Saturday, September 19, 2009

Stupid Autism Parents?

Apparently there are a lot of SAPs, Stupid Autism Parents, behind all the uproar over possible vaccine autism connections.

Those parents who accept the official view that autism is 100% genetic and that substances injected into young children can not possibly disrupt or damage their neurological systems are smart, good guy parents. Those who want to treat or cure their children, who question vaccine safety, the combinations of vaccines, the frequency of vaccines and the biological and chemical agents contained in vaccines are ..... well .... just not that smart.

Being a Stupid Autism Parent who believes that autism is a disorder for which a cure is badly needed, that it results from an interaction of genetic and environmental factors and that vaccines MIGHT play a role in causing or triggering autism in some cases I was grateful to learn from a discussion at "Aspies for Freedom" that it is just my own stupidity that leads me to such erroneous beliefs and irrational concerns. In the end parents who post at Autism Speaks are stupid and parents who post at Aspies for Freedom are smarter. It's true, Aspies for Freedom says so.

Aspies for Freedom is a site which appears to be dedicated to the rights of "Aspies" to be free, although free in what sense is not clear since most of the posters appear to reside in the US, UK and Canada where fundamental freedoms are constitutionally entrenched. Perhaps it means freedom to determine what is best for other people's Autistic children? Aspies for Freedom started a highly enlightening, intellectually sophisticated discussion topic called:

A General Comparison Between Parents on This Forum and Parents on Autism Speaks

The general gist of the opening post, by a brilliant intellectual posting as Mars Mariner, and subsequent discussion is that parents who post at Aspies for Freedom are smart and parents who post on the Autism Speaks forum are well ... not so smart:

Post 1

I would make a general comparison between parents here and parents on Autism Speaks. Again, this is a very general comparison, one that I do not intend as a slander against the parents on the "other" forum. However, my sense is that parents here enjoy a greater level of education and critical faculties than their peers on the other forum. It is not my intent to belittle the earnest and sincere parents on Autism Speaks. However, it seemed from my experience there as though they were not discerning people. My sense is that they were younger, not college educated, and more susceptible to seeing the world simplistically. I may be wrong in my perception, but that seems like a general rule of thumb.

I am not coming at this from an elitist perspective (I hope not). Rather, I am sincerely recalling my experience there. What disturbed me, however, was one other difference between parent cultures there and here. Parents there seemed not to care about children beyond their own to the degree that parents here do. It was not so much that they agreed with the torture going on at the Judge Rotenberg Center; more that they did not care too much about the sphere beyond their immediate concern. Parents here seem a lot warmer.

If I am mistaken, or if I have over-generalized, I apologise. Again, I think that parents on the other forum are more likely to look at reality simplistically. A lot of them were disaffected with Autism Speaks because it will not endorse the vaccine view. Autism Speaks endorses establishment positions, while the anti-vaccine people are decidedly against the pharma cartels. However, both factions, the establishment eugenicists and the anti-establishment vaccine people, believe in Neurotypicalism. Neither side can see Autistic people as having positive contributions to make. Both see a "problem," to be cured in a society dedicated to Enlightenment modes of rational problem solving.

In summation, my time there was somewhat disturbing. I wanted to like the parents there, but found that I could not relate to most of them. Few of them were even interested in what I had to say enough to tell me to shove...whatever they would tell me. This was disturbing, because I was willing to be of assistance as much as possible with what I could help.

However, it is also possible that few parents of intellectually inclined Autistics visit that forum. It is possible that more such parents are here than there. Hence, my experiences may not have been of value to them. My time there was brief, and rather unproductive. To top it off, the moderators there allowed a pornographer to spam the whole website, one visited by children! I will never return.

Another intellectual giant writing as Pakrat chipped in:

Post 2

RE: A General Comparison Between Parents on This Forum and Parents on Autism Speaks

I also notice on FB that the old chestnut of vaccine causing autism is very much alive and some of the parents disbelieve the evidence discrediting the supposed link. One woman got incredibly hysterical when I told her that vaccines did not cause her brother's severe autism. She made all kinds of insults against me which I found amusing since they were so ludicrous but it goes to show that when there is an emotive subject, reason can be quite lacking.

Yes, I believe the parents here are generally brighter and more deep thinking than in sites such as Autism Speaks. It's also possible though that the other parents have more severely affected children and therefore were exposed to more hype about "cures" and more indoctrination about the "tragedy of autism". People who prey on desperation are indeed despicable and all too common.

