Saturday, June 14, 2008

Agendas Matter

I know that many ways of describing any spectrum can be empowering to everyone who has been otherwise mistreated, wrongly evaluated, and misunderstood. I too often see ways that people counter this view of the autism spectrum with the claim that the inclusion of too many people being described on this spectrum makes things difficult for those who are more autistic being evaluated or treated appropriately. I have experienced the opposite as being true.

The best way I can describe this is that from what I've seen, when a treatment is thought of as being needed by people who also need to be sympathized with, the treatment isn't sympathetic at all. It's actually just pathetic at best, but usually it's worse. There can't be too much of an understanding for who people are, and what they may be experiencing to better know how to treat them with respect.

The next step after identifying more autistics needs to be to provide more realistic supports for students by being able to better identify how they learn and what they CAN do best. Also, the number of ways that I think the autistic label can be empowering for all autistic people is limitless. Unfortunately, western medicine and the most recognized western belief system that I refer to as "The Church of Modern Psychology" often make sacrificial lambs of anything or anyone they can use OR that stands in the way of what they call progress. Sometimes it's either one of these and sometimes it's both.

I don't think that the benefits of any progress can be properly evaluated until or unless people also take a close look at what kind of progress is really being promoted and what wrongs are being justified in what is considered a progressive ideal. It is equally important to look at what ways people may be being abused in order to make what is seen as progress look good.

Something that I feel is very important is that while I understand the need for teachers and employers to describe a person based on an evaluation of how well they can perform, I see little if any reason for anyone else to evaluate people this way. I see no need for anyone else to describe anyone as low functioning, especially if you don't also specifically describe what areas they are less and more capable in. The term low functioning too often seems to reflect someone's view that a human being should only be defined by their ability to function within overly strict societal evaluations.

This term often seems to imply that a human being is in a static place and won't grow or change (which actually seems worse to me than the way the term retarded was originally meant to describe someone as being). Of course, if this really were the case what else would autistic people need to learn how to do other than learn to tolerate standing in line for the latest medicine or therapy?

Here are several examples that I see as other times that more needs to be explored to make better decisions:

1) I have many personal reasons to disapprove of how psychiatric medicine is used inappropriately by the pharmaceutical industry. Few positive changes are made to medicines or therapies within a really old and really bad mental health system. This system was never meant to serve patients or consumers. The public outside of that system is who it's designed to serve.

However, it bothers me a great deal when someone says that all psychiatry is inappropriate and should be abolished without taking into consideration how the people who are dependent on those medicines would be affected by this abrupt change. Such views actually support the current system rather than encourage positive, effective, and lasting change.

If you abolished all psychiatric medicines tomorrow without careful consideration of all the people who are taking these medications and what alternatives will at that point be available to them.... well, I just think lots of careful consideration should be given as to the consequences of such changes.

2) I consider taxes on cigarettes in a similar way. While I don't know how many people actually quit smoking due to the cost, I know that those people who are already the most disregarded by society pay the highest price for the higher taxes and price increases. Those who pay the most or are most affected by price increases, have seen how this has directly caused violence and even killings. I think that better ways to discourage cigarette smoking needs to be explored.

Again the agenda is disguised to create positive change but that's not what I think it really does.

3) I can see how someone who works in a factory may be more concerned with the paycheck they use to eat and to feed their family than about the environmental toxins that their factory also produces along with its products. That doesn't mean that environmental issues need to be ignored, but it does mean for me that people are our most valuable resource and should be considered above everything else.

Causes often don't have the best goals and sometimes their goals are really bad.

The point I'm wanting to make about more careful consideration as it relates to autistic people is that when it comes to providing the best for autistic people what you try and how you try it needs to come as an addition to first seeing people as people. It's also important to look at the trends of how autistic people are being seen by the treatment and therapy promoters and make sure that this is their top priority. For instance, most institutional behavioral treatments I've seen were not focused on this at all (to say the least).

If a label is being used to encourage and promote what's best for autistic people that have similar characteristics or even symptoms (if they must be categorized as such to acquire and maintain supports) then I feel the label is being used for the best purpose. However, when people start adding too many extra symptoms, purposely trying to make those symptoms sound as terrible as possible, and claiming that they are presented this way in the majority of autism cases for the purpose of creating one-size-fits-all programs for medical and behavioral treatments this automatically makes me suspicious of what the real motivations are for these program and treatment providers and their promoters.

