Sunday, May 21, 2006

Open Discussion: Science, Pseudo-Science, Anti-Science and Autism

The concepts in the title are fair game in this post. I dropped the need for an ID to comment. No personal attacks, and while honest sarcasm is not banned, let's keep it in good taste.

Have at it.

16 Comments:

Anonymous Camille said...

Neubrander says you have to inject kids with Methyl B12 forever, it can cure some of them 100% he says, but apparently, if you stop, they regress badly. Do you suppose if parents keep it up they will discover the toxicity level of B12? There was one study that showed B12 encouraged a kind of tumor growth. Wouldn't that be a wonderful thing to discover, that it does the same in children who are treated like lab rats? (honest sarcasm)

5:58 PM  
Blogger Interverbal said...

Hi Camille,

And it goes without saying that there is no controlled research to that shows B12 to increase langauge or to cure children. However are being made about it, http://www.stillpointhealth.com/BenefitsofB12Therapy.html

This meets full criteria for pseudo-science.

8:13 PM  
Anonymous Anonymous said...

I am so scared that if I do not try some of the medical stuff touted all over the place that I am not doing a good job. I wish someone would tell me if the DAN diet and enzyme diet and fish oil and all the biomedical things have any value.Where do you get the TRUTH?

10:05 PM  
Blogger Julia said...

Anonymous,

We saw much better results going with the recommendations of a pediatric neurologist than with any combination of supplements. You might try to set up an appointment with one and see what s/he says.

(And the neurologist has him on over-the-counter vitamin supplements, besides prescription meds, and the vitamin mix wasn't quite like anything I'd heard of and Googling didn't bring up any apparent DAN! hits.)

10:23 PM  
Blogger Interverbal said...

Hi Anonymous,

"I am so scared that if I do not try some of the medical stuff touted all over the place that I am not doing a good job."

I would argue that no one should be guilt tripped into a decision. They should be given the actual information (data) and then be allowed to make an informed choice as to whether to pursue it.

"I wish someone would tell me if the DAN diet and enzyme diet and fish oil and all the biomedical things have any value."

None of the above have controlled trials which back them up. They sometimes have clinical data, which is still pretty weak as a proof, and they have anecdote.

“Where do you get the TRUTH?’

There is no set source for the truth in autism or even in science. There is no where I could recommend to you as the one and true place. You are going to have to look at the arguments for and against, and scour them for merit, which includes type of scientific proof and ethics of the treatment.

You can go here to see some arguments for biomed treatment http://www.generationrescue.org/

And you can go here for arguments against
http://www.autism-watch.org/

Alternately, if you want to get the full opinion of someone, you are welcome to raise an specific issue on this blog and probably on a number of other blogs which can be found at
http://www.autism-hub.co.uk/

11:01 PM  
Blogger notmercury said...

Hi anonymous/Scared,
I know the feeling well. There is a sense of urgency and fear that you may miss a window of opportunity. No one wants to consider what it will be like to look back and wonder if you did all you could to help your child, whether it's biomedical or behavioral.

It's impossible to know unless you try something but my experience has been to take it slow and try to resist the feeling that you aren't doing enough. Sometimes doing less is the right thing to do, especially when the 'more' involves expensive, unproven, and potentially dangerous treatments.

Good luck and never stop asking those questions.

6:33 AM  
Blogger Joseph said...

I am so scared that if I do not try some of the medical stuff touted all over the place that I am not doing a good job. I wish someone would tell me if the DAN diet and enzyme diet and fish oil and all the biomedical things have any value.Where do you get the TRUTH?

Aren't you scared that your might hurt your child by trying some of the medical stuff touted all over the place?

I'd recommend just waiting for the clinical evidence, if any.

8:21 AM  
Anonymous Anonymous said...

anyone know anything about the genetic testing stuff esp dr. Yasko's?

12:20 PM  
Blogger notmercury said...

Anonymous said: anyone know anything about the genetic testing stuff esp dr. Yasko's?

Questions to ask:
Which genes?

How and where were they sequenced?