The discussion was also enlightened by one of the "smart" parents, posting as "atypical", who frequents the Aspies for Freedom site and, not surprisingly. agrees with the proposition that parents who frequent Aspies for Freedom are smarter than those at Autism Speaks:

Post 4

I think that if we/us parents seem brighter - it may be because -we found this place and stayed because the people here remind us of our children - or something in ourselves. Not average and mundane, but interesting, complicated, freedom lovers (It's in the name!)...

I feell lucky to have a different way of looking at things -I/WE ARE LUCKY TO BE AWARE, it is a blessing to see things in an atypical way AND instead of us changing our children, our children change us.

I am probably just not as smart, or as "aware", as "atypical" but I do take autism seriously as a disorder which seriously restricts the life opportunities of my son. It is in truth sad to see some persons with Aspergers Disorder, and some parents, posting such offensive material on the site, one of the alleged "Autism" Hub sites.

I know some persons with Aspergers and High Functioning Autism who do not indulge in such foolish, offensive trash talking and who do in fact show respect for the rights and responsibilities of parents to do the best they can to help their children live the fullest life possible. It is too bad that the "intellectuals" at Aspies for Freedom and other Autism Hub web sites don't display the same good character.

In the bigger picture the demeaning characterization of parents who seek cures for their autistic children or those who question vaccine safety as less intelligent than those who embrace their children's autism disorder as a blessing and do not question what gets injected into their young children's bodies is not much different than the marginalization of parents conducted by Paul Offit and other government and pharmaceutical spokespersons.

Offit and company also want the public to believe that parents who question vaccine safety are of lesser intelligence. Parental observations, no matter how many times the same pattern occurs are dismissed as coincidence. Parents, ALL parents who question vaccine safety are gullible fools seduced by charlatans ... or they are hysterical wing nuts because some apparently committed criminal, threatening acts toward Dr. Offit and his family.

And so we can just ignore ALL parents who see their children regress into autism after vaccination (unless they are a neurologist who can not be ignored or marginalized like Dr. Jon Poling).

If only those Stupid Autism Parents would just do as they were told.

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farmwifetwo said...

I find the "enlightened" on the Hub to be as offensive as anyone else can be, on any other autism forum.

There are blogs over there I enjoy, but the rest..... I will never worship at the shrine of Paul Offit and his followers.

As for education... snickers... Just b/c I'm a SAHM now, does not mean I don't have a University degree nor do I feel I have to defend my post secondary education nor defend any choices I have made in my life. Sorry not stupid, uneducated, white trash here. School's discovered that as well.

Do vaccine's cause autism?? Can they trigger it?? At 18mth regressive autism starts to show, do vaccines trigger it in some, do vaccines augment it in others, is is just an unfortunate coincidence - IMO all of the above.

Is there an environmental factor to autism - prenatal care, pollution, mould in walls etc - looks at youngest son.... IMO yes.

I'm entitled to my feelings, my opinions. I'm sorry if the Hub crew thinks that makes me "stupid". Calling people stupid, writing posts like that, makes you exactly the same as those you claim that you are smarter than.

Memories By Kim 2009 said...

Proud to be a SAP....and as I am also the mother of an Aspie... I can only hope and pray that I never limit myself to the narrow-minded approach that is shown by the comments of these members of Aspies for Freedom....How can we ever find a cure if we are not willing to examine all possibilities; one of those being the possibility that vaccines may have played a part ....perhaps autism is is chemically induced...who knows...but narrow-mindedness will never get us very far in research, will I choose to be an intellectually-challenged SAP.

MJ said...

The immaturity of these statements is almost breathtaking. I mean really, saying that you find people who agree with you are smart and educated while those that disagree are somehow less intelligent, wow. I thought most people got beyond that point before they left elementary school.

It is always hard to know to respond to something like this. On one hand you want to ask these people how they can spout such nonsense let alone believe it. Yet if they are serious then the chances of having an intelligent conversation are very small.

john said... about ignorance. I always loved their 'about'

"we oppose any attempts to "cure" someone of an autism spectrum condition, or any attempts to make them 'normal' against their will. We are part of building the autism culture."

against their

That whole logic is obserd. Thank God that none of them have any children with diabetis, would they ask their 5 yr old if they want to get insulin?

My guess the child would say 'no'. Lets face it, what 5 yr old likes to get shots?

dont get me wrong, people can parent their kids anyway they want, people can have their children make any choice they want, and if that works for them, fine. But don't tell us that wanting our children to try to have a normal life is wrong.

john said...

