Michigan Becomes 30th State to Embrace Autism Mandates

Later in April, the 3 bills passed by the Michigan legislature will go to Gov. Rick Snyder for signature. It is expected that he will sign, being a strong advocate for helping Michigan families struggling with the expensive costs of helping children with autism.

As a former Michigan resident I can attest to the lack of BCBAs. We were fortunate to have lived in an area of the state that had choices and our family was able to secure a good one. It will be many years before Michigan is prepared to serve the needs of the 15,000 or so autistic children who will benefit from this mandate. But, passage of the bills is a great start to a long road ahead.

We, personally, are on the fence in regard to government-imposed mandates. Many of the states have passed legislation, but the logistical efforts required to properly execute the program may prove little help top those states autistic population (in lieu of pointing fingers specifically, I’ll just leave it that not all state mandates are equal). As parents to autistic children who have paid tens of thousands out of pocket for the services that will now be subsidized by insurance companies, I can appreciate the effort. However, there is a side that must ask the question: Is it right and fair for the government to require an insurance organization to cover a disorder that may perhaps cost more than premiums can offset and still generate profit? As a supporter of less governmental interference and letting free enterprise work its magic in the marketplace, there is a side that questions if it is indeed the right thing to require insurance companies to accept this burden. The schools point and say it is a healthcare related issue. The insurance companies point and say it is an educational disorder. Either way, someone is going to pay somewhere in the system. Ultimately, and I hate to be the bearer of bad news, but the ones ultimately responsible for their autistic child’s care and development is the parents. Parents should use any and all legal means within the confines of the system (and maybe perhaps out of the system sometimes, lol) in order to secure the best care possible for their child. And that many times costs money, a complete life change, an expensive personal education and sometimes painful periods in life.

I am eager to hear what you think about mandates, insurance coverage for autism and the parent’s role in the responsibility of leading the education and development of their child?

In advocacy,

Mike

Information Overload – More Information Does Not Mean More Informed!

I came across a neat article about how there is too much information on the Internet for parents to digest and because of this it creates increased worry and anxiety. You can link to and read the article here.

I couldn’t agree more. Parents, especially new ones, are very susceptible to the open conduit of information called the Internet. The problem lies in the fact that the Internet is still like the wild, wild west of old. There aren’t many laws governing content and any fool with an Internet connection can throw up useless, bad and even dangerous information about parenting (don’t get any strange ideas about this author as you read that, lol). My advice is to be very cautious when surfing the new for information about topics like parenting, marriage or raising and caring for children with autism. Be very leery and check your facts before acting on any advice!

As I launched this little blog project to try to inject encouragement and support to those within the parenting community who are raising autistic children, I have taken on several other tasks behind the scenes to make myself that much helpful in the months and years ahead. I am painfully and slowing screening the blogs, websites and organization devoted to autism support in some way to find the ones that I feel provide some sort of relevant and credible value to anyone who reads this blog. I do not get paid to endorse any book or product and have no intention of doing so as my readership grows (it is neat to see the growth since launch in January of this year). I have hundreds of website addresses that I am still combing through. If you see a link on the right side of the page in my blogroll it is only because I have screened it and believe that a good majority of its content is of very relevant value for you to check out yourself. As I weed through these websites I find that there is AN ABUNDANCE OF INCORRECT AND VERY DAMAGING advice and points of view out there and is free and abundant in nature. The problem with opinions is that many times they are like people’s backsides – everyone has one and most of them stink! I say be cautious what your reading and who you’re taking advice from as they may be crazy!

More information about parenting does not mean you are a well-informed parent. I am always open for new ideas, but I base everything off values and check the source before I believe it to be gospel. You should too.

In advocacy,

Mike

What Really DOES Cause Autism? We Dunno?!

I remember after the initial stages of shock and denial once we learned our firstborn was autistic, I remember asking the questions, “How did this happen?” This is still the question that EVERYONE in the research, medical and autism awareness community is asking! No one knows for sure exactly what causes autism yet. There is much research and evidence that needs to be discovered to build momentum in one direction or another. The prevailing theories are that vaccines cause autism, genetic or biological markers cause autism, environmental factors cause autism, or perhaps a combination of any or all of the above causes autism.

Autism does not run in our family to the best of I am my wife’s research. We have a few family members that may perhaps be ever so slightly on the autism spectrum, but they have not been diagnosed and so that speculation is not definitive. When our first was born we provided him a vaccination schedule that was recommended by our pediatrician at the time. After we discovered his autism, we made it a point to be a little more cautious with our second, but he too received vaccinations and developed autism just under the age of 1 (when he was tracking down a fairly normal developmental path until then). With our third boy we have shifted to a alternative vaccination schedule that will provide him the vaccinations that we know are important to him, but they will be provided when he is older. With two autistic boys and one that currently is only showing developmental delays, we believe that there MAY be a possibility that a vaccination could be a catalyst to trigger any dormant genes that may be susceptible to producing autism. We wish we had the answer like many parents too. Parents today have very difficult decisions to make when it comes to vaccination of their child because there currently is no definitive answer on what causes autism. For others, the chance of acquiring the diseases or sickness that vaccinations prevent outweighs the potential threat of developing autism. There is no easy answer. Military parents have difficult decisions to make as well when they have a child with autism and learn they are going to have a second. “Do I run the risk with #2? or Do I throw caution to the wind and vaccinate anyway?” Especially in the limited beneficial resources such as military subsidized child care at military child care facilities. Trying to get your child into those without a standardized vaccination schedule is virtually impossible! So, it forces service members who are usually on tight budgets as it is to seek alternative child care elsewhere, or forces one parent to stay at home as in most cases.