Are they known to be associated with autism?

Can they be verified at an independent lab?

Where was the study published?

Why isn't this big news?

Does Yasko sell supplements based on the results of her nutrigenomic RNA hocus pocus?

4:51 PM  
Blogger Interverbal said...

Hi Anonymous,

I don't very much about Dr. Yasko's genetic testing and Dr. Yasko doesn't seem to release enough about it to allow for us to thoroughly review it, so I will not be of much help in this regard.

Dr. Yasko's website is at http://www.autismanswer.com/
If anyone can glean more information than I have, it would be great if they can post it.

Anonymous, if you come across more information about this, you are welcome to post it here and I and probably others can help you review it (if you like).

11:05 PM  
Blogger María Luján said...

Hi Jonathan
Are you interested about discussion on the main points of the last posts, that is:
a- Nutritional approaches ( mainly diet, fatty acids, enzymes, other)
b- Genetic testing
My own position is very critic of the promotion of any approach considered as "The approach to cure", as you already know, but I have researched a lot about these topics to present some ideas and published manuscripts about.
Please let me know
Ma Luján

4:03 PM  
Blogger Interverbal said...

Hi Maria,

Yes, absolutely.

Iam sorry it has taken me so long to maske this reply,I have been at a conference for 5 days.

11:31 PM  
Blogger María Luján said...

Hi Jonathan
I will return on weekend. Really a lot of work this week (and also at home). Thank you for your patience
María Luján

5:56 PM  
Blogger María Luján said...

First of all, I think that in a frontline research as it is today research in autism there are several aspects to consider in what is termed like science. I consider that the scientific methods with adequate testing (and with all the needed ones) and methodology and the overall analysis of possible collaborators (for now) is essential to do proper research of any kind (epidemiological, test, diagnostic or clinic). However, in so complex conditions of heterogeneous kind like ASD many many times the questions in research are not done the right way for me (because we do not know the causes, we only have clues).

There are several conditions that many autistic children present concomitant to autism related to nutritional imbalances. I will present the title of some very recent published science to support it:

J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S120-7.
Early medical history of children with autism spectrum disorders.
Niehus R, Lord C.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=16685178&query_hl=1&itool=pubmed_docsum

Dev Med Child Neurol. 2006 Jun;48(6):500-7.
Congenital anomalies associated with autism spectrum disorders.
Wier ML, Yoshida CK, Odouli R, Grether JK, Croen LA.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=16700944&query_hl=1&itool=pubmed_docsum

Chronic diarrhea/constipation
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=16685179&query_hl=1&itool=pubmed_docsum
J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S128-36.
Frequency of gastrointestinal symptoms in children with autistic spectrum disorders and association with family history of autoimmune disease.
Valicenti-McDermott M, McVicar K, Rapin I, Wershil BK, Cohen H, Shinnar S.

Yeast/bacterial overgrowth of bowels

J Med Microbiol. 2005 Oct;54(Pt 10):987-91.
Differences between the gut microflora of children with autistic spectrum disorders and that of healthy children.
Parracho HM, Bingham MO, Gibson GR, McCartney AL.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=
16157555&query_hl=7&itool=pubmed_docsum

Appl Environ Microbiol. 2004 Nov;70(11):6459-65.
Real-time PCR quantitation of clostridia in feces of autistic children.
Song Y, Liu C, Finegold SM.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=
15528506&query_hl=11&itool=pubmed_docsum

Impaired sulfation
Biol Psychiatry. 1999 Aug 1;46(3):420-4.
Sulphation deficit in "low-functioning" autistic children: a pilot study.
Alberti A, Pirrone P, Elia M, Waring RH, Romano C.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=10435209&query_hl=16&itool=pubmed_docsum

Toxicology. 1996 Jul 17;111(1-3):43-65. Related Articles, Links
Phenotypic variation in xenobiotic metabolism and adverse environmental response: focus on sulfur-dependent detoxification pathways.
McFadden SA.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=8711748&query_hl=16&itool=pubmed_docsum