I guess thats the difference, 'Aspies for freedom' rather see my son in the future to live in an institution, where I would rather see him married with a job.

but hey, Im stupid, so what do I know.

Claire said...

Simply posting the "discussion" displays the silliness of it all. Thank you for the added commentary. It's good to see clarity of thought in these matters.

Speechie said...

On the one hand I understand you frustration. On the other, I don't go to conspiracy theory websites when I want an even-sided debate on current political issues, and then come out shocked and offended that no one engaged me in reasonable conversation. Let's be honest, there are wackadoos in the world, you're not going to change their wackadoo-ness with reason. It's like going to an extreme PETA site and saying you believe in animal drug testing and expecting a productive dialogue. Never gonna happen.

I do remember when I first stumbled across Aspies For Freedom and didn't realize the nature of the site. I saw some of the anti-ABA rhetoric and posted that I was curious as to why, specifically, the posters hated ABA so much. The totally circular argument went like this:

AFF: ABA is horrible and it's child abuse!!!

Me: Why? I mean, specifically?

AFF: Didn't you hear about X, Y, and Z case where a child was abused by an ABA therapist!!! ABA is the devil!!!

Me: Um...well, no one is condoning child abuse, but that can happen in any situation, unfortunately. Parents, baby-sitters, teachers could all potentially abuse a child but that's not a 'part' of their job. It's not a part of ABA, either.


Me: Ok, well, for the sake of argument, let's imagine a crazy hypothetical scenario where ABA therapists AREN'T tying kids up and beating that scenario, what is your objection to ABA? I mean, it's pretty much just a specific style of tutoring, if you will.

AFF: Well, if that's what's going on then it isn't ABA.

Me: Yes, it still is, really. So what is your issue with that style of ABA.

AFF: Did you say ABA?!?! ABA is horrible and it's child abuse!!

Wash, rinse, repeat.

The thing is, as a speech therapist, I do use ABA principles but I do not think ABA is a perfect science. I was actually interested to hear how they thought it might be improved, and would have been open to hearing valid points. For example, when I first trained in VB they were very anti-PECs, despite some research to indicate that children with severe autism might actually be better suited to communicate with static visual-spatial symbols vs. transient fine motor movements.

What I got, unfortunately, was a whole bunch of random generalizations based on nothing, so I haven't bothered to go back since.

Anonymous said...

Stupidity is not the same as irrationality. You can be smart and irrational.

"Orac has an interesting take on all this: he points out that at its core, the antivax movement just simply hates vaccinations.

Now, that might seem like a tautology. But it’s not, not really. It’s actually relevant because the antivax movement must change its story (what we skeptics call "moving the goalposts") every time they are conclusively proven wrong. That happens a lot. When it’s pointed out that mercury doesn’t cause autism (removing it from vaccines did not lower the autism diagnosis incidence rate), they say vaccines contain squalene, or fetal tissue, or ghosts, or the Loch Ness monster.

Of course, when it’s shown that autism rates have nothing to do with vaccination, they ignore it, or spin it, or lie about it.

In a sense, the loudest proponents stick to their movement the way a racist sticks with their prejudices. You can tear down their specific claims about a particular group of people point by point, but in the end the racist simply hates people in that group. It’s not rational, or logical, or reasonable. It just is."

Roger Kulp said...

It may be because I have had a very rough week with autoimmune type flares of various medical problems, past and present,triggering all sorts of equally severe flares of autistic behavior,but what these people are saying really doesn't make a whole lot of sense to me. In short,it's a whole lot of words about nothing,just like a lot of what is posted there,and at a lot of ND blogs.

Threads at Aspies for Freedom about self abuse, medical problems triggering regression,either are ignored or removed.Not suprising considering the woman who runs the place.

In the past week,I have also had a couple of runins with really stupid autism parents in two of the Yahoo! groups I belong to.One was a woman who had a nine year old daughter who had diagnosed mitochondrial disease,with autism as the main feature.The daughter's only treatment consisted of Paxil,and antipsychotics.The other was a woman in her 60s,who had a verbal daughter,in her 30s,with autism,not Asperger's.The daughter had a history that sounded a lot like mine.The daughter had a prolonged,acute infection,that triggered a severe regression part way through,just like I had in Spring,2007.While the daughter was still sick with the infection,she was put in an institution,that sounded a lot like the one you wrote about the other day.She continued to go downhill after being put there,both in her autism,and her health,but the mother acted as if neither were any concern of hers.That was why she put her in an institution.This is a Stupid Autism Parent.

