A letter from India

Regular readers may remember an earlier post of mine about Action For Autism in India (AFA) called Put Children First. I praised their positive attitude to autism and their fantastic achievements on a limited budget. I compared this with the mercury militia in the USA, particularly JB Handley of Generation Rescue who believes all autism is caused by mercury poisoning and spent more on advertizing campaigns than the entire cost of establishing the National Autism Centre in Delhi.

Then I read about an Indian mother on an internet list who was doing Hyperbaric Oxygen Therapy on her son because he might be at risk of developing autism. The son is 10 months old! So I wrote to AFA to warn them that quackery had reached their shores.

 [Edit: I have deleted excerpts from an email that I quoted in error. I stand by my opinion that anyone promoting HBOT or chelation as a treatment for autism is promoting quackery. Action for Autism (India) have no wish to be drawn into this controversy. They are concentrating instead on the work that is summarized in Merry Barua's contribution to the AWARES Conference.]

The shame of it is that the message parents are getting from the affluent west is that money buys a cure. So they pay for expensive “therapies” like HBOT and chelation while AFA struggles to find the money for its education programme, which is much cheaper and, more to the point, actually works.

The good news is that the first national autism centre in India has been established by AFA. It will be inaugurated by Mrs Sonia Gandhi on September 8. But it is still not paid for. You can help by giving money, or visit their wishlist. They also need books about autism so if we all donate one from our shelves that will help to build up their library. And if you are not in a position to give anything I am sure that Merry would welcome messages of encouragement and support.

Merry Barua
Action For Autism (AFA)
Sector 5 Jasola Vihar, Behind Sai Niketan New Delhi 110025

Tel: 91 11 65347422, 91 11 32964730
Email: autism@vsnl.com

Website: http://www.autism-india.org

AFA’s Vision is a society that views the interdependence of people of every ability as valuable and enriching and seeks to provide equal opportunities to all

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35 thoughts on “A letter from India

  1. How sad that the Western influence on India continues to be a negative one. Thank goodness there are enlightened doctors out there as well.

  2. I’m the mother of the 10 month old referred to in this article. It makes sense to be in possession of the facts before commenting. Irresponsibly at that. If anyone wants the facts and is not just selectively interpreting information to reconfirm previously held notions, they’re welcome to talk to me.

  3. “Then I read about an Indian mother on an internet list who was doing Hyperbaric Oxygen Therapy on her son because he might be at risk of developing autism. The son is 10 months old!”

    I’ve seen this mother’s internet posts. The child has cerebral hypoperfusion, due to anoxia at birth, and therefore is potentially at risk of oxygen radical damage due to local ischemia/hypoxia. HBOT is known to improve the recovery of stroke patients following and during ischemic insult to CNS tissues, by improving blood flow to damaged tissues where ischemia has exacerbated free radical formation. Recent research, out of the Blue Ridge Medical Center in Virginia, USA, contends that this therapy may attenuate autism symptoms, for the same reason.

  4. S. Baruah and Chiara
    I referred briefly in my post to a parent using HBOT to prevent autism. I believe that people advertizing the use of HBOT to cure or prevent autism are quacks. The only paper I know of, by Rossignol, that claims any benefits for HBOT in the treatment of autism is deeply flawed. Autism Street has a good discussion of Rossignol’s research.
    A major HBOT for autism practitioner in the USA, Bradstreet by name, has dubious qualifications and is an evangelical christian who has advocated exorcism as a cure for autism.
    These people are my targets for criticism. HBOT is a valid treatment for certain disorders. If this child needs that treatment, fine. But HBOT has no proven worth in the treatment of autism and may even cause damage by increasing oxidative stress in autistic children.
    Also, all HBOT is not the same. The quacks use a “toy” HBOT device rather than a proper Hyperbaric chamber. Checkout Autism Diva’s discussion for more information.
    Please understand that my targets are the pseudo scientists and the quack doctors who peddle myths about autism. I have no quarrel with parents who are seeking treatment for genuine medical conditions. But if a parent thinks they can cure autism with a quack remedy I will try and correct them.

  5. I just saw your comment on this post. As to the nature of the “toy” HBOT, I have this to say.If I do the regular HBOT, you’ll tell me its risky. So I say let’s do the milder variety to see if there are any effects-positive or otherwise-before going on to do regular HBOT. Then you’ll tell me it’s quackery.What exactly would you have me do? Standard therapy can help so much and not beyond. Standard therapy is not going to facilitate neural repair. I’m willing to try anything that is reasonably safe and has a decent chance of helping. If in doing so, I spend my own hard-earned money, how is it anyone else’s business?

