Get the Truth Out on Autism

Great Debates
121

I look forward to the day when the neurodiversity people stop telling parents of autistic children how to run their lives. (I also look forward to the day when they divulge their past with transparency, accountability rather than retrospective historical rewritings…) They tell us that all we need is to be tolerant, and allow autistics to blossom. They actively… with fervent zeal, try to brow-beat parents into not making a choice to treat their children as they believe is best. There is disagreement as to what constitutes helpful treatment and what doesn’t.

If a child doesn’t test positive for mercury, so be it. What’s the problem? There is no defensiveness needed here…

If a child tests positive for mercury, AND for lead, what then? No doubt, the neurodiversity group would still say: “Don’t treat.”

The thing is it isn’t their right to try to dictate to any parent what that parent choses to do. They can call it child abuse, but frankly, I consider the abuse that these people who say they are autistic, hand out to parents even worse abuse.

But then, if the neurodiversity crowd are truly autistic, I guess we need to cut them slack because they won’t understand that what they are doing and saying to parents is also abuse, because autistic people cannot see themselves and their behaviour with the understanding that “normal” people would.

In my opinion, the whole debate as to what constitutes autism has gone from the shaky, to the sublime to the utterly gaudy.

It reminds me of another debate, if you can call it that… That of calcium. For decades, women have been told to take calcium, because it prevents osteoporosis, and reduces the risk of heart attacks and stroke.

As of last weekend we were told that actually it does the reverse, and there are now five studies to prove it.

http://www.stuff.co.nz/print/4211969a10.html

http://www.nzherald.co.nz/section/story.cfm?c_id=204&objectid=10465362&pnum=0

The good professor is suggesting halving the dose (on no good scientific basis). Why?

Can’t upset the industry, can we?

In fact, if they bothered to look a bit deeper, they would find in pubmed that magnesium and boron are the keys which hold calcium into the bones, and that calcium supplements are unnecessary. But you can’t patent cheap magnesium and boron, or make an industry out of eating better, so that isn’t going to happen. Instead these women will be prescribed very costly new generation osteoporosis drugs as well as half dose calcium.

The other thing they haven’t figured is that free calcium in a person with cancer starting to multiply, makes cancer go wild. Why haven’t they figured that out? I guess they don’t believe articles in their own medical journals, or least ways, decided that it was perhaps an anomaly.

What relevance does this have to the autism debate? There is a remarkable parallel. Belief often precludes any possibility of “seeing” the wood for the trees.

In my cynicism, I will await the continuing saga of serial goal post shifting on autism diagnosis and industry creation, with the same cynicism that I greeted the advice to take calcium supplements decades ago. I also recall one day in 1980, being told that taking folic acid to prevent neural defects was akin to listening to witches and old wives.

Yes, that was 11 years before the first study showed that witches and old wives knew more than obstetricians.

Here we have a medical industry in which multitudinous flip-flops continue to occur, and prescribed circuitous logic predominates. I believe that parents have the right to make their own choices not only about whether or not they want autism treatment for their children, but also whether their children receive vaccines, whether they (parents) take calcium supplements, and indeed, how they run their lives.

I don’t believe the neurodiversity group have the right to tell anyone how to live their lives, or bring up their children.

If the neurodiversity movement believe that they have the right to live as they wish, and be left to get on with it, then they need to accord that same right to other people.

122

This is entirely false. I can assure you that no significant discussion is being given to placing ADHD among the pervasive developmental disorders for DSM V.

Hmmm. I would wonder how you would come to know that. Any evidence that a misapplication of the criteria is routinely occurring?

123

Thank you, Ms Seidel.

My son is doing remarkably well but he has had few educational or social supports, they just weren’t around in the early 90s because so few children had Autism in those days.

The best the pediatrician could do, after telling me that I probably knew more about autism than he did, was to give us the phone number of the Autism Society, and wish us luck. There wasn’t anything he could do for us, unless things got too bad and we were desperate, and then he could only offer us drugs to control our son’s behaviour, but that was all.

Fortunately, thanks to Catherine Maurice’s book which introduced me to ABA, over the next two years, my son learned to communicate his basic needs to us, although his speech was stilted and robotic. Because my son was awake and active all day, every day, between 7am and 11 pm, and again at night between 2 am and 5 am, and so that we could get a little peace and a decent sleep, occasionally we gave him melatonin.

It wasn’t until he was five when we started biomed that everyone who knew him noticed a dramatic change in his behaviour, and they asked me what I was doing. The SLT was delighted at the progress he was making and told me that it was “amazing” and that whatever I was doing to “keep doing it”. And I did. Biomed included homeopathic remedies, mega doses of Vitamin C, vitamins B, A and the antioxidant and natural anti-inflammatory, Pycnogenol .

