Hi Philip,

I've had all kinds of experiences with "assessments", though almost all of them were diagnostic. I've been assessed for services once, I think (I'm not sure what they were doing). This was a failure, in that all the promises which were made were broken. No one has doubted that I need services. But (I think I wrote this somewhere else), I'm mostly not competent enough to get the services I'm entitled to.

No one has studied all the volunteer work done by autistics. Someone should.

I'm also curious as to what the "assessment" you've been offered entails. I could not even begin to guess. Do you want to be diagnosed?

Good article about the Maine playground case, where Jan Rankowski, who is AS, was banned from a school playground for failing to be normal http://www.theforecaster.net/story.php?storyid=3002

Again, here is the mandatory functional behaviour assessment:

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Following the playground incident, the school said a new plan was needed to help Rankowski have a more “successful” time on the playground.

His parents refused.

Fitzpatrick said tweaking or adjusting the old plan should be sufficient, not ignoring the existing framework already in place.

“They had nine inches of information. What else do they need?” she said.

The town’s attorney, Melissa Hewey, said behavioral assessment was never part of the original plan submitted by Jan’s mother.

Hewey said the department is still willing to work with the family, but first wants Rankowski to undergo a functional behavior assessment to come up with a new plan.

“They didn’t have a behavior plan at all,” she said. “We need a plan here and if they have a different plan that they want to propose then thats fine, too. But we need a behavior plan.”

Hewey said a behavioral plan would specifically address certain types of behavior. She said this type of assessment could not have been built into the original plan because it requires examining how Rankowski acts on the playground and his individual functions while interacting with others.

“It looks at the behaviors and assesses how we are going to address them effectively,” Hewey said.
 
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I don't think it's Jan's behaviours which need to be assessed and addressed "effectively".

I love this from Jan's lawyer:

“This is not the legal standard. This child is not a threat,” he said. “If emotional concern was the standard, blacks would still be sitting in the back of the bus in Birmingham.”

<stands and applauds>

Also very competent NYT article re the mercury thing http://www.nytimes.com/2005/06/25/science/...m.html?pagewanted=1

"In recent months, the fight over thimerosal has become even more bitter. In response to a barrage of threatening letters and phone calls, the centers for disease control has increased security and instructed employees on safety issues, including how to respond if pies are thrown in their faces. One vaccine expert at the centers wrote in an internal e-mail message that she felt safer working at a malaria field station in Kenya than she did at the agency's offices in Atlanta."

Also recommend this in the NYT again re autism treatments http://www.nytimes.com/2005/06/25/science/25treat.html

I managed to speak with Gareth and Amy, they didn't have a healthy appetite for criticism though. I'm now banned from the AFF messageboard and chatroom. Amy was suprised to learn that from Arthur Caplan's quoted and official position, someone like her should be cured otherwise it's a tradgedy. 'An Autistic person who can't tolerate the world' is such a wide definition that it would include any Autistic with a diagnosis. Trouble is that there are plenty of non-Autistic people who can't tolerate the world either, yet are not pathologised automatically.

Edited by author 06-25-2005 07:58 AM
I took a quick look through the AFF forums that the public has access to. Oh, dear, I'm all washed up, they write (I'm shocked, shocked--but wait, can I retire now?). I think the important problem in the New Scientist article was Dr Caplan, the unscientific and unethical (when it comes to autism) bioethicist. Lucas, I disagree somewhat with what you wrote on the AFF forums, but I'm sorry to hear you were kicked off. I haven't been kicked off (I'm not a member), but I did make the error of inquiring about AFF policy, as it was made public.

