Living with Autism: A Parent's Perspective

I have been having discussions the last few days on a blog regarding Vaccines and the question of an Autism link.

Now of course I was fairly constantly defending against hard-core anti link posters however there was one point I was consistently trying to make and it keeps getting missed.(or ignored)

To eliminate (or prove) a link between autism and vaccines there needs to be a comprehensive study. This study also could be co-linked with a study looking to find links to genetic causes of autism.

To accomplish both in a linked study would require:

• 1000 children to be vaccinate on regular schedule
• 1000 children to be unvaccinated
• testing to be done every six months as well as a week before and after each vaccination
• testing at vaccination period to include video monitoring and complete reaction check
• general testing as well as vaccination period to include
• DNA Profile (compared to personal profiles as well as compared for similarities to all other testers)
• MRI
• CT scan
• Complete blood work up
• additional testing could be added to search for additional links
• different classifications of autism could potentially each be looked at individually as well as part of the overall group picture
• testing into second and third generation unvaccinated would perhaps be helpful to allow possibility of build-up in bodies transferred through generations

As a parent of an autistic child what is of utmost importance to me is not that the results confirm my beliefs but that the underlying cause of autism be found. Once a cause is found then it is possible to work towards curing or at least removing/reducing the cause of autism to allow all children the same opportunities as all other children

Now regarding the Amish stories (do/don’t vaccinate, have/haven’t got autism) I am basically seeing two stories one on each side and neither one is very long on data both relating mostly to basic observations so I will not pass judgement either way at this time (though neither in my mind can be said to be successfully refuted)

While some people question the ethics of running a double blind test with and in basics the ethics of not vaccinating I also have to add there is also what about the question of ethics in not doing these tests and potentially consigning an increasing number of children to diseases we could avoid with a reformulation of these vaccines once a full proper test was conducted and the results properly examined

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the following is a direct copy of an article printed in on the website  http://www.vaccinationcouncil.org on June 2 2009

the other date is the date the the reporter originally filed the article.

Joseph Mercola, DO

May 4, 2005

Autism is a difficult disorder to miss, as it is characterized by noticeably abnormal or impaired development in social interaction and communication and a markedly restricted array of activities and interests. And while scientific consensus claims autism has been around for millennia at generally the same prevalence, that prevalence is now considered to be one in every 166 children born in the United States.

Therefore, with this devastating statistic in mind, one reporter set out to analyze the autism rates among Amish communities. Why? Because perhaps searching for autistic Amish children would reveal clues to the cause of autism … and it did.

The Clues Come Together

Since they have been cut off for hundreds of years from American culture and scientific progress, the Amish may have had less exposure to some new factor triggering autism in the rest of population. The likely culprit: vaccines.

Traveling to the heart of Pennsylvania Dutch country in search of autistic Amish children, the reporter, based on national statistics, should have found as many as 200 children with autism in the community — instead, he found only three, the oldest age 9 or 10:

• The first autistic Amish child was a girl who had been brought over from China, adopted by one family only to be given up after becoming overwhelmed by her autism, and then re-adopted by an Amish Mennonite family. (China, India and Indonesia are among countries moving fast to mass-vaccination programs.)
• The second autistic Amish child definitely had received a vaccination and developed autism shortly thereafter.
• The reporter was unable to determine the vaccination status of the third child.

Dangerous Effects of Thimerosal

In some vaccines, they use a mercury-based preservative called thimerosal that keeps multiple-dose vials from becoming contaminated by repeated needle sticks. After health officials became concerned about the amount of mercury infants and children were receiving through thimerosal-tainted vaccines, the toxin was phased out of U.S. vaccines starting in 1999.

However, due to mislabelling and other problems, its presence is still being felt, and more and more children are suffering because of it.

Does anyone out there really need more evidence than this?

Admittedly, this was not a placebo-controlled scientific trial but an evidence-based fact analysis that, in my mind, provides an irrefutable link to a lifestyle and, most likely, mercury-containing vaccine connection to autism.

Folks, you don’t have to be a medical doctor, hold advanced epidemiology degrees or teach molecular genetics to figure this one out. You don’t even need a degree in rocket science. How much more obvious could it be?

The link between autism and vaccines is certainly not a new idea. In fact, suggestions of this link have been in the national news for at least six years now. Just last year a study, that reviewed data from the Centers for Disease Control and Prevention’s (CDC) Vaccine Data Link, concluded that children who receive thimerosal-containing vaccinations are 27 times more likely to develop autism than children who do not.

