Thank you, Joseph for posting these links to blogs on Jenny McCarthy
Jenny McCarthy has written a book, Louder than Words: A Mother’s Journey in Healing Autism. The book is receiving widespread publicity in the USA because of McCarthy’s celebrity status as an ex Playboy centrefold who turned to a career as an actor and a writer. So it is no surprise that her book is expected to climb up the best seller lists.
We live in a world where celebrity endorsement is often given more credence than evidence based judgements. Talk About Curing Autism (TACA), a Californian support group, which believes that autism is caused by thimerosal in vaccines and is reversible using biomedical interventions, has just recruited McCarthy as their official spokesperson. In reacting against what one commenter on Left Brain/Right Brain referred to as this “celebritization of expertise,” it would be just as easy to discount McCarthy’s views because of who she is; just as easy and just as wrong.
I do not blame McCarthy for taking advantage of her celebrity status to get her message across. Having done so, we should critique her message rather than her status. McCarthy’s most important point concerns her injunction to, “Listen to your instincts. Follow your heart.”
“Because a child with autism has their own unique issues, it really is important that you use your mommy instinct when dealing with all the types of therapy that are available to you.”
When I read of children being abused or killed during so called ‘therapies’ while the parents stand by or even participate, I often wonder how many of them have been persuaded to suppress their parental instincts by feelings of powerlessness induced by the mystique that often surrounds autism reinforced by the status of the ‘expert’ they are consulting. Every parent should be encouraged to follow their instincts. If it feels wrong it probably is wrong.
McCarthy goes on to say;
“When you meet your DAN! doctor you will get thrown so much information, so many different choices and things that you can choose. I did not want to make Evan a guinea pig. I wanted to go inside and listen to my instincts on what was most necessary and what made sense, type of treatment for Evan.”
When I go to the doctor I expect him or her to give me the medical advice. If there are choices to be made I expect guidance. If McCarthy is saying that DAN! practitioners hit you with this great wad of information and you are expected to evaluate it yourself and make your own treatment choices, then this is not empowering parents or respecting our instincts. This is health care professionals abrogating their responsibility to offer the best advice. Instead they are expecting us to evaluate the evidence and make the treatment choices. This must prove very handy if things go wrong.
Follow your instinct. Listen to the experts. Can we do both? Yes. You always follow your mommy instinct, or your daddy instinct for that matter, to keep your child from harm. That is a natural reaction. But there are times when you have to be proactive. When reflecting on the evidence or evaluating conflicting theories you have to rely on your intellect rather than your instinct and remember that Google is a synonym for “search” and not “research.” Otherwise you may finish up like Jenny McCarthy, lurching from new age mysticism to quack science without a second thought, or even a first thought.
Action For Autism 
Mike,
If fathers of autistic kids followed their instincts, all of you assholes who call DAN doctors quacks would have had the shit beaten out of you 100 times a day. I guess you’re lucky we rely on our intellects to see how idiotic you are and that you aren’t worth crossing the street to spit on.
El Cid,
Do you have a cogent opinion of why Roy Kerry was allowed to be a DAN! doctor after killing a kid by not even following the manufacturer’s instructions on the chelation drug he pushed through the boy’s veins?
Do you know what the requirements are to become a DAN! doctor? (Hint, it does not require the person to have graduated from medical school).
Do you also have nonviolent answer as to why a parent should listen to an actress who does not understand what “Sponsored Links” means on a Google search page, instead of a child neurologist?
I am leaving this one comment by El Cid, aka John Best Junior, as eloquent testimony to the mentality of the mercury malicia. All further messages by him or in response to him will be deleted.
Mike,
Clearly, based on what we hear from the supporters of DAN! “doctors”, their professionalism is sorely lacking.
There appear to be two major species of DAN! “doctor”:
[1] DANus monomaniacus: Has a single therapy or “protocol” which they apply indiscriminately to any child arriving with the label of “autism”. May periodically change therapies or protocols to adapt to prevailing winds.
[2] DANus inundatus: In a one-hour office visit, spends five or ten minutes examining the child and the remainder tell the parents about every known “alternative” autism treatment that he/she can provide. Then asks the parents to choose the best one, based on whatever information they can glean from “Google”.
Apparently, the concept of a physician as a consultant to the patient (or their parents) to advise them in the available options and to help them choose the one that fits their needs and wishes best is foreign to the DAN! “doctors”.
As for El Cid/John Best – violence is often the only resort of those too stupid to develop a rational argument. Your repetitious threats and allusions to violence as a means of “shutting up” those who disagree with you only serve to highlight the fact that you do not understand what it is you are talking about.
Prometheus
Mike
I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!
Liz
Liz
I whole heartedly agree with you, conventional medicine has offered my child a repeat prescription of movicol (I invite you to read the label on this one!!).
prozac appears to be touted as the next big autism seller, the long term effects of these drugs are as yet unknown.
A pretty girl saying don’t eat bread an cheese doesn’t seem like a bad thing in comparison.
one final though on google search/research to discus…
2,470,000 for education autism
2,160,000 for diet autism
DAN doctors get criticized, but we should be critical of all doctors. I agree with apple_m – there’s not much harm in avoiding bread and cheese (it beat’s McDonald’s and Twinkies – what most parents feed their kids).
Funny how anyone with a “cheap” solution, such as dietary changes is a quack…and are even accused of putting their children in harms way, however, the same people judging these parents, are the ones who put some of these children in schools, approved by at least the US federal government and SHOCK them, such as the school in New York/Boston area where even kids with autism are continuosly SHOCKED because somehow the government and the “regular” doctors seem to think THIS IS OK…disgusting…
I actually feel sorry for your child with autism who has a father who would much rather “label” him and has no hope for him, than to attempt to broaden his mind and check into some of the interventions which Jenny described which do not negatively impact the health of our children.
Just because mainstream health and educational services are ill equipped to meet the needs of autistic people it does not follow that alternative therapies and theories about autism are necessarily beneficial.
Liz,
there is no evidence that DAN! is even beginning to correct the harm that big pharma has done. It causes harm by offering unproven, potentially dangerous treatments like chelation for children who do not have heavy metal poisoning. DAN! medicalizes autism in the same way that mainstream doctors do. At least mainstream medicine is regulated, tested and hasd some basis in science. DAN! is based on quack science.
Apple M
I do not have a problem with the diet as such. I object to it being touted as a cure for autism by someone who believes in quack science and is being promoted as a spokesperson for the autism community.
Daniel,
you are recommending McCarthy’s book on your site and claim that autism is caused by damaged guts that need to be healed. There is no evidence to support your claim.
Whatamess
Some of the most strident opponents of the Judge Rotenberg Centre oppose DAN!’s quackery as well. Quit the smear tactics. And there is no need to pity my child. He has made fantastic progress without any of the potions, pills and diets in McCarthy’s book.
I have two daughters w/ Asperger Syndrome. I have seen the message boards, talked to other parents of autistic children and have even heard recommendations of seeking a DAN! practitioner. Most of “DAN! doctors” that I sat down to talk to instantly had diagnosis and treatment lined out without even examining my children. I got up and walked out immediately.
Now, I just take them to our current family doctor and our girls get support services through their school – OT, psych, Special Ed, etc. The most that our doctor ever recommended was changing certain items in our daughter’s diet since we noticed certain foods agitated their behavior. He says there is no need for drugs, just a balanced diet and to keep them away from additives and preservatives in some foods that make some of their negative behavior and ability to focus more pronounced.
As a mother, yeah, I trusted my gut… I noticed something wasn’t “right” with our daughters from the time they were babies. Our oldest never seemed to respond well to certain stimuli (touch and sound). Our youngest used to stiffen up and scream non-stop for hours and hours on end despite no apparent medical reason to do so. Later is was theorized that she didn’t have colic, as her first doctor said, but instead was experiencing sensory overload and her “fits” didn’t stop until she was age 6 and had begun receiving OT, given a sensory diet and brushing. It is sad that it wasn’t until they were both 6 and 5, respectively, that we finally got a diagnosis. Up until that time we just were told that “they are immature” and “they’ll grow out of it” — as girls, statistically do not get autism spectrum disorders on par with boys and most doctors have very little training and experience in diagnosing AS. But as far as other treatment options, I will go with what our family doctor recommends. We’ve done blood work to test of “heavy metal poisoning” and ruled out any other attributing syndromes/disorders for their AS. There is none of that. Our girls were just born this way.
I think the sad fact is that while there needs to be awareness of autism spectrum disorders, I also believe that there is a lot of misdiagnoses and much more research that needs to be done to distinguish what is is autism and what is not (e.g. other underlying disorders, etc). I think that there are cases where childhood vaccinations may have attributed to some cases of “autism”. For instance, there is a teacher are my daughters’ school that has an autistic son. He was normal until his 18 month vaccinations. After receiving it, within hours, he had a seizure and within weeks, he stopped talking and became “autistic”. Could the shots have causes this? I believe so, or at least the seizure that may have causes damage to the brain. When you receive shots, there are a laundry list of side effects that can happen – seizures, fever, contracting the virus you are being immunized against, etc – while the percentage is small, they can still happen. But with no discernible side effects suffered form shots that might attribute to brain damage or some sort, I cannot see a reason that this would even be considered.
I think there are too many parents seeking a quick fix for their kids and not considering that their children were just born this way. Accept that they are different and work to help make their lives better. It is hard work, but you have to be consistent and persistent with your children. If you have to trust your gut on anything, it is the ability to know your children, know their behaviors from day to day and respond effectively to help them adjust and cope. No fad, no miracle treatment is necessary.
here is a short clip of our ADHD child that I did get 35 chelation treatments EDTA and he got better, I just wish I would have know sooner he could have recovered sooner from the vaccines injections but he was not diagnoised autism he was adhd I feel bad that I did not start sooner he sure is better. Our lives got better. Heres a link to a short video of him walking in the door. http://www.youtube.com/watch?v=mBmqixXEyUU
whatamess – if you checked into some of the research about the Judge Rotenberg Center done by Mother Jones (http://www.motherjones.com/news/feature/2007/09/school_of_shock.html) you’ll find that the recruiters for that center actually target low income families to bring their children to the center. They give them gifts to “bribe” them and for many of these families have only one parent that is working. They’ve have had their children tossed out of multiple facilities and they are desperate.
I can’t wait for the day that the center is shut down. And you’ll never see me in the waiting room of a DAN doctor. It’s almost the same level of BS for me.
Kathy,
which type of EDTA did your chelationist use, Endrate or Versenate? and was the video “before” or “after”?
