Tuesday, April 14, 2009

More nonsense from ASAN

I see that my friends from the autistic self-advocacy network are at it again. This is the organization that was famous for pressuring the autism clinic in New York to eliminate the ransom notes campaign for the language that they perceived to be insulting. Also, they are well known for the statement that Ari Neeman, their president, made on the Good Morning America television show, "being anti-cure is not being anti-progress". Though it is puzzling to this blogger how eliminating the ransom notes was any sort of progress that could be substituted for a cure. More on that later though.

In this instance, a lady named Meg Evans who states that she is autistic, yet is high functioning enough to be married takes umbrage at the language used on the Cincinnati Marathon web site that is used to raise funds for autism. Ms Evans states:

On your front page, promoting the Run/Walk for Autism, there is a comparison of autism to cancer, diabetes, and AIDS, which misleadingly causes people to view autism as a disease that their family members are at risk of catching

She further goes on:

In fact, autism is a developmental condition, not a disease; it does not make anyone sick or kill anyone, and it cannot be acquired from contact with autistic people. Comparing autism to deadly diseases such as AIDS can cause uninformed people to shun autistic individuals out of a groundless fear that they or their family members will somehow catch autism. For the same reason, autism should not be characterized as an "epidemic," which is a term that usually refers to an outbreak of contagious disease.

Let's view each of these statements in context. On perusal of the run for autism organizer's web site we see that the only comparisons made to Cancer, diabetes and AIDS are the citing of the CDC's 1/150 prevalence number for autism and stating that autism is more common than these other conditions. I am not sure that this is saying the conditions are analogous. As far as someone "catching autism", the only one of three conditions cited that someone can get with contact with another human being is AIDS. AIDS can only be transmitted through sex or a blood transfusion, it is not like transmitting a cold or a sore throat, so we see a very specious comparison on the part of Ms. Evans. Even if there was a comparison of autism with AIDS in the fact that they both could be considered medical conditions, certainly no one in their right mind would read this statement and conclude that someone could catch autism.

Ms Evans also goes on to state that autism is not a disease and that autism should not be viewed as an epidemic, because the term epidemic is used to connote outbreaks of infectious conditions.

My dictionary defines disease: A condition of the living animal or plant body or one of its parts that impairs the performance of a vital function. The fact that autistics often can't make a living, in the more severe cases, can't speak, can't fend for themselves, have uncontrollable behavior that causes them to get into trouble or self-mutilate certain is the impairment of a vital function, so i must respectfully disagree with Ms. Evans' definition of disease.

My dictionary defines epidemic: 1. affecting or tending to affect many individuals within a population community or region at the same time. excessively prevalent. I do not know if the prevalence of autism is actually increasing or not. As is the case of neurodiversitites, I do believe that at least part of the increase is due to more people actually being diagnosed than were diagnosed before and not necessarily a real increase in the numbers; however, that is neither here nor there. The point is, that an epidemic can be used to refer to an increase in any phenomena, not necessarily a medical condition.

Autistic people are largely unemployed. The problem of celibacy and loneliness does exist for many of us. There are problems with housing, self-mutilation, phobias and academic performances. How, this current crusade of Ms. Evans' How Ari Neeman's pro-progress, anti-cure metaphors are helping anyone with autism is beyond me. I won't attempt to speak for most or all autistics as many neurodiversitites seem to have an inclination to do. However, many of us do suffer, many of us have the problems stated above, myself included. This is in addition to the perceptual motor deficits that I have (which I realize not all autistic people have) which makes it practically impossible for me to handwrite and wrap presents at Christmas time. How does the absurd claim that statements saying that autism is more common than AIDS, cancer or diabetes lead anyone to believe that autism could be contagious help anyone with autism?

What of Ms. Evans' statements that autism does not kill anyone. In my own personal case, I demonstrated poor social judgment at age 17 and let a friend without a driver's license drive my car while we were drunk. He crashed the car into a wall and I went through the windshield and was injured but did not die. I could have died at age 17. What about Ashley Brock who died of accidental drowning due to her autism? There was also a boy who was run over by a train in North Carolina. Also, I don't recall the name but there is an autistic man who killed his mother. This has recently received some media attention. It could certainly be argued that this woman would be alive today if her son had not had autism. There was also an article in a recent Journal of Autism and Developmental Disorders about a 10 year old autistic girl who threw her six month old baby sibling out a window and killed them. Certainly Ms. Evans' arguments that autism can't kill or have the potential to kill are fallacious.