That’s a 2,700 percent increase. The numbers just don’t lie.

Considering how important this issue is for nearly everyone you know, it might be a good one to forward to your friends and relatives. You can easily do this by using the E-mail to a friend button in the upper right hand section of this page, just under the search box. You can make a larger impact if you write them a personal message in the e-mail as to why they should seriously consider the advice — and why they may want to subscribe to the newsletter.

This most recent investigation simply provides the proverbial icing on the cake. There aren’t too many other places, if any, in America where you can find large groups of children who haven’t been vaccinated.

The reporter found three children with autism. One child was adopted and previously vaccinated, another was one of the few Amish children who were vaccinated, and the third had an unclear vaccine history. That leaves, at most, potentially one child out of an expected 200 (from national statistics) with autism. The odds of this being mere coincidence are slim to none.

At Least Change the Rules Concerning the Hepatitis B Vaccine

Because of their religious beliefs, the Amish community chooses not to give their children any vaccines. Understandably, many of you may not choose such a radical approach. However, if you were to focus on just one vaccine, I would encourage you to look at the issues surrounding the hepatitis B vaccine.

The multi-dose version of this vaccine, which is typically administered to newborns before they leave the hospital, still contains thimerosal. This is reprehensible, irresponsible negligence of the highest magnitude. The immature central nervous systems of these helpless newborns are particularly susceptible to toxic insults, and thimerosal, the mercury-containing preservative used in these vaccines, is one of the worst.

It would be much easier to understand if the hepatitis B vaccine had some value, but most natural health experts who study this are convinced that this is nearly always an absolutely unnecessary vaccine.

There are only about 5,000 people a year who develop the most serious consequence of hepatitis B infection, liver cancer. That means we are immunizing tens of millions of infants and causing brain injury that has caused an epidemic of autism to protect liver cancer in 5,000 adults. And, many of these adults have serious social problems like IV drug abuse, alcoholism and poor nutrition that seriously increases their risk for this disease.

Action is presently being taken in the US to attempt to have a new designation put in place on an alert system.

Unlike an Amber alert which is used in kidnapping cases where it is believed that the child is in imminent danger, Mason’s Alert is aimed at having public looking for a child who has wandered away.

The issue with autistics wandering away is extreme. The reason is that 92% of autism cases are believed to be prone to wandering and the major issue being that Autistics generally do not feel the same dangers that normal children would feel.

In our case, our child has wandered in the past, our child unlocked the door and walked out in bare feet playing a handheld video game. He wandered down a gravel driveway, across a street down three blocks to a major street and was picked up by a passer-by wandering down the yellow line. The passer-by called the police just as my wife was calling the police and we picked him up a few minutes later. However at 6 years old non verbal and without fear we spent a frantic 15 minutes searching the house and neighbourhood before calling the police and yes we were freaking. But we got lucky. In many cases these children are not always so lucky. Many autistics are attracted to water and most show very little fear. A large number of autistic children have been pulled from neighbouring lakes and swimming pools and in some cases police were slow to respond because the child had wandered and was considered likely to return on their own. With autistics this is never a guarantee and not a chance we can take.

Canada also needs to look into a Mason’s alert system that would quickly and instantly broadcast details of a wandering autistic child. We need to protect them because so often many of them cannot protect themselves.

I am going to place a link here to Mason’s Alert but please follow this link with caution what you will see there will break your heart as it is not filled with feel good stories but a list of those who have wandered away with drastic consequences. You will quickly understand why a system like this is needed for those who do not fall under the Amber Alert program criteria

What you see here may surprise you. The links are there and some medical people in high places can see it.

Now under no circumstances do I suggest that the standard regime vaccines should not be given to your child.

Our youngest has not had hers yet but we fully intend on her getting her full regime of standard vaccinations.

However here is the key issue. This time when our daughter is vaccinated we will be taking a fully intensive video registry of her behaviours over a month or two period before, during and a month or two after the vaccinations.

While I am not absolutely positive that our daughter will develop autism I am also not going to take the chance. I am going to document her history and behaviours and if there is an issue that develops we are going to have the video record.

Also as point of fact to back away from having it buried in the 18th month debate we will be going later then that for the MMR vaccine to eliminate possible time confusions.

I do believe that Vaccines do trigger autism. Whether the underlying issue is a mitochondrial issue or is something else entirely there is a definitive trigger. While we need to find the underlying issue we also need to find the trigger and until we do it is my personal recommendation that every parent who can do a seriously intensive video record of your child’s behaviour up to during and after vaccination because if we are going to get the message out there we must do it through solid documented proof.