Angela,
thanks for your story. I can believe your tale about DAN! doctors not examining the children. There is one DAN! doctor who is not allowed to examine small boys anymore. So he interviews the mothers instead and prescribes treatments on that basis! What kind of parents loathe autism more than they loathe a creep like that?
“http://www.youtube.com/watch?v=mBmqixXEyUU”
Wow. An ADHD teen walking. I guess that worked then. EDTA is probably even better than the Thought Screen Helmet from what you tell us here.
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Mike
I wasn’t defending DAN’s practice.
My point was that because mainstream medicine hasn’t cleaned up, parents are turning elsewhere.
Did you know that Jenny Mc didn’t chelate her son?
She did ABA, PT, ST, music therapy, play therapy, GFCF, vitamins, fish oil, threelac, homeopathics, vision therapy, mapping??, and now RDI (don’t think I missed anything).
It’s too bad that most folks are so extreme. If you look at the reviews on amazon for Jenny’s book, it’s either 5 star or 1. Not much in between.
sorry Liz,
I thought you were defending DAN! as being less bad than big pharma.
Regarding McCarthy,
my beef with her is that she is pushing the myth that MMR causes autism and being given prime time TV coverage to repeat this because she has celebrity status. And, because she has celebrity status, thousands of people believe her and are googling “Jenny McCarthy Autism” or variations on that theme. If they find their way to my blog I just hope to disabuse a few of them that McCarthy’s opinions have any foundation in science.
PS
I think you missed B12 injections 🙂
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“I think you missed B12 injections”
… and, the anti-fungals, as well.
No need for apologies Mike, I wasn’t clear.
I did forget the shots, the short course of Diflucan, and the seizure meds. (-now- I think we covered it all. lol)
It appears that she’s being totally honest about what she used (minus the crystals). She didn’t use any chelators, no high doses of vitamins, no IVs, no HBOT. None of the more controversial biomedical stuff. Relatively speaking, she was conservative for the most part. I think she means well and doesn’t realize that lots of people are going to jump on whatever without question, simply because “Jenny M did/said so on TV.” That’s the worry so many of us share.
While I welcome the publicity to raise autism awareness. One has to be responsible before publicly making recommendations that seem harmless, but will fall on the ears of people who are desperate.
We’ll see what the aftermath will bring and I hope it’s ALL good :-O . But, as I said previously, I’m not seeing too much healthy skepticism- mainly extreme positions.
I flipped to this show and didn’t know what it was about. Happened to watch a part with Jenny and her son playing. Within a couple of minutes I said to myself – that kid is Autistic. Then, went on to hear her describe how she’d cured him. When will people stop blaming vaccinations. I agree that we don’t know, but the research does not support this. There is more research to support a link with older parents and autism – but she didn’t jump all over that either.
I have worked with Autistic children for 20 years now. I have a cousin with an autistic son and an autistic nephew. I know that it’s be nice is there was a simple answer, but we are learning that it is very complex. Early intervention does wonderful things for these kids, but at each developmental stage you will see where the autistic features are at play. I feel bad for her because she thinks it’s over.
Hi,
My introduction to autism is new….6 months now. I am an RN, and took my son in to our Peds doc for some very serious concerns over a year ago. My concerns were dismissed and I had to insist that labs be drawn as we lived in a very old house and I wanted to rule out lead poisoning. Sure enough my son had lead poisoning and was so anemic he nearly needed a blood transfusion. Although very concerned we were relieved that we had an answer for our son’s delays (autism was already starting to pop up in my head). The doc had no concerns regarding autism and after iron therapy for our son and an increase in his hemaglobin she patted me on the shoulder and said, “He is all cured now.” Well he continued to be developmentally delayed and I started reading. Yes I went to google, but I also read some (I should say a lot of) good books that gave some good information that have the science too. “Changing the Course of Autism” is a favorite of mine. Now again, I am a nurse, my career was to assess patients all day long. It may be coincidence, but I have yet to meet an autistic child in the last six months that only has learning differences and social problems. Every single one has had serious health issues. It makes sense to rule out other health issues with these children. I think it is very unfortunate that some would dismiss the help they may be able to offer that child through biomedical treatment. The child is a whole functioning being. How far would a car go if it was allowed to continue to leak oil without intervention? I am absolutely thrilled to say my son has benefited from “DAN” intervention. He now has formed stools. He does not throw up all of the time. Yes, along with behaviorial therapy, he is making great progress. His biggest progress was today…after a week of methyl B12 shots. My son said more words in a 2 hour period than he typically says in a 2 week period. In the same 2 hours he combined two words for the first time ever. I am sorry that there are docs that may be taking advantage. I will tell you what….educate, educate, educate yourself. Go in there having a good idea of what you are going in for. As in any profession some docs are good, some not so good. Be a good consumer….they are working for you. I hate to see parents dismiss treating the whole child when behavioral manifestations may be due to a problem with the functioning of the entire system. Look at this from every possible angle and do what makes sense for you and your child. I tried to get this kind of help from 2 different pediatricians and my requests were dismissed. I think time will shed more light on this…and we will see that these kids have serious metabollic issues.
Oh…and by the way, I see a lot of talk about chelation killing children on some of these websites. Please direct me to those stories. I have found one….and if you pay attention…that one was a MEDICATION ERROR. I am always hungry for all of the facts, and would love to see all of the stories. Thank you.
Also, a little food for thought about vaccinations. Aside from the whole thimerosal issue. That is true…autism is still on the rise and it has been removed from children’s vaccines. What about looking at it from a different angle? We are giving attenuated (live but weakend) virus in large numbers these days. Could this have a negative effect on an immature or genetically vulnerable system?? We all don’t get pneumasystic pnemonia….no…typically this is seen in the AID’s population because they have weak immune systems. Let’s think outside the box people. I am not saying this is the cause…I am saying it could be a factor. I think we need to continue to look at vaccines instead of just dismissing the arguement entirely.
Jenny & Jim I implore you to not disregard this or even let “quack” enter your mind, I personally know a Doctor who has found the cause and cure for Autism, this is not a hoax, he needs your celebrity power to make this known all over the world, following are his credentials and story:
President & CEO CPAN
Dr. Andrew Moulden is a Neuopsychologist (PhD) AND a Neuropsychiatrry expert (M.D.). He also has Masters level training in Child language development. He is an expert on Brain and Behavior and has taught courses in this area at the University level for the past 13 years. His Brain and Behavior expertise was acquired with twenty years of Formal University Education in the area- A National Scholar, Valedictorian, number one ranked in all his post secondary programs, recipient of 27 scholarships for academic and research excellence in Brain an Behavior studies, Ontario Mental Health Scholar, a Natural Sciences Engineering and Research Council Scholar, an Ontario Graduate Scholar, an International Order of The Daughters of the Empire scholar, a Jack Catherall Cognitive Neuroscience scholar, and a clinician-research scientist with a BA, MA, PhD and MD devoted entirely to the study of Brain and Behavior – and he HAS the cause and a treatment for Autism…much of his work is available on video in his Facebook account – connect with him – http://www.facebook.com/profile.php?id=719565502
He has much to teach you on Video and his research has been readily available since 2001. He submitted his manuscript to the College of Physicians of Ontario on 6-13-01! They did nothing. That was 6 years, 3 months, and 16 days ago!
Please connect with him on Facebook -http://www.facebook.com/inbox/readmessage.php?t=5163729254&mbox_pos=0
and learn what he has to say and why it makes sense that if anyone has the answer on this autism epidemic, it likely would be him.
He is adamant – that the MMR vaccine IS causative and he is prepared to tell you how and why and what to do.
Doctor Andrew Moulden “To the Kingdom!” Dr, Moulden has a Corporation called : CPAN – Care Please Autism Network and CPAN – Cure Please Autism Network and his campaign on his Cause and his Cure for autism is Called: Mystery of Babylon. He is “removing the veil” on this epidemic at he University of Toronto Psychiatry Grand Rounds at the end of the Month at Queen Street Mental Health Center Lecture Hall. He claims to have the cause and he states he can show how the MMR vaccine has caused this problem. He informed the College of Physicians and Surgeon of Ontario, with a written manuscript (page 1-136) of this on 6-13-01. This was 6 years 3 months and 16 days ago! Come, here his truth on matters of Autism, Vaccines, Science and Faith.
His cell number is 647-202-6131, please talk to him, for God’s sake and the sake of all future needless Autistic children.
Isabelle Sampson,
isalou@ns.sympatico.ca
Jackie: You are mistaken, there was no “MEDICATION ERROR”. The physician, Roy Kerry, administered the sole chelating agent he stocked in his practice and, further, said physician had already administered that exact chelating agent to, Tariq, the now-deceased patient on (IIRC) two prior occasions. There was another child (female in the US) who perished via chelation right around the same time as Tariq.
Hmmm….I will have to go research that story again, bimed xprt. I thought this Dr. had used Disodium EDTA instead of the drug Calcium Disodium EDTA. You can see how there would be confusion there if that was the case. But if that is how it happened…it sounds like a serious medication error, and I would most certainly be concerned about Roy Kerry.
As far as the death of the female child, I would like to know more about that. As I said, I am interested in learning more, and have only been able to find one “chelation” related death. Please let me know where I can find that information.
I will refresh myself on the Tariq information. My thoughts go out to that family who I am sure trusted their doctor and loved their child very much.
Thanks,
Jackie
Hi Jackie
as an RN you had no prior knowledge of autism before your son was a dx’d and now you see lots of autistic kids, all with additional health issues. As a teacher I see lots of autistic kids and very few of them have additional health issues.
So we have two contradictory accounts based upon personal experience. Maybe we should go beyond anecdote and look at the data. And the data does not support your thesis that most autistic child have additional health issues.
And if autistic children do have additional health isues, surely it is common sense to treat them for these additional health issues using conventional medicine? DAN philosophy dictates that additional health problems in autistics are always related to their autism and need arcane solutions. Why not try some conventional allopathic
techniques first?
Actually, I did not say I met “lots” of autistic kids. I think I also added it may be “coincidence”, but I have not yet met an autistic child that has not also had serious health issues. This has been my experience with the autistic children I have met, and my own son.
Jackie
Also, please note above the experience I stated I had trying to get help for my son through conventional medicine.
Thank goodness I was able to get help for my son and he is enjoying better health, and steady gains in behavioral areas as well. My intrest in these sites is to learn from every angle. I have learned a lot through books. On purpose I picked books with different view points. My biggest education has come from real parents who work everyday with their children. I take information from every area and apply what makes sense for us. My hope is that every parent can be open minded regarding their child and do what makes sense for that child’s whole health.