    Please show me the research(and I don’t mean hypotheses) that say mHBOT, without any oxygen enrichment, is dangerous for a child . We’re speaking of about 10 feet under water at room air, which I am given to understand (I don’t have the research at this point) increases the concentration of oxygen in blood by roughly 50%. There is no way anyone can rule out the possibility that this may be therapeutic.

    My child’s health and safety are not of greater concern to a detached observer like you than they are to me and my family and I might add that your concern would have been better expressed in an e-mail to me or in the forum where you saw my post than in a public place such as this.

  6. I was enraged at the implication that Iwould fall prey to quacks and that in the process I would risk my son’s well being. Hence the reaction. I’ve said what I had to say and I won’t be coming back here. If anyone wants the research I’m talking about they can mail me at the email address given here.

  7. The child has cerebral hypoperfusion, due to anoxia at birth, and therefore is potentially at risk of oxygen radical damage due to local ischemia/hypoxia. HBOT is known to improve the recovery of stroke patients following and during ischemic insult to CNS tissues, by improving blood flow to damaged tissues where ischemia has exacerbated free radical formation. Recent research, out of the Blue Ridge Medical Center in Virginia, USA, contends that this therapy may attenuate autism symptoms, for the same reason.

    So the child had reduced blood flow to the brain (cerebral hypoperfusion) caused by lack of oxygen to the brain at birth (anoxia). [shouldn't that be the other way round?] This suggests a potential risk of oxygen radical damage to the brain caused by lack of oxygen to the brain (anoxia) or a reduced blood supply to the brain (ischemia, or should that be cerebral hypoperfusion?)

    Or, there was a problem with oxygen at birth so we will give the child more oxygen now (10 months later) to repair the damage now.

  8. Hi, I tried to access the details of Ms S Baruah who is using HBOT with her child, but the link doesn’t work. There is also no reference to the website where she posts her messages. Is it possible to find this out? Thx

  9. The fact that obstetric complications increase the chances of developing autism is I think fairly well accepted. Autism is a significant comorbidity with cerebral palsy and you only have to be on the cerebral palsy groups to know that in a lot of cases birth asphyxia has caused both cp and autistic features. So I am really not in agreement with you if you suggest that all autism, especially the PDD-NOS subtype, is genetic. It most emphatically is not.

    I am perfectly justified in trying to treat the brain injury caused by the birth asphyxia. The research on the use of HBOT for treating chronic brain injury is freely available and as I’ve already said I’m willing to give it to you.

    Either you’re being deliberately obtuse or I’m just not able to get through to you, but my son’s issues have their origin in a known cause, the damage caused by which can be ameliorated via HBOT.

    I have no clue what you mean when you say shouldn’t it be the other way around. Meaning the cerebral hypoperfusion caused the lack of oxygen?That doesn’t make sense.

  10. S. Baruah said
    The fact that obstetric complications increase the chances of developing autism is I think fairly well accepted.

    No it is not. If there is a correlation between obstetric complications and autism (can you provide references?) it may be that autism increases the chance of the complications and not the other way round.

    Autism is a significant comorbidity with cerebral palsy and you only have to be on the cerebral palsy groups to know that in a lot of cases birth asphyxia has caused both cp and autistic features.

    Please, do not post assertions without evidence. I read the literature and I see evidence of correlation between autism and Fragile X, Downs Syndrome, Tuberous Sclerosis. Please cite the studies connecting autism to CP.

    So I am really not in agreement with you if you suggest that all autism, especially the PDD-NOS subtype, is genetic. It most emphatically is not.

    Whether or not you agree is beside the point. Where is your evidence?

    I am perfectly justified in trying to treat the brain injury caused by the birth asphyxia. The research on the use of HBOT for treating chronic brain injury is freely available and as I’ve already said I’m willing to give it to you.

    My argument is with using HBOT to treat autism. Nothing else.

    Either you’re being deliberately obtuse or I’m just not able to get through to you, but my son’s issues have their origin in a known cause, the damage caused by which can be ameliorated via HBOT.

    If your son is autistic HBOT will not help his autism.

    I have no clue what you mean when you say shouldn’t it be the other way around. Meaning the cerebral hypoperfusion caused the lack of oxygen?That doesn’t make sense.

    Cerebral Hypoperfusion means lowering of blood flow to the brain. Blood carries oxygen. Lack of blood flow causes anoxia. The birth asphyxia you mentioned earlier means lack of oxygen to the lungs. That can also cause anoxia. But it does not cause hypoperfusion. If you are going to use technical terms, use them properly.

