Hand out a card explaining autism? What should it say?

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AardvarkGoodSwimmer
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11 Jan 2014, 7:10 pm

I think the cards are well worth experimenting with.

And really, a person who stares at an autistic child is being rude. And matter-of-factly offering them a card is less confrontational than verbally saying something.

The person is likely to accept the card and is likely to read it. And they might even look up the links.



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11 Jan 2014, 7:31 pm

My card would say: Milk, two sugars and give it a good whisk.

That's all I seem to say to people these days, so that's how I should be defined.


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BigSister
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12 Jan 2014, 8:29 pm

How about this? The person with the left-handed explanation got back to me and gave me permission to use the metaphor, so this is what I came up with:

This child has autism. People with autism may behave in ways that seem different to neurotypicals (people like you and me*) because they have difficulty understanding social situations, restrictive, repetitive interests, and many have trouble with verbal language. Having autism is like being left handed, but on the social interaction level. Some things a person with autism can do readily or better than normal, some require a different tool to achieve the same result, and some will cause them to metaphorically smear ink on the paper. If I handed you this, odds are this child is having one of those latter moments.

Please help by showing understanding and tolerance. If you want to learn more about autism, check out autismspectrumexplained.com.

*Yes, I know I'm not really neurotypical, I'm actually at least BAP, but that's way too much to launch into with the person I'm passing the card to.

What do you think? Constructive criticism is not only welcome, it would be greatly appreciated. I'll be posting a link with whatever I end up with to my website for parents to use, so there's more at stake here than just my use.

Thanks!
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tall-p
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12 Jan 2014, 8:57 pm

I don't think that NT's have the slightest desire to understand autism. Now I'm not comparing autism with these problems, but do NT's want to know about MS, or schizophrenia? No only if it effects their own lives. That is how most people are.


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BigSister
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13 Jan 2014, 8:15 am

tall-p wrote:
I don't think that NT's have the slightest desire to understand autism. Now I'm not comparing autism with these problems, but do NT's want to know about MS, or schizophrenia? No only if it effects their own lives. That is how most people are.


I mean, you've got Psych majors out there, so obviously some NTs are interested. And they don't have to be particularly interested. Handing out that card is just as much something to make the card bearer feel comfortable and give them a non-confrontational way to call out someone who's staring or who says something ignorant as it is about educating the person who gets the card.


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AardvarkGoodSwimmer
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13 Jan 2014, 12:02 pm

Hi, my first thought was something shorter with bullet points. But that might be too corporate and slightly insulting. The kiss of death in writing is to talk down to your reader, and your paragraph does not do that, whereas the bullet points may.

Someone starts reading the paragraph and they keep reading the whole thing. It pulls them away from their activity of rudely staring. I mean, they might even overapologize and you'd have to take that to the side, saying something like, 'That's okay. It happens.' That would be a good problem to have. I do think any verbal conversation with the person should be kept relatively short.

I really believe in experimenting with one or several cards. And not just experimenting for its own sake. But cards you feel are promising.



BigSister
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13 Jan 2014, 3:45 pm

Okay, so in order to make them true cards (four to a column, with two columns on a page), I had to slim down the description even more - I'm hoping it didn't lose anything in the transition. Here it is:

This child has autism. People with autism may behave in ways different from neurotypicals (people like you and me) because they have difficulty understanding social situations, restrictive interests, and may struggle with verbal language. Having autism is like being left handed, but on the neurological* level. Some things a person with autism can do readily or better than normal, some require a different tool to achieve the same result, and some will make them metaphorically smear ink on the paper. If I handed you this card, this is likely one of the latter moments. Please help by showing tolerance. To learn more, visit autismspectrumexplained.com.

*I changed this from 'social interaction level', because it's not just social interaction that's different - it's different brain wiring, so to speak.

It's now 100% for other peoples' use, via my website, as opposed to my own personal use. Turns out the autistic child I watch (and he is definitely autistic) isn't technically diagnosed yet (except maybe he was? I've gotten confused in this whole exchange) and his family is having trouble accepting it. Definitely not the level of acceptance that they'd be good with be doing something like this. It's been kind of rough, because I had NO idea he wasn't technically diagnosed yet or the family was struggling to accept it when I came in, and I've had to kind of do a rapid screeching halt on all the autism acceptance/understanding stuff I was saying initially, because they are just not ready for it, not even ready for the word autism. I think it could be talked about, but it would have to be quite delicately and carefully, and that would require a level of social skills that I just plain don't have. Anyways, cards are on hold for me, long story short, but definitely will be used by parents.


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AardvarkGoodSwimmer
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14 Jan 2014, 12:11 pm

I like you're card and please do make it available for parents, siblings, friends, etc, via your website.

One thing I might suggest is the part " . . (people like you and me*) . . ", which I kind of like with the asterisk. It kind of adds a friendly part and makes it more intellectually meaty. And it kind of hedges your bet with being at least BAP. And so the asterisk might refer to,

* Of course we're all different and unique in our own way, and autism is a spectrum which blends and blurs all the way to 'normal.'