Because AFF approached me, long long ago, I did for some time try to keep track of what they were up to. But Ms Roberts barred me from communicating with her when I wrote in reponse to AFF taking a public position re LFAs (this is not a specific-to-AFF problem and I've approached other groups also who have inaccurately portrayed LFAs). This is the letter I wrote (my one previous complaint had been *very* false information in the AFF Wiki about my work, which I couldn't correct, because someone kept erasing my correction):

-----------------------------------------------------------

Hello,
 
I hate complaining again, but I saw this in one of your forums,

_______________________
 
"Mr. Rogers,

I have become aware of your company's sponsorship of NAAR. I want to say I as most people applaud your generosity in trying to help other people. What you might not know is NAAR's distortion. We all want to help low functioning autistics (LFA) who are non verbal. But there is a group of High functioning autistics (HFA) out there who are verbal and highly intelligent and capable. I am among them. I have asperger's syndrome. We do not wish to be cured nor require one unlike the LFAs. NAAR consistently misrepresents us as sad deplorable human beings. We are not. We fear for our friends and family who are like ourselves. With your support, NAAR might one day develop pre-natal testing that would enable women to abort people like me who are simply different. It has been widely noted that Albert Einstein and Thomas Jefferson probably had asperger's syndrome. I am sure you would agree with me that it would have been a tragedy if pre-natal testing was a reality in their time.

We have a website that details our view at www.aspiesforfreedom.org

Thank you for your time."
________________________

I expected to see objections to this, but you gave your approval. Do you mean to say that people who are or have been (until what age to you allow?) "non-verbal" and have been designated "LFA" (by whose standards?) want to be cured?
 
See http://www.autistics.org/library/time.html , among many other articles showing the dangers of dividing and classifying autistics by "level" of functioning in order to suit various agendas. I've just made this point in response to ASC dividing autistics into good and bad to justify its actions http://www.sentex.net/~nexus23/naa_asol.html.
 
I remember when you first approached me, I expressed concerns about attempting to fight for "freedom" for "some"--whoever you decide "some" are--autistics. The above isn't just someone's opinion on your forum. It is a person claiming to speak for your organization. Maybe if you want a "cure" for "LFA"'s, you should say so, and explain what your criteria for autistics who need to be "cured" are. I fit the description of those autistics ASC, FEAT groups, and many others would have institutionalized, and have lived the consequences of this. I now wonder if your organization would also decide I am among the ones who must be "cured". Can you please clear up this point, so people know what your organization truly stands for, and who you are speaking for?
 
Thanks.
 
Sincerely,
 
Michelle Dawson

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That got me a lifetime ban from ever communicating with Ms Roberts, which I assume extends to communicating with her organization. I don't get it, myself. I particularly find offensive the conflation of worth with speech. I remain baffled as to what AFF stands for, and I'm not allowed to ask. I think they're too fancy and sophisticated for me anyway <plods around the circle again>

I can't actually view the forum at all because they don't ban the account, but the user hostmask and IP(which identifies specific computers and specific internet connections).

From what I can remember, I do wish I had concentrated on the issue of the bioethicist. But I do think that telling them how the journalist 'distorted the picture but without smudging the paint' was important and how they could have prevented that. There were anti-cure arguements featured that were not specified where they were coming from and with Gareth and Amy featuring most heavily, a reader will attribute those words to them. They say four or five Autistics were interviewed(likely the source of the unaccounted arguements) yet only they and one other actually featured.

Amy had some conversation with Arthur Caplan through e-mail. She thought he was 'nice'.

Edited by author 06-25-2005 11:24 AM
Hi Michelle,

Do I want to be diagnosed? On the want spectrum from 1 - very low desire to 10 - absolutely must have it, then my wanting a diagnosis is about a 3 or 4. I am happy with my self-diagnosis, but if I was offered the opportunity to receive a diagnosis I expect I would accept it.

In "The Word Is Out About Autism", I very much agree that "Autism advocates....have no concept of autistics succeeding as autistic people." But an advocate is someone who supports/argues in favour a person or cause. The autism societies and FEAT groups do not support autistics or autism. I would suggest the terms 'denigrators' and 'denigration' groups.

The quotations from Hall(litigation guardian of) v. Powers express very well the true purpose of Section 15 of the Charter, and what the right to be different really means. In which court was that case heard?

On Saturday 25 June 2005 05:02, QT - Michelle Dawson wrote:

> I took a quick look through the AFF forums that the public has
> access to. Oh, dear, I'm all washed up, they write (I'm shocked,
> shocked--but wait, can I retire now?).