    Look, if you are saying your child suffered brain damage becase of oxygen deprivation at birth and you are trying to heal that damage with HBOT, then we do not have an argument. I do not know if it will do any good. Nor do I know if it will do any harm.

    But, if you are describing this brain damage as autism and saying that HBOT is a cure for autism, then you are wrong and we do have an argument. But we need to sort out the language so we both know we are talking about the same thing.

  11. Mike,
    You have been very diplomatic in your answers to S. Baruah. I do not understand why this is still being debated. Not only on this site, but the autism forums as well.
    Mr. Stanton answered the questions you asked Ms. Baruah. I think you owe it to him not to berate or negate him on other forums.

  12. Suchj a lot of misinformed conjectures by vested interests make me sad.
    The conservationalists like Ms. Mary Baruah, a mother with an autistic child, who started Action for Autismat Delhi, now renamed a so-called National Institute ( I was told that the words “National” and “Indian” are reserved words as per Govt. of India rules, and that only instituions having branches in atleast 7 states may apply to get that name. I wonder which seven states Ms. Baruah had her branches in on the date when she got permission to call her Institute “National”), are scared that her empire may go tumbling down if our project succeeds.
    First the facts:
    Every child desiring HBOT in India, is examined using all relevant scales like GMFM, REEL, FAB, Basic MR, CARS, etc. as applicable. Then they are checked up by independent ENT Specialist and Pediatrician for need for therapy and fitness for HBOT. Then EACH, repeat, EACH child gets a CT-cum-SPECT Fusion Scan of brain done. Only those with definite history or clinical features of cerebral hypoxia on CT or MRI or SPECT are allowed to go into the HBOT chamber. In the last six years, more than 600 children have been evaluated, but only about 120 have received HBOT through us. The protocol followed is that given by US FDA for experimental use of HBOT in CP children.
    The parents pay directly at the HBOT Dept. of Apollo Hospital, so wonder from where Ms. Baruah got the idea that I am laughing all the way the bank. Maybe I should file a defamation case against her and ask her to prove her statement in a court of law.
    The landmark HBOT in CP study published in The Lancet of 2001 clearly pointed out that CP children given low pressure HBOT at 1.3 ATA pressure with normal air to breathe had the same benefit after 5 months (no statistically significant difference between groups) as the group given regular HBOT at 1.75 ATA pressure and 100% Oxygen to breathe. This data was erroneously interpreted by vested interests to mean that HBOT does not work because the regular HBOT 100% Oxygen produced the same results as low pressure HBOT with regular air to breathe. Perhaps what they do not know is that both the HBOT groups, given HBOT but NO OTHER THERAPY during the 5 month study period, improved 3% in 2 months compared to the improvement rate of 0.3% in 3 months at the best of Standard Therapy centers in the same country. As a follow up, the Govt. of Quebec, Canada, where the study was done, have already made or ar about to make HBOT for CP re-imburseable in the state. But of course, some people do not care to keep track of that news.
    Regarding our Autism project, every child is tested thouroughly for Inborn Errors of Metabolism by two of the best Labs of India at 25% concession, and need based guidelines given to saeguard the child as far as possible. Each child also gets all metals checked up and nutritional support/avoidance guidelines given. Each child is tested by Ig metods for different common food alergies and necessary advice given. All payments for the tests are made directly to the labs concerned, so I dont know how I am laughing all the way to the Bank, as Ms. Baruah would have me do.
    About 2/3rds of autistic children are believed to be genetically deficient in Methylene Tetra Hydro Folate Reductase enzyme, which makes the child to produce less MB12 activity leading to deficiency of methionine, glutathione, and consequent neural and detoxification deficiencies that aggaravate their bizzare behavior. We plan to get one of the leading Labs to test for that deficiency, and then those children who need will be advised to purchase MB12 from a pharma firm that has agreed to make it and supply it to autistic children selected for the project, at raw material price only (no manufacturing charges and no profit). Remember something about running to a bank???
    Some autistic children, due to their genetic fault, are unable to excrete heavy metals efficiently from their body. Even though one vaccine shot contains very little mercury, the sum total of all the 2 dozen or so vaccines given within the first 2 to 3 years of life, is many folds higher than permissible limits.
    According to the US Govt. agencies data, the incidence of autism from 1965 to 1990 was a flat line. Then, with the introduction of almost compulsory Thimerosal containing vaccines in the 1990s, it suddenly rose up at almost 40 degree angle till concerned parents raised a stink since the incidence by 2000 was many hundred times higher than it should have been. So called authorities, whom many specialists love to quote, blamed it on increased awareness and better diagnostic facilities. aybe so. Unfortunately, by 2000, one state after another in US quietly withdrew the thimerosal from most vaccines, and by 2002, the rate started going down, by almost a 90 degree change in direction. Now how the hell did that happen? It must be because the doctors and therapists in USA have lost the capacity to diagnose autism properly!!!!
    To come back to our project, each child in our project will have blood and DMPS challenge urinary excretion tested for heavy metal poisoning. Only those children who are heavy metal overburdened, will be guided to buy the chelating drug and use it. Once again, we are not the selling agents, only the Pharma company that agreed to make the drug and and has agreed to supply it at only raw material cost without charging any manufacturing cost or profit. Anybody going to the bank????
    Each child will be screened, and thouroughly examined every 3 months by an independent specialist team of doctors at extermely low consultatation fees (They will charge only Rs.150 for detailed evaluation. By the way, I am not one of them, so I dont get to run to the bank), to safeguard the health of the child from any therapy, deficiency, and any other guideline to ensure the safetyand betterment of the child.
    We had approached Ms. Baruah to act as our independent watchdog, with full authority to stop our project whenever she felt that a child was in harm’s way, and to do the CARS score every 3 months after charging them for it, and to take the responsibility of guiding the parents directly on Standard Therapy to be followed, after charging them for it. Ms. Baruah apparently seems to have got uncomfortable about joining us in spite of our offer which would have allowed her to run laughing all the way to the bank, since her Action for Autism does not have much faith even for GFCF / allergen-free diet, let alone doing CARS or such nonsense.
    I completely agree that Autism is a gentic fault. So what? Genetic faults lead to abnormal physiology and pathology that harms a patient. Modern medicine can releive and prevent many of those abnormal pathologies with scientific screening and sane advice and supervised therapy, which we aim to follow, using International Standard care, Internaional standard laboratory backup and International standard safety measures. By the way, Diabetes, too is a genetic disease. Should we stop treating Diabetes just because it is incurable???????? Or should we believe in saner advice and “manage” diabetes with proper diet, excersie, and drugs to overcome insulin resistance and supplement insulin when the body stops making it.
    In today’s world, stone wall attitude is bad for everyone concerned. Scientific workers should keep an open mind, otherwise science will never progress beyond the stone age. Maybe that is what some vested interests want. Excess of anything is bad. But, a judicious care in proper selection before giving any remedial therapy to improve the prognosis and quality of life of any patient, are more important to me than what some so called Conservatives and some “National” Instiute spokespersons have to say.

