Autism Research - Discovery

And what of those that REALLY have autism, and not just CDD!?!?

HECK, some with autism have ABOVE normal intelligence, and many are around normal. AS, according to the current DSM, should be diagnosed only for those that are normal or above.

Steve

Interesting article Pat. The comments are really heating up!

Interesting article. That said, it seems to be directed at laymen, that is, dumbed down, and doing so will likely lead to wrong interpretations and misguided decisions. Eg, the suggestion that gluten is linked to autism might cause a parent to stop feeding oats to a child, since oats contain gluten...and myriad very healthy and vital nutrients.

The point to me is (and I know this first hand) that there is nothing worse than having something nobody knows what it is, nobody knows what caused it, and hence nobody knows what to do to cure it.

Then the biggest punch in the gut is when they pronounce that 'its psychological' or 'psychosomatic'. (that is real safe since who can prove it?)

We have several people here who have someone close to them with "Autism" and I am sure that any "THEORIES" would be welcome -

... and if giving up something like gluten might help, then I would say even 'dumb' laymen would be wise to try it - how much harm would be done (NADA) and who knows - MAYBE THERE IS AN ANSWER SOMEWHERE that might help them since nobody has been able to so far...

Bottom line is it is always comforting to know there is HOPE.

Patrician, many years ago, I worked with a client who was autistic (clinically diagnosed) and deaf. I will always remember meeting him for the first time. There was a look in his eyes that told me "I will get through to you someday, and you will communicate". He was 42 years old.

There was no magic pill. There was much agony and frustration, countless hours of thinking you were making some progress, only to realize nothing had changed, but I couldn't give up on him - and I wouldn't.

Long story short - he finally began to communicate through sign language.

All deaf - hearing impaired - have a voice. I continued to work with him - he got to a point that he was using his voice. When communicating with others, he did so with his sign language and voice simultaneously.

He now lives independently, can use the transit system, shop for his own groceries etc. He no longer needs to be confined to an institution that did nothing for him, and cost mega bucks for his care.

He was worth every ounce of energy I had. I would do it all again, given the chance.

The best reward in the end was his smile, as that was something I had never seen!

i read mark hymens book and really liked it. i'm just not sure how accurate it is. it makes total sense though

Yes Sheryl, I really sympathize with you.

I have seen several stories about common viruses and infections (like the flu and strep throat) that in rare cases have a really severe reaction in some kids - From dramatically weird behavior to near death and it took years of dragging the kids in and out of emergency rooms and to specialists where everyone said there is 'nothing we can see that would account for this' -

Finally - and in both the cases cited above it was Neurologists who finally figured it out.

My niece who was premature (3 pounds) and had a difficult first few months, but by a 'miracle' survived - turned into a violent, horrible little monster progressively getting worse as she got older -

People were thinking 'psycho' until she finally presented an all out seizure and they realized that the behavior had been "pre-epileptic" - then it was a nightmare until they could get the right combination of drugs for the seizures.

I could cite many situations where it has been very difficult to find an answer and as I said judging from my own experiences personally it is just hell when the doctors don't know what they are looking at or for.

It is often a victory only when people do not give up and just accept it when they say there is no answer - because somebody has letters after their name -- and they keep on searching until they finally find the answer.

I hope that you find your answers and most of all the help that you need.

Talk about irony - just today a friend sent me a request to give him feed back on his aspergers (niche) site -

Help With Aspergers - helpwithaspergers.com

(you note there one of the references to Autism they say 'it is psychological' - (old definition) -- guess again.

Patrician your niece sounds a little like my son - he is very violent and angry. He is only 11 but he is as tall as me and quite a strong boy so it gets scarier as he gets older.

When he was 2½ he was in hospital with a 'virus perhaps' was the answer we got. At first they thought it was meningitis because he had the symptoms - holding his head and screaming in pain, vomiting, lethargic - falling asleep and really hard to wake him.

After 24 hours he came good and was sent home, never found out what it was. I often wonder whether whatever happened that day is somehow to do with his issues now. Maybe not though, I guess we'll never know.

FYI - it is the Discovery Channel - Mystery Diagnosis where I have learned so much and saw the two episodes on the kids that had mysterious reactions to common virus and germs.