Our belief at this time until provided proven, bona-fide evidence in one direction or another is this: We believe, based on our own digestions of the prevailing research of the day from all sources, that autism is most likely caused by having underlying genetic coding that is triggered by an environmental catalyst (of some kind, but NOT NECESSARILY vaccines).

A good, basic primer for your own investigation has been copied and pasted below for the start of your own personal research. Look into it yourself, look at all sides and arguments and come up with your own current understanding and belief until science or something Providential proves otherwise.

The information below comes from the National Autism Association and to link to this directly on their website you can click here:

WHAT CAUSES AUTISM?

You will hear many theories about what causes autism. To date, no one has found the exact cause of autism.

In the early 1950′s-1970′s it was thought that the mothers of children with autism were neglecting and not loving their children which in turn caused them to regress into a world of their own. These mothers were labeled “Refrigerator Mothers.” Thanks to Dr. Bernard Rimland, we’ve come a long way since then.

It’s important to do your own research into the various causes that are being investigated. We believe that families should have access to all information including environmental insults, vaccines, genetics, etc.

VACCINES

THIMEROSAL

Thimerosal is an inorganic mercury compound that is metabolized to ethylmercury and thiosalicylate and has been present since the 1930s as a preservative in some vaccines and pharmaceutical products to prevent bacterial and fungal contamination.

THE FACTS:

1) Mercury is hazardous to humans. The use of a toxic poison as a preservative is undesirable, unnecessary and should be eliminated entirely.

2) For decades, ethylmercury was used extensively in medical products ranging from vaccines to topical ointments as preservative and an anti-bacteriological agent.

3) Manufacturers of vaccines and thimerosal, (an ethylmercury compound used in vaccines), have never conducted adequate testing on the safety of thimerosal. The FDA has never required manufacturers to conduct adequate safety testing on thimerosal and ethylmercury compounds. Current evidence suggests thimerosal is neither “safe nor effective” when used as a preservative in vaccines.

4) There are over 1500 studies and papers documenting the hypoallergenicity and toxicity of thimerosal (ethylmercury) have existed for decades.

5) The United States is in the midst of a tragic epidemic of autism. An analysis of the US Department of Education data from 1992-1993 in comparison to 2000-2001 indicates that there has been an average increase of 644% among all US children. In addition, 13 states have reported an almost infinite or infinite increase in autism from 1992-1993 in comparison to 2000-2001. A review of children in US schools indicates that approximately 1 in 9 children in the US is currently disabled by the US Department of Education Statistics (see attachment). Recent studies in the Journal of the American Medical Association and Pediatrics have confirmed the autism epidemic is real and not due to changes in diagnosis, populational changes nor is it explained by other factors.

6) At the same time that the incidence of autism was growing, the number of childhood vaccines containing thimerosal was growing, increasing the amount of ethylmercury to which infants were exposed threefold.

7) A growing number of scientists and researchers believe that a relationship between the increase in neurodevelopmental disorders of autism, attention deficit hyperactive disorder, and speech or language delay, and the increased use of thimerosal in vaccines is plausible and deserves more scrutiny. In 2001, the Institute of Medicine determined that such a relationship is biologically plausible, but that not enough evidence exists to support or reject this hypothesis. Recent studies have confirmed the association between the use of thimerosal and autism has moved from “biologically plausible” to a “biological certainty” (Boyd Haley). Recent work by Dr. Mark Geier and David Geier in the Journal of American Physicians and Surgeons and Experimental Biology and Medicine have shown strong epidemiological evidence for a causal relationship between thimerosal and neurodevelopmental disorders in children.

8 ) The FDA acted too slowly to remove ethylmercury from over-the-counter products like topical ointments and skin creams. Although an advisory committee determined that ethylmercury was unsafe in these products in 1980, a rule requiring its removal was not finalized until 1998.

9) The FDA and the CDC failed in their duty to be vigilant as new vaccines containing thimerosal were approved and added to the immunization schedule. When the Hepatitis B and Haemophilus Influenzae Type b vaccines were added to the recommended schedule of childhood immunizations, the cumulative amount of ethylmercury to which children were exposed nearly tripled.

