Ed: In Need of Fixing

Some blog posts are more important than others. As any Hub reader knows, there are reams of Facebook style socialising blogs mixed in with more substantive pieces. I don’t begrudge the need for the social dimension usually, unless I could see that the whole thing might descend into social group think of the calibre of the Autism Speaks message boards. Given the numerical presence of autistic bloggers on the Hub, that seems to me unlikely, so it’s not really an issue except for some due vigilance to ensure that the actual autistic presence remains very high. Otherwise very important posts, like the following may be marginalised.

Ed of ‘Ed’s autism page’ wrote a post by invitation for Christschool’s blog , titled: “In need of Fixing”. The subject matter – abuse of people by systems supposedly designed to aid and treat them can really only be adequately addressed by someone on the inside, like Ed or like Amanda or a few experts who know very precisely what goes on, but much more importantly for the likes of you and me who are so insulated by lack of experience, these folks are coming up with cogent arguments about why these abuses happen. Not a thing is going to change unless the dynamics become transparent. For me, Ed’s post raised a large number of points that really made me think about this, and those points are what I’d like to focus on. Naturally, this post is simply to encourage as many folks as possible to read Ed’s post in its entirety and gain their own insights. So to the points in no particular order:

• The way that we (the public) know that Republicans are behaving inappropriately is because Democrats reported or make sure that it gets reported. The way that we (the public) know this about Democrats is because Republicans make sure of it. Without this competition how would we know?

Sounds simple enough, but how often do we note that only in truly equivalent power structures, is oversight actually going to work? So the first question for any system is the equivalence or lack of among the elements. I think the conundrum of the JRC could be explained quite well if you have a closer look at the supporting structural elements.

• The reason that some violations of public officials who aren't a part of the Republican/Democrat system are hidden from the public for a longer period of time is because those who set regulations and are thought by the public to be enforcing those regulations choose to conveniently ignore or look the other way. They also often knowingly contribute to the problem and are in positions to set and enforce regulations for the very purpose of protecting the violations and the violators within their same (or a similar) branch of government.

This is probably the main point and well supported by the many references Ed gives. ED goes on to elaborate some of the reasons why the regulators are not regulating. Among which:

• Whether authority comes from parents, teachers, or someone who is granted this authority by the public, what should be responsibility is too often seen as entitlement. Direction and guidance too often becomes unnecessary control and manipulation when regulators don't get regulated.

If I have this right, then what gets done is what can be done and that does not have to bear any relationship with what should be done. What enables the moral vacuum between reasons and actions is that no one is regulating the regulators. Perhaps a hopelessly naive question, but shouldn’t all this be perfectly well known, since people have done lots and lots of work on systems and the corruption of systems, which strictly speaking, human rights violations by regulators would fall under?

• When every behavior is seen as an emotional response and gets critiqued as unsophisticated, populations of people have their values made obsolete. If on the other hand behavior is seen as the result of a mental or spiritual defect it may become more convenient to dismiss that very same population of people as deserving of being ignored and other more severe types of punishment.
Rationalisation 101 and note the two ways to do it. Ed made a point that really got to me on this aspect of things:

• The understanding of this dynamic begins with the acceptance that the US Mental Health System was never intended to provide for the needs of its consumers. It was designed to meet the needs of the public. It is a type of corrections Department where punishment is the primary method of enforcing behavioral standards.

Now we can see the necessity for the rationalisation.

• I've noticed that oppressed groups are often taught that they do not and cannot understand the sophisticated language of their oppressors. I've seen that often when people were taught that something is beyond their capacity for learning they don't put many efforts into finding out whether this is true or not. Sometimes people's liberation is really not as far away as they are taught.

Just thinking how much of a step it would be to even begin to question the status quo as delivered by the system. Also thinking how many never get anywhere near that step.

• I have also noticed that people who are caught up in the oppression of others sometimes have little understanding of what they do and how it is oppressive because their scope of understanding is limited to a realm where oppressed populations are not allowed to express their experience.

OK, this was a real eye opener for me, never ever having come close to imagining it. I keep thinking of the essay “The Smile”, which I can’t find back. Is there a single oppressive system of any type which is not maintained by that ‘limited’ scope of understanding?

• I believe behavior is seen as the cause of (or what needs fixing in regards to) learning disabilities, psychological and psychiatric problems, and certainly many neurological problems as well. I believe that one of the main reasons that autistics are treated more severely within all these classifications (which I have been described having all of them at different times since birth) has a lot to do with how what is all too quickly determined as misbehavior is treated with the worst forms of punishment. In a typical institutional environment, I think autistics are the least adaptable to these harsh environments which can lead to a cycle of gross misunderstandings and the worst kinds of treatment.