The following year, after Berard’s Auditory Integrated Training, my son was able to block out background noise which enabled him to focus on voices, and process speech. His ability with receptive and expressive language improved, and so did his co-ordination. Before AIT he ran crab-like with his head turned to one side, and he did not swing his arms. He also began climbing trees and swinging himself on the garden swing. But the greatest change of all was in his ability to cope with loud sounds, such as crying babies, hand-driers and blaring radios. Prior to AIT, he screamed uncontrollably and attacked the person he felt was responsible for the sound, or screamed, fell into the fetal position on the floor and covered his ears.

Hours of crawling, and cross-crawling were also beneficial, and even now, at 16, edukinesiology helps him to focus. At the age of 7, after five years of gut problems, and after just one week of zinc, he had his first normal stool.

After we started the gf/cf diet, he became more alert, his eyes became clearer and more alive, he was able to bear people sitting close to him, and was able to be touched and hugged by family members without becoming aggressive and violent, and he has become quite affectionate.

Ms Seidel, Our son wouldn’t be where he is today without the aid of alternative practitioners and their treatments and therapies, and he has not been harmed by any of them. But he was harmed by vaccines. A twenty-minute seizure after a DPT vaccine at the age of 7 months wasn’t beneficial for his brain, and neither was the DT vaccine that I allowed him to have shortly after his second birthday. You might ask, as other people have: “Why did you consent to another vaccination?” Only because our family doctor told me that my son had “probably reacted to the pertussis component of the DPT”, and he assured me that the DT was “perfectly safe”. It wasn’t. And that’s when our nightmare began.

124

Quoting a friend of mine after a discussion with his girlfriend (who had suddenly decided he had to be ‘more sociable’ after an afternoon spent with her extended family where he’d mostly listened, nodded and a-humm’ed) “all my life I’ve been an engineer and now I’m autistic instead!”

125

Autism expert Dr Tony Attwood has said on a number of occasions that ADHD is at the very upper end of the autistic spectrum. However, I don’t think they would dare to include it in the spectrum in the DSM-V because the rate of autism would skyrocket overnight to perhaps 1 in 10. How would that be explained, I wonder.

Marienee is correct. There are many individuals currently being diagnosed with an ASD, particularly Aspergers Syndrome, who do not have a disability. Since Simon Baron-Cohen’s article in 2000 “Is Asperger’s Syndrome /High-Functioning Autism necessarily a disability” individuals have been diagnosed with Aspergers who do not have a disability.

In the 1990s children under the age of 7 were not diagnosed with Aspergers, but since Baron-Cohen’s prospective single case study toddlers have been diagnosed with Aspergers. Baron-Cohen’s assumption that Aspergers is a heritable disorder bothers me, and that the diagnoses of the parents, one of whom had dyslexia until his Aspergers diagnosis in his thirties, were verified by Baron Cohen’s AQ Test also bothers me. (This is the test which many individuals use to diagnose themselves with Aspergers and then call themselves “Aspies”. It used to be called the Geek Syndrome Test ).

Unfortunately, since its association with both historical and present day geniuses, Aspergers has become a trendy and sought-after diagnosis.

There are also children and adults being diagnosed with atypical Aspergers and mild Aspergers. I know of one boy with a diagnosis of 70% ADHD and 30% Aspergers. I would love to know how that was calculated!

126

Speaking of obfuscating, I noticed that you have not even attempted to support your assertion that mercury is responsible for most autism cases. Hell, I’d like to see you support the idea that it’s responsible for any.

Until you do that, I don’t think anyone here has an interest in what you say.

127

Well, if one of the things they do is “diagnose” long-dead people who they never met with autism, then I can’t say I have a lot of respect for what they do.

128

I was thinking Warhol, too. The guy was “neurodiverse” out the wazoo. :eek:

129

It’s all well and good what Dr. Tony Attwood says, but Dr. Hentor the Barbarian says that there will be no integration of ADHD into the PDD disorders. Dr. Hentor the Barbarian personally feels that there are sufficient signficant differences between the disorders to make it patently clear that different processes are involved in both, and that superficial similarities are very limited. Dr. Hentor the Barbarian would very much prefer to see links to specific evidence, rather than general references to experts. Does Dr. Tony Attwood have any empirical evidence to support the inclusion of ADHD with PDD?

I’ve scanned everything you’ve posted, and I can’t find anything that supports an assertion of the misapplication of criteria. I apologize if it’s in there. I do agree that part of the process over recent decades is to improve diagnostic practices, but I don’t know of any evidence to support the assertion that severity is being frequently overlooked in diagnostic practice. Can you help me find, within the links you posted, or elsewhere, anything specific to that issue, which is actually what Marinee asserted?