Jackie
‘Drug error, not chelation therapy, killed autistic boy’
ATLANTA, Georgia, USA: One of the United States’ foremost experts in chelation therapy said she has determined “without a doubt” that it was medical error, and not the therapy itself, that led to the death of a five-year-old boy who was receiving it as a treatment for autism.
Dr Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Atlanta-based Centers for Disease Control and Prevention, said on January 17 that Abubakar Tariq Nadama died on August 23, 2005, in his Butler County doctor’s office because he was given the wrong chelation agent.
“It’s a case of look-alike/sound-alike medications,” she said. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colourless and odourless. They were mixed up.”
Both types of EDTA are synthetic amino acids that latch on to heavy metals in the bloodstream.
Dr Brown said she had obtained the child’s autopsy report on behalf of the CDC after reading an article about the death in the Pittsburgh Post-Gazette. She said it did not take long to figure out what had happened.
Essentially, Tariq died from low blood calcium. Without enough calcium – a metal – in the blood, the heart stops beating. Dr Brown said the Disodium EDTA the child was given as a chelation agent “acted as a claw that pulled too much calcium” from his blood.
“The blood calcium level was below 5 [milligrams]. That’s an emergency event,” she said.
Officials from the state police, the district attorney’s office and the coroner’s office will meet soon to decide whether to hold an inquest into the child’s death and whether it should remain listed as accidental.
Dr Brown said the same mix-up happened in two other recent cases: a two-year-old girl in Texas who died in May 2005 during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.
Dr Brown said that in each case, the blood calcium level was below 5 milligrams. Normal is between 7 and 9.
The correct chelation agent – Calcium Disodium EDTA – would not have pulled the calcium from the bloodstream, she said.
The Butler County coroner’s office confirmed last week that Tariq had died as a result of his chelation treatment, but the findings that were released did not indicate whether the treatment had been improperly administered.
Dr Brown said chelation was once a common and necessary therapy that was used on children and adults alike for lead poisoning. Chelation means administering an agent into the bloodstream that causes heavy metals in the body to cling to it and then be excreted in urine.
Although its only approved use, according to the US Food and Drug Administration, is for lead poisoning, Dr Brown said she was aware that it was used by some people for other medical problems, ranging from clogged arteries to autism.
She said there had been no reputable medical trials demonstrating the effectiveness of chelation as a therapy for anything but lead poisoning. But if it were administered accurately, the procedure would be harmless.
She said it was well known within the medical community that Disodium EDTA should never be used as a chelation agent. She quoted from a 1985 CDC statement: “Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used … because it may induce fatal hypocalcemia, low calcium and tetany.”
“There is no doubt that this was an unintended use of Disodium EDTA. No medical professional would ever have intended to give the child Disodium EDTA,” Dr Brown said.
Tariq was brought to the United States from England in the spring of 2005 by his mother, Marwa, for the chelation therapy. He was in the Portersville, Butler County, office of Dr Roy Eugene Kerry when he went into cardiac arrest.
In recent months, chelation treatments of a wide variety ranging from IV to oral to topical have been gaining popularity for autistic children due to anecdotal information from parents indicating a reduction in symptoms. The underlying belief is that autism is caused by a sensitivity to heavy metals in the bloodstream.
Howard Carpenter, executive director of the Advisory Board on Autism and Related Disorders – the largest autism advocacy group in the region – said the determination by Dr Brown cleared up the mystery surrounding Tariq’s death but not the uncertainty over chelation itself.
“Since this child died, there have been parents who are pro-chelation who have been very angry that there’s talk against it. On the other side, they say the death was a natural consequence of a dangerous activity. Maybe what happened to [Tariq] is explained, but we still don’t have a conclusion about whether chelation is an effective treatment for autism,” he said.
Tariq’s father is a medical doctor who practises in England.
Dr Kerry could not be reached for comment. A board-certified physician and surgeon, he advertises himself as an ear, nose and throat doctor who also specialises in allergies and environmental medicine.
(Source: Pittsburgh Post-Gazette, January 18, 2006)
Biomd Xprt,
You are correct, there was unfortunately another two deaths out in the states here due to chelation. However, it looks like the deaths were due to similar circumstances. It looks as though it was considered a medical error. I have posted this article for any who are interested. Is the arguement that chelation is dangerous…..or ineffective? Because, again, I have not found an article of a death when it has been done correctly. If you know of one, I would be interested in obtaining that information.
Mike,
I don’t know how you guys do it over there….are parents required to disclose medical issues to your school? I don’t think the therapists at our school are privy to all of the health issues of the children in it. Just curious.
Just to clarify, as with teaching, nursing has specialties. I was a labor and delivery nurse. To my knowledge, unless the information was not made available, I never cared for an autistic patient…..although chances are I helped deliver a baby, or many, who would have issues with autism. So although I had limited information, most of my awareness of autism began to open and grow with my son’s diagnosis.
Thank you for your prospective on this website….I will now focus my energies on learning all there is to know about Floor Time. I may find something that fits my child.
Take care,
Jackie
Jackie,
I teach in a school for children for children with developmental disabilities. Children come to us with educational, psychological and medical reports which the teachers read. But we do not have access to the chidren’s medical records.
Mike,
Thank you…that is how it is here as well. You said to me in the above note, “As a teacher I see lots of autistic kids and very few of them have additional health issues.” I am just saying that you may not know the personal health issues of all of these children. As a mother who has become friendly with the mothers of other autistic children while our kids are in school I am learning from them that their children have serious health issues as well as developmental delays. Wouldn’t it be great if conventional medicine was assisting these families? I can tell you two of these children were hospitalized after labs were finally sent in. One of these children would not have had labs drawn at all had the parents not consulted a DAN doc. One of the issues I have out here in California is, why are children being sent to regional centers for problems regarding delays without having labs sent to rule out underlying health issues first by their primary pediatrician? I don’t know if this is a problem there, but here we see it time and time again. Something as basic as anemia could explain some developmental delays. I think mainstream pediatricians need to get on board quickly here and start assisting these children and their families.
Jackie
Jackie,
I think part of the problem is that, especially, though not exclusively, with non-verbal children, responses to pain and discomfort are often regarded as autistic behaviours rather than evidence of an underlying health problem. Typically developing children often have similar health problems but these are picked up and treated early on. But parental worries are not taken seriously when the child is autistic.
The mainstream doctor interprets symptoms as behavioural manifestations of a neurological disorder called autism. The DAN doctor agrees that these are symptoms of autism but argues that autism is a biomedical disorder of the gut or the immune system that is poisoning the brain.
At least the DAN doctor takes the symptoms seriously as a medical problem and may offer appropriate treatment.The problem arises when he or she carries out tests that purport to reveal the underlying cause of the child’s problems. Both the test and the labs that are used to analyse the samples are notoriously unreliable.
Conventional tests for metal poisoning show no difference between autistic and non-autistic populations. So they perform provoked tests based on the argument that autistic children are poor excretors. The metals are in there but they are locked into organs and do not show up in blood tests.
The child is given a chelating agent that scavenges the system and gives a result above the reference range. Note that they are comparing provoked results in autistic children with the unprovoked results for the general population. The child is then chelated for months and sometimes years.
This is the problem with chelation. It is a medically unnecessary procedure being performed on the dubious theoretical basis that metal poisoning causes autism. Tariq, the boy who died, was happy and healthy according to his medical notes. But according to DAN doctor Anju Usman he had high aluminium that was not responding to treatment. Here we had the opposite of your problem. Mainstream doctors sometimes do fail to pick up health problems in sick autistic children because of their mistaken beliefs about autism. DAN doctors sometimes treat non-existent illnesses in healthy autistic children because of their mistaken beliefs about autism. In both cases children suffer and sometimes there are tragic outcomes
Those of us who see autism as a difference and not a disease reject both views. But the attitude we take to mainstream science and medical practice is to engage in a debate and try and persuade them to re-examine the beliefs that shape their research in the light of fresh evidence.
The DAN faithful are not open to such a debate. They know the causes of autism. They know they are right. They know there is a big pharma/government alliance to hide the truth. Anything that challenges their position is automatically tainted. So we expose their quackery and sometimes their criminality.
And then there are the vast majority of parents, who have no hard and fast ideas on autism but just want to help their child. These are the most important conversations of all.
Mike,
Perhaps I am lucky. I have found a DAN doc who practiced as a mainstream pediatrician. A few years into her practice she had a daughter who was later to be diagnosed with autism. Now has devoted her career to this cause. Let me tell you something…this woman is not getting rich. She will talk to you until she is blue in the face about correcting (I can only speak for my son here)issues like gut problems. (My sons belly was so distended and he had such gut issues I had him tested for celiac disease prior to the autism diagnosis). My son did test high for lead in his blood. ( I am very aware of the metals in the soft tissue as apposed to the blood….and I would not doubt there are idiots out there wanting to make a buck and playing on desperate parents). However, my doc has talked to me about natural remedies in aiding the body of ridding itself of heavy metals. These interventions are not making here rich from my bank account. Have I ruled out chelation for my son? No, but you can make damn sure I will have all of the facts….and personally IV sounds pretty intense. Anyway, I guess where I am getting at is do we all have to be divided into two camps? I don’t think it is fair to say the DAN faithful are not open to debate. I’m pretty faithful to some DAN interventions. I started diet interventions before behavioral with my son. In a two week period his vocabulary went from two words to 20. He pointed for the first time. He began seeking us out instead of sitting by himself. I am also open to debate new ideas and old ones. I would never give up treatment by conventional medicine if my son would benefit. You used the term DAN faithful. I would like to see all parents be kid faithful. Know that kid like the back of your hand, and do what you think is best for your kids. As far as any doc goes (speaking as a nurse here)….they are working for you. Be your child’s best advocate. Educate yourself as much as you can before you go see any doc. Write down your questions and concerns when you go in, and write that doc’s response. Get a second and third opinion if you need to. I have worked with many docs and as I have said before, there are good ones and bad ones. Be a good consumer and do your homework. It has been great talking with you Mike. My husband is from Ireland so we make it over to that side of the world occasionally. Maybe we could meet in a pub one evening and you could sign one of your books for me. Best of luck to you!!! And God bless you for the work you do.
Jackie
Hi Jackie,
I look forward to that meeting one day.
Regarding the two camps – it is not a division between people who are treating their children and those who are not. Really it is a division between those who are ready to keep an open mind and those whose minds are already made up. There is a hard core of people around Safe Minds, Generation Rescue and the National Autism Association for whom it is an article of faith that there has been an autism epidemic that began in early 1990s. They believe this epidemic was caused either by the thimerosal used as a preservative in vaccines or the vaccines themselves. They believe that the victims of this ‘epidemic’ can be cured with biomedical interventions. They also believe that the CDC and FDA along with the drug companies are deliberately trying to keep all this a secret because they caused the epidemic and are trying to save their reputations.