Here is their website - check out the 'Baffling Conditions' and 'Diseases A-Z'

http://health.discovery.com/tv/mystery-diagnosis/

p.s. #1 Sheryl - that was something I was going to mention - my niece - they say her epilepsy is not about her difficult birth but about how fast she grew. From 3 lbs to a tank - my (half) sister (her mother) is English and they are very tall. My niece was wearing her mother's shoe size at 7 years old.

She was kicked out of even expensive private schools and then when the seizures actually presented she got such a bad complex between being a bad girl and then being a sick girl that she refused to go to school and refused to take the seizure medication. She took 20 years off my sister's life but I know she couldn't help it.

The irony is she is super gorgeous - tall blond with olive skin and could 'hold a candle' to any super model out there. But unfortunately she is still a mess - although she is grown up now...

#2 what you describe when your son came down with that 'probably a virus' sounds almost exactly like what the initial episode * was for the kid on the Discovery channel who turned out to have a rare reaction to a simple flu virus - it went on for years but he finally outgrew it - he too was an 'Honor' student and turned out fine.

* (but his symptoms after that were different than your son - all he could do was sleep- he was confused and disoriented - couldn't remember simple things - he would have episodes and then recover only to regress after a few months or even years)

Steve, the 'virus' he had at 2½ lasted one day and possibly doesn't have anything to do with his issues now. Could possibly even have been concussion although we didn't see him hit his head, that's not to say he didn't without us noticing - these things can happen in seconds. Who knows!

A diagnosis won't change anything, I guess for me it would just allow me to give people a reason for his behaviors because at the moment he is just an out of control child and get's us lots of dirty looks from the 'older' generation when we are in public. But if it's a discipline issue then you would think all three of our kids would act like that.

I think as a parent you know when it is more than just 'bad behavior' that there is something there causing the behavior. If it is related to diet then it would be great if that could solve it, but it is really hard eliminating foods to try and find which foods could be causing the issues.

His main issues are:

* extreme anger, tantrums and violence
* quite behind for his age emotionally and socially
* ahead for his age academically
* he cannot understand that he actually does anything wrong - so no empathy or sympathy and he literally just cannot comprehend that he does anything wrong.

Anyway, I have gotten this topic way off topic so I'll stop now

We have four kids, our second, Oliver, is twelve now and has severe autism. He was diagnosed very early at age 2.
Early on we took gluten and lactose out of his diet - not because we thought that was worsening his autism, but because it was affecting his bowls. After a week or two, his bowl problems all but stopped and we also noticed his behaviour calmed - only slightly, but noticable.

Over the years, we could tell if Oliver had eaten something with gluten in as he would become hyper - often not sleeping more than an hour or two in a day. As he's got older though, the effects have reduced - we started to introduce first dairy, and then gluten back into his diet in a controlled way, and now he can eat both without any negative effects. As he's got bigger his body seems to be able to cope with it.

His autism hasn't altered but the hyperactivity and bowl problems after gluten are no longer there, and he can eat a wider range of foods, even though he largely chooses not to.

As for Mark Hyman's article - I welcome any and all research - anything that can help unravel the mystery of autism. What he says makes some sense to me.

I apologize if I offended anyone with my critique of the article. I know of people with autistic kids who've tried an array of different approaches to help their kids, including dietary approaches. It can involve spending lots of money and being preyed upon by those who profit from others' desperation. I imagine there is no harm in trying to replace gluten-containing grains with brown rice, amaranth, quinoa, etc.

I have to say that I don't exactly trust health authorities, especially when they try to tell me that mercury is harmless if injected into a baby , but I trust alternative health practitioners even less.

I also used children's puzzles! That was about 25 years ago - hard to remember everything.

Exactly. This kind of research has been going on for awhile now. A few years back it was discovered that autistics usually have a lack of Vitamin D3 and that mothers who slathered in sunscreen during pregnancy didn't have enough of the vitamin/hormone to pass on to the fetus. They were making good progress with kids getting them out in sunshine more often.

There are a few things people need to think about -- and real hard.

The first is that pharmaceutical companies control our medical system. They have a patent on the word "cure" in the US, at least - not sure about other countries. There are treatments that your doctor may not be allowed to give or even tell about. Many doctors are going to India for this very reason.
Okay - now lets take a linguistic analysis of "cure" as it relates to that patent. If "cure is relegated to mean only diseases and conditions that were killed via pharmaceutical drugs -- "NO cure" automatically takes on the meaning of "we don't have a pharmaceutical drug that will cure this condition". Unfortunately people leave the doctor's office thinking that nothing can be done. That is not the truth. Truth - you can do something, but not with drugs.

