"Stop calling it Autism!" (website)

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I'm not diseased, I'm unique and interesting.

Autoimmune disease, apparently. They do have some PubMed article links in which various autoimmune pathologies are found at a slightly higher rate in autistic children but that's it.

^^agreed.

~Kate

Wow. Serious research fail.

This page right here:

https://www.stopcallingitautism.org/mis ... liefs.html

contains a statement that invalidates any chance that the sight is objective.

"SCIA BELIEVES...
- That there is a direct connection between autism and the immune system"

Based on what evidence?

The simple fact is, there is NO known cause for Autism. This isn't to say there is no or ARE no causes. There very well may be, we just don't know what they are, and there could be many different causes.

A statement like that proves that SCIA is not scientific in its approach. Science isn't about beginning research or action based on preconceived ideas. Science is about looking at evidence, forming a postulate based on existing evidence, then researching and experimenting in such a way that either proves the postulate could be true, or disproves the postulate.

The problem is, Autism (the word) MEANS something. And it's original meaning is both somewhat ambiguous, yet specific at the same time.

Specifically, all it referred to when the word was coined, was the self-absorbed state of mind observed in many individuals with schizophrenia. Thus, it was specifically referred to as "Schizophrenic Autism."

Autism, as a word however, taken out of the context within which it was originally coined (by observing certain schizophrenic traits), could easily be applied to many individuals with self-absorbed behaviors and traits, whether or not these individuals had any disease, disorder, or anything else "wrong" with them. In other words, perfectly sane, healthy individuals could, and still can, display "Autistic" traits, as long as we think of Autism not as DSM describes it, but with the word's original ambiguities. Remember, they originally referred to it as "Schizophrenic Autism" intentionally to make it clear and more precise as to its application.

The idea that "Autism" as we know it today is a specific "disorder" on it's own, separate from Schizophrenia didn't come about for quite a while after Asperger's and Kanner's research finally began to be recognized and taken seriously.

Also, keep in mind that even today, in order for ANY diagnosis of Autism, in whatever form (AS, PDD-NOS, et al), to fit DSM criteria, Schizophrenia must first be ruled out.

Why do you suppose that is? It's because the "Autism" displayed by Schizophrenics can also fit the criteria for Autism without Schizophrenia.

If Schizophrenic Autism can appear for all intents and purposes to be identical to just Autism, why couldn't any number of other "types" of Autism do exactly the same thing?

There may be no evidence to support the claim that vaccines cause Autism, but there is also no evidence proving they don't. There is no absolute proof anyway.

My point is that it is because of observations of Schizophrenic traits that the term "Autism" was coined to begin with, but because these same traits could be observed in individuals without Schizophrenia that Autism as a distinct and separate diagnosis eventually came into existence. That distinct and separate diagnosis, came with no distinct cause.

Nobody knows what causes Autism. Though it is often said Autistics are born with their Autism, there is no proof that this statement is true. There is no proof, for or against, any cause of Autism. For all we know, some of us could have Autism caused by environmental and/or medical factors, some could simply be choosing to live within an Autistic-like "shell," some may be inheriting it genetically, and still others could have the traits for still as yet unknown reasons.

The more immediate problem isn't the question of what Autism is or means, or what the causes are. Not that finding causes isn't important, that isn't what I mean. The more immediate problem lies in the fact that a bunch of doctors and researchers, decades ago, began to define behaviors and traits observed, with no accurate understanding of any commonality in causes among those they observed these things in.

In other words, the only commonality is in a group of symptoms, with no clear idea of exactly what causes Autism in one person or another.

As Autism is described in the DSM, cause is never mentioned. Only symptoms are mentioned. And rightly so, simply because from the coining of the term, and subsequent research by Asperger, Kanner and others, cause was never considered in any definition of Autism.

What this means is that Autism as a group of symptoms, could have any number of different causes. Whether Autistic traits are caused by Vaccines, medications of any kind, environmental toxins, genetics, or any other cause, has nothing to do with whether or not what is observed in an individual, qualifies as Autism.

Whether or not someone has Autism has nothing to do with what caused it, because no one has any clear idea of what can or cannot cause it.

It never did.

All these debates over whether vaccines, toxins, or other such similar things can or cannot cause Autism, are moot. A waste of time in relation to finding solutions to the problems caused by Autistic symptoms.

Regardless of what actually does or does not cause Autism, Autism as a group of symptoms, sucks. Whether or not it sucks because the world is intolerant or we as Autistics are intolerant is irrelevant to me. It is a moot debate, because both are true. The world is no more intolerant of us than we are of it. Pointing fingers and laying blame doesn't help us.

Squabbling over what does or does not cause it, and drawing lines in the sand defining what does or does not qualify as Autism based on criteria that has never been agreed upon by anybody, is a sad waste of time.

Autism is what it is. A set of symptoms, regardless of cause, regardless of age of onset, that causes great difficulty in coping with life and the world around us. Fighting over who "really has it" and "who doesn't" is just plain stupid.