  13. The landmark HBOT in CP study published in The Lancet of 2001 clearly pointed out that CP children given low pressure HBOT at 1.3 ATA pressure with normal air to breathe had the same benefit after 5 months (no statistically significant difference between groups) as the group given regular HBOT at 1.75 ATA pressure and 100% Oxygen to breathe.

    Yes, that HBOT is useless is in fact a correct skeptical interpretation of these results. Such studies need to include a control group with a fake HBOT device, and evaluation of results needs to be blinded. Otherwise, it’s not possible to say that the device is helpful or not — certainly not based on anecdotal evidence or subjective evaluations without a baseline for comparison. It should be clear at this point that this level of scientific rigor is absolutely necessary in studies looking into the effectiveness of any treatment for developmental disabilities.

  14. Mike

    You still looking for the magic bullet? With that attitude, lancing the windmills must be a very engaging pass time huh?

    For too long, autism was seen as only a behaviour problem, and therefore, in the hands of behaviourists. But when the doctors stepped in and found, through scientific tools available, that there was more to it than behaviour ( i would like to know if the behaviourists have reconciled to the fact that it could be genetic and genetic/metabolic as well), they set about finding solutions to the subtle abberations that they knew could be cured. A little help with this and that, that better prepares the child for therapy, that nobody denies, is still vital at this moment. Mike, the portals you quote Autism Diva etc are a tad biased i think ( you will disagree this up and down i know) and therefore not worth the e-space they consume on the www.

    Wake up and smell the coffee Mikee “staying the course” is not an option anymore
    Ajai

  15. Ajai,

    There are no magic bullets. I think you are setting up a straw man by misrepresenting my position and then attacking your own creation.

    I am not a behaviourist. I do not believe that their methods even begin to address the complexities of autistic learning styles and behaviour.

    I believe that, given our present state of knowledge about both autism and the workings of the human brain, medical attempts to adjust the brain’s biochemistry are little more than fumbling in the darkand have the potential to do more harm than good.

    Autism Diva is biased and so am I. We are biased against badly designed research being used to promote questionable theories and treatments for autism.

