Want to Tell the NIH Your Thoughts About Autism Research? The Clock's Ticking!
Wednesday January 2, 2008
There are only two more days left to let the NIH know your thoughts about the direction they should take in autism research. By the 4th, you must send your ideas as follows:
Please send responses to iacc@mail.nih.gov no later than January 4, 2008. Please limit your response to two pages and mark it with this RFI identifier NOT-MH-08-103 in the subject line. The responses received through this RFI will be collated, summarized, and provided to scientific workshop participants in January 2008. Summarized results will also be made available to the public. Any proprietary information should be so marked. Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.I put together my recommendations a few days ago. Of course, the NIH is a research institution, with no real power to change insurance policies, medical access, or other services. In addition, I've come to believe that no NIH-funded study of vaccines and autism will truly change parents' perspectives on the issue. NIH has come under too much suspicion to be the right organization to end the vaccine controversy one way or another.
With all that in mind, here were my thoughts:
A great many studies are presently looking at genetic and chemical markers for autism, none of which seem to hold any immediate promise for outcomes. While these studies are obviously important in the long term, parents and adults on the autism spectrum are still in the dark as to which existing treatments are likely to be most useful for their children or themselves. As a result, millions are spent are treatments which may or may not be useful for any individual child - and may even have an injurious impact on certain subgroups of children. Specifically, then, I feel strongly that the NIH should support research which:What will you suggest to NIH?Thank you so much for the opportunity to share these thoughts. Sincerely, Lisa Jo Rudy About.com Guide to Autism www.autism.about.com
- Seeks to define various subtypes of autism based on symptoms and severity of symptoms (including sensory disturbances, evidence of seizure disorders, gastrointestinal issues, etc.), so that comparisons of possible causes and treatments can be as useful and significant as possible;
- Seeks to compare various treatment modalities "head to head" with similar groups, so that "best practices" can be tested, evaluated, and recommended with real understanding of various options;
- Seeks to evaluate the true efficacy of "early" versus "later" interventions of various types, so that parents can make intelligent decisions about appropriate treatments for very young children;
- Seeks to evaluate the usefulness of specific "biomedical" treatments including chelation, special diets and supplements, for various subgroups of autistic individuals.
Comments
As a teacher, I suggested (under the category of “Treatment”), the development of quality education and inclusion models and teacher training programs. Under the category of “Other areas of ASD research,” I suggested the development of employment and college programs. I’m not familiar with many medical aspects, so I didn’t have much to say regarding these issues. I was curious because the website says that, “Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.” Did anyone receive an e-mail confirmation? Thanks and Happy New Year! Nicole Caldwell of www.PositivelyAutism.com
I did receive a reply. Remember: you have to put NOT-MH-08-103 in the subject line.
Lisa
Autism Guide
Thanks Lisa! I thought your suggestions were great. I know that the “subtypes” issue is getting a lot of attention, as I think it should. I’ll try re-sending my comments. I did put NOT-MH-08-103 in the subject, but I think I put some additional words as well. Thanks again, Nicole Caldwell of www.PositivelyAutism.com
Ms Rudy, you said:
“A great many studies are presently looking at genetic and chemical markers for autism, none of which seem to hold any immediate promise for outcomes. While these studies are obviously important in the long term, parents and adults on the autism spectrum are still in the dark as to which existing treatments are likely to be most useful for their children or themselves.”
With respect, I am at a loss to understand either of these statements. Dealing with the second statement above, the recent AAP report made it crystal clear that 5 decades of research have established that significant gains in all developmental domains have been found for children receiving intensive early behavioral intervention. ABA has been similarly endorsed by the Association for Science in Autism Treatment, state agencies in New York, California and Maine, and by the office of the US Surgeon General. The many parents across North America seeking ABA for their children are not in the dark about the effectiveness of ABA for their children, not at all.
See: Management of Children with Autism Spectrum Disorders
http://www.aap.org/pressroom/AutismMgmt.pdf
With respect to the first statement above referencing current studies “none of which seem to hold any immediate promise for outcomes” you must have missed the news of the study reported in Neuron and summarized in MIT News, (You can also see it on my blog site) which presented a study led by Mark F. Bear of the Picower Institute. That study pointed to currently existing mGluR5 blockers as potentially effective drugs for treating autism, drugs which are already scheduled for clinical trials.