130

Funny you should mention obfuscatory arguments when that is precisely what you are engaged in.

Let’s follow your logic:

  1. Chelation cures mercury poisoning.
  2. Autism is caused by mercury poisoning.
  3. Therefore, anyone who says autism is not caused by mercury poisoning is saying that chelation is quackery.

The problem here, is that no one, not a single person anywhere in this thread, has said that chelation is not the proper treatment for mercury poisoning. You are arguing a case that no one has made. The case that has been made is that mercury poisoning does not cause autism.

By way of example, let me use your logic but with a different “cause”:

  1. Antivenom cures snake venom poisoning.
  2. Autism is caused by snake venom poisoning.
  3. Therefore, anyone who says autism is not caused by snake venom is saying that antivenom does not work.

See? I’ve just made your exact same argument and by your logic I have now “proved” that snake venom causes autism. And if anyone calls me on this, all I have to do is link to studies proving that antivenom works on snake bites!

I agree.

131

I understand him (and others) to mean that ADHD and PDD’s are at either end of a spectrum of attentional behavior, and share common behavioral characteristics. From Dr. Attwood’s site, a quote from Ehlers et al, Asperger Syndrome, Autism and Attention Disorders: A Comparative Study of the Cognitive Profiles of 120 Children (http://www.tonyattwood.com.au/comparison.html)

“It is important to emphasise that all three diagnostic groups share some behavioural features, and that the Asperger syndrome and autism groups show a clear overlap of symptoms in the areas of social interaction, communication and behaviour. In fact, there is good consensus regarding a continuum of Asperger syndrome and autism at the behavioural level.”

Here’s an interesting chart, “Overlapping Behavioral Characteristics and Related Mental Health Diagnoses in Children” (http://www.betterendings.org/Overlapping_Characteristics.pdf)

A person will seek out a diagnosis (for him or herself or their child) if they’re having problems and are trying to address them. I think that’s a good thing. It makes sense that expanded popular and professional awareness of recently expanded diagnostic criteria for PDD’s would be followed by an increase in recognition of autistic characteristics in historical figures and literary characters, and an increase in actual diagnoses of living people. But that doesn’t necessarily mean that the one has inspired the other. I doubt very much that many people would be motivated to obtain a psychiatric or developmental disability diagnosis out of a desire for elevated status. A diagnosis can help a person make sense of the patterns and problems that have emerged in their life, and can help them to obtain whatever medical, educational, social, psychological or interpersonal assistance they might need to live successfully. However, a diagnosis does not confer status. Rather, a diagnosis can lead to underestimation of a person’s abilities, and it can also be used as a weapon to discredit that person.

In California, Regional Center eligibility criteria have created an incentive for parents of children without language delay to seek a diagnosis of autism for their child, rather than AS or PDD-NOS, so that they can qualify for services. Dr. Rita Eagle of the Harbor Regional Center in Torrance addressed this in a 2004 letter to the Journal of Autism and Developmental Disorders (http://www.aspires-relationships.com/Further_Commentary_on_the_Debate_Regarding_Increase%20_in%20Autism_in_California.pdf).

Me, too; that’s a wacky dx. I wonder what diagnostic scale was used, and what was the experience level of the diagnostician. The 70/30 business sounds like a pseudo-quantitative smokescreen for a clinician’s indecisiveness.

132

Well now this conversation has the potential to get past some of the usual “other vaccine on the grassy knoll” level and into some interesting stuff!

Most of what follows is at the level of IMHO, btw.

Autism is less a disease than a disability. There is no clear line to draw between normal and abnormal; “disability” and “significant” are, ultimately subjective calls. “Spectrum” gets fuzzy into “normal”. Where does sandy hair stop being blond and start being brown? Well what label serves your needs best? Early identification may identify children who might have otherwise end up not too severely affected as having “autism” but it gets them services that benefit them and gets others services that they desperately need. The label during school age opens doors for educational interventions. This broadening of the diagnostic sphere is not misapplication of the criteria, I believe it is better application of criteria, but it certainly is a reality.

It is my belief that small doses of the genes associated with autism, that aspects of what is called The Broad Autistic Phenotype (BAP) can in fact be beneficial in certain circumstances, and often at least are not a selective disadvantage. Concrete thinkers with good memorization skills and the tendency to fixate on particular subjects definitely have a place in our society. It is only when there is a larger load of these genes that more frank autism becomes manifest, that neural networks in the brain become clearly imbalanced, when these characteristics become more clearly disabling.