There are plenty of parents and their doctors, who are treating autistic children for additional health problems, who do not necesarily buy into all this. These are the people I want to talk with, Jackie. People like you. I am interested in exploring the reasons why some autistic children have so many other problems, how we can help them and the potential to extend our understanding of autism.
In short, I am interested in people who ask questions rather than those who think the questions have already been answered.
P.S. Whereabouts in Ireland? I will be in Dingle in a fortnight.
For all of you who are talking negative about the diets, supplements and chelating…HAVE YOU TRIED IT 100 %????
I started my own autism company for the love of my 2 autistic kids….Not only did all of these things work, but we now have speech, pretend play, potty training, no more sleepless nights, and can go places for more than 10 minutes. I’m not saying my kids are cured, but things have improved so much that autism is not in control, I am. NO I didn’t go to a DAN doc, but I sure as hell think I’m doing an excellent job. My clients are VERY pleased. YES MY KIDS WERE HARMED BY VACCINES!!!! I HAVE PROOF!!! they also have HEAVY METAL TOXICITY..AGAIN I HAVE PROOF. Any good neurologist will tell you autism is not just autism……….it’s encephalopathy manifesting as autism….which is the brain harmed by toxins……….Not everyone can afford a DAN doc, so this is why I’m writing my book to explain things that could work for your child. I have talked to pediatricians all over, and finally found some that understand. These kids and adults are insulted by toxins and it changes brain functioning. We do monthly heavy metal testing, insurance pays for it, it’s NO joke..WAKE UP PEOPLE
Deana,
I am pleased that your children are doing well. Will your PROOF be published in any journals or will we have to wait for your book? I prefer data to testimonials.
Deana,
Like Mike, I too am pleased that your children are doing well. But also, like Mike, would love to see your PROOF published in credible medical peer reviewed journals before I submit my kid to questionable, scientifically unproven procedures.
So, if not everyone can afford a DAN doctor, and you’re writing a book about this, does this mean we’ll be seeing do-it-yourself chelation and do-it-yourself vitamin supplement regimens soon?
Jackie,
Your experience sounds like what my family has experienced with my autistic 4 year-old. The regular MD’s only suggestion was to take Adderall which we did for one month of no sleep, poor reports from preschool and a mean child. We are so impressed with our daughter’s DAN! treatment plan and well-educated DAN! doctor. Everything that our DAN! doctor (who is also a very experienced MD and allergist) predicted about our daughter has been true: inability to detox, malabsorption issues with low amino acids, possible yeast, food allergies, and possible heavy metals. All the labs and tests indicated exactly that plus my daughter’s diarrhea disappeared after we started the DAN! supplement/probiotics program along with a child that slept through the night every night (melatonin is great!). DMG was amazing with my child’s speech flowing out of her (this shocked my husband who said “What did you give her to help her talk?” as I didn’t tell him or teachers when I started a new supplement or therapy. Chelation therapy was the greatest thing for my daughter as we saw the amazing child that we have missed since regression between 2 and 2 1/2. We had to stop chelation due to low iron and diarrhea but we will do it again once we have her checked out by her DAN! doctor. She plateaued a bit after chelation then has made steady gains with B-12 shots but not as dramatic as during chelation. Her heavy metals were tested twice during the 4 rounds of chelation which indicated elevated levels of lead, nickel and just a hair from elevated mercury levels. Well, she is my 4th child out of 5 children with the others NT. She is my only child exposed to a flu shot while I was pregnant, flu shot while I was breastfeeding her at 8 months and she had a flu shot at 20 months. These were all recommended by my doctor and I was told that the flu shot would not harm my baby, in fact, my doctor was more of a friend as we are just 4 days apart in age and she told me she had a flu shot during pregnancy so I trusted her judgement. Now, I research every supplement or therapy that my child goes through and take my family to naturopaths for wellness check-ups.
Dairy was a huge trigger for my daughter as she even threw up colostrum in the hospital and was continually throwing up until 10 months but growing normally and oh, so SMART! The new doctor I went to when she was born said she had an immature stomach but we tried Zantac with no success. In November 2005, my daughter’s language returned after taking dairy away “cold turkey” with her going through withdrawal symptoms with a list of other shocking improvements to follow: ticklishness returned, could feel pain, improved balance, slight improvement in eye contact and she was down to one or two temper tantrums per day from 12-14 “grand mal” temper tantrums while on dairy. Her grandfather couldn’t tolerate cow’s milk formula or breastmilk so he was raised on goat’s milk as an infant.
My daughter just got a diagnose last month as Asperger’s syndrome with ADHD but the psychologist had a hard time categorizing her as she doesn’t really fit Asperger’s or the DSM criteria for “autism”. I know she fit the autism standards while addicted to dairy products. Her brother that looks the most like her and is an amazingly smart, athletic and well-rounded 9 year-old tested extremely, off-the-charts allergic to dairy even while he had been dairy-free for 1 year! He was scheduled to have his tonsils taken out last year but when we took him off of all dairy, his tonsils got smaller and his seasonal allergies are nearly non-existent now.
We have a wonderful DAN! doctor who is a well-respected allergist and former “regular” MD. Allergies, heavy metals, vaccinations, yeast, environmental pollutants like lead are inter-related to autism and I do believe my daughter’s autism was triggered by the flu shot specifically. I believe she inherited the tendency to have problems with detoxification and both sides of the family have autoimmune problems like asthma, allergies, diabetes, thyroid problems, arthritis, and cancer. We chose to do only biomedical therapy outside of the developmental preschool and we/teachers have seen amazing progress within the last 9 months using the DAN! program including a GFCF diet. I would stop doing any therapy if results aren’t seen in a reasonable amount of time, after all, I have 4 other kids to provide for. My daughter is a sweet girl now but while going through regressive autism, I would have been willing to put her in an institution as she was scary, dangerous to her siblings, mean, destructive, not reachable emotionally, and had no remorse for her behavior that was ruining our family. Her personality changed for the better after the DAN! program and she is now a sweet, adorable, loving 4 year-old with a high IQ with fun quirks that make her unique. I am constantly having to raise the bar for my expectations for her as she is having so much success with biomedical intervention as other parents indicated in your post.
Kim,
You do not know how encouraging your story is to me. Yes, our stories do sound so similar. Interestingly enough my son, with autism, is the only pregnancy of three that I had a flu shot with. He is also the only one that had a flu shot at under a year. He is off the charts allergic to milk, too. I don’t think I can point to just those things because I believe there are many factors. I think we are talking about vulnerability and environment. I love to learn from everyone’s experiences and am so glad you have shared yours. May your daughter continue her journey to good health, and your family enjoy the wonderful gift of being able to stay together. I would love to talk to you more…do you live in the states?
Mike,
My husband is from Wexford, Ireland. Enjoy your visit to Dingle…is that were the famous dolphin lives?
Deana,
Hey girl…keep doing what works!!! Your kids and the ones you are helping are fortunate to have you. Gather that data. I’ll read your book when you write it. People thought the world was flat at one time, too. This is how we evolve and learn….sharing ideas, facts, and what works for us.
Jackie
http://www.ucdmc.ucdavis.edu/newsroom/releases/archives/mind/2006/phenomeproject3-2006.html
For anyone who is interested in the direction some research is heading in regarding autism…..I find this very interesting. My son, Fintan, and I will be headed to Sacramento in 2 weeks to participate in this study. I practiced as a nurse for many years at UCDavis Medical Center…so it will be nice to visit. Is anyone else participating in studies? I would love to learn about your experiences.
Jackie
http://www.ucdmc.ucdavis.edu/newsroom/releases/archives/mind/2006/phenomeproject3-2006.html
Here is an interesting study my son, Fintan, and I will be going up to Sacramento to participate in. I just think it is fascinating what direction UCD Med Center is taking their studies in. It will be fun for me to go up as this is where I practiced as a nurse for many years.
Jackie
I am having a hard time posting…not sure why…perhaps not welcome anymore? I thought those that want scientific proof would find this study interesting. It is UCDavis Medical Center’s Autism Phenome Project. I will be taking my son up in 2 weeks to participate. “The Autism Phenome Project is the largest and most comprehensive assessment of children with autism ever undertaken. It aims to distinguish subgroups, or phenotypes, of autism based on thorough biomedical and behavioral analyses of affected children.” -from UCD Med Center’s pamphlet on the APP study. http://www.ucdmc.ucdavis.edu/newsroom/releases/archives/mind/2006/phenomeproject3-2006.html
It is hard to ignore discussions on biomedical concerns with these children when studies like these are being undertaken. We must keep open minds and share information even if we don’t always agree. Hopefully the end goal of these lively debates will be to help those who may need it in whatever area may benefit them.
jackie
Hello All,
I know that my son will never be cured of autism (nor would I want him to be) but he is ‘outgrowing’ his diagnosis. Here is what worked for us…
#1 Acceptance. Understand that autism is a different way of learning – not the wrong way.
#2 Early diagnosis. I have a hard time believing that it was so hard for Jenny to get one. It was so easy for us and I am not famous or a former playboy model either. My son was dx at @ 13 months old (those Motherly instincts everyone keeps talking about I guess). I asked his primary MD for a referral to a Neurologist – that’s it.
#3 Early education. (Education that accommodates his way of learning – not ABA)
If I had put my son on a special diet would I have contributed any ‘improvement’ to it instead of where the praise should really go? My son, his educators, my husband and I? Maybe I would have.
I think that praise should go to the child and anyone or anything that contributes to the improvement of any childs life.
Having said that I would invite anyone to look up the Autism Phenome Project and UCDavis’ MIND Center Institute in California. I worked as a nurse at this hospital and feel fortunate to be able to take my child to participate in this study in the next couple of weeks. They have many studies underway. Please note that many of them focus on biomedical aspects. This is the largest study for autism under one roof. Millions of dollars are being spent….and biomedical, autoimmune disorders, environment, etc. are given attention. It is worth paying attention to.
RaeMay,
I am absolutely shocked that you were able to receive a diagnosis at 13 months of age. Maybe things are different over there, but that is unheard of in California where I am. I mean…even if it is blatantly obvious at a year and a half the docs in our regional centers over here are reluctant to give a diagnosis before age three. Do you know what criteria they were using at 13 months? I would be very curious as this would be excellent information for new parents. Congrats on such an early diagnosis. Have not heard of that early yet over here.