    I do not expect everyone who reads my articles to agree with me. But I would expect them to offer coherent arguments. To state that Autism Diva and those who agree with her are a waste of space is not to your credit at all.

  16. Dr Mukherjee
    There are many purveyors of autism therapies and some of them are indeed unscrupulous individuals who are laughing all the way to the bank. You need not assume that those words where aimed at you when they are so at odds with the work of your clinic as you describe it.

    I only wish some of the American purveyors would follow your protocols and billing policy. Families in the USA are paying hundreds of dollars for telephone consultations and often have to provide all the blood work and other diagnostic tests in advance, at considerable personal expense before these autism practitioners will even see them. I use the word practitioners instead of doctors because, unlike yourself, many following the DAN protocols are not doctors or have not received specialist training in the type of medicine they practise. I am sure you are aware of the tragic death of Abubakar Tariq Nadama who was being treated with a chelating agent by an ENT doctor.

    But if we leave aside these questions of medical ethics and competence, there remains the more important question of how well founded are the biomedical theories of autism and the treatment protocols that derive from these theories?

    Both theory and practise can be questioned without necessarily questioning the ethical or professional standing of scientists and doctors working in those fields. That is how both science and medicine have progressed. It ought to be possible to conduct that discussion without personal animosity.

    I am sorry if you feel that you have been the subject of a personal attack and hope that we can resume in a proper spirit of intellectual debate and discussion.

  17. Dear Mike,
    Thanks for your coment.
    I do not offer HBOT for anything except a CT-SPECT Fusion Scan proven ischemic lesion of brain that shows some degree of coorespondence with the area of hypoperfusion and the clinical features observed in the child. more than 5 tp 6 hundred parents hyave come to us so far since 2001 but we gave this facility only to about 150: i.e. a rejection rate of 75%.
    Hypoperfusion is NOT something that is NOT SEEN in autism. That is why if an autistic child shows hypoperfusion, he will be given the option of mHBOT to reduce risk of Free radical damage.

    Joseph has still not evaluated my letter fully. The human body works within very narrow limits. In a patient with high fever of 105 degree fahrenheit, we only need to lower temperature by 6%. In high blood pressure of say, Diastolic 110 mm Hg, we only need to loower it by 20%. In high degree of anemia, we usually give only a 20% supplement of Blood transfusion.
    The much decried mHBOT increases the solubility of oxygen in water by 50% (confirm it from a professor of Physics) whereas regular HBOT with 100% Oxygen increases it by 700 to 800%. When you are hungry for food, does it matter whether I give you one plate of dinner or 20 plates? You will only eat one plate. That is why in the Lancet Study, both groups had the same benefit.
    In Quebec, health insurance is available. When the parents of CP children wanted Govt. to pay for HBOT, they started this study to discredit HBOT.The ACTUAL investigator, Pierre Marois, cried himself hoarse that the interpratation by Govt. authorities determined to run doen HBOT to prevent reimbursement, was shewed. Even Lancet refused to accept the term placebo, and forced them to change the word placebo to low pressure Hyperbarics in the paper. As also informed in my earlier letter, BOTH groups hiven low AND high pressure HBOT improved 10 times more than the national average. If that does that not mean anything to anyone, I am sorry.

  18. Dr Mukherjee,
    you wrote Hypoperfusion is NOT something that is NOT SEEN in autism. That is why if an autistic child shows hypoperfusion, he will be given the option of mHBOT to reduce risk of Free radical damage.

    I would not argue with that. But the biomedical movement in the West sees a causative relationship between autism and the diverse medical conditions they claim to treat. It may be that autistic children are more prone to certain conditions than their neurotypical peers. More research is needed to answer that question.

    But to argue that these conditions cause autism and that addressing these conditions will cure the child’s autism is another matter entirely. Yet this is what is argued by professionals who address parent conferences in order to market their cures. HBOT is advertized as a method of treating autism in the USA. At least one private school is proposing to install its own HBOT chamber. I somehow doubt that they will be following your rigorous procedures and denying treatment to parents who are willing to pay because it is not medically indicated.

  19. Mike,
    It is really not even a debate…Ms. Baruah wrote on two forums, that I know of, that she was “hurt and angry”. One forum-AW forum-patted her on the back and consoled her. I was chided by her on this site for backing you up with your considerate responses to her.
    On the Autism-PDD forum, they were less sympathetic with her, so she less than gracefully moved on.
    I do not know this woman, but it seems to me she needs reassurance she is doing the right thing for her child.
    Only she can make that decision.
    Jeanette

  20. Dear Mike

    Touché

    But i have to say, when i read some of the stuff that is written against biomed, by lay people, and misinformed people, i find it obfuscates what the whole lot is standing for, if at all they stand FOR anything. ( Reminds me of one minister in a previous govt; people had only one thing to say about him – in his 40 years in public service he has the distinction of not having stood for anything, always against, (that is the easy part i guess)).