“The research team found that a 50 percent reduction in mGluR5 fixed multiple defects in the fragile X mice. In addition to correcting dendritic spines, reduced mGluR5 improved altered brain development and memory, restored normal body growth and reduced seizures–many of the symptoms experienced by humans with FXS.
The researchers used genetic engineering to reduce mGluR5, but a drug could accomplish the same thing. Although not yet approved by the FDA, mGluR5 blockers are entering into human clinical trials. “Insights gained by this study suggest novel therapeutic approaches, not only for fragile X but also for autism and mental retardation of unknown origin,” Bear said. ”
See comment and links at http://autisminnb.blogspot.com/2007/12/mglur5-spells-hope-for-autism.html
Actually, Harold, I did blog about that particular finding - and you’re right: it’s probably the one and only finding that seems likely to produce outcomes relative to treatments anytime soon.
And I suspect you and I will continue to disagree on ABA: while I agree that it can be effective, I think it has been promoted based more on the fact that it’s easy to study than on any comparison of ABA to other treatment modalities. That’s why I’m pushing for head-to-head comparison of treatments with similar children: to find out whether there really and truly is anything about ABA that makes it more effective than treatments like floortime, RDI, and so forth.
I’m pushing for similar comparative studies of earlier/later intervention and biomedical/non-biomedical intervention for similar reasons. I suspect that there are a lot of “truths” being passed from hand to hand that have never really been tested.
Best,
Lisa (Autism Guide)
Excellent recommendations Lisa. I agree with each of them. As you say, the majority of the research to date - ie genetic - will not help the thousands of autistic children who are physically ill with serious medical conditions and in need of serious care right now. The more genetic research that is done, the more it is proven that it is not a “genetic” inherited disorder.
I am sorry that Mr. Doherty is at a loss of undertanding about your statements because your statements are at the center of what every parent, especially those with newly diagnosed children, is struggling with. There are no “best practices”, there is no standard treatment. It is probably different for each child. Which goes back to your recommendations of identifying subgroups of children within the spectrum and which will best benefit from ABA, floortime, biomed, other medical treatment ie GI intervention, etc.
Our children need to be better understood and their needs must be evaluated, studied and treatments implemented.
Ms Rudy it really isn’t about our respective personal views about best practice. I cited the leading reviews of autism inteventions from the past 10 years including the most recent AAP review all of which confirm ABA as the only evidence based effective intervention.
Ms Cedillo your opinion aobut my lack of understanding is certainly puzzling. Sutides have been done for decades showing the benefits of ABA. No other intervention is remotely close to ABA in terms of being evidence based in its effectiveness. It appears that no amount of study and no review whether it be by the American Academy of Pediatrics, the OFfice of the US Surgeon General, state agencies in NY, California and Maine or the Association for Science in Autism Treatment will be persuasive for you. Because they point to ABA as the gold standard intervention.
Harold - my point is actually not in conflict with yours. Indeed, ABA IS the subject of many studies, and HAS the most evidence-based positive outcomes.
My frustration is that I believe this is not necessarily because it is the BEST PROGRAM, but because it is the most easily researched.
ABA lends itself beautifully to structured research. It sets very specific, quantifiable goals such as a child’s ability to say a particular word, etc. It’s easy to replicate (in general, ABA practitioners can do the same program in the same way over and over again(. And it’s relatively ease to train therapists (it’s a short course - you don’t need to be an OT, etc.).
Developmental therapies, by contrast, require a higher level of training; are more individualized; less straightforward to replicate; etc.
In addition, behavioral studies are fairly old…so there’s existing research.
I would LOVE to see other approaches studied in similar depth - and compared to ABA for efficacy. This has not been done.
Lisa (Autism Guide)
This is what I wrote the NIH:
I am writing to you because of the apparent increase in the rate of Autism which is sometimes referred to in the media as the “autism epidemic.” Having done research on the subject it’s my conjecture that a possible reason for the increase in autism for the category known as Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS) is due to the SIDS prevention “Back to Sleep Campaing which began in 1993 and causes the following side effects in many infants according to studies in peer-review journals (Pediatrics, JAMA, et al.):
* Social skills delays at 6 months
* Motor skills delays at 6 months
* Increased rates of sleep apnea (4:1 male to female ratio in mild cases and a 10:1 male to female in severe cases).