When we look at the t-shirt on the web site that Ms. Evans links to, we see the moving message on it: Because I love someone with autism. So the organizers of these fund raisers are certainly not trying to offend people. They are only raising money out of love for their children, grandchildren, nieces and nephews. Neurodiversitites seem to have some trouble realizing this.

Once again ASAN's statements and actions truly baffle me.

21 comments:

SM69 said...

Well Jonathan, there is a very good momentum in the delivery and flow of your arguments here and I must say it holds pretty well together. I would agree with everything you say, but I still think that one can be very realistic as you have been in your post and ask for acceptance and love, because these do help a lot. I actually have a badge that says, I love someone with autism, I actually ware (used to ware) 4 of them, though I have been given them away, because it catches the eyes of everyone and I am now only warring one (but I have a full bag on order). I like this slogan, I think it is powerful. Love is powerful, it’s the drive for life. And when that drive is fused with knowledge it leads to actions. There is so much that can be done. And yes, autism can be caught, not sexually and not through blood transfusion but through exposure to a whole range of toxins, but not everyone will catch it, genetically susceptibility is needed to catch it and at a key developmental stages. This is pretty obviously the case; none the less some people might be 100% genetic, but not the bulk of today’s kids. The lab readings we are gathering are amazing, it’s an illness for some and there is no doubt. But it’s love that will drive this to be sorted out, because neither the current health care system, not the educational system are giving serious considerations with the right motivations at what is happening here.

jonathan said...

other than an association with thalidomide that has been demonstrated as a very possible (though not definite) candidate as to what can cause some people to become autistic, I don't think there is any proven association between a given toxin and autism. I don't think very many people in the know believe that autism is 100% genetic in many of the instances of autism with some exceptions. Exactly what in the environment is causing people to "catch" autism is not really known, but perhaps further research may elucidate that in the future.

However, that is not really the point of the term "catch" The point is, this person Meg Evans who espouses this absurd analogy is using the catch analogy as if someone would catch autism like the cold or flu, that can be spread by infectious means. The point is. No rational person is going to read what the marathon charity's website said and construe that to mean that autism could be caught in a manner that a cold or the flu can be caught or transmitted from one person to another.

Anonymous said...

"No rational person is going to read what the marathon charity's website said and construe that to mean that autism could be caught in a manner that a cold or the flu can be caught or transmitted from one person to another."

Jonathan, if you change rational to knowledgeable, I'd agree with you. The use of the term disease is correct as you point out, but when the general public hear's that word, I do think they think contagious.

I'm curious of what you think of the National Down Syndrome's Scociety's "Dream" public service message.

http://www.youtube.com/watch?v=-_-P4t2jR1g

It's video seems to serve the same reasoning as ASAN's point.

Anonymous said...

I found your blog from a link from JB's blog. I'm glad I did.

You write honestly and straightforward. Keep up the good work.


WD

SM69 said...

Anon

I have watched that video, thanks for pointing it out; what do YOU think of it?

I am in two minds about it, whilst of course, it’s very nice, positive, if not rosy as if the world was ideal, Heaven-like, the harsher reality of our world and the DS condition make the statements presented not fully grounded. I am not sure if that alone can make a true difference. I would actually prefer to see real examples of true integration demonstrated rather than dreams of becoming a doctor, or a vet. It’s not that I want to cap expectations, because capping anyone’s ability is not helpful, but success in life does not come with a high ranking profession, but rather from finding a place in society that fits individualities.

J- Yes you are right Autism cannot be caught as a flue can. When I talk about disease it is in reference to pathological processes that can be measured right after a regression is taking place. I have several cases very well documented I will shortly prepare for single case publication; I’ll let you know when this is done.

Foresam said...

The neuronitwits who have hysterical autism caught it from other neuronitwits. I think this is how David Andrews' daughter caught Asperger's at an undiagnosable age, from her screwball parents.

JediKnight2 said...

"In this instance, a lady named Meg Evans who states that she is autistic, yet is high functioning enough to be married takes umbrage at the language used on the Cincinnati Marathon web site that is used to raise funds for autism."

So if she can get married, she's obviously not lacking in any expressive and receptive language
skills, yet alone, any major impairments in abstract reasoning and no or little cognitive impairments.