    You wrote:
    “I believe that, given our present state of knowledge about both autism and the workings of the human brain, medical attempts to adjust the brain’s biochemistry are little more than fumbling in the darkand have the potential to do more harm than good.”

    That is a sad comment. There is always a fumbling in the dark Mike, before someone gets to the light switch. We could all put on our night vision binoculors and snicker away as they stumble and fumble, and some of them indeed need to be laughed out of the room, but if we think we already know all that there is to know about autism and call off the studies because it is embarrassing to a few people with aspergers , that would be the real tragedy for our kids who have autism.

    I take it from your comment that you agree we know very little about the mechanisms of autism, and am going to hazard a guess that you would like to know more; i am curious to know in what direction exactly, would you like the research to go.

    “Autism Diva is biased and so am I. We are biased against badly designed research being used to promote questionable theories and treatments for autism.” Well you can add my name to that too, except that i will go further and say that i would also seriously consider appropriately designed, emerging theories that helps assuage my son’s difficulties. But that is just me.

    Best
    Ajai

  21. Ajai
    in Britain and the USA at least, the biomedical movement believes that we are in the midst of an autism epidemic caused by environmental insults to genetically vulnerable individuals. The biomedical treatments that they support are supposed to counteract these environmental insults and cure the child’s autism.

    When research refutes one hypothesis, such as vaccine damage, they move effortlessly to the next possible insult. Heavy metal poisoning from environmental pollution is currently gaining ground as it becomes obvious that the removal of thiomersal from the childhood vaccination schedule in the USA has had no impact on the reported numbers of cases of autism.

    The biomedical movement adheres to the idea that there has been a massive increase in autism in recent years that requires an environmental explanation. This is open to challenge.

    It further suggests that changes to the neurological development of people affected by this environmental insult are reversible. This is a massive assumption with no supporting evidence.

    These are the questionable grounds on which the biomedical movement “fumbles in the dark.” The reality is that it is testing its hypotheses on children with no idea of how to measure the potential benefits or assess the possibilities of harm.

    I would like more research of the type being conducted by Mottron and Gernsbacher that looks at what is different about autistic people, not inorder to fix tha tdifference but to identify ways in which we can work with that difference to improve their life chances.

    By analogy, we do not expect deaf people to learn to hear and speak normally. We accept their deafness and teach them how to sign. And we learn to sign in order to communicate with them. [This is an analogy and not an invitation to discuss the merits of cochlear implants]

  22. I’m dividing this post into five sections in response to specific statements by you.

    “Please, do not post assertions without evidence. I read the literature and I see evidence of correlation between autism and Fragile X, Downs Syndrome, Tuberous Sclerosis. Please cite the studies connecting autism to CP.”

    Section 1. Cerebral palsy -Comorbidity with autism

    “No it is not. If there is a correlation between obstetric complications and autism (can you provide references?) it may be that autism increases the chance of the complications and not the other way round.”

    Section 2. Obstetric complications – causative effect on autism

    “Whether or not you agree (that autism can be a result of things other than genes) is beside the point. Where is your evidence?

    Section 3. Infantile spasms(among other things) not a genetic cause of autism.

    “Or, there was a problem with oxygen at birth so we will give the child more oxygen now (10 months later) to repair the damage now.”

    Section 4. HBOT in the treatment of chronic brain injury

    “The birth asphyxia you mentioned earlier means lack of oxygen to the lungs. That can also cause anoxia. But it does not cause hypoperfusion. If you are going to use technical terms, use them properly.

    Section 5. The meaning of hypoperfusion and how brain injury can cause it

    Cerebral palsy -Comorbidity with autism

    Paper 1:

    Fombonne, Mazaubrun, Cans, & Grandjean, 1997, in their comprehensive study, also note the following medical conditions that can lead to autism: Tuberous sclerosis, chromosomal abnormalities including fragile X, cerebral palsy, congenital rubella, sensory impairments, and Down’s syndrome.

    In their comprehensive study,they note the following medical comorbid conditions as a possible cause of the autism:
    Tuberous sclerosis in 1.1%; chromosomal abnormalities including fragile X in 2.9%; cerebral palsy in 4.6%; congenitalrubella 0.6%; sensory impairments 0.6%; and Down’s syndrome 1.7%. This is indicative that less than 10% of all cases of autism are most likely caused by a medical condition. Early infantile seizures and brain insult such as from infection or
    very low birth weight have been implicated as well.

