Neurodiverse "Unpuzzled" image for you to use.

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Evidence of Nonsense

The term Autism has become a vast catch-all for a wide variety of traits that range from those that are functionally incapacitating to those that mildly affect behavior and social interactions. Nobody knows quite what "autism" is, save that it is obvious that it's probably far more than one thing and that it causes a good deal of fear and confusion among parents who are moving heaven and earth to find treatments and cures.

Which is wonderful of course, but it's also terrible.

ScienceDaily: Ped Med: The autism treatment challenge: "'There are no standards for safety in autism treatments,' said Steven Gutstein, psychologist, autism specialist, researcher, child, marital and family therapist and co-director of The Connections Center for Family and Personal Development and of the Relationship Development Research Institute in Houston.

...

'There's not a single study to see if anyone is harmed by the treatment, be it biomedical or behavioral,' Gutstein said in an interview. 'The assumption is both are better than nothing, and the more the better, but there are no data to confirm that.'"

Hey, I have an idea; how about asking an actually autistic person?

"I am not a puzzle, I am a person."
This shirt design supports Autistics.org, autism awareness and neurodiversity in general.

Now notice the language I used. "Autistic Person," not "Person with Autism." Speaking as an Aspie - diagnosable with Asperger's Syndrome - and speaking from my experiences dealing with actual autistics, such as those at Autistics.org, It's pretty common for folk on the spectrum to think of autism/aspergers/whateverthehellitis as something they are, not something they "suffer from" that could be cured.

I'd rather be "cured" of opposable thumbs.

And that with full realization of all the downsides that I and those who love me cope with every single day - much to our blended amusement and frustration.

Interestingly - even astonishingly enough, many full autistics, who seem to suffer quite badly from clearly crippling "downsides" feel exactly the same way; our minds are beautiful places to live, and from our perspective, being able to live fully in a neurotypical world exactly as neurotypicals do seems like a "cure" that is far worse than the "disease."

Oh, don't get us wrong - we'd definitely like the hard parts to be easier - but we'd also like you to notice the things we do well without words like "idiot-savant" being thrown about. "Geek" is somehow better, frankly. Not a LOT better, but at least it's an honest word.

Personally, I prefer "eccentric."

UPDATE: Autism Diva has a great long article up that I'd like you to read. I particularly like these two 'graphs, which illustrate her point rather well - and the one I was trying to make. Autism - and so many other things in life - are much more issues of perception than substance.

Autism Diva is reminded of a caller to the Diane Rehm show when Dr. Grinker was on there promoting his book. The caller said something like: "I'm from a large extended family from Tenessee," (maybe he said, Kentucky) "the behaviors I see in my son, that the doctors call "autism" is just how my family is. No one in my family would have sought out a diagnosis in the past because so many in the family are just like this. It's normal for us."

So it sounds like if you come from a family where lots of the kids spin can lids and stop answering to their names at 12 months, everyone just says, "Yup he's a Johnson, awrighty. Wonder if he'll be able to do that calendar trick like cousin Ted." The caller certainly didn't indicate that the family had a habit of mourning the birth of another of these weird kids, and it's safe to assume that some of the members of the family were quite autistic and others were more like normal-ish, like it is in little Hayden's family.

tag: autism, autistics, autistics.org, autism awareness, cafepress, tee-shirts, t-shirts

Give a Clue this Christmas!

My Latest Autism Designs and what they mean.

People who are neurotypical tend to think in boxes. One problem with being on the Autistic Spectrum is that you tend to not think in boxes. As far as I can tell, our thought process is highly relational. We tend to not even SEE the boxes and we don't think in a binary way at all.

A great number of problems come from the inability to understand that different people can have starkly different ways of understanding the world around them.

We tend to assume that people who came up with a functional solution for a problem came to it in the same way; indeed, by way of the same initial perceptions. Autistics and Aspies are as guilty of this as anyone; indeed, it's been studied within the AS population. The reason it's not been studied within the NT population is simple; in the case of NT's, the assumption that another person has a thought process that works like yours does is statistically likely to be correct.