And then there's the question of how to hand out the card. What I learned in furniture sales is that you don't block someone's path. So maybe, even though the person is being rude by staring, you take the high road and don't stand directly between them and the autistic person. You stand to the side as you offer them the card. Maybe. Perhaps. Again, the experimentation approach.

The part with the parents struggling with the diagnosis and not even liking to hear the word autism. This is a tough one. I'll try and put on my thinking cap.

And if you don't mind, might you give a quick explanation of what BAP means?



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14 Jan 2014, 12:37 pm

I like the asterisk, too, but if I put that in I'm going to have to take out two lines, and I'm not sure what I'd take out...I'll try to play around with it and see, but no guarantees that I can pull it off.

Not sure if you meant an explanation of BAP in the card or here, but I'm assuming the latter. BAP stands for broader autism phenotype. As you just said, the autism spectrum does blur all the way to neurotypical. People who are BAP have significantly more autistic traits than neurotypicals, but not enough to qualify them as autistic or have others recognize them as such. They've done studies and many, if not most, seemingly non-autistic parents of children on the spectrum are actually BAP.

I'm at least BAP - I took the survey in a study on BAP and I actually came out with pretty significantly (in my opinion, I didn't actually run a statistical analysis) higher scores than the averages for the BAP groups they were testing. Yet, when I take the online tests for AS, or even compare myself to my sister (AS) or friends who are Aspies, I don't *quite* make it that far. So I say at least BAP, because I'm definitely not neurotypical, but I'm not sure if I'm AS. As a result, I found myself in the odd position of really upsetting my sister, who thought I was fully neurotypical, and upsetting my friend, who though I was AS like him. Can't please anyone...


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BigSister
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14 Jan 2014, 12:47 pm

Okay, I pared it down to the point I could fit the extra bit in (although I couldn't manage an actual asterisk. Here it is:

This child has autism. People with autism may behave in ways different from neurotypicals (people like us, although autism is a spectrum that blurs all the way to neurotypical) due to difficulty with social situations, restrictive interests, and struggles with verbal language. Having autism is like being left handed, but with neurology. Some things a person can do readily or better than normal, some require a different tool to achieve the same result, and some will make them metaphorically smear ink on the paper. If I handed you this card, it is likely the latter moment. Please help by being tolerant and visit autismspectrumexplained.com.

I think this time around, though, it lost something in getting pared down so far, and the way I slipped that bit in was kind of awkward. Any ideas on improvements?


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AardvarkGoodSwimmer
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14 Jan 2014, 10:29 pm

Thanks for the explanation of Broader Autism Phenotype. This is what I might call 'Aspie-friendly' :D which I think is a good thing and very welcome here at Wrong Planet.

I do think I myself am on the Asperger's-Autism Spectrum. For example, I have had real struggles with jobs, as well as successes, and social non-inclusion, and sensory issues. Now, I self-diagnose in part because beginning at age 17 I started to lose faith in so-called mental health professionals. And plus, I think it's okay to self-diagnose and people my age typically will be self-diagnosed. The Autism Spectrum explains more about my life, by far, than anything else. And, I think the Spectrum also helps to describe my mother and my sister, and my family.

Hopefully, your sister will come round. I guess she wanted someone who could fully be a bridge for her, or maybe she wanted you to represent something instead of just being yourself. In either case, hopefully with some time she can wrap her mind around that you have some spectrum traits but not others, or not to the same degree. And same with your friend.



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15 Jan 2014, 11:10 am

My sister's actually doing much better now, it just when I first mentioned it that it pushed her near melting down. Which was not good. :(


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jcq126
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15 Jan 2014, 12:07 pm

I'm left handed and have ASD... son of a b***h.



AardvarkGoodSwimmer
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15 Jan 2014, 8:31 pm

I'm glad your sister is doing much better.

And I think your instincts are good in viewing the pared down card as not quite as good. I think the part in the parenthesis became too long and lost the fast and snappy part. And I think it does help to say "To learn more, visit . . . " That it's optional to visit, instead of implying that it's a requirement.

And actually, the fact that revisions take something downward is kind of a sign that it's pretty good to begin with.

==========

I'm going to try and find a post I made about a famous person who might well be on the Spectrum. Not that we need to be famous, in order to receive the respect and decency we should receive simply as members of society. But it's kind of in my mind, where something different is treated as neat and interesting, and not necessarily as pathology. And perhaps also a more tolerant segment of society.

http://www.wrongplanet.net/postt152005.html

This is author of The Wealth of Nations Adam Smith. Yes, it helped that he had some independent money and he was accepted by fellow intellectuals in the Scottish Enlightenment. But that's still something. The range of 'normal' was not as tight and narrow, say, as some of academia is today.



JSBACHlover
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15 Jan 2014, 9:25 pm

"This card grants you FREE ADMITTANCE to my world."



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18 Jan 2014, 5:42 pm

BigSister wrote:
This child has autism. People with autism may behave in ways different from neurotypicals (people like you and me)


I don't think that it's a good idea to assume that the hypothetical person is neurotypical.