    Please note it lists cerebral palsy as a possible cause not a result of autism. Also note tuberous sclerosis which you mention as a significant comorbidity is 1.1% whereas cerebral palsy is
    4.6%.

    Paper 2:

    A B S T R AC T
    A population-based survey was conducted among 152,732 Finnish children and adolescents aged under 16 years and living in northern Finland. Diagnoses and associated medical conditions were derived from the hospital and institutional records of this area. One hundred and eighty-seven children with DSM-IV autistic
    disorder were identified. Associated medical disorders or associated disorders of known or suspected genetic origin were found in 12.3
    percent, including tuberous sclerosis, Down syndrome, fragile X syndrome, Klinefelter syndrome, XYY syndrome, chromosome 17
    deletion, chromosome 46, XX, dup(8)(p) and mitochondriopathy. Other associated medical disorders identified were epilepsy, hydrocephalus, foetal alcohol syndrome and cerebral palsy. Hearing impairments were found in 8.6 percent and severe impairment of
    vision in 3.7 percent of the individuals with autistic disorder. Medical disorders seem to have a special impact on the genesis of autistic
    disorder and need to be thoroughly examined in each child with autistic disorder.

    Paper 3:

    Gillberg and Coleman in their Biology of the Autistic Syndromes,1 list 27 conditions where you see autism as a comorbidity. They list mucopolysaccharides as one condition.
    They talk about the tuberous sclerosis complex. They also list some toxic syndromes: foetal alcohol, foetal valproate, lead poisoning, and some infectious syndromes. They list cerebral
    palsy as a disease entity; in all instances implying that two diseases are occurring together.

    Obstetric complications – causative effect on autism

    The jury is certainly out on whether birth complications cause autism or vice versa but there are no final conclusions . No one has so far said that there is no link between obstetric complications and autism. Just that the precise
    nature of the link is not clear.In the next section you will see that hypoxic ischemic encephalopathy(a birth complication) can certainly cause autism albeit indirectly.

    1.

    “The researchers concluded that perinatal complications do appear to play a role in the causation of autism, although it seems that no particular factor is at fault. But how might perinatal difficulties be linked to autism? It could be by interacting with autism susceptibility genes.” In the causation mind you.

    2.

    “CONCLUSIONS: Our findings suggest that intrauterine and neonatal factors related to deviant intrauterine growth or fetal
    distress are important in the pathogenesis of autism.” Pathogenesis meaning in the origin and development of pathology.And
    intrauterine growth OR fetal distress.

    Infantile spasms(among other things) not a genetic cause of autism.

    A childhood epileptic disorder called Infantile spasms or west’s syndrome is known to cause autism in a good percentage of survivors. Children who have HIE hypoxic ischemic encephalopathy at birth who quite often go on to develop infantile spasms in addition to cerebral palsy. No one so far has said that infantile spasms is a purely genetic disorder. Anything
    that causes brain injury can cause infantile spasms.That is one known pathway to accquired autism where genetics need not play a part.

    Note that only about 25% of children were developing normally before they had infantile spasms, however those children that were developing abnormally ( as in the children with cp or types of epilepsy other than infantile spasms ) were not diagnosed with autism previous to the onset of infantile spasms. I will not dig up the research on this as it is commonly
    known. You only have to speak to a neurologist about the causes of and the results of Infantile spasms.

    Also from one of the studies quoted above “Associated medical disorders or associated
    disorders of known or suspected genetic origin were found in 12.3 percent, including tuberous sclerosis, Down syndrome, fragile X
    syndrome, Klinefelter syndrome, XYY syndrome, chromosome 17 deletion, chromosome 46, XX, dup(8)(p) and mitochondriopathy. Other associated medical disorders identified were epilepsy, hydrocephalus, foetal alcohol syndrome and cerebral palsy. ”

    Please note that the genetic disorders are differentiated from the medical disorders.

    I believe one exception to a rule is enough for it not to be a rule, so when I say not all autism is genetic. I have justification.

    The meaning of hypoperfusion and how brain injury can cause it:

    Hypoperfusion is decreased blood flow to a given tissue or organ.When hypoxia or anoxia cause brain injury, they cause reduced blood circulation to the injured areas. Hence hypoperfusion in injured brain areas.Here is one example.

    “In two patients presenting with diffuse axonal injury in the brainstem, hypoperfusion in the frontal cortex on the affected side was observed on SPET. SPET demonstrated hypoperfusion in the adjacent cortex,….”