This is when I think people need to carefully evaluate whether those whom they look to for answers and support for themselves or the autistic people they care for really have their goals focused on what is best for autistic people who are in need of support rather than on another agenda that may just be disguised that way.


At 3:32 PM , Blogger Autism Reality NB said...

I have a son who has an autistic disorder diagnosis, assessed as profoundly developmentally delayed. He is low functioning. I use the term because it is an accurate description of his disability level. Amongst other challenges are those faced by his lack of understanding of real world dangers and a lack of ability to understand the world around him generally. Nor does he have a substantial command of language. He can not host a blog site or write essays like you can. Arguments over terminology like low functioning are beyond him and yet they are inconsequential compared to the challenges he faces.

With all due respect you have no right to try and infringe my free speech and my ability to represent my son.

At 4:11 AM , Blogger Ed said...

What have I written that suggest to you that I'm trying to infringe your free speech?

At 8:48 AM , Anonymous enyal said...

Thank you for writing this.

At 11:55 AM , Anonymous CS said...

Harold is a bigot Ed. He assumes he knows everyone's history and if it interferes with his "reality", he doesn't attempt to seek a better understanding. Harold's world is full of hate for others. I'd much rather be autistic than Harold, any day. I know of someone that attended the Orthogenic's School and suffered under Bruno Bettleheim that isn't allowed to post on Harold's blog because he challenges Harold's and I should mention Jonathan Mitchell's assumptions. There is no reality in Harold's world and it is a bit ironic that he includes "reality" in his blog name. Harold is JB with a JD.

At 6:23 PM , Blogger jonathan said...

This comment has been removed by the author.

At 2:28 PM , Blogger shiva said...

I'd like to point out that abolishing the institution of psychiatry does not mean abolishing all "psychiatric medicines".

As a cognitive libertarian, i believe that everyone has the right to take whatever mind-altering drugs they want to, at their own discretion, not that of a doctor. In this i see no meaningful distinction between those substances that are currently classified as legal or illegal or as "medical" or "non-medical".

While i think that dependency on such substances is a problem for many people (whether that substance is Prozac, Ritalin, nicotine, alcohol or heroin), i do not think that coercion or prohibition is an ethically acceptable way to deal with that problem. I also think that if a person takes any of those substances, and finds that their mental functioning and/or happiness is greater as a result than it would be without them, then there is nothing at all wrong in that situation, regardless of whether the legal and/or medical establishment approves.

This i think is about the only logically consistent position other than total, blanked condemnation of *all* mind-altering drugs, which fast reaches absurdity when you try to actually quantify which drugs affect "the mind" and which supposedly don't, as it depends on an absolute mind/body dualism which is simply unsustainable in the face of even a moderate understanding of science.

Amanda Baggs has demolished "autism reality NB"'s argument with consummate ease so many times over that it really isn't even worth bothering to argue against...

At 3:45 PM , Blogger Ed said...

These are good points Shiva.

I don't disagree with anything you have said and this does factor into what I was meaning to point out with that example.

I've seen people on the streets selling lithium for wine (as I've heard such trades refered to). Under the circumstances few people anywhere care one way or the other about that.

What concerns me most is how psych meds are used on people to do what is claimed to adjust their behavior or create tranquility when it really has little if anything to do with that at all.

Within the system I'm a part of, an institution run by a state for example has no restrictions over what for others is considered a thereputic dose that they prescribe for what they consider emergencies. Many are seen as being needed to be treated as though they are in an emergency for years.

The system is said to be designed to protect the public but it's designed to basically deal with all types of undesirables.

Weather someone needs meds or not or weather or not when they started out needing them is not often considered. Being dependent on these meds has nothing to do with withdraw. There are many factors to consider.

The advances that have been made from such older meds like haladol to more current meds like seroquil are quite small in relation to the advances in other types of meds and this reflects how this population is thought of by the public.

At 2:30 AM , Anonymous CS said...

"The advances that have been made from such older meds like haladol to more current meds like seroquil are quite small in relation to the advances in other types of meds and this reflects how this population is thought of by the public."

Ed, that's an extremely important point that I've never thought about.

At 7:20 AM , Blogger Ed said...

Yeah C.S., I wish that people considering that alone would alert them to what some of the agendas of that system are that have nothing to do with a patient's well being.