Jackie:
I’m in So Cal and am familiar with the very early/infant dx’ing. There are some psychiatrists who say they can provide this service and I know of ppl who have looked into it. Let’s just say that when one child in an extended family has ASD, other family members with newborns have been rushing their infants to these psychiatrists. Not sure that that’s necessarily a good thing. In the summer, IIRC, there were write-ups in several magazines about this.
Note: It’s another thing altogether when a parent is genuinely concerned and seeks out a physician for an infant. What I’ve seen in the early dx’ing is not that; again it’s anxious extended family members attempting to allay their fears (stoked by the soulless rhetoric) as early as possible.
Hi Fellow Californian,
Thanks for that information. I will look into that. It sounds interesting. My son is 2 1/2, and I wrote about some of my problems with regular peds docs. Then at the regional center (and sadly this is not only my experience, but that of most I have talked to) they are not wanting to give the diagnosis of autism because it tends to mean more services to the child after age three. Typically at age three they would then be the responsability of the school system. I am sure things are similar in So Cal and you know more about the system than I do. I am just getting acclimated to the whole system and its ins and outs. I ended up taking my son to UC San Francisco Med Center and had him diagnosed by Bryna Siegel, Ph.D. (She wrote the books “The World of the Autistic Child” and “Helping Children with Autism Learn”.) Of course this evaluation was much more in depth then the 40 minutes the peds doc and the 15 minutes the psychologist from regional center spent with my son. If anything, Dr. Siegel’s report will be good information for us. Anyway, thank you for that information. I will look into that.
Jackie
California too!
The thing that made it obvious to me was a speech regression. My son had many words then suddenly stopped.
I remember at the visit the the Neurologist she would throw a ball, my son would pick it up, crawl/walk back to the first place he picked it up even when the ball was thrown into different areas of the room before he would throw it back to her. He span/crawled in circles the whole time, flapped his hands and other self stimulating movements. All those things and also the fact that it runs in our family made it a really easy dx. probably less than an hour visit. The Neuro just knew.
When I first approached my son’s primary doctor he told me that autism was ‘very rare’ and he was just a late talker boys develop later than girls etc…. I was hard not to laugh or get mad but instead I asked for a referral and easily got one to a pediatric Nero. at Loma Linda Univ.
It never occurred to me to get a dx through regional services – their assistance came after the dx. and they helped me in getting my son into appropriate educational programs that were priceless (even though they were free).
Good luck and let me know if you need any more info.
Jackie,
your recent comments fell into my spam trap. I hope I have released them all.
I agree with RaeMay. Here in Southern Calif., the regional center is not the place for the first/initial diagnosis.
Absolutely…I agree, too. Unfortunately I did not receive timely help from mainstream docs. I had to fight like crazy for some basic blood draws let alone a neurology consult. I knew I wanted services for my son, and got him going in the regional center system when it was evident something was seriously wrong. Getting in to see some of the specialists I have gone to has been a wait. When I go into my IEP I will be armed with 2nd, 3rd, and 4th opinions…for my knowledge and for assistance in getting services secured for my son.
Good to hear from you fellow Californians!! We are practically neighbors. Let me know if you are in San Francisco…we will have lunch and lively conversation!!
Jackie
What research seems to be indicating is that mercury can, in effect, switch off the enzymes that deal with dairy and gluten. An autism specialist told me some years ago to remove these items from my sons diet -lo and behold his eczema cleared up and he started to be able to listen, follow instruction, and LEARN. What is annoying to me is when people say “oh, I tried that”(for how long-a week?) -trying is not DOING. Doing it is doing it for all time and not slipping up. Someone else mentioned about children with autism and health problems -I also haven’t come across an child with autism without problems of some sort. The paediatrician’s solution to the eczema? -a prescription for cream to rub on- not a thought given as to what might cause the problem in the first place.In a perfect world doctors would be keeping up with research so that when a child is diagnosed they can actually say: the latest research indicates such and such and what about a urine test(the above will show up in a urine test, by the way) to see if that’s the problem in this case. I cannot tell you how INCREDIBLY HAPPY I was to see someone on T.V. speaking of removing these things from the diet -they wreak havoc on these children.
I HEARD ABOUTH YOU. NOT INTRUSTE. A FRIEND SAW LARY KIN YOU
WERE THE GUSS. I WAS FORTUNATE TO SEE YOU AND HEAR YOU, JENNY YOU ARE SO RIGHT. I NEED HELP NO DR. WOULD HEAR WHAT I SAY. AT THE SAME TIME JENNY I CAN HELP BECAUSE I HAVE LIVE IT I AM LEAVING IT. PLEASE FINE SOME WAY OF HELPING ME. I HAVE FOUND WAYS OF HELPING THE SYTOMS. AND HOPE CURE.
I KNOW IT WORKS ON BABYS. ONLY WITH YOUR HELP I WILL BE ABLE TO HELP. HELPING I WILL HELP MY SELF. THIS IS THE CAUSE OF HIP REPLACEMENT,GLUCOMA, BREAST CANSER. AND SO ON.
THANYOU FOR THE OPORTUNITY. RON. ESTRADA
Hi Mike – I am SO glad I just found your site. My husband and I recently started exploring possible biomedical interventions for our 4 and 5 year old sons, who both have autism. We started down this road out of sheer desperation. We had a whole mess of tests run on my sons’ blood, urine and stools and we recently got back the results. The tests showed lots of yeast and bacteria problems in my younger son, which didn’t surprise us because he has always had gut issues. The tests showed that our 5-year old has “moderate mercury toxicity” and the doctor said he has high levels of mercury and lead in his body. I don’t have a problem with the medicines, vitamins and supplements the doctor has prescribed. However, he is urging us to start chelation on my son. We swore we would never go down that road, but now that we know the mercury and lead is in his body….what do we do?? We don’t feel good about doing chelation and we don’t feel good about doing nothing. If chelation is rubbish, what DO we do to get the heavy metals out of his system?? Thanks for your help!
Deb
I am not a doctor. Speaking as a parent this is what I would do in your situation.
The first thing to do is confirm that there are heavy metals in his system. Many advocates of chelation give provoked tests that exaggerate the amount of toxins in the body. They send the samples to laboratories with dodgy reputations for accuracy like Doctors Data or Great Plains.
Go to your local hospital and get a second opinion. If he needs treatment see a regular doctor in a regular hospital, not one of these so called complementary or alternative physicians.
The second thing to do, and I would be surprised if your doctor has not already told you this, is to look for and eliminate possible sources of contamination in your home. That is standard advice in cases of lead poisoning. Last week was National Lead Poisoning Prevention Week in the USA. Follow the link for some useful advice.
You are absolutely right to be cautious. A proposal to study chelation in autistic children was put on hold by the NIH after animal studies suggested that chelation could cause brain damage in healthy individuals.
And you have to ask yourself this. Mercury and lead poisoning make you ill. Prior to testing, did you have any indication that your child was poisoned? The chelationists like to pretend that metal poisoning symptoms imitate the symptoms of autism. But the core symptoms are distinctive and dissimilar to autism’s core symptoms.
Please let me know how you get on.
Thanks for the info, Mike……especially about chelation possibly causing brain damage!! That is very scary….and I refuse to turn my kids into guinea pigs! I am going to take your advice and schedule an appt. with my boys’ regular pediatrician to go over everything the DAN! doctor has prescribed. By the way, all the testing done (Organic Acid, stool samples, etc.) was sent to Great Plains Lab…..except for the porphyrins test, which was sent to some lab in France! I thought this was kind of strange, but the doc said that lab was more accurate than Great Plains. Hmmmmmmm……..I wonder what the REAL reason is. I’m also wondering if ANY of the test results we paid for are any good. Thanks so much for the information you are getting out. We were getting sucked into the vortex of DAN! and biomedical treatments……thank you for pulling us out!
Always take the responability for educating yourself…no matter whose care you put your child in. I find the book “Changing the Course of Autism” by Bryan Jepson very interesting. He is a medical doctor who turned his focus towards autism when his son was diagnosed. He had approached the whole biomedical approach with skepticism. His career now focuses on treating autistic children. His book, I have found, is an interesting read.
I live in SoCal and belong to local support group and the main issue most of us have faced are with our childs physician and their denial of our childs diagnosis. Not only have they refuse to talk about it or refused to consider autism, they have prescribed drugs like Ritalin and claimed ADHD. Our children have all been evaluated and diagnosed with autism by professionals. To not be listened to by the “regular” docs are what has forced us to look outside the box.
The biomedical approach not only works, but is being sought out and followed by many, many parents for their child. We started this years ago so it’s not new. It just took someone with courage, like Jenny McCarthy, to speak openly about it.
Samantha,
if your child has a DX surely the next step is services. Are physicians the gatekeepers to these services in SoCal? If they are and you have a valid DX surely a court order would settle matters. Why should denial of services lead you to biomedical approaches? And if these biomedical approaches are working what is your problem? Your kid is being cured so you don’t need services and you don’t need the regular docs. Am i missing something here?
In the practice where I take my child only one person and it was an adult was positive for mercury at university levels. These bogus tests being used need to be stopped to end the useless damage being done to these children. Can DAN doctors who are not M.D’s be held accountable by the medical board. In NY doctors are not allowed to order tests from some of these labs. what happened to first do no “harm”
Thank the Lord this is still America and we are free to choose how to treat our children. We are not required by law, as such, to do what the doctors try to force upon us. I think it is awesome what Ms. McCarthy is doing and applaud her hardwork. At least more people will stop and think outside the box about autism and immunizations. This is simply her story and what works for her precious child. She has tried to help what God entrusted in her care – a precious little boy. Freedom of speech is wonderful!!!!
Actually, Lee, this is not America. It is the world wide web. I am in the UK. We have child protection laws over here. So do you. I believe in protecting children by vaccinating them against preventable diseases. Do you?
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Well
we have a fantastic DAN doctor. Our son has made incredible progress in 6 month time and we are aiming 100% recovery. She is very up to date, open minded and is an expert in biochemical functioning of the brain.
About the vaccines I could notice my son was very ill after each one and we stopped doing them after a while. I would never do MMR for my kids, I had measles and rubeola as a child and it was really nothing. Also varicella is ongoing here and really no one gives a damn about it. I’m sorry to say it’s mostly advertising from pharmaceutical lobby.. Oyr son has a very high burden of metals lead and mercury, viral problemns, gut problems, immune system not working etc. Lead poisoning and mentail handicap is known since the Romans they used to called it saturnism. And yes healing these improves his condition.