"Ms Evans states:

On your front page, promoting the Run/Walk for Autism, there is a comparison of autism to cancer, diabetes, and AIDS, which misleadingly causes people to view autism as a disease that their family members are at risk of catching"

Ok, so she's either confused on how the word 'disease' was used to describe autism (autistic people tend to struggle grasping words with a distinctive difference and recognizing certain words could be used to describe several references, not just the common ones, partially due to problems generalizing information),
or she's using this borderline weakness she knows deep down she's always stuggled with as a crutch just to be 'protective' toward other individuals who fall on the autistic spectrum. Nice shot, Meg, but you don't need to play the role of a martyr to become an effective advocate.

"She further goes on:

In fact, autism is a developmental condition, not a disease; it does not make anyone sick or kill anyone, and it cannot be acquired from contact with autistic people. Comparing autism to deadly diseases such as AIDS can cause uninformed people to shun autistic individuals out of a groundless fear that they or their family members will somehow catch autism. For the same reason, autism should not be characterized as an "epidemic," which is a term that usually refers to an outbreak of contagious disease."

How obsessive could she possibly be over this? Why is she beating this over and over like a dead horse? Meg, you're married and have it far better than I do! What could possibly trigger you to want to write a statement on the Cincinnati Marathon site? Do you really feel threatened when people don't refer to autism the way you want them to?

Here are the definitions of the word 'disease' from dictionary.reference.com:

dis⋅ease   /dɪˈziz/ Show Spelled Pronunciation [di-zeez] Show IPA noun, verb, -eased, -eas⋅ing.

–noun
1. a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

2. any abnormal condition in a plant that interferes with its vital physiological processes, caused by pathogenic microorganisms, parasites, unfavorable environmental, genetic, or nutritional factors, etc.

3. any harmful, depraved, or morbid condition, as of the mind or society: His fascination with executions is a disease.

4. decomposition of a material under special circumstances: tin disease.

–verb (used with object)
5. to affect with disease; make ill.

Meg, they are referring to autism with the word "disease" with the first definition, not the other ones you have in your concrete, literal mind! Your central nervous system is affected (brain included), and many autistics do have some mercury poisoning. We're autistic as a result of genetic errors mixed with environmental issues which causes developmental errors, and you stated that autism IS A DEVELOPMENTAL CONDITION!!!
Either you knew this since you're apparently high functioning enough to get married, and you seem like someone who's far more advanced than I am, or you're just bullshitting around like many autistic people do and get away with easily so NTs will feel bad for you; they're make you feel praised if they're gullible about autism as they're desperate for helping their children, or so you'll be praised as a role model for other autistics.

As for Ari Ne'eman, he's just a damn wealthy hypocrite who's angry about having Asperger's Syndrome, yet does not seem like someone who struggles in many areas. Assuming his social interaction is his weakest area, a huge part of his problem among many individuals on the spectrum is lacking a comfort level based on how he may have been raised in his household due to his family members not getting a full or close to complete understanding on how his autism affects him and how he needs to live his life a certain way and learn advocacy skills to stand up for himself. This lacking of a comfort zone, I believe, is a huge explanation as to why many people on the spectrum live their lives on the Internet and are angry people who partake in Neurodiversity.

jonathan said...

Hi anonymous and skymaker:

Since anonymous was curious about my thoughts about the Down's syndrome video and how it might compare to ASAN's policies and actions, I thought I would give my take.

Yes, I have now seen the video that anonymous linked to and what we have is a moving portrayal of Down's that is designed to evoke our sympathy. We see that the persons with Down's syndrome are not so different than typical people in the respect that they too have hopes, dreams and aspirations, albeit unrealistic ones in a number of the cases. The video makes a plea to consider Down's syndrome as a condition that needs help one way or another, but does not go into specifics.

ASAN on the other hand really just generates propaganda, such as Ari Neeman's statements that autism speaks is morally complicit with murder, because of one dumb remark Allison Tepper Singer made on the video and a presumed temporal relationship between the murder of an autistic girl, trying to demonstrate a causal relationship. Not to mention Meg Evans' numerous factual inaccuracies and taking umbrage at the perceived slights such as the marathon charity comparing autism to other conditions and the offense taken at the ransom notes.

I do not see where a comparison can be made between the Down's video and ASAN's public policy statements can be made. A comparison between apples and oranges is more apt because they are both fruits.

SM69 said...

I think I see the point Anon had with that video and the similarities with ASAN though of course I do not know well what ASAN is up to being in the UK and not following this very closely. The other issues I am not very keen about in the DS dream video is that it seeks sentimentality and the feeling of being sorry for those people, pitying them. I don’t know how you feel Jonathan, I know you would like to have help and feel more able to fulfill your potentials and I do think the same for my son, but one thing I do not want to feel when I see others seeing us is their pity. I think we are way above this in a way. The DS dream video because of its unrealistic content is sad, despite all the good intentions behind it. It would have been way more powerful to show real integration, real life, rather than dreams, banal dreams.