* Increased rates of deformational plagiocephaly.
Considering the following:
* Social skills delays are associated with PDD-NOS
* Motor skills delays are associated with speech and language delays and disorders
* Sleep apnea is associated with emotional problems and learning disabilities
* Deformational Plagiocephaly is associated with Mental delay, psychomotor delay, and visual impairment
* U.S . Back Sleep Position Trend Rate: 1992 (13%), 1999 (65%), 2006 (76%)
* Between 1987 and 1993 most industrialized countries began supine sleep campaigns.
Thomas J. McCabe
thomasjmccabe321@gmail.com
Relevant Articles and Data:
NISP Data:
http://dccwww.bumc.bu.edu/ChimeNisp/Tables_in_PDF/NISP%201992-2006%20The%20usual%20sleep%20position.pdf
Supine and Prone Infant Positioning: A Winning Combination
A Reassessment of the Back to Sleep Campaign
http://cgi.thescientificworld.co.uk/cgi-bin/processHtml.pl?Id=2005.03.71.html&format=Dreamweaver
The Flip Side of Back to Sleep
http://www.oandp.com/edge/issues/articles/2006-12_02.asp
Neurodevelopmental Delays in Children with deformational plagiocephaly
http://www.plasreconsurg.com/pt/re/prs/abstract.00006534-200601000-00032.htm;jsessionid=Hh6V6gpQpxCp2L2lDWZcNQBQd3WQpcrcrb8295nW2GHxCkL4xBfL!1609592453!181195628!8091!-1
Obstructive Sleep Apnea in Infants and it’s Management with Nasal Continous Positive Airway Pressure
http://www.chestjournal.org/cgi/content/full/116/1/10
Dear Sir/Madam,
I am a former food process engineer who believes, because recent studies have implicated genes which code for glutamate synapses in ASD, we should investigate the effects of both INGESTED and INJECTED excitatory free amino acids (glutamic acid and aspartic acid) on children with these “autism genes”.
If excitatory free amino acids affect ASD children, it would explain both the impact of GF-CF diets AND a vaccine link. Vaccines have free glutamic acid added to preserve the virus. I have created and attached a chart showing where free glutamic acid comes from. It is found in extremely high amounts in processed wheat and dairy products – so much so that food manufacturers use these two items routinely to produce free glutamic acid in foods but with a “clean label”.
Consequently, a child may not improve on a GF-CF diet alone, because it doesn’t limit all potential sources of free glutamic acid – like soy. Children are tested at birth for PKU and phenylalanine is limited until the brain is hardwired by the age of 7. Why not treat the predisposition for autism similarly and limit the glutamic and aspartic amino acids in the diets of children with autism genes?
ASD also includes errors of metabolism for sulfur containing amino acids – like cysteine. Cysteine is converted to taurine and glutathione by the liver. Taurine regulates heartbeat and osmotic balance as well as bile production and was found to be low after a seizure. In ASD, symptoms include arrhythmias, digestive disorders and a high rate of epilepsy – suggesting that taurine production may be compromised. Glutathione levels are also lower in ASD leading one to conclude that possibly, cysteine metabolism may be responsible for the myriad and seemingly unrelated additional symptoms of ASD. It should be noted that glutamate interferes with the handling of cysteine. When cysteine metabolism is compromised, homocysteine levels may increase. The lower levels of glutathione may put ASD individuals at risk of mercury poisoning, since glutathione helps eliminates mercury from the body.
It should be noted that the NMDA receptors that respond to both glutamate and aspartate are found in the amygdala - part of the limbic system involved in the perception of taste and smell as well as fear. Activating the amygdala in ASD, causes gaze avoidance. ASD children may also over-react to smells and tastes and face to face encounters can overwhelm them with fear. Limiting excitatory amino acids that target the amygdala may help.
Japan consumes more MSG, and fish (a dietary source of mercury) than nearly any other country. Compared to the amount of mercury consumed in fish and the amount of MSG consumed in the diet, the MMR contribution was probably small compared to a typical Japanese diet. In Japan, the MMR vaccine was stopped in 1993. Autism rates still increased. Perhaps in Japan, the diet plays more of a role in autism than the vaccines. Children from other countries with a lower consumption of fish and MSG may find a stronger correlation between vaccines and autism.