Most DAN docs use urine porphyrin test (not chelating agent provokating anything) and so they can be compared with other people. The data provided on the chelatingkids2group are quite interesting. If you read them you will notice a direct connection between the metal burden and the severity of the autism diagnosis. Even more interesting arsenic levels are elevated for almost all cases, this is probably underestimated problem.
Chelation has a 76% succes rate, it is the most efficient treatment so far.
Personnally I don’t think it’s dangerous (provided you don’t give the wrong meds like in a couple of cases). Anyway life is a risk. I can take a risk to save my child’s life from autism. Is ending up in an institution a good life for him?
If everything else fails.
Most people who criticize DAN method have not tried it (and they probably would like to but obviously they don’t want things to change).
What would your kid say if you had to tell him you just didn’t want to try it out? Why did others have the chance to recover and he didi’nt? Would you say money? some did it without a doc others made a loan. too difficult to do a diet, too lazy or maybe really afraid to admit that you can change your way of thinking and that you can save your child’s live?
Tell me your perfect argument…the guinea pig? Is it really so hard to change a diet and try a few vitamins (it’s not only about chelation). The risk…? some do 100% natural stuff no rx (a mom I know has recovered 4 kids alone that way).)
Go to the forums of people who do this stuff ask them how they did it to recover a kid from Kanner syndrome to total recovery…and don’t give me that ‘autism is cool too, look at Einstein’ argument…he was not a low functioning dependant individual…but his son was and he could not bear it so he left his wife to deal with it and send her the money of his Nobel prize to ‘take care’ of him.
Poeple move your asses like Jenny and at least try it. No one will blame you for it. I know one day my child will thank me for saving his life.
Senta
Senta said “I would never do MMR for my kids, I had measles and rubeola as a child and it was really nothing.”
Oh goody. You survived. Tell you what, you go to the Roald Dahl website and tell his surviving children your thoughts on measles. I’m sure they would love to hear how their oldest sister’s fate was just bad luck.
Better yet, how about you contacting the boys that this article is about and tell them measles was just a trifle:
http://www.timesonline.co.uk/tol/news/uk/article1055533.ece
Of course, you do know that the MMR vaccine has never had any mercury.
And well, you are so good about telling everyone how to treat their children, and how to spend their money. Too bad that the plural of anecdotes is not data.
Oh, by the way… The Einstein bit, it is a myth. The man could speak when he was two. Something I wish my son could do. Don’t believe me, then read his biography called “Private Lives of Albert Einstein”. Also, neither of his sons was low functioning. You will learn more about the family from that book, since you seem to be very very misinformed.
Thanks HCN for saving me the trouble of answering Senta. One question I do have for Senta. I am not interested in what you feel or what you believe. Do you have any data from published studies that we can discuss?
Prologue
While contemplating my interest in doing the Masters in Disability studies at Brock University in St Catharine’s, Ontario, I stumbled upon a website where Jenny McCarthy discussed her son, ‘the Crystal Child.’ The article made me giggle as my mom’s spiritual beliefs always included the healing power of crystals. She believed they were good luck and in our family, we needed all the luck we could get.
I grew up with two younger Autistic brothers, one of them 18 months younger than me, the other 7 years younger. I don’t know if I would say that I had a hard childhood, because really it was the only childhood I ever known: For all the good times I would hate to smite my memories in anyway shape or form. However, it was an interesting childhood to say the lease.
I wanted to forward this story to Jenny McCarthy, because after reading some articles she had written and after learning about how she fought to save her son I finally, after all the years of not getting around to it, I sat down to start writing my own story about my own experiences with Autism. I sat down one afternoon and read her book, ‘Louder than Words.’ I was impressed to know how hard she fought to bring Little Bird back into this world, so the world that Autism helped him created couldn’t keep him trapped any longer. Her strength of conviction reminded me of my parent’s battle to help my brothers. It reminded me of my own story; my own childhood growing up surrounded by Autism. I wanted to tell you my story and I thank you for telling yours because it is not an easy thing to do. I myself cried at least a dozen times while writing this because it made me remember the hurt. It made me remember how hard it was on all of us.
It’s important that the strong speak out to let the world know, Autism doesn’t have to win. We have the information and resources at our disposal to help these kids and we cannot let the window close before something is done to bring them out of their shell.
We all need to do whatever it takes, to reach these kids.
Trapped at a Distance
‘ALRIGHTY THEN…’
A phrase I heard echo from the living-room television as my Autistic brother obsessively watched Ace Ventura, Pet Detective for the umpteenth time. It was always the humour; the laughter that brought his anxiety level down and allowed he and I to connect. It was the only thing that encouraged him to connect with anyone, for that matter. From the beginning laughter was always our one way to reach them. The obsessions were numerous, which is typical of Autistic children but we were able to tap into their obsessions and use them to work for us. Watching their videos often helped comfort their anxiety as the repetition soothed them. Both David and Adam would rewind and re-watch the same 5-minute segment of a movie over and over, each time laughing as though it were the first time they heard the joke. We didn’t know at the time to refer to this as ‘stimming’ but this was in fact, exactly what they were doing. For some reason the ‘stim’ calmed them. As we aged together David, Adam and I would rant together, carrying out dialogue from movies scenes and we would laugh for hours. I myself have probably watched Ace Venture roughly ten thousand times (ok, slightly exaggerating) and at one point could probably re-sight the enter script to anyone who was in the mood to listen. You dare not strip an Autistic child of his fixations, as it would send them even deeper into the world they have created onto themselves. Winning the battle over Autism was, for my family, all about perseverance, finding that connection and redirecting the obsessive nature to create something positive.
David
In his early youth, getting him to interact with anyone was difficult to say the least. He didn’t begin to talk until after he turned 6, but even when the words started slowly trickling out, the mountain of problems made real progress feel as it were an ocean away. My mom said that he appeared to have colic in his early infancy because he cried much more often than I had as a baby. His lungs were extremely weak and his respiratory difficulties manifested into Asthma. Most of his early childhood he spent in and out of the hospital battling severe asthma attacks. When he was 6 months old he was admitted to the Intensive Care unit at Sick Kids hospital in Toronto, Ontario for a fever my mom could not seem to get down. His fever kept rising and rising then at one point the doctors said his death was inevitable if they couldn’t get the fever down soon. At first they couldn’t figure out what was wrong but he was later diagnosed with Kawasaki disease, which ultimately causes severe damage to the heart. I remember sitting in my mom’s bed, witnessing the suffering in her eyes and asking her if David was going to die. I was 2 years old at the time. After my family spent many sleepless nights hunched over in a waiting room or propped up next to a pop machine David began to show signs of recovery. After over a month of being in the hospital he was released. I remember how weak he was when he came home; like a rag doll on Valium. It seemed as though he was never out of someone’s arms and my mom kept telling everyone to be gentle with him. Knowing that he could have died and yet there he was sitting propped up on our couch, I ignored my mom and kissed him as hard as I could.
Now that the doctors were able to stop the disease that would have attacked and destroyed his heart, my parents turned to having him assessed by a psychologist as it was obvious to them he was severely developmentally delayed. It was clear that David wasn’t learning the way he should be, after all, they had their baby girl to compare him too. His play was repetitive and simplistic; he would rarely show interest in toys; it was seldom that he responded to his name and his language development was way behind schedule.
A psychologist assessed him at age 3. Before that the doctors thought he might have had a hearing problem, which they thought could explain why he did not respond to his name and always seemed to appear in a daze. David could play alongside a child in the sandbox and as the hours went by not once would he acknowledge the child beside him. When David was age 2/3 the doctors blamed the majority of the ‘odd’ behaviour David was exhibiting on my parents being ‘young and inexperienced.’ David was later labeled as being mentally retarded and my parents were told that even with the speech therapy they had enrolled him in, it was unlikely he would ever be able to speak.
He could not control his emotions and when he became upset he would shut down and would sob in a corner for hours, unable to explain to anyone what was wrong. I remember explaining things to him required a great deal of patience because he couldn’t focus on what you were saying. He just didn’t take it in. I made the mistake, once, of quietly rolling my eyes at him out of frustration. He disappeared for an hour and I found him crying in his room alone. It took my mother and I three hours of talking to him at the kitchen table while he sought out the words to explain how he felt. For the first two and a half hours he said nothing. We kept asking him what was wrong but he couldn’t get one word out, he only sobbed. In the end he was finally able to explain, “April hates me.” The backlash that fell on me was the pain of having my mother plead with me, ‘you should have known better than to upset him like that….’
Art Therapy
David was always incredibly withdrawn and his attention span ended in the snap of a finger, unless of course he was stimming away. When he wasn’t rewinding and watching ‘Dumb and Dummer,’ over and over, he preferred to spend his time alone in his room. It was there he would spend hour after hour in solitude, feeding his obsessions by creating beautiful masterpieces of artwork.
It started with tracing paper. My mom would buy it for David and I to practice drawing. David would go through his entire package and then half of mine, tracing images of monster trucks. He was fascinated by Monster Trucks and all day long he would watch the races my dad had taped for him. It didn’t take long before the tracing paper was tossed aside so David could draw his images on regular paper. If I recall correctly David had a very minimal vocabulary and yet he could draw a three-dimensional monster truck from any angle. His artistic abilities stood out from the beginning to be positively-mind blowing to anyone who saw his work. He would spent hour after hour perfecting the images he drew, each day his precision and accuracy increasing. The obsessive nature evoked through his Autistic tendencies laid the groundwork for his gift to be born. Despite the fears we all shared the family took comfort knowing his gift, his ability to draw and paint magnificent pieces of artwork, would take him very far in this world. He would spin heads and alter forever the way people understood what it meant to have a disability. David would help the world understand what it meant to overcome. To get beyond this disease; this seemingly impenetrable cage which keeps Autistic individuals trapped onto themselves. Eventually his talent would truly blossom and after decades of development in his late teens he would attend the most world-renowned Illustration College program in all of Canada, at the Sheridan Institute of Technology.
When he wasn’t drawing, together we would watch whatever movie he was stuck on at the time. At one point he became obsessed with RoboCop so he would walk around the house trying to mimic the character’s voice, mannerisms and the way he walked. He was so stuck on this character it would be all he would want to watch, all he would draw and his ‘pretending’ to be RoboCop was to a point he didn’t seem to be able to control when he was in character. He would walk and talk like RoboCop at school, at home or in public. He never picked up on social cues naturally so walking around the mall -pretending you were half-man, half-machine seemed perfectly fine to him. It was like he was walking around in a bubble, never seeing how inappropriate his behaviour was because really, part of his disorder made him want to ignore everyone around him. The social anxieties were overwhelming so it was just easier and more natural for him to just shut it all out.