Anonymous said...

"The DS dream video because of its unrealistic content is sad"

What content is unrealistic?, the dreams of people or the way they want to be viewed and treated?

Tor Hershman said...

Jon, "We don't need no stinkin' neurodiversity," is LOL funny.

jonathan said...

It is the dreams of the DS people that are unrealistic, it is not realistic for most people with down's syndrome to expect to go to college or become veteranarians, etc.

Anonymous said...

"it is not realistic for most people with down's syndrome to expect to go to college or become veteranarians, etc."

What reason do you think that's true? In other words, I think your accurate in your assessment of the current environment, but, I wonder what the true cause of that reality is. I can only think of two reason's. Either they aren't able to because they can't do the work (and that itself is a chicken & egg question) or that society simply won't allow it.

jonathan said...

Because persons with Down's have an intellectual impairment that makes them unable to do the work of a college student who can excel well enough to become a physician etc. This is not a statement disparing persons with Down's syndrome, it is just a factual statement. Your take on the matter is a typical neurodiversity take of "different not broken" which is a factual inaccuracy it is as simple as that. Society is doing nothing to prevent Down's syndrome sufferers from realizing their full potential. It is an intrinsic handicap no matter how deeply in denial you and the rest of the ND crowd are.

Anonymous said...

I'm not sure I understand the hostility to the question. I'm not apart of any dogma. Just looking to ask a few questions.

You wrote:

"Society is doing nothing to prevent Down's syndrome sufferers from realizing their full potential."

What's your proof for this belief?

jonathan said...

you can read my post above for the proof, I am not going to repeat the same answer twice.

SM69 said...

What content is unrealistic?, the dreams of people or the way they want to be viewed and treated?

Hello Darling Anon


Excuse me for asking, but who do you think you are, with you aggressive questions not even bothering to answer any of my questions in the first place and coming uo with an ID? The kind’s ass? I know your type of personality so well, and I tell you one thing, I have no more patience for your ignorant arrogance.

SM69

PS: Forgive me Jonathan for this post, why should I keep containing what people have pushed me so hard to say?

Anonymous said...

"Excuse me for asking, but who do you think you are, with you aggressive questions not even bothering to answer any of my questions in the first place and coming uo with an ID? "

Sorry, I didn't realize you had a question and I was following up on your vague response to the first question. I was wishing for a little clarification.

"The kind’s ass?" This isn't a sentence so I'm not sure what your trying to write.

"I know your type of personality so well," What type would that be? I'm almost afraid to ask. There is a lot of anger here.

SM69 said...

You might have been a different Anon than the first Anon who posted the link of the DS dream video. My question was what do you think of the video? But it seems to be impossible to have a conversation with Anons, because we don’t know who is who.

Anyhow, when I’ll get the answer to my question, I’ll address other issues that relate to the video.

Yes there is anger, I have been very badly mistreated by one more person like you, and to be honest I am just plainly sick of these abusive behaviours.

Seeing Clearly said...

When a population knows too much and is very educated the establishment or whatever the name is starts investing into attacks like propaganda there is a war For our minds and beliefs and spirituality we have labels like conspiracy theorist,we have medical labels like ADHD Autism ,OCD and so on they are tribalist they want to tribalism if we all have a label we are going to be divided they indoctrinate tolerance,acceptance and diversity but are also supporting these labels and categories so they are dividing us by giving us categories and then telling us to love our labels in the case of the medical "screening " (anti-cure).

Anonymous said...

We live in the most "special" generation which means we have the most "special " or what it actually mean the most sick people with every passing day getting worse just about anything is on the rise whether Down Syndrome or autism or ADHD or asthma or cancer. We have so much disease now and autism is a multi-disease what I am trying to say is that autism is when you have multiple disorders instead of being diagnosed with all the disorders you have including unspecified instead you're given the autism diagnosis no wonder they can never find a single cure for autism its because autism is not a spectrum it's many disorders and illnesses so when one treatment in a study works to cure autism in some people put the same treatment doesn't work for others they start saying there is no cure and they mislead people.The Dichotomy behind autism is so insane they want to put things on a spectrum instead of breaking dissecting the spectrum down into smaller fragments that would eventually lead you to the root causes.