This is the first step to document and prove that the timeline does parallel the vaccination schedule.

Part two will be getting Government to actually fund proper testing to find the real trigger and the real cause regardless of the pharmaceutical lobby’s self centered profit driven interest in keeping this information buried in the darkest recesses of the most hidden place they can find.

Well while I am a strong supporter of Autism having an environmental trigger, I do accept it is likely that there must be something to differentiate autistics from non autistics or such a trigger is unlikely to work.

So it is with some hope i saw there was new research that indicated that a missing chromosome was a clear indicator of autism or schizophrenia (well ok I was sceptical and concerned to see autism lumped with schizophrenia but we will see)

Then I started to look at the total numbers

over a total of two different databases

23271 people in a database of intellectual disabilities and autism and schizophrenia

total 24 of those people are missing chromosome 17
0.00103% of those on that database or assuming at a stretch that all were autistic (they weren’t) then 0.00103% of those with autism were missing chromosome 17

47595 healthy people were tested and none were missing chromosome 17

however of those 24 confirmed missing chromosome 17

8 were confirmed autism

4 confirmed schizophrenia

9 completely untracked

leaving 3 that were other cognitive delays also missing chromosome 17

I used the full 24 being autistic to give the researchers the best possible conclusion and still came up with 1 in 1000 autistics missing chromosome 17

so while yes it is highly likely that if someone is missing chromosome 17 they will be have either autism or schizophrenia or some other developmental delay there is to low a number within the autism grouping to consider it any form of viable measure of whether or not someone will get autism.

In actual fact having that chromosome missing says yes you will likely be in this grouping

but actually having the chromosome present does by no means indicate that you will not

I originally went to write this article looking at the “case” against Dr. Wakefield and the amusement I feel when the haters come out shouting down his theory.

Then I went looking at an interesting  article and realized that this issue was actually far broader then just the reaction to Dr. Wakefield and so I decided to include a second doctor,  Dr. De Soto.

What I have found when people attack these doctors work is that they don’t actually attack the important parts of the work. What they do is attack small issues within the work, or in the case of Dr. Wakefield certain collection methods that were of questionable ethics and use these details to call the entire study suspect when in fact they did nothing to detract from the main body of work.

Using Wakefield as the prime example, several things were done to discredit him. First they attacked the fact that he collected blood at a child’s party without the parents consent. Then they attacked the fact that he was not qualified to do this type of study. Then they attacked the size of his “study group”

The problem with these attacks are that they do not actually address his work. The closest they come is the fact that the size of his study group is small enough to potentially skew data. ok that is fact but the simple truth is that the results say that we now have to look at this study (replicate it better with a standard group size and look for potential truths)

De Soto’s issue arose from the fact that she found error’s in a piece of work that indicated there was no correlation between mercury and autism. She as base fact says that it is something that needs to be studied based on evidence but says there is not sufficient evidence to either prove or disprove it. The attacks she suffers are aimed at her personal life, her qualifications and even completely ignoring what she wrote and saying something different entirely. And all attacks unproven but being used as a method to damage her credibility (even though top journals listed her refute of the original study as extremely important and accurate.)

What is basically proven by these attacks are the simple fact that there is little base room to attack the actual body of work presented by these individuals or others looking into mercury/autism links and so every attack is done on the periphery in an attempt to discredit them to such a point that their work is ignored.

What this proves to me is that we now need to do a very large very comprehensive study across numerous generations (3 to 4 minimum I suspect) to look at the effects of environmental issues of all sorts on autism and also looking at the possibility that generations of build up could therefore take generations to reduce.

These tests need to be done to systematically prove or disprove the environmental factors aspect of the onset of autism for a definitive response so that we can move on to fixing the problem and getting decent therapies for those who have not had a chance at these and other potential new therapies as of yet.

There is a story barely reported of a UK man (Gary McKinnon) who is being charged in the US with computer crimes due to hacking into the NASA and DOD computer systems.

Gary McKinnon is a 39 yr. old man with Asperger’s  who is facing 60 years in jail because he wanted to know for sure if the US had found aliens and were hiding the fact. While it is interesting that he does not deny having found anything of the sort, this would actually come as no surprise to the large portion of the population anyway.

What seems to be at issue is that Mr. McKinnon got in and out of the computers pretty much at will and searched through large volumes of “restricted material” including looking for answers to questions surrounding the 9-11 attacks and the fact that he is quite forthright in his statements that it appears that the US had fully functioning anti-gravity devices (something that would negate oil as a major energy source).