Suppose you were born without the ability to speak? In all other ways you are perfectly healthy. You can hear, learn to understand language, and function perfectly in every other way. You just can't speak. Now, suppose your brother is born just like you, but able to speak, then, for reasons unknown to all, suddenly can no longer speak.

No one knows why you can't. No one knows why your brother suddenly is unable to.

Is your life any different from his?

Will the two of you spend your lives arguing over which of you is mute, and which is not?

What I noticed:

One of the articles this website links to is about research done to investigate the causes of abnormal (OCD-like) grooming behavior in mice.....this proves nothing about autism.

The other article discusses research done at John's Hopkins which demonstrates that autism may be linked to differences in immune functioning in the brain. This study does not prove that autism is caused by immune dysfunction. In fact, the researchers have suggested that the chronic immune activation in autistic brains may actually be beneficial (rather than detrimental) to neurological functioning:

from: http://www.hopkinsmedicine.org/Press_releases/2004/11_15a_04.html

from: http://news.sciencemag.org/sciencenow/2004/11/16-01.html

I wouldn't trust a study with only six participants. That's even fewer than the study that concluded autism was caused by the MMR vaccine.

Same here. I was born autitic, and I'm going to die autistic. Ughh! Stop trying to cure me, people!

I am not cherry picking to disagree with you, because I actually agree with what I perceive to be your main point (that the etiology matters less than helping people).

I just wanted to point out that there is no such thing as "absolute proof" in science, at least to my understanding. All evidence is potentially falsifiable, and so evidence can point to possibilities and probabilities, but future research can throw it into doubt.

That said, there is a lot of actual evidence that vaccines have nothing to do with autism, and practically none at all that vaccines have anything at all to do with autism.

I have to agree with you here. Autism was defined by a set of behaviors w/o regard to the causal nature(s) of it, probably because nobody had any idea what might cause it.



I appreciate your sentiment and agree with a lot of what you have to say.
Lydia

I think it is important to know what autism is beyond the behavioral level, because helping people with autistic behaviors requires knowing how the mind and brain are working to cause those behaviors.

I don't like it.

Nor would I. Now that you mentioned that, I realized that none of the researchers are quoted as having anything to say about the minute sample sizes they used.

At first I was thinking that the researchers cited by these parents had a more reasonable perspective--i.e. that their work was being misused.....but now I'm questioning that idea:

If the professionals involved in this research were actually unsure of their own results (i.e. unsure about whether or not autoimmune differences in their sample groups were pathological; unsure of the applicability of their own findings), why would they allow themselves to be affiliated with a website that unequivocally claims, based on their research, that autism is a disease caused by immune dysfunction? What's up with that? (Seriously, I don't get it....it seems unethical.)

Stuff like this just disgusts me. Bigotry and ignorance know no end.

I watched all three videos about Daniel, and I don't see any evidence that he has or had autism. Do you?

I know you aren't "cherry picking." Your point about absolute proof is actually in small part the same as my own point. The main point is though, that whether or not one thing or another, or a number of things can be proven to cause Autism, is far less important than the problems that Autism causes.

The "evidence" shown by studies about vaccines actually does not point definitively in any particular direction, for or against vaccines causing Autism. What we need to remember is that evidence that does not prove, does not disprove, or even suggest, anything at all. What does suggest, one way or another, are the conclusions drawn by the researchers. It's up to us to determine whether their conclusions have any basis in facts demonstrated by their studies. And that is a pretty complex task given that studies are usually written in pretty complex language most of us don't fully understand, and have no idea how to interpret. Trust is a huge part of what determines whether we have any confidence in the researcher's conclusions.

I have had some training in statistics, and have read several studies on the topic. I've never seen one containing any definitive evidence for or against vaccines causing Autism. Not yet.

The real issue, as far as I am concerned, is that the only thing we, as Autistics, can really concentrate on right now is the Autism itself, and how to deal with it, whatever the cause. Debating causes is simply a huge waste of time that clearly isn't doing anything but dividing the overall community of Autistics.

I don't really care how anyone became Autistic. All that matters to me is, "Do you have the symptoms?"

If the answer is yes, the only useful discussion from that point forward, IMHO, is "How can we help you?"

Or, better yet, "How can we help US?"

Let the researchers do what they're supposed to do. Let them find the causes. If they do eventually find the causes, they may very well find there ARE many different ones. And I have a strong feeling that eventually they will find that many of the things we think are NOT causes for Autism, actually are.

In the end, I really believe that we will find that some causes that many Autistics are "poo-pooing" at the moment, actually are causes, and that all this fighting over who "qualifies" or "doesn't qualify" as a "Genuine Autistic" is all nothing more than nonproductive silliness that is actually hurting us as a community by dividing us.

I for one, do not care what caused your Autism, or anyone else's. Autism, whether or not one is proud to have it, is not fun. Regardless of cause, we are all in the same boat symptomatically.

It really bothers me when some people on the boat start suggesting that others on the boat don't belong there.

Really? If that's true, then what are we to do? Throw them overboard?

This kind of quibbling doesn't help US or THEM.