This total emphasis on punishment as the naturally deserving outcome for institutional residents is more than a bit disturbing. It is of course, the way the JRC is run, which makes that institution in the scheme of things, just one more institution, albeit with much more formalised punishment regimes. For the rest, it seems that the same structural elements that defy regulation in other institutions are at work here as well. There are no equivalencies of oversight, so that never works no matter how many complaints and/or attempts at regulation are made. The parents do not want their children back, so they will rationalise anything on the grounds that ‘you didn’t know Caroline before’. The fact that Caroline remains essentially unchanged doesn’t count for much. The regulatory authorities don’t want to upset anything either. Every time JRC does something outrageous, on top of their endemic torture regimes, that is, the authorities cave. After all, for them it’s a good deal and reasonably economical. Matthew Israel is nothing if not a good marketer. Basically he’s said – leave your very worst behavioural cases to me and I will look after them for a price you will be able to pay. And he does. There’s a reason for using punishment. It’s cheap because it’s simple and any fool can do it. Combine with computerised instruction, which doesn’t require teaching qualifications and the whole show can be run by a bunch of high school drop outs. Profits will flow and everybody benefits, except the clientele. But as Ed points out, the system is not set up for them.

There’s a lot more in Ed’s post that I haven’t mentioned and that’s because these are complicated ideas that I’m working my head around.

Autism Omnibus PSC, Whose side are they on?

Sullivan, writing for LeftBrain/RightBrain has a post lamenting the poor performance of the Petitioner’s Steering Committee of the Autism Omnibus on behalf of the parents. Feeling that as the AO was a going concern, the PSC should be doing the best they could for their clients, such as noting as others have done before them that there are cases where compensation has been made where autism was also involved. OK, it’s not applicable to more than a few maybe, but since they were so willing to extrapolate Poling, why not these cases?
In any event, I’ve been wondering just what the PSC is doing in light of the very short but also damning testimony proffered for Colin Dwyer – all in one short day.
First up – Dr Mumper, whose basic testimony has all been seen before, but here’s a few twists. Led gently into the ring by PSC lawyer, Tom Powers, Mumper was quick to stress that the Dwyers had done everything possible financially to assure Colin’s continued treatment and improvement. However, the concern for financial strain on the family didn’t go quite so far as assuring that very expensive tests were carried out by an accredited laboratory. So, the family is out of pocket to the tune of thousands for no gain, because there is no reason to assume the lab knew what they were doing and who would trust results from a non accredited lab? Why were they sent to a non-accredited lab in the first place? Second, it suddenly comes to light that urine test results are ‘provoked’, but the reference ranges are not. Kathleen has a really thorough post on all this. So, Mumper is left looking counterfeit and clueless and the Special Masters have noted that the results are worthless.
Second, a quick plug for the paper of Young and the Geiers is put up by PSC lawyer Williams, but look at how he did it. Here, says Williams, is a paper that shows a causal relationship between TCVs and autism. Directing the Special Masters, he then goes on to advise, that though they may distrust the Geiers, it was really Young’s paper and all the Geiers did was provide ‘access’. Kaiser Permanente who own the data may have something to quibble about with the access issue, but the main point is that a PSC lawyer told the Special Masters to just ignore two out of three authors on one paper because there may be a trust issue there! What are they doing? Perhaps point three may add some direction.
Powers, on all occasions, has emphasised the ‘dynamic’ nature of the ‘scientific evidence’ regarding TCVs and autism. Never mind that Marcel Kinsbourne’s neuroinflammation theory first saw the light of day a few weeks short of the commencement of the AO. But then these guys are heavily into the ‘plausibility’ in place of ‘probability’. So, as predictably as the sunrise, the PSC is assuring the Special Masters that they cannot possibly come to any conclusion because two very important ‘expensive’ studies are due to be published in September. But in any case, says Williams for the PSC, the Special Masters may assume that the studies will support the PSC! At that point, I wondered if I’d misread Holland’s transcript, but no. So, who is the PSC representing?
Not the parents; some of the lunatic statements on this day of testimony demolish any pretension to being there to serve the parents. They’re there simply for themselves and as much of that $2.4 billion they can get hold of. Their tactics have not changed in the least. It took six years to get the PSC to the table and they complaining all the way that the studies just were not there. Haven’t got a good theory, go for the newly minted variety produced by a guy noted for 30 appearances in vaccine court and one paper in a medical journal. String it together with as much speculation as necessary and hold off for as long as possible. The longer this drags out the more in billable hours, expert fees etc is available. The real losers in this have always been the parents. Vaccine court personnel can be irritated by what they hear, but that’s a passing thing. For the parents, who is going to support their autistic children in the future is no passing phase. No doubt Powers et al will have concocted a convincing tale why Vaccine Court will not be that support, in the very likely event that it concludes that autism and vaccines have no association. As I recall, Powers laid some of the groundwork for that on a recent Autism One program.