Leaky gut syndrome

Acta Paediatr. 2005 Apr;94(4):386-93.
Tight junctions, leaky intestines, and pediatric diseases.
Liu Z, Li N, Neu J.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=16092447&query_hl=19&itool=pubmed_docsum

Exp Biol Med (Maywood). 2003 Jun;228(6):639-49.
Intestinal pathophysiology in autism.
White JF.
http://www.ebmonline.org/cgi/
content/full/228/6/639

Mineral deficiencies (zinc, magnesium, selenium)
Int J Dev Neurosci. 2002 Jun-Aug;20(3-5):297-9.
The Colorado mental retardation and developmental disabilities research center.
Crnic LS.

Biol Trace Elem Res. 2006 Feb;109(2):97-104.
Magnesium profile in autism.
Strambi M, Longini M, Hayek J, Berni S, Macucci F, Scalacci E, Vezzosi P.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=16443999&query_hl=41&itool=pubmed_docsum

Malabsorption/malnutrition
J Autism Dev Disord. 2003 Aug;33(4):449-54.
Plasma amino acids profiles in children with autism: potential risk of nutritional deficiencies.
Arnold GL, Hyman SL, Mooney RA, Kirby RS.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=12959424&query_hl=35&itool=pubmed_docsum

Gluten/casein sensitivity

Gabrielli M et al. Association between migraine and Celiac disease: results from a preliminary case-control and therapeutic study. Am J Gastroenterol. 2003 Mar;98(3):625-9. PMID: 12650798
Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry. 2002 May;72(5):560-3. PMID: 11971034
http://jnnp.bmjjournals.com/cgi/
reprint/72/5/560.pdf
Headache and CNS white matter abnormalities associated with gluten sensitivity. Neurology 2001 13;56(3):385-8

Esposito C et al. Expression and enzymatic activity of small intestinal tissue transglutaminase in celiac disease. Am J Gastroenterol. 2003 Aug;98(8):1813-20. PMID: 12907337
“Tissue transglutaminase is more expressed and active in defined areas of the small intestinal mucosa from patients with CD. The presence in the celiac mucosa of proteins able to act as amine-donor substrates suggests that tissue transglutaminase-mediated post-translational modification of proteins cross-linked with gliadin peptides may represent a pathogenic mechanism of CD.”
Adequate testing for celiac disease seems the correct way to determine if it is present.
Others
1-Colic in breast-milk-fed infants: treatment by temporary substitution of neocate infant formula. Acta Paediatr 2000 Jul;89(7):795-802

2-Development of cow's milk allergy in breast-fed infants. Clin Exp Allergy 2001 Jul;31(7):978-87

3-Cow's milk allergy in infancy. Curr Opin Allergy Clin Immunol. 2002 2(3):217-25

4-Cow's milk allergy presented with bloody stools from day 1 of life. Eur J Pediatr. 2003 Mar;162(3):214-5

5-Host A. Frequency of cow's milk allergy in childhood. Ann Allergy Asthma Immunol. 2002 Dec;89(6 Suppl 1):33-7. PMID: 12487202

6-Bahna SL. Cow's milk allergy versus cow milk intolerance. Ann Allergy Asthma Immunol. 2002 Dec;89(6 Suppl 1):56-60. PMID: 12487206

7-Magazzu G, Scoglio R. Gastrointestinal manifestations of cow's milk allergy. Ann Allergy Asthma Immunol. 2002 Dec;89(6 Suppl 1):65-8. PMID: 12487208

8-Iacono G et al. Severe infantile colic and food intolerance: a long-term prospective study. J Pediatr Gastroenterol Nutr. 1991 Apr;12(3):332-5.

Facing this kind of symptoms, adequate testing and exclusion diets are the published commented path .