10) The amount of ethylmercury to which children were exposed through vaccines prior to the 1999 announcement exceeded two safety thresholds established by the Federal Government for a closely related substance – methylmercury. While the Federal Government has established no safety threshold for ethylmercury, experts agree that the methylmercury guidelines are a good substitute. Federal health officials have conceded that the amount of thimerosal in vaccines exceeded the EPA threshold of 0.1 micrograms per kilogram of bodyweight. In fact, the amount of mercury in one dose of DTaP or Hepatitis B vaccines (25 micrograms each) exceeded this threshold many times over. Federal health officials have not conceded that this amount of thimerosal in vaccines exceeded the FDA’s more relaxed threshold of 0.4 micrograms per kilogram of body weight. In most cases, however, it clearly did. As evidence of the growing concern of the adverse effects of mercury, the FDA has recently changed its permissible dose of oral methylmercury from 0.4 microgram to 0.1 micrograms per kilogram of body weight per day.

11) The actions taken by the HHS to remove thimerosal from vaccines in 1999 were not sufficiently aggressive. As a result, thimerosal remained in some vaccines for an additional two years. Thimerosal remains in several vaccines and with the addition of the influenza vaccine now being recommended for infants, children are exposed to more thimerosal today than ever before.

12) The CDC’s failure to state a preference for thimerosal-free vaccines in 2000 and again in 2001 was an abdication of their responsibility. As a result, many children received vaccines containing thimerosal when thimerosal-free alternatives were available.

13) Thimerosal should be removed from all of these vaccines. No amount of mercury is appropriate in any childhood vaccine.

14) The CDC in general and the National Immunization Program in particular are conflicted in their duties to monitor the safety of vaccines, while also charged with the responsibility of purchasing vaccines for resale as well as promoting increased immunization rates.

15) There is inadequate research regarding ethylmercury neurotoxicity and nephrotoxicity.

16) There is inadequate research regarding the relationship between autism and the use of mercury-containing vaccines.

17) To date, studies conducted or funded by the CDC that purportedly dispute any correlation between autism and vaccine injury have been of poor design, under-powered, and fatally flawed. The CDC’s rush to support and promote such research is reflective of a philosophical conflict in looking fairly at emerging theories and clinical data related to adverse reactions from vaccinations

AUTISM AND GENETICS:

There are many in the scientific community who believe that there is a strong genetic component or pre-disposition to autism spectrum disorders.

It’s important to note that in the past 10 years of looking for the “autism gene,” none has been found which leads many researchers to believe that something had to TRIGGER the gene to turn on and cause autism.

According to officials at the National Institutes of Health, while there is most likely a genetic predisposition, there must also be an environmental component to autism. The rapid rise in the rate of autism over the last 15 years cannot be attributed solely to genetics.

Autism is no longer considered a heritable, genetic disorder. It is an environmentally triggered, therefore preventable and treatable disease. Environmental research holds the key to finding the cause and developing effective treatments for those affected.

I Wonder As I Wander…

Or as the song went from my days in high school choir! But, with my middle 5-year old auttie, wandering, or ‘eloping’ is something we guard against regularly. As this recent article indicates, half of the survey respondents said that their autistic child was prone to wandering. Mine would certainly be part of the ones who like to escape now and again.

Our little Houdini, as we affectionately call, has required us to call the police and MPs on multiple occasions when we found he had squeezed through the barely open gate of our backyard fence, or that the lock we had installed to keep him from escaping was no match for our clever and sneaky little Houdini! Yes, there was the one time he took off in the winter with barely no clothes on and only socks on his feet to be rounded up by a neighbor who saw him skipping across a mildly snowy back field in our neighborhood. Then there was the time that he opened up the front window last summer a total of about 8 inches, pushed the screen out and squeezed stealthily out the front window only to be found in the same field skipping away through the picker bushes in his bare feet.

Now, we keep chain locks or other fancy and expensive gizmos on the doors to keep him from escaping. We make sure that the gates in the fenced-in backyard are secured with locks so he can’t even think about squeezing out! We flyer the neighborhood with his picture and to warn our neighbors about our son’s autism, and we label all of his shoes with an ID bracelet of sorts that his our contact information on it in case he is found alone.

When I return, usually out of breath and a little shaken after losing him and learning yet another way on what DOESN’T work to secure my little disappearing magician, I at some point wonder what is he thinking as he is on his little walkabout! When we bring him back home he usually has a little smile on his face and a bit of strange, beaming pride. It’s as almost as if he is saying with his facial expressions and posture, “I knew what I was doing the whole time, calm down, I got this” (perhaps he is saying that, lol). I wonder if he had a destination, or did he just want to go for a walk without anyone? Did he have any intentions in mind or a goal when he escaped? I don’t know, but as soon as he is able to more readily communicate I am going to ask him! Maybe he just had the same feeling Forest Gump had when he one day just, “felt like running.” I don’t know. It scares us, but he seems to like it.

Do you have a little wanderer? Where has he or she disappeared to? Have you ever had your heart stop when you can’t find him like I did the first time he escaped when he was 2 and we lived near a very busy road? How do you keep your little Houdini contained?

Ah, the joys of parenting a child with autism! :)

Mike

Lost Little Puppy Dog