Now in almost all past hack attacks at the pentagon, NASA and DOD, the perpetrators were almost always offered a major computer contract and all concepts that there may have been any breaches in security were buried. Now this leads to a few questions. Did Mr. McKinnon get into details and areas that previous hackers were not able to reach? Is his age and ASD affecting the Government’s urge to overkill the issue rather then hire him? Is the fact that Mr. McKinnon believes that some of these details belong in the public domain a major factor in attempting to bury his findings?

ASD or in this case the branch of ASD that includes Asperger’s includes aspects that makes even charging him with these crimes rather ludicrous let alone the fact that they are attempting to attach as much as 60 yrs. or the remainder of his natural life in prison.

Now lets look at this from a realistic standpoint they are looking at putting an autistic person in prison for the rest of his natural life for HACKING this is so stupid as to be laughable, except this is the same country that less then a year ago executed an autistic person so we already know that they have no understanding of autism and care only for making themselves look good at the expense of anyone who is different.

While I have had high hopes for Obama, I am rather quickly losing any hope that he is anything other then just as far an extreme right winger as any Republican to hold office. This case could and should have been terminated by his office soon after he was elected.

I would call specifically on Obama and Cameron to terminate this assault on the Autism Spectrum and if they refuse i Call on Prime Minister Harper to offer Mr. McKinnon political asylum and on Mr. Ban Ki Moon to suggest sanctions against these two countries for the atrocity they are attempting to perpetuate.

Repeatedly for years now we have been saying: When are we going to research environmental issues in relation to possible causes of Autism?

Now we here that a conference was set up and those researchers involved with any details on autism and the environment were not invited. Instead those invited were not even autism researchers at all but were involved in researching other diseases.

This is leading me to a central question. Are we as parents and stakeholders in our children’s health and welfare going to have to set up the research studies and trials ourselves.

This is not something that is to be taken lightly as any studies we do or commission will be guaranteed to be second guessed however with the right ethical researchers and a completely above board ethical team we could do the research if we could pull together the funds for the research ourselves.

This is something that we are going to have to look at sooner or later and given the history of those presently commissioning the various research paths we might as well prepare to do this sooner because history is showing us that we are the only ones who actually care about this form of research

In my personal opinion i believe that the research that we need to look at involves a direct question of is there any environmental trigger to autism and if so what is it? and research into the various “unproven treatments” to provide parents with factual information about the validity and successes or lack of successes that each of these treatments provide

Apparently in the states there exists an interesting myth that celebrity parents and bloggers denouncing vaccinations are hurting the vaccination rates amongst the wealthier parents.

This myth is even being spread as fact by the NCQA (National Committee for Quality Assurance) and TIME magazine.

What really makes me laugh about all this is the target audience suggested by these groups. They are suggesting that while wealthier individuals are decreasing the vaccination rates amongst their children those in the poorer groups are actually increasing their vaccination rates.

Now what amuses me is this when celebrity gossip magazines create articles they specifically (and successfully)target a group of individuals that are likely to be highly susceptible to celebrity influence. That target group is not the wealthiest individuals but instead the poorer, less educated masses.

For the NCQA and TIME to suggest that vaccination rates amongst wealthier individuals is declining simply because of celebrity parents and celebrity bloggers is missing the message that these lower vaccination rates are sending.

Those in the wealthier groups across both Canada and the US are largely likely to be far higher educated then those amongst the poorer groups and so unsubstantiated theories are far less likely to be quickly swallowed up by the wealthier groups then they would by the poorer groups. The simple fact that vaccination rates are decreasing amongst the wealthier groups is indicative of the fact that perhaps some of these parents are looking a lot closer at the relationships between the various vaccinations and autism as well as perhaps looking at the success rate of vaccinations (lower then what the health departments would like people to believe)

The likely reason why the vaccination rate is so high amongst those in the poorer groups is that those who are poorer and usually less educated are far more susceptible to the bullying nature of the health departments and pharmaceutical giants who are swearing blind it is all perfectly safe and extremely effective and that you are a horrible parent if you don’t vaccinate. This type of approach works far less effectively on wealthier parents as the threat of child services being brought in if you don’t vaccinate and other strong arm tactics are far less successful due to the abilities of these families to hire successful lawyers to deal with this type of abuse.