Impaired antioxidation-there are a lot of published manuscripts about this finding in some autistic children

Omega-3 fatty acid deficiency
Prostaglandins Leukot Essent Fatty Acids. 2004 Apr;70(4):383-90.
Clinical trials of fatty acid treatment in ADHD, dyslexia, dyspraxia and the autistic spectrum.
Richardson AJ.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=15041031&query_hl=35&itool=pubmed_docsum

Prostaglandins Leukot Essent Fatty Acids. 2001 Jul;65(1):1-7.
Plasma fatty acid levels in autistic children.
Vancassel S, Durand G, Barthelemy C, Lejeune B, Martineau J, Guilloteau D, Andres C, Chalon S.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=11487301&query_hl=58&itool=pubmed_DocSum


Significant food allergies

CNS Neurol Disord Drug Targets. 2006 Apr;5(2):197-204.
Gastrin-releasing peptide receptor as a molecular target for psychiatric and neurological disorders.
Roesler R, Henriques JA, Schwartsmann G.

Along with disturbances in feeding (pica, very narrow selection of food, cravings for certain foods)


a- Nutritional approaches (mainly diet, fatty acids, enzymes, other)

Under careful and trustable testing in trustable labs, it is clear that a lot of disconfort (and even pain) can be addressed with the proper treatment of GI issues and malabsorption conditions at an individual level IF IF IF ( emphasis mine) proper tests and trustable labs and trustable doctors are found.. What published science provides today are clues to the doctors in practice (for me) but not a proven, stablished testing procedure. All the most recent published science, including the Cochrane review about GFCF diet, asks for more research in the field.

b- Genetic testing
There are a lot of published manuscripts about the issue. These are some of them :

Eaton DL. Biotransformation enzyme polymorphism and pesticide susceptibility. Neruotoxicology 2000;21(1-2):101-112.

Harman D. Role of free radicals and radiation chemistry. J Gerontol 1956;11:298-300.

Harman D. Free radical theory of aging: consequences of mitochondrial aging. Age 1983;6:86-94.

James P. [Panel discussion on the relationship between genetic polymorphisms and nutrition.] Nutrition Reviews 1998;56(2):S54-S77.

Strachan T, Read AP. Human molecular genetics. New York: John Wiley and Sons; 2000.

Rosenberg IH, Rosenberg MD. The implications of genetic diversity for nutrient requirements: the case of folate. Nutrition Reviews 1998;56(2):S47-S53.

Williams JW. Biochemical individuality: the basis for the genetotrophic concept. New Canaan (CT):Keats Publishing; 1998.

Ye SQ and Kwiterovich Jr, PO. Influence of genetic polymorphisms on responsiveness to dietary fat and cholesterol. Am J Clin Nutr 72(suppl):1275S-84S.

And here there are many more
http://www.exploringautism.org/
genetics/articles.htm

In this field, researchers are working very actively to identify subgroups of ASD in terms of from 5 to near 20 genes have been detected as potentially linked. Besides, duplication can play a role and several polymorphisms related to biochemical pathways can be involved. However, there is no current agreement at the best of my knowledge again of a widely accepted/trustable procedure of methodologic genetic testing in autism.
Recent publications

1-A Family Based Linkage Analysis of HLA and 5-HTTLPR Gene Polymorphisms in Sardinian Children with Autism Spectrum Disorder.

Guerini FR, Manca S, Sotgiu S, Tremolada S, Zanzottera M, Agliardi C, Zanetta L, Saresella M, Mancuso R, De Silvestri A, Fois ML, Arru G, Ferrante P.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids
=16698432&query_hl=68&itool=pubmed_docsum
2-
I think this abstract presents the current status of the situation: a lot of clues about some genes/polymorphisms, lack of definite answers.
Eur J Hum Genet. 2006 Jun;14(6):714-20.
Genetics of autism spectrum disorder.

Klauck SM.
1Division of Molecular Genome Analysis, Deutsches Krebsforschungszentrum, Heidelberg, Germany.