Queer Goings on at Queens. Supporting the FAAAS agenda?

25 July 2008

Dr D Walker
Dean
Faculty of Health Sciences
Queen's University,
18 Barrie Street,
Kingston, Ontario K7L 3N6

Dear Dr Walker

Researchers pulling back the veil on adult autism is the remarkably misleading title of an article published in the Vancouver Sun on July 20 and prominently featuring Dr Deborah Elliot of Queens University. I attach a copy of the article's text for your reference.

This article purports to be all about research outcomes in adult autism. In reality it is a series of unsupported ugly statements promoting the worst stereotypes of autism to be found anywhere. Some were contributed by Dr Elliot herself, among which:

“They may be able to get an advanced degree, but once employed they can't interact with their co-workers in a normal way. There's no normal coffee chit-chat, Elliott explains. They sometimes ask embarrassing questions and easily lose their tempers.”

The sheer superficiality of this statement leaves me breathless. However, my real concern is that future employers and others who may relate to my offspring will have read this unbalanced piece and her life will be that much harder. For the record, lots of people make embarrassing statements and lose their temper. They have no label. Further, there is a good case to be made about the abnormalities of 'normal coffee chit chat' given the frequency of backbiting, character assassination and any number of pathological outcomes

“But they often don't come to the attention of mental health experts until they're reprimanded at work for making an inappropriate comment, or charged with harassing or stalking.”.

Dr Elliot is claiming a serious confound for adult autism, namely harassing and stalking behaviours, which has no research support anywhere. Again, my chief concern is for the future of my offspring who will have to deal with these manufactured prejudices. It appears that the author of this piece has used Dr Elliot and by extension Queens University to give credence to the most sensationalist and thoroughly unsupported statements. It does not appear that Dr Elliot read the finished article. Otherwise, how could an academic with any reputation condone the following glib offering?

“Or the office clerk who beat up a woman on his way to the bus stop one morning for the simple reason she was in his way. He was obsessed with not walking on the cracks between the tiles on the sidewalk. “

This suggests rather strongly that adult autistics are likely to beat up any mere stranger for no apparent reason. Simply to leave such a statement in an article is to peddle prejudice. How does anyone know the reliability of this account? The journalist is no guide. She has taken as her source, Karen Rodman of FAAAS (original title: Families of Adults Afflicted with Asperger's Syndrome). FAAAS is simply a hate site, replete with innuendo, anecdote from dubious sources, liberally mixed with the glue of garden variety spite. Dr Elliot could have taken some care not to be seen in the same article or at least, not to endorse some of their more extreme positions. This article likes to portray violence as a feature of the autistic profile and it is a common enough gambit among budding but unscrupulous researchers and journalists. I refer you to some real research on the subject - Murrie, Warren, Kristiansson, & Dietz, 2002 and Barry-Walsh & Mullen, 2004. There is no connection whatsoever between violence and autism above what is to be found in the general population.
Imagine my surprise to see the following profile of Dr Elliot as a research participant for The South Eastern Ontario Community – University Research Alliance in Intellectual Disabilities.
“Her interests include advocacy for vulnerable populations, including people with disabilities, the homeless and people with severe and persistent mental illnesses “
The hypocrisy is self evident.
I and my autistic offspring, indeed the entire autistic community would take it as a great favour if Queen's University and the research consortium would withdraw its support for this article's gross mischaracterisation of a very complex condition and notify the paper of such. The editor's details are as follows:
Patricia Graham
Editor in Chief, Vancouver Sun
Address: #1 - 200 Granville Street, Vancouver BC V6C 3N3, Canada
Phone: 604-605-2318
Fax: 604-605-2668

This article and Dr Elliot's participation in it are in direct violation of Queen's University's own policy statement on harassment and discrimination, a fine irony given Dr Elliot's assertion that harassment is such a feature of autism.
Yours sincerely