So, when an autistic person makes this unwarranted assumption, it's called "mind blindness" and the autistic is gently handed a clue in the form of "social stories." When an NT does it, it's in the form of an organization called "Cure Autism Now."

If "autistic thought" were not valuable, there would not be such a roster of famous thinkers, such as Einstein and Newton now thought to have been probably autistic to some degree. By the same token, it should be a profound clue that there are courses to teach neurotypicals to "think outside of the box," and almost all higher education is aimed at rooting out simplistic, either-or thinking and to over-ride fear and submission responses when you have to communicate about or defend your work.

The ability to think and function outside of the box is an asset of significant value; recognising that is especially important if you are planning to "do something for autistics." Their ability to function in 'in an appropriate way' is limited, but that does not imply their ability to function, given an appropriate context is as limited as it appears. The trick is to find that context; and in that context they will not have so much difficulty "being appropriate."

There's no area where this insight is more critical than in regards to the parents of autistics themselves.

Make no mistake; autism can be a crippling condition, and it's made worse by being a condition where you absolutely must depend upon others to accommodate your needs and accept limitations that those without the condition cannot easily see or understand. But even the most obviously disabled "autist" is as severely affected by presumptions of how their disability affects them and even more by refusal of others to accept our word for the accommodations we need.

This following paragraph is emblematic of the crippling parental fears that the 800-lb gorilla of the pro-cure movement exploits for funding and validation:

You are never prepared for a child with autism. You will gradually come to believe it, but never fully accept it, get used to it, or get over it. You put away the hopes and dreams you had for that child - the high school graduation, the June wedding. Small victories are cause for celebration - a word mastered, a dry bed, a hug given freely. - FAQs about Autism: Cure Autism Now

Those of us who object to such fear, panic and the pervasive bigotry that exists with in the pro-cure movement - as well as it's seemingly obvious ethical deficits are pretty soundly attacked, with all kinds of terrible motives assigned us. (Theory of Mind, eh?)

A great deal of the work on the support groups that accept AS persons as contributors - something of a rarity - is to get non-AS people to accept that our "inability to cultivate friendships" is not a crippling condition to us. Once we have our one or two friends - friends as geeky and weird as us, generally speaking, we are done. My personal limit is two, and what NT's call "friendships," I now interpret as "Acquaintances." Yes, of course that has profound effects in terms of my ability to sustain a social network, and that has cost me many opportunities; indeed even jobs. I try and work things so that one of my two has the social skills I lack and the willingness to use them on my behalf.


Unfortunately, there is a lot of very bad advice out there and some very bizarre ideas as to what will be helpful to people such as I, who are on the spectrum and who are nonetheless potentially articulate and intelligent beings. Mostly this revolves around the idea that a bad job of conforming to the expectations of others is superior to a good job of being me. Here's Lennie Schafer on the topic of "fake autistics" like me.

(What about "high functioning autism" and how does that fit in? Simply put, it doesn't fit in anywhere. High functioning autism is not clinically defined and is not in the DSM-IV, and for good reason. High functioning autism is an oxymoron. If one meets the criteria for a diagnosis of autism, by definition one cannot be high-functioning. It would be as silly as the term sharp-eyed blindness.) (1)

So why would a handful of people, amongst a few others, who apparently are for the most part Aspergers, if anything, want to identify themselves autistic? Perhaps because autism is a profound disability and Aspergers is a disorder that is mostly not. Autism thus carries more moral weight than Aspergers and therefore has more moral clout for self-esteem building political and social agendas. "We autistics don't want to be cured" carries much more punch than "We Aspergers don't want to be cured", especially given the reality that there is no movement anywhere that seeks to "cure" those with Aspergers into being anything else.(2)

Aspergers-labeled alone, they would be ignored by the press and would be denied the juicy sense of empowerment that would come with a high-profile "oppressed minority" movement article like the one in the liberal New York Times. (3) (4)