Is autism really increasing or is the apparent increase exclusively the result of the label developing more utility? Clearly the latter is part of it but I cannot say it is the whole story. It is also possible that our society has put more males and females who have various aspects of BAP in contact with each other and having children with each other than before.

Now I don’t especially believe that “high-systemizing” is the be-all and end-all for BAP but the fact is that people with narrow interests and skill sets that correlate with BAP are more likely to hook-up now than before - internet interest groups and on-line relationships, software, computer, and financial related jobs, etc.

Meanwhile our job as generalists is to screen, get kids services, help support parents, and fight against the well intended but wrong-headed misinformation that gets passed out there and interferes with our preventing serious diseases.

133

The difficulty is that Dr. Hentor the Barbarian is not diagnosing all the children in christendom, nor even in the US and Europe. Though it would be nice to have a person with the initials MD after their name diagnose every person who is diagnosed, the fact is that this is not happening.

My own experience is that people with the aforementioned initials are far less likely to get lost in the underlying processes, and the higher up the food chain one goes, the more likely it is that the underlying processes will be examined. My own child has had a veritable dictionary of diagnoses attached to his name in his short life, but everyone who has ever seen him who also had those initials concluded that it was not even a close call. With which conclusion I agree, I don’t find it a close call either.

But my own experience aside, I promise you that there are persons in the helping professions galore who do not find it so clear.

134

Symptoms of mercury poisoning don’t seem to to be the same as symptoms of any of the autisms. Why is that?

135

Sorry, got busy with something else.

My mention of ADHD was more in the nature of a prediction than otherwise. An impression if you like. It began as a diagnosis involving, as you say, entirely different processes. Then it was much discussed as a condition which is frequently comorbid with the ASDs, or one in which autistic traits were frequently seen. Say, around 2000, 2001. A couple years later references to the two as “associated” conditions began to pop up particularly in the context of PDD-NOS and Asperger’s. My impression is that the relationship between the disorders is progressing, let’s put it like that.

A similar relationship between the ASDs and non verbal learning disorder is also developing it seems to me. A lot of this has to do with funding, it also seems to me.

136

Bingo.

It’s my belief that the incidence of autism is only increasing because the definition of the condition has broadened substantially in the past 10 years. Kind of like how ADHD suddenly expanded in the 80’s. Ritalin earned billions of dollars for Ciba.

The conspiracy theorist in me wonders if this sudden public awareness of autism & ASD is being fueled by the major drug companies who are drumming up money for research into an efficacious medication that can be prescribed widely & indiscriminantly. Whoever patents the first medication for autism will make billions. Just like Ritalin.

The cynic in me wonders if they’ll even find one. I’m no expert, but unlike other mental disorders, autism doesn’t appear to involve a chemical imbalance at all.

137

[ Moderating ]

I have removed three posts from this thread that made specific remarks about a person who is not a member of this board and who is, arguably,* not a public figure.

Originally, only the pertinent remarks were edited out, but that action was not in keeping with the SDMB policy of Moderators not changing text of other posters’ submissions, so the posts have been removed.

If the author of any missing post would like to resubmit their initial post, they may e-mail me to request a copy of the original text so that they may remove the offending statements and re-submit it. The offending text will not be re-posted.

  • I say arguably because I can see where a case might be made that the person has edged into a “public” status, but we are going to exercise caution and such argument will not be entertained by the SDMB.

[ /Moderating ]

138

Then who is diagnosing these people?!? I assume the person diagnosing has at least a PhD, right? Mine had both an MD (neurologist) and a PhD (researcher), actually, plus another two with PhDs, assisted by a couple of MS/MAs.

Are people not getting sound diagnoses for their children? Are they relying on people without reasonable credentials to do it?

Seriously, I had no idea that parents would do that. I sure as hell wouldn’t.

139

ADD is simply a lesser effect from mercury. When my second son was diagnosed with it and prescribed Concerta, I chelated him and he was cured in less than two months. I never used the Concerta.

Denying that mercury is the main ingredient for all autism spectrum disorders is not helpful to suffering children.

There was no such thing as autism before mercury was put in vaccines.

I’m still waiting for Mrs Seidel to produce those 77 year olds at the rate of 1 in 150 to prove me wrong.

140

I hope you’re not claiming that people are always 100% of a particular syndrome. That’s never true. Every person is unique.

70/30 sounds like he’s saying the person is primarily autistic, but his condition is “co-morbid” with ADHD. “Co-morbid” is a term that pops up a lot if you read the DSM-IV.

You want to avoid any psychiatrist who comes up with a diagnosis and then tries to adjust YOUR personality to fit the diagnosis. That’s bass-ackwards, but unfortunately that’s how many doctors treat these types of syndromes. (In my experience, at least.)