Autism is a highly heritable complex neurodevelopmental disorder characterized by distinct impairments of cognitive function in the field of social interaction and speech development. Different approaches have been undertaken worldwide to identify susceptibility loci or genes for autism spectrum disorders. No clear conclusions can be made today about genetic loci involved in these disorders. The review will focus on relevant results from the last decade of research with emphasis on whole genome screens and association studies

3- Hum Immunol. 2006 Apr-May;67(4-5):346-51. Epub 2006 Apr 3.
The Association and Linkage of the HLA-A2 Class I Allele with Autism.
Torres AR, Sweeten TL, Cutler A, Bedke BJ, Fillmore M, Stubbs EG, Odell D.
Center for Persons with Disabilities, Utah State University, Logan, UT, USA.

Previous research has revealed associations between autism and immune genes located in the human leukocyte antigen (HLA). To better understand which HLA genetic loci may be associated with autism, we compared the class I HLA-A and -B alleles in autistic probands with case control subjects from Caucasian families. The frequency of HLA-A2 alleles was significantly increased in autistic subjects compared with normal allelic frequencies from the National Marrow Donors Program (NMDP) (p = 0.0043 after allelic correction). The transmission disequilibrium test for the A2 allele revealed an increased frequency of inheritance for autistic children (p = 0.033). There were no significant associations of autism with HLA-B alleles; however, the A2-B44 and A2-B51 haplotypes were two times more frequent in autistic subjects. The association and linkage of the class I HLA-A2 allele with autism suggests its involvement in the etiology of autism. Possible roles are discussed for the HLA-A2 association in the presentation of microbial antigen within the central nervous system and/or in the establishment of synaptic and neuronal circuits in the developing brain.

Again, in terms of nutritional approach or genomic testing, there are no available definite conclussions published, althought there are available many clues.

Personally, I am very concerned about long term safety, efficiency , potential of secondary effects, balance of benefits/risks and dangers of any intervention (nutritional or of any kind). Personally also I am very concerned about trustable doctors and to know about serious information and not serious information, in research and in practice.

Under my personal view as a mom of an autistic child I must be the best advocate for the health of my son at all levels (emotional, physiological, educational, medical,spiritual) with the most responsible and informed decissions possible.

María Luján

1:16 PM  
Blogger Interverbal said...

Hi Maria,

Thanks for posting, I have some comments on the research you cite:

My main complaint is that this research (about ¾ of which I have read) is that it doesn’t establish a rate to which these things are true in autism, in a satisfactory way.

This a big problem for studies like: J Med Microbiol. 2005 Oct;54(Pt 10):987-91.
Differences between the gut microflora of children with autistic spectrum disorders and that of healthy children.
Parracho HM, Bingham MO, Gibson GR, McCartney AL.

Some of the other studies do not look at only autism and this may confound any conclusions even though there are component analyses.

Others are related, but don’t look at autism itself in a meaningful way: Host A. Frequency of cow's milk allergy in childhood. Ann Allergy Asthma Immunol. 2002 Dec;89(6 Suppl 1):33-7. PMID: 12487202

The genetic research is a touch better, but still contains a lot of uncertainty including the one you cite from the center I am affiliated with: Hum Immunol. 2006 Apr-May;67(4-5):346-51. Epub 2006 Apr 3.
The Association and Linkage of the HLA-A2 Class I Allele with Autism.
Torres AR, Sweeten TL, Cutler A, Bedke BJ, Fillmore M, Stubbs EG, Odell D.
Center for Persons with Disabilities, Utah State University, Logan, UT, USA.

Although, you have made this point yourself, I wish to reiterate that, there is not certainty via the research thus far. We don’t know what we are looking at, so to speak.

3:46 PM  
Blogger María Luján said...

Hi Jonathan
I agree with you when we are talking at a population level of ASD disorders. For example the questions to be answered properly are
1-How common is .... ( here one of the medical conditions I cited or even others to be researched or note especifically mentioned) in ASD?
2- Why ...... (here one of the medical conditions I cited or even others to be researched or not especifically mentioned)is present?

The first group of questions are far more simple to answer than the second.
When we talk about an individual autistic person, the questions related to this research, having the right medical support can be different and can be helpful, based on the adequate testing:
1-Has this individual autistic person celiac disease?
2-Has this individual autistic person milk allergy (or others food allergies?
and so on.
María Luján

8:35 AM  

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