Now - a second thing to consider:
Many of our conditions today either did not exist or they effected only a very small percentage of people in the past. If you see a condition that effected only around 3% of people (number is just an example) and today it effects around 33% --- it stands to reason that the cause may be a change in our environment. There is no other logical explanation for a disease to suddenly flourish if there are no mitigating circumstances in the environment. If it wasn't there before changes in environmental factors, and it is after those changes occur.......? We need to start thinking about diseases and conditions logically instead of just shrugging and saying "oh well" when told there is "no cure".

We are exposed to more chemicals than you may realize. I just downloaded a PDF from a health organization and it is 500 pgs of chemicals that are in our environment and we are exposed to. 500 Pages. That would be sickening even if there were only one toxin on each page -- there are 8,000 chemicals, most of which we were not exposed to a hundred years ago.

We have people warding off sunshine which produces Vitamin D3 which also works as a hormone. Lack of this vitamin can cause syndromes, diseases up the ying, etc - yet people dose themselves with sunscreens, many of which have toxic chemicals, and all of which prevent you from getting necessary amounts of Vitamin D3. Our water is dosed with sodium/silica fluoride and diseases started to flourish after that started being done. We have foods that are GM and only now is the REAL research beginning to surface and continually shows the stuff to be dangerous to us. Sometimes our food is being irradiated to kill bacteria, yet that also kills many vital nutrients.

We need omega 3 fats to produce osmosis of many vital nutrients into our cells and instead line them with chemicals and fats that prevent that osmosis.

Then we are surprised when illnesses strike. And our medical systems keep us going back for "treatment" and "observation" even after they tell us there is "no cure" or "nothing we can do".

Seems to me that it's time for people to start getting back to eliminating toxins and eating natural foods, getting at least some sunshine every day that they possibly can. Live like people lived BEFORE percentages of diseases mushroomed.

Even your bedside clock radio - a bad one since it sits right next to your head usually

Thanks Pat for posting this. I looked at it closely but I have to admit I am very skeptical about the claims in that article. For a start, there is no certain way of treating mitochondiral dysfunction yet the author claims that he successfully treated an autistic child by treating mitochondrial disorder. Secondly, nobody can diagnose autism with any certainty at 22 months and that alone raises alarm bells. Third, the Journal of American Medical Association (JAMA) is not as prestigious as he claims. Besides it is only a preliminary communication which means that it was not subjected to the same peer review standards as other articles.

Dr. Mark Hyman does concede later on that his claims are not supported by the mainstream. It has been known for some time that mitochondrial dysfunction may be found in some people with autism but this could be a symptom/sign of autism rather than as a cause. The truth a lot of doctors and therapist make a lot of money by pushing claims that ultimately will not bear up to scientific scrutiny. One of these therapy is mercury detoxification that we and many other parents have tried, but lultimately did not make difference.

The most famous therapy for autism is ABA (Applied Behavioral Analysis). The orginial paper in 1984 claimed that it was able to completely cure 50% of a small number of subjects by the age of 5. But nobody else had been able to reproduce those figures and I am not aware of any follow up on those "cured" patients. The truth is that right until primary schools, most parents are still quite hopeful that their child may be "cured" and enter a normal primary school. However, most will find that the gap between their child and normal child just keeps on growing wider all the time.

Like most parents, we have spent a lot of time, effort and money on our autistic daughter Kristi. But one thing keeps on popping up after another. Therefore, we are much more sanquine about things right now.

Derek

Well my point is still not to put the kid in a box = Incurable, nothing we can do since we don't know what it is - just to give up and accept defeat. Keep trying and keep an open mind.

There may obviously be multiple causes and many different manifestations - with lots of gray areas between diagnosed 'conditions'. No box.

I can only imagine the trauma and chaos of having an uncontrollable sick child. I couldn't even deal with my son's normal naughtiness especially after he was as big as I am. Hard to intimidate with words while looking UP at somebody. LOL.

Again, there is always HOPE and someday someone, somewhere may discover the cause and even find, if not a cure, ways to manage the behaviors more effectively.

I just don't see how it can be 'psychological' - the manifested behaviors seem too classic for it to be something this broad - more likely perhaps it is some kind of brain or genetic damage or abnormality - which would not be psychological but physiological - and may really be caused by environmental (chemical, virus, etc) factors.

Anyway, everyone affected by this and other horrors in this world do have my sympathy, prayers and love always.