New research studies into ASD should include people who are sensitive to the food additives MSG and aspartame. MSG-sensitive persons have reported a distinct lessening of symptoms by using taurine, ibuprofen, CoQ10, Vitamins B6 and B12, sugar, foods high in butyric acid – like butter, and Magnesium. Perhaps they share some of the same genes that predispose a child to ASD. New treatment studies should look into these easily available, inexpensive and relatively safe compounds.
Based on what I have observed, here are my recommendations:
1. Treatment of ASD?
REMOVAL of excitatory amino acids (glutamate, aspartate) from VACCINES Glutamate and aspartate restricted diet (similar to treatment for PKU) in addition to GF/CF diet Supplementation of taurine, glutathione, vitamins B6, C, magnesium, CoQ10, Increased carbohydrate Labeling of free glutamic and aspartic acid on food labels Glutamate blockers, anti-histamines and leukotriene blockers for children already suffering or getting vaccinated We should calm their surroundings, encourage quiet tasks and less-threatening contact to enhance communication. We need to give them space and not overwhelm them.
2. Diagnosis of ASD?
Test for autism genes preferably AT BIRTH like PKU Tests for aspartic acid, glutamic acid, glutathione, taurine, cysteine, homocysteine
3. Risk factors for ASD?
Autism Genes
Sensitivity to excitatory amino acids, low taurine, low glutathione Sulfite Sensitivity Vaccination with glutamic acid as a preservative Damage to the microglia Overactive immune system “Junk food” diet Aspartame in medications or vitamins or foods Multiple food allergy
4. Biology of ASD?
Excess CNS sensitivity,
Inability to handle sulfur-containing amino acids, Overactive immune response – linked to Nerve Growth Factor
5. Other areas of ASD research?
Common genes in Alzheimer’s, Parkinsons, ALS, MS, and excitatory amino acid sensitivity.
Study persons without ASD who suffer from overactive CNS or neurodegenerative disease and sensitivity to excitatory amino acids. See if they share same genes.
Could Alzhemier’s sufferers simply be ADS children whose brains were hard-wired before damage by the environment?
Thank you for this opportunity to share my ideas on this very important topic,
Please see this webpage that clearly shows why a wheat and dairy based processed food diet may be very harmful to a child sensitive to excitatory amino acids.
http://www.msgtruth.org/avoid.htm
Hello Everyone,
There is no cure for Autism. However the is hope with alternative treatments and therapies. I have seen many children come and go into different therapies and treatments but the parents never stick long enough to the therapies and treatments to see results. There are so many stories out there about a child getting better in a short amount of time but thats like one in every 1000 children. We have stuck it out with one doctor for over two years and now we have just started seeing the results that we were expecting. Children who are sick need to time to heal and giving different types of treatment every 4 to 5 months is not enough time to see the benefits. Give your primary alternative doctor a chance and you will see the reults.
Hi Mr. Doherty,
I am not opposed to ABA. However, as our ABA provider told us, ABA is not effective in a child as medically ill as our child was (at 2 yrs old) and continues to be to this day (unfortunately). ABA was not the Gold Standard for Michelle because of other medical autism associated illnesses. We spent thousands out of pocket with nationally known and recognized ABA providers. What happened is Michelle was so physically ill that she was medically discharged from her therapy. It was not viable for them to continue therapy.
What I was trying to point out is that ABA should not be the only thing that is studied. It’s a shame that only ABA has been so widely studied when there are other modalities that may work in a different manner, but all working to help the autistic child. In fact, I think ABA should be covered by insurance companies as a viable treatment. What I took Lisa to mean is that other methods of learning therapy, along with biomed interventions, etc., need to be studied, not just ABA. Parents are bombarded with decisions to make for treatment for their child(ren) and yet ABA is one of the only ones that has been studied. I think ABA is effective given the right circumstances. It helped Michelle to the point that it could given the degree of her autism associated illnesses and the amount of time spent in the hospital/procedurs/doctor’s offices/labs. Each parent deserves to know all options available and to know that they have been studied. Since the IACC is looking for suggestions, I think this is an excellent suggestion on Lisa’s part because we need these other areas studied with the same vigilance and dollars as is currently being spent on genetics and has been spent on ABA.
Theresa