The New York Times reporter failed to do a journalist's most basic homework. She failed to check the credentials of those doing the complaining, despite my urging. Anyone can call themselves autistic and write cranky letters to the editor. So how does someone determine if a person is truly autistic,or is an autism imposter with Aspergers? Ask to see their diagnosis. If someone claims to have autism for purposes of making some political statement, ask them to prove it. In any of the correspondence I have had with the autism "imposters", not one has ever supplied such documentation. (5) Of course, it is highly unlikely to ever see it. The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic.(6) Apparently more than one big city newspaper has failed to see through this deception, so eager are they to get an unusual victim story into print. Can we afford to allow the interests of our autistic children and everyone else "on the spectrum" to be pushed out of the public eye and displaced by a handful of imposters crying a contrived victimhood? Who speaks for autism? Not this bunch.

Note that he, and those like him don't like being quoted, even under "fair use" constraints.

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Of course, if I committed so many foolish rhetorical errors in public, I'd prefer not to be used as a hideous example either.

1. Argument from Authority. Of course, the process of determining what goes into the DSM-IV is pure and objective science .
2. Aspergers is, in fact an autistic spectrum disorder and has quite a range of effects. As a step-parent of a diagnosed Aspie, I'm very aware of the fact that there are very significant issues involved. They are not so inconvenient to US, as parents. They are going to affect HIM quite significantly unless we find some adaptive strategies that work for him.
3. As opposed to the entirely legitimate empowerment that comes from suffering the hideous, horrendous burden that is Autism.
4. Of course, it's a liberal thing to be concerned about the civil rights of children being abused and neglected for the sake of the convenience and social comfort of their conservative parents. This is the root host for "Autism, A Debilitating Disease, not a Culture," a page that links to both Free Republic and Free Dominion, while telling Canadians they a vaccilating, unpatriotic fools for not joining the "Coalition of the Willing." Snark aside, the fact that this site, is associated with Authoritarian Right Wingers explains a lot about the entire, very authoritarian "curebie" movement.
5. For myself, I want to see Lennie's MENSA results, his HIV status and full financials proving he's not unduly profiting from his activism before I deign to speak with him. I suspect he's unworthy of my attention, but if he proves otherwise, I will of course listen.
   
6. Factually untrue.

Unpuzzled is my most militant anti-curebie design, with the slogan, "help find a clue."

I know, it's rude and confrontational, but I've found that sometimes you need to swat people with a clue-by-four in order to startle them enough so they actually listen.

Those "seeking a cure" tend to ignore everything from those of us who ARE on the spectrum because it doesn't fit into to their mindsets, just as they reject "inappropriate" responses to communications from their autie and aspie children.

This is especially true of issues about communication style, reasonable accommodation and most importantly, the concept that a difference need not be AS disabling as it seems from an "NT" perspective. And, speaking as someone who's gone round and round on this at various times and under various circumstances, those who most boldly wave the "puzzle ribbon" seem at times to be making a point of their puzzlement, and their inability to understand to be the issue of auties and aspies.

See point above about how many friends and relationships an autie or aspie needs in an emotional sense. We do not absolutely require a relationship with the biological parental units. It's a nice thing to have, but we cannot and some quantity of will not be as easily coerced by family emotional ties as neurotypicals can be. This is not just because we have a "faulty" connection between emotions and reasoning. Our reasoning is not emotional, and our emotional responses seem to be quite different - across the board. Put two aspies in the same room and they will communicate quite well indeed - but their body language, topic choices and intuitive negotiations of "status" will be starkly different - and one of the greatest differences is the relative lack of huge tooth-bearing grins with full eye-contact.

To an aspie, to most sensible primates and all cats I've ever met, bare teeth and a full-on gaze is, at the very least, a statement of territorial or situational dominance, inviting a ritual contest of wills to determine who will be in charge and who will submit. Your typical aspie doesn't wish to play that game, having no need or real desire to join your pack, so if you do see them bare their teeth - it's probably in the context of a genuine, non-ritualized warning that Bad Things Will Suddenly Occur If You Do Not Go Away NOW.