I'm not that familiar with autism. I've seen it, but don't know what the physiology is of the disorder. I am convinced that it's environmental though - I've seen statistics and autism was just not prevalent 70 years ago - now it's a very typical disorder.

I'm convinced it has to be an environmental exposure of some sort - and am thinking that it's got to be one of the chemicals in our food that crosses the blood/brain barrier. It's the only answer that makes any logical sense to me in view of the stats over the decades.

I can't tell people what to do with their kids - I don't know them, can't watch them, don't know enough about the disorder........but..........
I would hope that people might try elimination of chemicals that might likely be suspect in a brain disorder...and those are the ones that cross the blood/brain barrier.

Cut out fluoridated water -fast. If it doesn't help the autism, it sure won't hurt the kid not to be drinking it. If it's fluoride from a natural source (calcium/magnesium fluoride) and it's only around .04ppm - that's a perfect amount and is fine. If it's additive fluoride, cut it out completely.
See how the kid reacts.
Next - cut out anything with MSG in it (under any name it goes under). There is a little bit in plants naturally, but don't use any of the processed crap they put in food. That stuff is nasty and it crosses blood/brain and can cause all sorts of complications. See how the kid acts if you cut that out.
Next try to get rid of bad fats - use coconut oil or olive oil, butter (raw not cooked), and omega 3's. Our diets are way out of whack for oils and the wrong ones, once again, cross blood/brain barriers - and wreak havoc on the cell's abilities to absorb many nutrients, hormones, etc. That's pretty frightening when you are thinking about developing brains.

If you folks with autistic kids would try this -- there will be not one bit of damage to the child, their health will be better in many ways even if it doesn't answer the problem. See if it works though, and if there is any sign of improvement from those, I have the list of environmental chemicals and their effects - I can keep giving new chemicals and their sources to cut out until we find an answer. There has to be an answer - and it's not going to be drugs.

I'm reading books on neuro plasticity at the moment to improve my own mental skills.

Some interesting therapies based upon neuro plasticity. The research claiming brain training software doesn't work was incorrect.

But it requires a large investment of time and effort to rewire your brain.

Here is an interesting article.
Autism Diagnoses and Treatments Could Be Found in Study of Magic - ABC News

Sorry I didn't read every post here but I can talk about this from real experience.

I have said before that my granddaughter has autism and the fights with her were indescribable. My daughter finally took her off of all and I mean all dairy. She drinks soy milk because she always loved milk but it took a while to get her to switch.

She didn't talk until 4 years old and when she doesn't want to do something it's like trying to get a 300 pound gorilla to move or something.

Since Liz changed her diet about 3 years ago the change is amazing. She actually shows signs of freaking out but can control it somewhat. I am no doctor just a grandma who has seen the difference. Dairy is like giving her LSD or something.

She even begged Liz one day to please help her after her "other" gramma gave her some m&ms thinking for some stupid reason that since she had been doing so well, she had somehow out grown it. It's a neurological problem they do not outgrow but some (not all unfortunately) learn to handle.

I have not updated my blog on alexia in quite a while but if you google "alexia has autism now what" you should see my posts and videos immediately. Not going to make a cent because you look but a whole page will be about my girl..

She is the light of my life and I hope that this helps anyone who wants to understand a little more about autism

I just wanted to add that while Alexia responded to zero dairy, she still eats pasta and bread, chicken nuggets are her favorite, with no adverse side affects but I have talked to other parents who say they do have to keep their children from any type of wheat products.

You can only keep trying different diet things to see how your child responds and patience is definitely required for these awesome babies. Some talk some don't but more than a few are quite intelligent and capable of having a full life with the help of all of the family involved

Retts? Is this another in the ever growing list of new "disorders"? Call me paranoid if you want to - but seeing all these neuo-disorders just scares me. We have SO many neuro-toxins in our environment right now that even when they finally admit we've just made our world too toxic to handle I can't imagine how we'll ever get rid of it all.

If you folks want it - I have a link to a free report from some health organization (can't remember which one right now) that lists every chemical that we are exposed to, what it does, and where we are exposed to it from - water, air, food etc. I'm not sure if it tells where it comes from though (companies. etc) but maybe which industries that either use it or make it. I've been busy and only got to glance at it -- The freaking pdf is over 500 pages. There's a lot of really nasty stuff out there that nobody seems to ever hit the media with.
Anyhow - if you want the report just go to Sals Secrets Revealed and click on "literature" in the top menu - it's in the first article.