    Who is it that doesn’t understand the meaning of the technical terms they are using? You or I?

    And finally

    HBOT in the treatment of chronic brain injury (which certain cases of autism can definitely be as described above):

    Please understand I do not advocate HBOT to all children with autism. But I believe in cases similar to my son’s case with a known history of brain trauma and scans demonstrating the areas affected and showing without doubt that there is brain injury, HBOT may well be of use. I am deliberately not quoting from Dr.Paul Harch, Dr. Neubauer, Dr. Rossignol and other such known proponents of HBOT.

    “Similarly, data from recent followup studies contradict the widely held view that improvements in neurocognitive function
    are unlikely to occur if more than a year has passed since the injury.32, 33 In one of these cohort studies, patients with TBI were administered a battery of 12 neuropsychological tests 1 year and 5 years after injury………….. .The authors concluded that clinically significant improvements can occur long after apparently “stable” deficits have been diagnosed.”

    “In some experimental models of acute cerebral ischemia and acute carbon monoxide poisoning, HBOT prevents cell death. Recently, for example, in a rat model of focal cerebral ischemia,…….. Rats randomized to HBOT had reduced infarct size and improved neurological outcomes compared with untreated rats. In a separate model of cardiac arrest and resuscitation, the same investigators found that dogs treated with HBOT had better neurological outcomes and, histologically, fewer dying
    neurons than dogs treated conventionally.

    “One controlled trial of nontraumatic brain injury has been published. In this trial, children with stable viral cerebritis resulting in altered consciousness, aphasia, spasm, and dyskinesia were randomized to HBOT or standard care……..The proportion of patients found to be cured was significantly higher in the HBOT group than in controls (18

    of 47 vs. 8 of 45, p

  23. Hi Jeanette,

    I believe I have already told you to stop spoiling for a fight? This kind of blatant provocation won’t get me frothing at the mouth. It will amuse me.

    Swechcha

  24. The medical terminology on this site is sometimes totally beyond my comprehension but, as the mother of a 29-year old daughter who was brain-damaged at birth (birth anoxia), I can sympathise and empathise with Ms Baruah’s efforts to do whatever she can to improve her son’s situation.

    Unfortunately, I was able to do very little for my daughter who has now been in a Care Home for the last four years, following two breakdowns which I was told were likely to have been caused, directly or indirectly, by the birth anoxia.

    I admire Ms Baruah for the efforts she is making for her son and I would like to wish her the very best of luck with this in the future!

  25. Thank you very much Ms.Williams. I am very sorry to hear about your daughter. It’s terrible that with all the advances in technology and medical science, we are sometimes so helpless. I pray for your wellbeing and happiness. And of your daughter’s as well.

  26. Hi Swecha

    This is Sundaresan here from Mumbai , India.
    I believe we both are members of http://www.autismweb.com/forum and you also have provided me with HBOT address in Mumbai(Ashwini Hopital,Navy,Mumbai).

    If you please dont mind can i have your email id.
    I need to discuss my childs Autism issue with you. As you already know we have less support here in India, I need to interact with as many people like you before I can make the best descision for my son.

    Please help me.

    Thanks

    i_sundaresan

  27. my child is suffering from sub clinical lavel of autism.he is having normally miles stones but learning difficulties in study and behaviour abnormalties(minor-jumping)kindly suggrest me line of treatment.

  28. Hi,

    My daughter is now 2 years and 9 months, she was diagnosed with west syndrome as the age of 6 months. First she was given ACTH but it did not worked well, it just reduced the seizure for one-two months and again it started. She used to get around 50-60 jerks in a day. Finally she was given Vigabatrin at the age on 12 months which really stopped her seizure at all and now she is seizure free from last 19 months. However her all the milestones has got delayed. She doesnot speak and also not able to walk. She does not even understand basic signals. Till date I am waiting for the time to hear Daddy from her mouth. At present she is given various types of physical/occupational/speech tharapies and also ayurvedic treament is going on. Since, my wife has to carry her to different different places she has also got cervical rib problem on the both side of her neck and doctor has suggested her to not hold any weight. Eventhough she is carrying the baby to all the possible places wherever we get any hope. Believe me the maintenance of a child with delayed mile stone due to any neurological problem is dam expensive. Moreover to the best of my knowledge in India there is no mediclaim which can reimburse you these expensive. I request all the parents who are facing this problem to manage there finance very carefully because you never know when you will be in need of heavy funds. Also you need to have patience as there can not be an overnight magic. Best of luck to all of you. Arun Sharma

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