I was in grade 2 when David entered kindergarten at the school I attended at the time. I spent my recess protecting my brother from the children on the playground who were his would-be bullies. He walked in circles and talked to himself, which tended to draw a great deal of attention in the schoolyard. Where difference was embraced in our home the need to conform to social norms became an obvious necessity on the playground at school. He would play his favourite movie scenes over and over in his head and laugh to himself. David’s hysterical laugher was uncontrollable, as he couldn’t stop the movie that played in his head. Clearly his global delay held him back from the rest of his class and his ability to focus and absorb complex instruction would prevent him from getting the proper education he deserved. It was abundantly clear that David needed to be transferred to a self-contained class where he could receive the one-on-one assistance he needed. It was imperative that his curriculum be tailored to his unique learning style and that whomever worked with him understood what it really took to reach him. To peak his interest and keep his attention, thus enabling him to learn how to learn….
If David was in a situation where he began to feel overwhelming for some reason you could watch his face and witness his brain disconnect. He would drift off to, what my parents began to refer to as ‘the 5th, as in, the fifth dimension. When he entered the 5th, he was disconnecting from the world, typically, so he could play his movies over and over in his head. When in the 5th, he would sit and laugh hysterically to himself seeming to be in a whole other world as he was not in touch with anything that was going on around him. You could even call his name and he wouldn’t just snap out of it right away. When he was younger he spent most of his life living in the fifth because that is the world in which he felt most comfortable. It was a world he had complete control over and for that reason he could go there and remain at complete ease. He couldn’t control the external world. He was constantly being asked to respond to external stimuli when really the world he had built in the 5th was where it felt the most safe.
Camp Winston
Throughout an Autistic child’s life there will be periods of regression. There are also times that it seemed they exhibit leaps of progression where one could say the child is demonstrating more ‘normal’ behaviours. Other times it would seem they would regress so much so that the last few years of progress seemed to disappear and we had to start pushing hard, all over again. It never seemed to let up. The day my mom put David and Adam on the Waiting list for camp Winston was significant indeed. The camp is located in Brace-bridge Ontario and is world renown for having facilities best equipped to work with children and young adults living with Autism. My parents would save all year just to send the boys to camp for 2 weeks in the summer. The changes that would occur in my brothers over that seemingly short period of time, were astounding. Each time they came home their level of maturity level had changed dramatically for the better and not only that but they now desired interaction with people. The boundary between our world and the 5th began to fade and and as that happened their eyes began to open and their interests started to broaden. The experiences they had at camp helped them become more in touch with their environment, which is an essential aspect of any child’s development.
Strength
My mother’s drive and determination to help David be more…lead her on journey demanding help from all directions from the very beginning. I remember her reading his this book called ‘Paint by numbers’ when he was 4 or 5. “Say Green David!” He would respond with a grunt and a smile.’ She always praised him for his effort. Even if it in no way sounded like the word he was trying to say. Even at this age a mere grunt was a good sign. At least he was attempting to respond to the question. My mom spent a lot of time fighting to receive help with David. It started with speech therapy and a ‘special’ primary school for special needs children. David had to been shown how to make proper facial expressions to reflect the emotions he was having. He didn’t know how to make the connection that he should frown when he is sad and then smile when he is happy. He always had the same look on his face and had to do exercises to help him learn how to express himself. He was sick all the time with lung infections and he had a lot of digestion problems which lead to him taking medications for constipation. It was never suggested to my parents by any doctor that there could be something wrong with David’s diet. “Some kids get constipated, give him this,’ was generally there way of handing things. Given that he wasn’t diagnosed with Autism at the time, the connection to his diet was never made. Despite the unbearable frustration my mother must have felt each day I never saw her spend time dwelling on the misery of not really understanding why David could not learn the same way as other children. She took all of her grief and focused it on making sure David received as much help as possible. What else is a good mother to do in this situation? Give up?
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
(Dylan Thomas)
Worry cripples the weak and instead of action being taken to overcome, Autism is no longer the real demon, self pity is. Parents who allow self-pity to cripple their efforts waste time crying, ‘Why us….why MY child?’ My mother pushed and pushed with everything she had in her and when she had nothing left, she gave a little more. Her dedication was so strong that when the boys didn’t need her help so intensely anymore, I think she struggled very hard to find herself again. It became about ‘them’ so much so that the problems in my parents marriage were pushed to the side only to have those problems resurface and lead them to break up just before reaching their 25 year anniversary.
When I was 7, David age 5, my mother gave birth to our brother Adam. His behaviour and mannerisms resembled David from the get go. My parent’s obvious concern lead them to pursue language testing and psychological assessments at an early age. At the same time that David was being formally diagnosed with Autism, my parents had some discussions about Adam with the Doctors. It wasn’t until David was age nine that he was finally being diagnosed with Autism and now at age 4, the assessments would suggest that Adam was also Autistic. At first the Doctors hoped that some of the behaviours might be learned behaviours suggesting that Adam might be mimicking his older brother. However, after conducting all the necessary tests, the truth finally came out. David and Adam were both assessed by Dr Peter Szatmari (Professor, Vice-Chair of Research, Chedoke Health Chair in Child Psychiatry, Head of Division of Child Psychiatry, Psychiatry and Behavioural Neurosciences) His clinical involvement is primarily with children with Autism Spectrum Disorders and he has worked in this field over twenty years. He was involved in developing the Pervasive Developmental Disorder Team at Chedoke Site of McMaster Children’s Hospital, a regional diagnostic and treatment program for children with this diagnosis.
Hanging on the wall in Dr. Peter Szatmari’s office is a self-portrait David did at age 10. It is the only piece of artwork that hangs on the wall in Dr. Szatmari’s office to this day. The charcoal medium in which David chose to create his own image evokes this murky distant feeling. He always struggled to express himself through language but if you read David’s artwork you could understand him. I have a friend who attended the McMaster University Medical School and when her studies focused on psychiatry she was introduced to Dr. Szatmari. She entered his office only a handful of times, each time she was mesmerized by the intense emotion the self-portrait displayed. Years later her and I met for the first time and her knowledge of the portrait popped up as we discussed some of her experiences in Medical School. For some reason, seeing this portrait was one of the Med School memories that really stood out in her head.
The older sister
Throughout my life my mother and father have always relied on me for support where my brothers have been concerned. My brothers would not socialize with ease the way I did. I have always been a social butterfly but to David and Adam, interacting with other people was a chore that brought on intense anxiety. All David ever wanted to do was play his repetitive games by himself, watch his movies and draw. After my parents went to sleep I would crawl into David’s room, lay under his bed and would put on puppet shows for him while he sat and watched, laughing. He might have had a hard time socializing with strangers but I understood him so he didn’t need to explain to me what he needed because I already knew. My friends all knew David had special needs because there was no hiding this fact from anyone right from the get go. After all, when we were really young he would walk around in circles over and over flapping his hands and if you tried to throw him off his pattern, he would squeal at a pitch that could shatter glass. My friends would inquire about this. It was also important that they understood where our family was coming from so they could help work with us. ‘Help us, help David!’ They would act out the movie scenes with us as my Dad video taped with his camera. David slowly learned how to have fun with other people. It didn’t have to be about them, ‘getting in his space’ and he started opening his eyes around him to the world for the very first time.
For my 10th birthday I was allowed to have a sleepover with 10 of my closest friends. From my point of view this was a day that was all about me and I always felt as though the days that were just for me were often few and far between. My parents’ minds’ were, after all, preoccupied with worry for my brothers; thoughts of how they could help progress David and Adam’s development. This day though, this day was mine so I hoped and prayed that nothing would go wrong.
Just as I feared, when David decided to leave the solace of his room to find a slew of girls yacking to one another and laughing at the top of our lungs, he became overwhelmed. Of course, he didn’t explain this using his words because the overwhelming feelings of anxiety would actually make him go mute. It was as though he couldn’t talk in that moment, even if he knew how to say every single word to describe how he was feeling, he would remain silent. He looked at all of us, screamed his most wretched scream at the top of this lungs, then ran part my friends into my dad’s work-bunch room. My mom rushed to his aid and I stared back at my friends who looked at me with confusion in their eyes. My friends were always very understanding because I would not spend my time with judgmental people; it’s as simple as that. They just didn’t fit into my life because if they didn’t understand David then they just didn’t understand me either. Being only ten years old however, I couldn’t’ help my own overwhelming feelings of embarrassment and intense shame for the odd behaviour that my brother had once again exhibited in front of my peers. My parents encouraged me to carry on with my party and have a good time, as they would attend to David. The problem was, I could never let it go when David would leave the room so devastated. I knew that even though it was my right to celebrate my own party, I felt responsible for my brother who remained in hysterics in the other room. I worried about him while at the same time, resenting him for being in my head; for preoccupying my mind with guilt. I felt myself withdraw from the party that night. After everyone went to sleep in the basement I went back up to my room to sleep by myself.
Music and Laughter
My grandfather used to make David laugh hysterically, telling him various jokes over and over. Initially, David didn’t have a clue what the joke meant, because he couldn’t make the connections required to fully understand the punch line. My grandfather always made sure it was a slightly dirty joke that involved the word ‘poo’ or ‘fart’ so no matter what the punch line, David would be in stitches. “If you ever get hit with a bucket of shit, be sure to closer your eyes!!!” He would sing that to him and David would laugh and laugh.
My Dad is a musician (he plays the drums) so as children we spent a lot of time listening to music from the 70’s and watching Much Music as we danced and sang along. David took an interest in the drummer from the band Def Leppard, Rick Allan, and would bang on his bong drums with a single drum-stick. He would place his other arm inside his shirt because Rick lost his arm to a car accident and David wanted to look just like him. I have heard the song, ‘Poor some sugar on me’ probably more times than the band has performed it in their entire career. My Dad’s musical influence helped shape the lives of both my brothers. At the school where my dad worked as a janitor, we would go with him to work on the weekends sometimes and play for hours in the music room. We didn’t have a drum set at home because my dad sold it to buy our first house so here, for the first time, David had the chance to transfer his love for the bongos to a full drum set. In grade 8 he performed a ‘When I come around’ by GreenDay. A very proud moment for all his teachers, family and classmates who rewarded him with a roaring round of applause after he finished his last drum roll. In high school he not only managed a full course load but he also took guitar lessons and was a drummer in the School Jazz Band. He actually sought out to make friends and to learn how people his age should interact. In some ways he remained stunted socially as he would still have difficulty ‘catching on’ to jokes and various social cues. His Autism made him spend so much time in his youth ignoring the outside world that when he should have been absorbing information like a sponge as most children do, he was falling behind. He was missing the small intricate details that kids pick up from their surroundings along the way. He has to be taught each little detail where most of us just learn this stuff through our friends, teachers…whomever is around us to feed us knowledge about the world. Like everyone else, David had to learn how to befriend people who will like him for who he is. This may have taken him longer then it takes your average person but ultimately, the Autism did not succeed in keeping him trapped in its cage. David now willingly explores the world and befriends only those understand where he comes from and don’t judge him when he can’t keep up with the conversation. People who are willing to see what he has overcome to appreciate what an amazing person he really is.