Heysal,

Your list is TOO OLD! You said "every chemical", but new ones are made ALL THE TIME!

California now has a special law, "Proposition 65, the Safe Drinking Water and Toxic Enforcement Act of 1986". And a lot of places, possibly every place has a sign that basically says "According to prop 65, we are announcing that it is unsafe to enter the premises"! On a lark, since they said they could, I asked for a more detailed explanation of this at my HOTEL! YEAH, that's right, the HOTEL, along with where I work, have this sign. The document seemed to cover everything. Could ANY building pass without the notice? Probably NOT!

According to wikipedia, Rett syndrome was first described in 1966!!! So it apparently IS a new disease. It is SO dangerous that males, having no good gene to offset the bad one, generally DIE. And keep in mind that, although they could only recently tie it down to the gene, it is a DISTINCT disease that could have EASILY been described even in the BIBLE! But it WASN'T. So maybe IT, like so much garbage, started in the 60s, on.

Who knows. Just yesterday, I watched a movie called "baby mamma". The protagonist was told she had a "t shaped uterus", etc... and was thus UNLIKELY to concieve. Since she felt her time was limited, she WANTED a child, found she couldn't get one, and that was where the movie took off. The doctor mentioned that some drugs that could cause this could have affected her because her mother took them before she was born. Well, I DO know that is a symptom of DES:

Diethylstilbestrol - Wikipedia, the free encyclopedia

I STILL remember that from ONE documentary I watched on it about 40 years ago!

Don't we have some NICE humans, and doctors?(sarc!) Isn't humanity GRAND!?(sarc)

Steve

Investigative Reporter: MMR-Autism Study Was Faked
WebMD Talks to Journalist Brian Deer About His Expose of a Study Linking Autism and the MMR Vaccine

Investigative Reporter: MMR-Autism Study Was Faked

Jan. 6, 2011 - The journal BMJ has published a report that calls a 1998 study linking the MMR vaccine and autism a fraud. That study, published in the Lancet , was the work of Andrew Wakefield, MD.


WebMD talked to journalist Brian Deer, whose investigative report says that Wakefield deliberately faked his study.


Why follow up after all this time?

We had access to a 6 million-word transcript of the General Medical Council, which laid out all these children’s medical [records] in extraordinary detail and in exceptional forensic circumstances. It enabled us to do a reliable case-by-case comparison of what the true position was with regards to the histories and diagnosis of these children and what Wakefield had reported in the Lancet. Given that, we had to do it.


How surprised were you by what you found?

Having spent so long on this and having come to understand the nature of Dr. Wakefield, I wasn’t hugely surprised. The revelations that have tumbled out over a period of around seven years have all pointed in the same direction, so I wasn’t ultimately that surprised at all. I think I was surprised that in not one case of these 12 children that were involved in this study way back in 1998, were the medical records capable of reconciliation with the research paper, which claimed to have been based on those records.


Did you have any concerns about bringing the issue back into the public eye for people to think ‘there’s no smoke without fire’ and reawaken any parents’ concerns?

I’m not concerned with second-guessing public opinion or generating policy decisions. My concern is to bring forward what we’ve established to be the truth and to put the record straight.


Will the analysis of the Wakefield affair mean that medical research will be held to a far higher standard?

I hope so. I personally believe that the real lesson of all this is that if he could do this, what else could be going on in all kinds of areas of science. In the U.K. we’ve had a GMC hearing, a doctors’ regulatory hearing, which has probably [cost] about 6 million pounds. There was a libel action which Wakefield embarked upon before abandoning it, which cost doctors, I think, about another 1.2 million pounds through the Medical Protection Society. We’ve had enormous effort by me, by the Sunday Times, by Channel 4, the BMJ, and all this has gone into cracking just one case of 12 patients. You think if it involved that amount of effort and resources, how on earth would you ever crack a piece of research that was about something less “hot button.”


There needs to be some kind of regulatory procedure whereby doctors and scientists can expect to get a knock on their door if their data is thought to be questionable.


Do you think doctors don’t always want to criticize other doctors?

Some doctors have asked: “Who is this journalist to come along and rock the boat with these kinds of accusations, it’s all the fault of the media, it’s all journalists’ fault that this scare took off.” I’ve shown that it wasn’t journalists’ fault. It was a flaw within medicine itself. That flaw needs to be addressed and understood.


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