to donate to some organization for some reason... there's an autistic self advocacy network.


Oh, and for the record... 


normal brains don't change the world.


Picture of Awareness is Empty
I've got me an awesome Aspie son turning 13 soon. I'm promoting autism awareness, definitely not the "autism fix". I have only recently learned that many people on the spectrum find the puzzle piece to be offensive. I've always thought it was a symbol of the way neurotypicals cannot understand what makes Aspies tick. It's plainly obvious that their processing of input is different, but not how or why. I participate in Autism awareness month because this is the time when the most people are conscious enough to ask me what it is, what it's like and how we came by the diagnosis. Sure, I get my share of well-meaning idiots that are bold enough to ask me "have you tried a gluten-free diet?" -- but it's great to have that communication because then I can tell them "in the beginning we did, but found out through research and personal experience that it had no effect. Autism is just another way of processing information and stimuli and Asperger's Syndrome is just a name for a group of similar behaviors. A piece of bread can't change the way someone filters information. Unless you have a physical gluten allergy unrelated to autism" :-). Thank you for your post -- I'm hoping you'll be providing the links you mentioned -I'm always interested in an Aspie's point of view!
supersoftdrink (author)  xLaurieClarkex1 year ago
If I'm recalling correctly, the puzzle piece was originally chosen because it was an easily recognizable shape, not as a statement about autism. Sometimes the slogans some people come up with about autistics being "puzzling" grate on me, but I like the concept of "all different shapes fitting together to make a beautiful whole picture" if we're talking about neurodiversity and humanity.

:) Here are a few of the articles I've found interesting:

http://www.medpagetoday.com/Neurology/Autism/36125 http://familycircle.com/blogs/momster/2013/04/03/i-cannot-have-this-conversation-right-now/ (this one is about meltdowns and self advocacy)

http://www.nature.com/nature/journal/v491/n7422_supp/full/491S20a.html this discusses the limitations of brain scans because of head movement affecting the results - important to acknowledge all the data limitations when it comes to science

http://scopeblog.stanford.edu/2012/09/28/new-public-brain-scan-database-opens-autism-research-frontiers/ (about the public brain scan database... which is REALLY COOL)

https://www.facebook.com/autismdiscussionpage (good post on this fb page about information overload) http://www.sciencedaily.com/releases/2012/02/120217101048.htm (brain differences in 6 month olds between neurotypicals and those who later are diagnosed with autism)

http://www.sciencedaily.com/releases/2012/03/120321152637.htm (autism "risk" gene linked to differences in brain structure - interesting to me, because I think it illustrates functional, healthy brain differences. medical professionals only want to diagnose things that are "wrong" or "dysfunctional," but we'd do well to consider all of our different talents and challenges, how each of us processes things differently. People with autistic brains don't always develop enough of the sensory, filtering, or social challenges to qualify for a diagnosis. That doesn't mean they don't have any of the gifts that come with that type of brain, or that they don't struggle with the sensory stuff that diagnosed autistics do. Labels aside, it's good for us to know how each of our minds work, and that no brain type is "wrong.")

http://www.sciencedaily.com/releases/2013/01/130123133607.htm  more studies showing autism is heritable, and it's disappointing that previous studies focused on spontaneous rather than inherited gene mutations... makes one think the researchers didn't want to acknowledge that nerdy kids tend to come from nerdy parents :)

http://jama.jamanetwork.com/article.aspx?articleid=1104609  (small study showing denser prefrontal cortex in male autistic children than in NT male children)

http://www.sfweekly.com/2012-10-31/news/autism-autism-speaks-autism-self-advocacy-network-fragile-x-syndrome-genetics-medicine-biology-science-culture/  (how autistic advocates help get rid of misconceptions)

http://autisticadvocacy.org/  autistic self advocacy network, lots of great articles and posts by autistics (and some information about why most of them are not so fond of Autism Speaks)

http://borntoexplore.org/whatisadd.htm  a page that discusses the problem of diagnosis when it comes to ADD (too many types lumped into a ridiculous category... relevant because it happens in autism too with degenerative genetic disorders included, and also because autistic and ADD kids both have trouble filtering stimuli... both are "busy brains")
Thanks!! I've got me some reading to do :-) hey, all -- if I wanted to help raise funds and/or drive traffic to a site benefitting people and families living on the spectrum which would you recommend? Autismspeaks.org seems to be the most recognizable, but I don't support their "fix it" point of view -- seems like www.autisticadvocacy.org would do more good.
Lkymama1 year ago
I am blessed to be the mama of an aspie too! Not only autism but type 1 diabetes, asthmatic with severe Compulsion and defiance disorder. We adopted my son, who is actually my brothers and his POS ex girlfriend. My son is a heroin, alcohol and nicotine baby. We didn't find out about this blessed boy until he was 4 months. In foster care with a family who only took in drug babies because the state of CA pays a lot of money for their care....he was held ONLY to be changed, or bathed (I hope). He was never cuddled with until we got him at 5 months. It took 2 months of consistent holding while he flailed about. Now, he's my cuddle bug and I am honored to be his mommy. Anyone who knows my son would tell you that he is an amazing human! Sewing makes him happy. He is so creative and loving...thank you for your beautiful note and just know that you're not alone. I swear autism and juvenile diabetes is in our water.
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bajablue1 year ago
Thank you for sharing your unique perspective, SSD.

I recently watched an enlightening video about Asperger's Syndrome.  It was produced by a young girl who actually has the condition, along with her younger brother and some schoolmates.  It was about promoting understanding and acceptance.

I couldn't recall her name, so I wasn't able to find the video via google, so what might you recommend for people interested in learning more?

btw... you made me think of a funny meme, so I thought I'd share it. ;-)
lego1.jpg
belsey1 year ago
Well said!
Yes! Lovely kids, BTW.
What's more, a Cambridge University study indicates that potential for Autism spectrum is detectable in utero: "The findings raise the possibility of undertaking tests in the womb to detect the condition, which would allow parents the controversial ability to decide whether to terminate fetuses." Isn't it bad enough that 4 black babies are aborted for every 1 white baby here in the US (US Census Bureau), we are next contemplating terminating kids who might be autistic? Amnoicentesis is swiftly becoming its own kind of "autism awareness". Pure bigotry. Thank you for posting.
Hear, hear!
Ninzerbean1 year ago
Bravo!