Choosing Adam
When Adam was born, I was 7 and David was 5. I went to school the morning my mom went into labour and told everyone I had a never baby sister as I must have been under the impression that I could will it to happen. When I got home, my Grandmother told me my mom had given birth to a boy but they had yet to decide on a name for the baby. My mom’s sister Cindy brought David and I into the hospital to meet our new brother. My mom said he looked just like I did when I was a baby. After a while of cooing over the new little bundle, we began discussing names. Everyone had his or her opinions, of course, which had been already discussed at length over the last 9 months. Still no one could agree. Then a quiet voice spoke up from the end of the hospital bed from the young boy who at age five, was rarely able to express himself verbally. David whispered, ‘How about we name him Adam….”
From a young age Adam started getting sick just like David did. Again, with the lungs. At 18months old he was rushed to sick kids hospital with an asthma attack and a fever. This time, Kawasaki’s was not involved but his severe asthma had taken a toll on his body and yet again, we did our best to cope. My mom was a complete wreck, David at home with the needs he had and now her infant son in the hospital just as her first son had been. Eventually Adam got better, came home and the family sat down to discuss reality. David had just been assessed and was diagnosed with Autism. Now the doctors wanted to test Adam for the same thing. His speech was delayed, his personality was withdrawn, and his comprehension was low. They always test the hearing first to see if the child is not responding simply because they cannot hear what is being said. As was the same with David, the problem had nothing to do with his hearing.
My mom followed the same pattern that she did with David only now it was easier to receive help because there was a distinct label for the disorder both the boys suffered from. When you know what you are dealing with, it is easier to treat. Adam went into the same school programs as David and had most of the same teachers. All three of us attended weekend programs that were integrated so that siblings of the special needs child could also attend. I would run around and play with Autistic kids, visually impaired kids, deaf kids; all of whom had something holding them back which made it difficult for them to socialize; some barrier that had to be crossed in order to enable communication. Where there is a will, there is a way. Once I was old enough I became a volunteer in these very same programs I attended myself in my youth. I started working for a government-funded agency when I was 14 working with a 4 year old Autistic boy named Matthew. He is now 17 and I still work with him every Saturday afternoon. I started working with Matthew after my mother became friends with his. Matthew’s older teenaged brother Jordan was also diagnosed with P.D.D (Pervasive Developmental Disorder) and attended various programs for special needs teens with my brother David. Matthew’s family as well as my own family were involved in a very significant Autism study which sought to find genetic abnormality in Autistic children and their family members that would help doctors identify the gene, if there in fact was a gene, for Autism. Nurses came to our home a few times to take blood samples. I was glad to be a part of ‘the cure’ as I saw it but the whole process made me feel as though my blood was dirty. I felt like even though I didn’t have the disorder, it was still looming quietly, waiting until I decided to have children before it would rear its ugly head. This tainted feeling made me resolve to accept that I would never have children because I myself wouldn’t want to experience the pain I watched my parents go through day after day. I loved my brothers but I didn’t want the pattern of my life repeated; another cycle of the same pain run through the wash.
After the results from the study had been concluded when I was in my mid-teens there was an event hosted in Hamilton for all parents who wished to receive information about current Autism research. The auditorium was completely packed full of parents, eager to find out of their blood was indeed, tainted. I had volunteered to speak in front of these 3 hundred people on a panel of people who all had Autistic siblings. We were expected to answer questions and give our opinion when parents asked us questions. It was much more intimidating then I anticipated it to be.
After the experts were done overwhelming the audience with geneticists’ terminology, to floor was turned over to the sibling panel. We were asked questions about how we interacted with our siblings and whether we resented the fact that our parents were focused on our sick brother or sister rather then giving us the attention we deserved. We all indicated that we understood where our parents were coming from and that we did not resent our parents for doing what they had to do. After all, we had a vested interest in having our parents fight the Autism because ultimately we wanted what was in the best interest for our brother or sister. Needless to say, many parents approached us after the discussion had ended to praise us for our maturity and to squeeze in final questions so we could help give them answers that would ideally, make their lives easier.
Before the end of the hour, one parent stood up and asked us all, ‘how we would change our lives if we could? In other words, how would we change the way our siblings are.’ I spoke up right away before anyone else on the panel had time to think. I already had that answer because I spent many nights thinking about it before crawling into David’s room to put on his nightly puppet show.
“My brothers are who they are because they have Autism. It has been a part of who they are since the beginning as it has helped shaped their personalities to who they are today. Considering that I love my brothers, I wouldn’t change them for the world. I would only take away the extra frustration they deal with all the time, just trying to make it through the day.”
To my surprise all the parents rose to their feet and gave a full out round of applause while my face went beat red. It caught me off guard but in a good way. I was glad I could say something that would make them see that their so called ‘normal’ children were not being totally raped of their childhood through the experience of having an Autistic sibling. Everyone on the panel that day demonstrated their own way of reaching their Autistic sibling and they all felt blessed that they were able to help other families who had similar life experiences. After the applause died down the master speaker addressed everyone, thanking all the experts and parents, for coming. A mob of eager parents rush down and surrounded us, each bringing their own detailed questions for their review. I remember how good I felt to help these people cling to hope. After all sometimes hope is the one thing that gets us through the night.
Autism Rears its Ugly Head Again
Adam was always very sensitive to noise but it was only certain noises that would set him off. The fire alarm went off by mistake a few times when he was young which provoked screams of shear terror that would have led the neighbours to believe we were slaughtering sheep in our living room. He was antisocial of course, and it was difficult to get him to follow instruction because his mind always seemed to be in a haze. He was extremely picky with his diet and was wary of eating foods with certain textures. He too exhibited obsessive tendencies, watching the Ghost Buster Movies, then it became all about Alice Cooper. Much like the way David took to Music, Adam became addicted to this particular artist. He even dressed up like him for Halloween 4 years in a row. He could recite every lyric to his favourite songs and yet if you asked him a basic question that required a simple answer, he would just star at you dumbfounded. Though he initially appeared to be just like David, he didn’t seem to be quite as withdrawn. He was clearly ‘different’ but from the beginning it wasn’t quite as difficult to reach him as it had been with David.
His next obsession was VanHallen. Which provoked an obvious interest in the guitar. He never really took lessons, he just learned from my Dad’s friends who would come over to jam in our basement. He became fixated on music and in doing so he turned his obsession into talent. Now at age 20, he is a brilliant musician. Once terrified of social settings outside his realm of comfort he now often performs on stage with my dad’s band and he has also entered high-school ‘battle of the bands’ competitions while singing lead vocals as well as playing lead guitar.
September 2007
Since my parents recent divorce my brothers now live one with each parent. David now a young man age 25, has a level of drive and ambition that I find extremely inspiring. I stand in awh of him thinking of the things that both of my brothers have overcome so far in their lifetime. Adam has yet to attend college but much like every normal boy his age he just doesn’t have a clue what he wants to do. In time, he will and everything will fall into place as it should. David, as I mentioned went to college to study illustration while at the same time I attended McMaster University to work on my degree in English and Anthropology. Throughout University I worked very hard, going to school fulltime and working 30 hours a week as a Special Services Worker, teaching self help skills to children and young adults with special needs. David also went to school fulltime and in order to complete his assignments by the required deadline he would stay up all night sometimes, his head never once seeing his pillow. The thing was, this was something everyone in his program did. He wasn’t doing it to catch up, he was keeping up and succeeding in life with flying colours. He now lives in Mississauga in an apartment with my dad. He pays his own rent through the money he makes as a Caricature Artistic at Canada’s Wonderland. He takes the train and then a bus 2 hours in each direction to get to and from work everyday. Unfortunately the job is seasonal so now he must struggle to find work. He has a government supplied Case Worker who has worked very hard to find work for David in his field. David is gradually learning how to market his own work, and slowly but surely he and I will finish that children’s book we have been working on for years. Our parents used to say when we were children that we would eventually publish a book together. Slowly but surely we both intend to make sure this particular dream along with all our other dreams are eventually accomplished. In the meantime, my own person dream is to see David’s artwork appreciated by the world. I want people to loose themselves in awh of his gift, just as all of us who know him do. I need everyone to see what great challenges my brother has faced and how brilliant his talent shines for all the world to see.
Please help me show my brother to the world.
http://www.terminus1525.ca/site/search
April Beresford
aprilberesford@hotmail.com
I live in Northern California, and I have 5 children (3 from my husband’s first marriage ) and four have autistic spectrum disorders – my two stepsons have Asperger’s and my two daughters have high functioning autism. I’m sorry so many have trouble with getting a diagnosis. We have Kaiser and never had such difficulties. Our youngest three kids were all seen in the past year and a half and all I had to do was ask their pediatricians for a referral to the Autistic Spectrum Disorders Clinic in San Jose. Our youngest daughter was diagnosed at 18 months. We did have to wait a few months because the demand is so high for assessments but it was well worth the wait. They use the ADOS as well as other assessment tools and are very thorough
and professional. We’ve also been blessed in our dealings with our district and regional center. Everyone has been very supportive. Our now 2 and 1/2 year old receives ABA, speech and OT therapy at home covered by the Early Start Program. Our 4 year old daughter receives those services through her SDC Preschool. Our 11 year old is in regular classes with accomodations and our eldest attends college. We don’t do DAN nor do we have them on any special diets as they don’t appear to have any of the symptoms of gluten or casein sensitivity. I think honestly if you want to put your child on a GFCF diet it’s probably the least damaging thing you could in terms of biomedical treatments. As for chelation etc I frankly need to see more research done in these areas before I put my kids through that. And as for vaccines, to be frank you don’t die because you’re autistic. You can die from measles, mumps or rubella or the flu. Again, there needs to be more research before I stop vaccinating my kids. And that’s just my opinion. I respect that every one of us is simply trying to do the best we can by our children. I’ve enjoyed reading the dialogue between Jackie and Mike – you are both a wonderful model of how two persons with differing views can still dialogue without it resorting to name calling etc. Thank you.
April,
Wonderful story, and beautifully put. You are an inspiration, and you have reminded me of the need my other children have for my time and attention. Thank you.
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