I would go as far as to suggest that the likely reason why wealthier parents are reducing the vaccination rates are two-fold. One they are realizing that coincidence does not happen at the rate of 1% and two that the success rate of vaccinations are lower then what they are being told and they are starting to question why they should be spending their money on something that they are starting to consider less effective then promised and with more risk then suggested.

While I personally vaccinate on most major illnesses, I am way less likely to waste my time vaccinate on things that are not that effective and frivolous to the extreme (flu shots and the like)

I do understand the elderly and those in serious at risk categories getting these shots but for those of normally healthy lifestyles I believe it is both a waste of time and extremely ineffective.

In my most recent post I was discussing different styles of autism and how the actions of one affects the other.

I guess while i have always realized that there were two sides to the autism corner, I never realized just how distinct they were till yesterday.

During the lead up to and through the “Shut Down for Autism” there was also a second group pushing to “Speak Up for Autism” On the one hand you were learning what it was like to be “disconnected” like those with autism and on the other you were “Speaking up” for those who could not speak up for themselves.

While watching twitter in the lead in to the Shut Down it was obvious to see who was on what side, but it was also obvious as to why each was choosing that side. Those who connected most with (or were themselves) high functioning autistics chose the Shut down. Those that were parents of low functioning autistics generally took the Speak up role.

The energies in both of these groups is incredible but many times it works at cross purposes. The issue being that those who are high functioning are saying look at me I can do almost everything you can do and sometimes I can even do it better. The low functioning group is saying look at my child. I will be happy if he can simply learn to show some emotions but I will be ecstatic if he can say “I love you” and kiss me good night.

While I understand and agree with those who are high functioning wanting acceptance as they are, I also see the need to help remove the causes of Autism from the world because those who are on the low functioning end are increasing in numbers drastically and daily and we as a world will not be able to sustain their care if we do not start to work to eradicate the overall causes of this mental illness or disease.

We as a combined group must work to get both messages out. And we must work to show that they are not a contradiction in terms. Autism is such a large spectrum with so many different types of autism and we must learn that all those diagnosed with autism have autism but each of those diagnosed with autism have unique needs to that person as an individual and we must work to make sure that each of those needs are met at least until we have the ability to cure the disease

The major issue with having an autism diagnosis is that there is a belief amongst many that this classification pigeon holes the individual into a little tiny niche where now all is understood. Wrong

The present classification for Autism is so broad that an Autism diagnosis can actually limit your potential because most people can no longer point to any single issue that exemplifies autism.

Autistic Individuals are now either high functioning or low functioning, they are either socially adept or they are not etc. but even this is not realistically the case. Amongst autistic individuals instead of taking a string and saying you are here on the scale you realistically take a cube and point to a single space inside that cube and say this is where you exist on the scale. What it means is that instead of a single point of reference there is many including behavioural, social, verbal, intelligence and even more.

Most people want to pigeon hole autistics similar into a single type and because there are a few high functioning individuals who have achieved good positions they are considered to be the “normal” amongst autistics (the belief being that all autistics therefore can achieve these positions or functionalities) when the reality is these are the exceptions (the rare few who are impact slightly by their autism but still able to hold a solid decent paying position and function fairly close to human normal to the human perception).

The reality is that the vast majority of autistic individuals will be at best able to function with assisted care at best and more likely will live with their parents till the parents die of old age, simply because they could never function properly on their own. What is to become of these autistic individuals when their parent dies? Most people never think that far as to realize that there is absolutely no programs in place to handle these individuals when the time comes. And more then that most people do not realize that they can not simply be plugged into a siblings life and care because the requirements for their care is likely beyond the capabilities of those siblings to adjust to.

Remember most parents of autistic children have made adjustments to their lives since their children were in their infancy. There are programs to involve them in while they are still pre school and the school system has programs till they graduate (depending on your jurisdiction) and many parents make extreme sacrifices in their careers for the rest of their lives to be able to care for their children, and to ask a sibling to take on these sacrifices is extremely difficult because their lives are not adjusted in that direction already.

Add to this that depending on their place in the spectrum there is likely to be some level of behavioural issues including violence and you have a situation where it is likely that when reaching middle age an autistic individual will have little options in places to go and like many others with other mental deficiencies in today’s society they are likely to end up on the street or in trouble with the law simply because there are no options in place and no planning in place to help them adjust to life past the point their parents can care for them.

While i would never trade my son for a “normal” child as i find him an absolute joy at the same time i feel it is incumbent on me to extend my life to the longest possible simply because i fear for what life will hold for him once I have gone.

An autistic child can be at the same time the greatest joy and the greatest worry in any individual parents life.