Both of these parents believed autism was entirely genetic.Neither believed "comorbid conditions" had anything to do with the severity of the autism.This is a Stupid Autism Parent.

A lot of neurodiversity bloggers are Stupid Autism Parents.I don't think anybody who isn't on the spectrum themselves has any business writing about ND as if it effects them personally.This is a Stupid Autism Parent.

They can be just as bad as the over the top parents at Age of Autism,who go on and on about what a burden autism is for them.

Both sides have their share of stupidity,but stupidity combined with fanaticism is the worst,whether it is coming from Ari Ne'eman,or some of these chelation discussion groups on the web.

Jake Crosby said...

I guess I would be considered a SAG, a Stupid Autistic Guy.

nhokkanen said...

It's sadly amusing how people who sign themselves Anonymous or Real Science spew the asked-and-answered party line repeating the same tired and irrelevant talking points. No names, no science. Just sophomoric posturing.

The issue of mercury toxicity is still relevant. As far as that "moving the bar" canard, researchers refer to that as "emerging science." At least someone is looking, and it's not the CDC.

Thimerosal is still used in manufacturing and preserving vaccines. It is and always will be neurotoxic at extremely low levels. Hundreds of Thimerosal toxicity studies can be found on PubMed.

Brain cells are dying due to that ethylmercury compound. One cannot pick and choose which cells die, and as yet technology won't identify subtle damage... just the larger hunks of demyelinized flesh that our kids' MRI scans have revealed. Hence the investigations into encephalopathy, ADEM, etc.

It is way past time for vaccine injury to be an accepted medical practice. Look the other way, call it coincidence -- that is not scientific. That is not ethical. That is not humane.

That is the banality of evil, disguised by a white surgical gown.

Dr. Jim Roche said...

There is simply no correlation between vaccines and autism. None. This take a very simple level of math and statistical understanding to get. Yet some want to deny facts. They point to a bit of research that has been withdrawn, and most of the researches on the project withdrew themselves. They blame big-pharm, and what is so strange is that the original research that "found" a correlation when none existed was itself written by someone sponsored by big pharma who was going to make profits from the results. Odd that some can't see through this.

Autism Reality NB said...

Dr. Jim Roche

I am surprised that a Dr. would try to use insults to persuade.

Dr. Bernadine Healy has said that the epidemiological studies are not specific enough to determine whether some vulnerable population subsets are impacted by vaccines with resulting autism. She along with Dr Julie Gerberding has called for an observational comparative study of existing vaccinated and unvaccinated populations.

Dr. Jon Poling, a neurologist, whose daughter was successful in vaccine court (the government admitted that her "autism like symptoms" resulted from aggravation by vaccines of her mitochondrial disorders) has said that more research is needed on environmental causes including possible vaccine causes of autism.

When more research is done it may (or may not) be easier to convince parents that their children's post vaccine autism regression is unrelated to the vaccination itself ... without resorting to insults.

john said...

Dr. "There is simply no correlation between vaccines and autism. None. This take a very simple level of math and statistical understanding to get."

Dr. your being silly, we are stupid, remember? Hopefully you read the post. Dont get me wrong, I am not one who is actually sure that vaccines cause autism, but with that said, I'm not 100% sure it doesn't. So until then.....

and not to be rude, but with you being a marriage counselor, I hope you don't say that to your clients who may have a child with autism. Only because it's your opinion.

We all struggle with the cause, and we all struggle for the cure. Why close any doors until it is 100% proof that there is no corollation between the two, and as it stands now, there isn't 100% proof.

Ian MacGregor said...

The amount of thimerosol children receive is now below the levels received before the epidemic started. I'm not against looking for environmental factors, but vaccines have been eliminated as a cause.

Of course statistical studies cannot rule out the possibility of a small vulnerable population. After all they deal with samples not the entire population. They can tell us their is no correlation between vaccination and autism.

If I study the flight capabilities of pigs and find that in that sample 100% of the pigs don't so much fly as plummet, have I proved that nowhere in the world is there a populations of pigs who soar?

Anonymous said...

That person who posted porn there and a link to a child porn site got banned. The mods didn't allow him to do that stuff or else they wouldn't have banned him and remove the porn and the link to the child porn site. The mods can't be there every single minute to catch it. They will catch the bad stuff when they come on.