What surprised me in that thread (I think it was the one anyway) was the idea that somehow anyone who's "criticized them" must be working together, appointing spokespeople, etc. Not to mention that Joel's article was taken as a direct attack on them and on Autistic Pride Day, which he didn't actually write it as.

In fact as far as I know he wasn't thinking of them at all when he wrote it, it was weird to see everyone scrambling to say "We're not like that!" when he'd already pretty much said that anyone who truly wasn't "like that" wasn't causing problems, just that people celebrating in a particularly elitist way were.

And no matter what they think, he didn't name them or AFAIK subtly mean them or anything else like that -- he's had a lot of experience in extremely broad cross-sections of the autistic community and was talking about what he'd seen in general pass for "autistic pride" some places. I think autistic people on the net (in general) tend to view whatever little segment of the autistic community they participate in as the autistic community as a whole. And many, many people fall into the trap of feeling attacked by things that weren't meant that way (AFF is the only place I was banned ever though, and it confused me because I thought the conversation I was having was wholly factual, and suddenly I was getting apologies demanded and finally got thrown off for asking what I'd done wrong one too many times... so my only banning in my life wasn't for losing my temper, it was for saying something that inadvertently got someone to think I was attacking them when I wasn't). Not just there though, a lot of people assume they're being attacked when they're not.

I'm surprised by the comments about Michelle Dawson being old news or whatever, though. I would think there's room enough for all of us -- including people we don't happen to get along with or like. But I'm strange that way, not particularly competitive, although competitive people will sometimes have trouble fathoming that I'm not, and thus perceive my statements as based in some kind of competition (and as representing autistics.org's spot in that "competition" or something -- I'm already fairly secure both about autistics.org and about my own place in the world, so I don't really feel a need to undermine anyone else no matter what they think I'm doing). I've had run-ins with more than one organization that thought I was trying to do something or other to sabotage them, and it just confuses me, I have no reason or desire to do that, but it seems like it's all some people think about. Interestingly when people start thinking that way they actually start doing things that cause me to say negative things about that aspect of them, and then their idea that I am "attacking them" is confirmed (in their minds). Has happened more than once, in more than one place. Seriously, it's not like I don't have anything better to do.

I've just responded to a parent on another board enquiring if any others have tried Secretin. I did point out that Homeopathy as a whole is an unproven and often debunked science(I reckon some scientists made their name just through debunking without actually making any discoveries themselves).

I also mentioned that I would find it deeply hilarious if it weren't for the extent of the suffering, that some are given medication and then actually suffer side-effects from a pill which isn't supposed to do anything. So I do question if it is just a capsule filled with diluted water.

Hi, Michelle,
Re: The Word Is Out About Autism

You have a way with words! (I usually say that to my "detractors!" ... ) I "fundamentally" agree with you, what you're saying, though, Michelle? ("yeah!" Michelle! ... of, as for, the "Individual," I Feel! [Yes!] ...). I'd almost entirely agree with you, except, perhaps ... with your omission(s) (sins of omission(s)? ...) "not" for understanding, more (?) re: to objectivity/a greater objectivity/ True "Objectivity?" [to understanding, more...]. ;=)

I'm there!/here ... (!) (stay with me people? [!] ...). It's of Us, All, (of Us ...) Michelle, people, Humanity! that you speak, or really "should" speak, truly, of, as for, I Feel! ... Autistic, NT, and otherwise ... (!) Welcome aboard, that! ... (The "peace" train? ... of the Individual ...)

I swear, many "articulate" people are autistic (as of that? "their" nature?! ... ;=))) and don't even know it! ... Doh? (!) ... ("We" got issues! all of us, people ... ;=)

The Word Is Out About Autism, and The word is Understanding! ... Refer to me (or that ...) for that?! ... Please do! ... ;=)

Mike,
I ABA
ABA for Understanding. ("NOT" officially! ...)

Lose the "officiating" language, first? (Please, do! ...) all of you/us ... for "true" communication! [to happen ...] otherwise, you, "we," won't be any better than our adversaries/our selves?! ...). ;=)

Talk to God as if He/ "It" were there, for you! ... interested in you, and listening ... (!) with "respect" ... (for that ...) and you, too, would get All The answers you "need," thereof, of what you Feel as understand. You want (ed) to know (It) that (?) ... I Felt, by this ... ;=)

missionary of Understanding.