What part of "Agggh! [flap flap flap] [throw object] LEAVE ME ALONE" is unclear to you people?

The "Unsmily" design honors the "aspie smile," a neutral expression that essentially means "hailing frequencies open." That look of slightly blank attention is a sign that an aspie or autistic is willing to let you talk at them for a while. Indeed, oft-times we are listening so hard that we are not thinking about what we will say next.

No pointless social noises please! Talk about something that is both objectively important and something within the realm of my interest and ability to have an opinion on. Make a full statement, then shut up and let me talk at YOU for a while. Then it's your turn.

Appalling, isn't it?

Well, that is the way aspies and auties communicate best - asynchronously. The full give and take of an NT conversation is difficult for us, and those of us that can manage it are doing it because we realize that style of communication is important to our NT friends all out of proportion to anything actually communicated. Mostly we grunt and make what experience has taught us to be socially appropriate noises at the expected times.

We are quite unlikely to put up with attempts to get us to conform to your expectations of what people like you should be. We are not 'like you,' and while we do very clearly appreciate that you have social advantages we do not, and we all understand that any parent would wish their child to have every possible advantage - we also know that many of those "advantages" come with a price. Some of those prices are ones we cannot pay - and for many of us, compromising who we are or being less than honest about what we know to be true is a price we will not pay - no matter how politically incorrect it may be to point out that the emperor has no clue.

Squd Rosenburg Has a Request.

Help Leelo's Local Friends

Leelo's Store Sticker (Rectangular)

Leelo's special ed department/occupational therapy department (i.e., special needs motor work) has no money to buy the kind of equipment they'd like; the kind that would really make a difference not only for autistic kids like Leelo but for all the kids in our city who rely on school district--i.e., public--support for their sensory and occupational therapy needs. Specifically the department would like to buy a scooter ramp as it will perform about fifty different functions in one compact space.

I said that I'd help. I said that if I invoked the power of the blogosphere, and got enough people to skip a latte or two (or five), there would be no way we couldn't raise enough money to get those kids their ramp.

So, feel like doing some good during this upcoming holiday season? I am trying to raise $757.90, which includes the ramp's purchase price and shipping. If we can raise the money by 12/20/06, it will be a lovely holiday gift for the special ed department. In fact you can even print out this page and tell your friends that you made a donation in their name instead of getting them a cluttery, tangible gift. A skipped latte's $2.50 is more than welcome.

Straight donations are great, of course, but I am also selling handmade Leelo coloring books at $20 each. The books feature the bold lines and simple rhymes that Leelo and his friends enjoy, plus scenes that will make any parent--but especially parents of autistic children--chuckle (or sigh) in recognition. All proceeds will go towards the ramp.

If you want a coloring book, go to the donation page, and click on the "contribute" button. You'll be redirected to PayPal. Put "coloring book" in your PayPal subject line, and don't forget to include your shipping address.

You can also help by ordering Leelo shirts and gear. A $10 donation is part of their purchase price. You can get Leelo gear at GoodStorm (t-shirts only) or CafePress (t-shirts, stickers, mugs).

I will add a further $10 donation from my own pocket if you send a picture featuring your Leelo gear to me at aba_help AT yahoo D0T com.

Here is the scooter ramp's description:

"This ramp incorporates a climbing feature with the addition of bilateral hand rails in addition to the rope attachment for hand-over-hand climbing. The ramp can be adjusted to 2 different inclines. Both ends of the ramp are beveled where the ramp meets the base and floor to give a smooth ride. Assembly consists of 4 wooden pieces held together with wing knobs. No tools ever needed. Easily disassembled and compactly stored."

Again, our deadline is 12/20/06. Leelo and his friends say Thank You! And please feel free to spread the word.