Psychology was once more of an elite way of expressing and thereby perpetuating people's molo-dramatic lives.

Some others with less monetary means were sentenced to what I call dungeons for being described as mentally ill.

The current mental health system that incorporates the new form of psychology is too often more of a quick way of pinpointing and medicating undesirable (what were once considered) personality traits for many and a quick to be sentenced to being deserving of punishment for others.

This behavioral management societal tool is funded by the ones with the fewest resources to pay for their own marginalizing.

I think we need to reject these convenient branding terms such as low and high functioning and focus on our own (everyone's) liberation.

Judgments of high and low functioning either one can and do lead to brands of valid and invalid functioning and with time fewer and fewer people will make the cut.

The rules can change in a completely random way to accommodate those who define how the cut is made so that they have little to do with how we currently define high and low functioning.

At 7:27 AM , Blogger Autism Reality NB said...

"CS said...

Harold is a bigot Ed. He assumes he knows everyone's history and if it interferes with his "reality", he doesn't attempt to seek a better understanding. Harold's world is full of hate for others. I'd much rather be autistic than Harold, any day. I know of someone that attended the Orthogenic's School and suffered under Bruno Bettleheim that isn't allowed to post on Harold's blog because he challenges Harold's and I should mention Jonathan Mitchell's assumptions. There is no reality in Harold's world and it is a bit ironic that he includes "reality" in his blog name. Harold is JB with a JD."

Thanks for that outburst of hatred "CS". You substantiated none of your allegations but you painted a very clear portrait of yourself. I assume you feel the same way about anyone who disagrees with you.

Harold Doherty

At 7:31 AM , Blogger Autism Reality NB said...


What argument has Amanda Baggs demolished? And can you provide a link to an example of where she did so?


At 7:43 AM , Blogger Autism Reality NB said...


You are trying to dissuade people from providing honest and accurate descriptions of their children's autistic disorders alleging the existence of agendas on the part of anyone who uses candid language to describe the negative aspects of their children's disorder. Not as obvious as CS's wild "bigot" accusations but very similar.

Not one of you posting here has the same challenges with language as my son or some of the autistic people such as the middle aged autistic woman in a NY residential facility who could not communicate the fact that she was being repeatedly assaulted by the staff. Tiffany Pinckney died in Toronto without being able to tell the world of her horrendous treatment by her step sister.

I fought to keep a tertiary care service for autistic people operating here in New Brunswick Canada. The center uses behavioral methods to teach severely autistic children to refrain from serious self injury some of which caused brain damage. Those are realities that exist outside of the "Autism" Hub blogosphere.

But you are of course free to fret over high functioning vs low functioning labels and other issues of monumental importance while others actually provide help to the severely autistic.

Harold Doherty

At 9:15 AM , Blogger Ed said...

And host this blogsite I will.


The 1st comment that you made on this blog post was an unfounded and disrespectful accusation of me and my words. Those accusations remain unfounded.

I believe you are correct about CS and I using different methods toward the same or a similar goal but you have not accurately defined that goal at all.

I have never heard of anyone claiming that my approach or anyone with a similar approach or view as having disssuaded (or tried to)anyone from being honest and accurate about anything such as you claimed.

You have not described anything about my agenda or reason for approaching the subjects that I do (or where those views come from) in an accurate way or a way that encourages me to disclose more or defend myself against those unfounded accusations.

Your freedom of expression on this blog is not pending based on you agreeing with me but rather it is a privilage that you must earn by treating (and continuing to treat)others difference in views with respect.

If you cannot be more forthright and respectful with your comments it is within my discretion to deny you that privlege and sensor your comments.

At 3:22 PM , Anonymous CS said...

"Thanks for that outburst of hatred "CS"." Why Harold, your quite welcome. Any time you need someone to stick a boot up your ass, let me know, I'll happily oblige.

You come onto this blog, and try to "sucker punch" a very gentle man who has had more hardship in his life than you could possibly imagine. You sir are a bully and an abuser. You are also a coward.

Ed is a gentle soul who has every reason to be angry with society and with people like you. But Ed always takes the high road. However, I'll get down in the weeds with you, you petty little gutter snipe.

I'm often in Canada on business and I would be happy to give you a little sucker punch as well, you scum of the earth. Take yourself and your whiney pathetic dung comments back to whatever cesspool you crawled out of.


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