For clarity, Mike of /m1969 isn't (at all) the Mike who more usually hangs out at TMoB. Their writing styles are different. So is the content.

For even more clarity, or maybe for perspective re his message, Mike of /m1969 can also be found here http://www.dttrainer.com/forums/index.php?...ic=19&st=0&#entry35 as well as elsewhere on the Internet as "Canadian home distributor-reseller and service facilitator of the Discrete Trial Trainer, an ABA (Applied Behaviour Analysis) based software solution for early and special-needs learners under the developmental age of 9."

I could be mistaken: the world could have two "I ABA" Mikes, but probability is on my side.

I don't know how, but I am gradually starting to develop some understanding of Mike's novel English. It's certainly easier than what I found French in my first year of secondary school.

Re /m1967 , yes, some of this is what I described as being too sophisticated for me. That would include assuming that there is some organized faction out here, complete with spokespeople. That would also include the competitiveness thing, as in "We're relevant and you're not". And it would include the notion that autistics who are overtly doing or writing one thing are really doing or writing something else.

I'm not sure about other autistics, but I'm totally dependent on autistics and non-autistics who are good at things I'm lousy at (there being no shortage of those). I've never understood (as I've written here recently) why accomplishments by some people would somehow diminish other people. I'm in awe of what other people, autistic or otherwise, do well--and I for sure need good examples to follow, and people who can teach me and supply me with the merciless criticism that I supply to others.

Hi Michelle, Lucas, others ...

[Harrumph? ...] You've got it! I get it from the kids! some of it, "probably." Who knows! for sure? ... We can work it out, though, "together" I Feel. Keep up the good work in this/that respect ... Keep it open, honest and "objective" ... as you (relatively) do well, try to do well, and do even better at it, if you can ... (!)

But try to be more open-minded about ABA, and how its attributes are a lot like yours? ... ABA is open, honest, objective, reciprocal and considerate, by design. It's understanding by necessity, of attention, observation and analysis, of what the student needs and demands.

"What" people teach presents a bigger problem with "other" methods less connected to "how" they teach. How we teach (with ABA) is significantly what we teach and what we teach is what we learn, or should learn ... in this respect of being a better teacher-STUDENT. It's a lot of work, that, that pays the bills, and gets The job done. ;=)

Mike

Hi Philip,

I hope that the assessment, diagnostic or otherwise, is a truly good experience for you.

My experiences with diagnosis and its consequences have been so extreme that I don't have a real opinion about the merits of having or not having a diagnosis. Being diagnosed drastically altered my life in ways impossible to foresee or even imagine at the time(s) I was diagnosed.

Re "autism advocacy", yes, I understand the problem. It is the same problem with the "autism community", the one largely and deliberately bereft of autistics. You would assume that an "autism community" would be teeming with autistics. I certainly did, long ago. I learned via the CARW that the "autism community" not only did not actively include autistics, it was prepared to actively exclude us. But this makes no more sense than a black community composed of white people (and perhaps of black people trying to be white).

Here is the "autism advocacy community" http://www.medicalnewstoday.com/medicalnews.php?newsid=23170 uniting to combat autism. This community is defined as CAN, NAAR, ASA, and Autism Speaks. Here is Sabrina Freeman's book company promoting "autism advocacy" http://www.skfbooks.com/

Sometimes I agree with Phil Schwarz that these phrases have to be taken back from their distorted meanings, and that we should not have to make distinctions like "autistic community" and "autistic advocacy". I agree this would be ideal, but until the world is set right side up again (by Mr Schwarz and/or others who have the organization and competence to take on these issues), I'm going to notice things aren't ideal, and improvise. This includes trying to point out that "autism advocacy" as it exists right now has nothing to do with helping autistics.

Hall(litigation guardian of)v Powers was heard in the Ontario Superior Court. I think I've posted this link before http://www.egale.ca/index.asp?lang=E&menu=72&item=291 , which describes the hearing. You can follow the links at the bottom, for excerpts from the decision, and for a press release following the decision.