Vaccines & Autism; the Parental Quandary

Some might remember reading Shana Buck’s moving piece last month, where she wondered about the conceptual perceptions of her son who is autistic.

Last weeks news that the certain “studies” linking autism to vaccines were fraudulent finds Shana pondering what parents are supposed to do, and who they should trust:

Something is causing the rise in actual numbers of autistic children, something besides ‘better diagnosis’. What should I, as the mother of one child with autism and another with Asperger’s syndrome (a disorder in the ‘autism spectrum’) think about this minefield of opinion that has opened up since this news?

There is a kind of pain that happens deep in the heart when a child begins to display the symptoms of autism and denial is no longer possible. It becomes a deep grief when the diagnosis is made.

Guilt follows: Was it my own fault in what I have done, or in what I have failed to do that led my son to become mentally retarded, to be unable to process the world around him appropriately, to be so dependent on others for his care for all of his life? I treasure my son, and love him beyond measure, yet the nagging doubt came: What did I do, how could I have prevented this, what will happen to him when I’m gone?

The voices of doctors, scientists, advocates, and media shouting each other down over the heads of people like us is sometimes too much to bear. Who can be trusted?

It’s a mother’s plea for straight information and no-more hyperbole. Check it out.

About Elizabeth Scalia
  • http://oxyparadoxy.blogspot.com/2011/01/im-sick.html The Ranter

    There is a new study from California that suggests a link between autism and spacing your kids too close together.

  • Clyde McKenney

    Please excuse me, but it’s spelled quandary.

    And the new study from California mentioned by “the Ranter” adds to mine, since my daughter with Asperger’s was our first-born.

    [Thanks, Claude; knew it didn't look right! :-) admin]

  • Marcus

    Ranter – I’ve heard about that study in the last few days. Still there are plenty of cases, such as a friend of mine’s son, who is a first-born so spacing is not the issue in a healthy number of cases.

    There seems to be a genetic/metabolic predisposition of some toward an autistic-spectrum systemic reaction (maybe just to too many vaccinations being piled on top of one another in too short a time for their individual systems).

    There are docs who are so concerned with the macro “herd” protection, that they eschew antibody titres of individuals and the like to assess individual members of the “herd” for whether they even need a particular vaccination.

    For more on this…http://killtruck.wordpress.com/2011/01/07/a-post-about-a-post-about-autism-w
    hich-im-sure-youre-sick-of-hearing-about/#comment-977

  • Rob Crawford

    Not to be rude, but she could pray for the serenity to accept things she cannot change. Her off-hand dismissal of a reasonable explanation and her insistence on blaming herself for what was most likely an accident of environment, of genetics, or just plain chance don’t serve herself or her children well.

  • TerryC

    I would check out the web site of Children of God for Life. They explain how Dr Theresa Deisher has done work on tying the use of Aborted Fetal DNA in the manufacture of Vaccines to Autism. So while Wakfields work may of been tainted, that doesn’t mean that there is not a connection between Vaccines and Autism, at least when you’re talking about vaccines manufatured using Aborted Fetal DNA.

  • dicentra

    We’ve long been treated to “science by press release,” wherein news organizations grab whichever study’s announcement tickles their fancy and pass it along.

    But most press releases exaggerate or even invert the study’s conclusions, which means that any news item that begins with “a recent study shows a link between…” is likely one of Mark Twain’s three categories of lies.

    If you think the AGW science is corrupt, you should see what goes on in the world of nutrition and health.

  • shana

    Rob Crawford,

    I think you misunderstand.

    Nearly every parent who has a child with an injury or a disability will initially feel as if there was something they should have done, could have done, should have known. It is a normal response because most parents naturally want to do everything they can to protect their children, and when we can’t we tend to say, “What did I do wrong?”

    We don’t all tend to stay there, though, as there is too much work to be done and too much living to do, but it is part of that process of learning that a child isn’t what everyone considers ‘normal’.

    I think that guilt (which probably never goes away entirely) is easily manipulated by politicians, media outlets and advocacy groups who use it to get funding, sell more magazines or papers or gain membership.

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  • Joseph Marshall

    Unfortunately, no one. The only thing you can be is an advocate for your child and the only thing you can do is to be “professional” about it, just as the doctors and nurses are supposed to be–read widely, think up questions, ask them, and persist in asking them if you are not satisfied with the answers.

  • Myssi

    Joseph Marshall!!!! I’ve missed you!!!! I am so glad to see you commenting. But, I digress…
    My oldest son (3 years and 4 days younger than his sister so spacing can’t be the cause for us, Ranter) has Aspergers’ Syndrome. The doctor who diagnosed him strongly believes that there is a genetic component as he sees behaviors in myself and my husband that point to A.S. as well.
    I can totally relate to Shana’s “is it my fault moment;” I can totally relate to praying for serenity too – I’ve done it a lot. My son is incredibly high functioning – even on a social level after lots of occupational therapy to help him learn to understand tone of voice and body language. At 14, I wouldn’t trade his unique perspective on life for anything. He often stops my other children in their tracks with his questions and they are more inclined to listen to him than to me. If you have to explain it to I. and you can’t make it justifiable, you probably just talked yourself out of doing it. At 42, I still don’t think like you and my employer values my critical thinking skills a lot. I have had to learn in my life to see the other person’s perspective because mine doesn’t look like that at all. The world needs people who think like Aspies and other high-functioning autistics and the lower functioning autistics need help to bring out their unique view too. Fighting about vaccines being the cause doesn’t help – I only care about the cause if it leads to solutions. I don’t like looking for something to blame – like Job’s so-called friends did – when there is comfort and aid that could be given instead. Can we please just to find solutions – for developmental delays as well as for mental illness – these problems are far too common to worry about whose fault it is; let’s stop the blame game and put all that energy into finding solutions, please.

  • Joseph Marshall

    Well Myssi, I’m glad my little visit has rated eight exclamation points. I don’t come by much because I really am engaged in hours of personal prayer and practice.

    I’ve taken a break because I have finally finished the Buddhist prayer cycle I started 25 years ago involving over 500,000 repetitions of certain prayers. I now have to take on a completely new set of practices that will take a couple of months to get fully up and running, so I have more time on my hands at the moment.

    I sincerely want to thank the Anchoress and all her readers who have prayed for me. I am unwaveringly certain that your prayers have given me the strength to finally accomplish what I vowed to do a quarter century ago and it is my clear wish that you specifically, as well as all beings generally, benefit from any accumulation of merit that my practices have gathered.

  • Elaine S.

    I have an autistic daughter, age 15, fairly moderate to high functioning but still not likely to ever be capable of functioning completely on her own. (She’s an only child so child spacing obviously had nothing to do with it.)

    I myself am probably at least mildly “Aspie,” although I didn’t know what that was until my daughter was diagnosed. Actually I was always attracted to Aspie types; I never used to think of them as having a disease or disability, but simply as very intelligent people who were a little eccentric.

    What helped me more than anything else was the perspective I found in online support groups for adult auties and Aspies, and at the “Autistic Advocacy” site of Frank Klein.

    Klein states, very eloquently I believe, that one cannot, and should not, attempt to “cure” a child of autism any more than one can attempt to cure them of being male or female, or of being black or white. It is part of who they are. The goal should be to help them become the best and most independent autistic persons they can be — they do not have to be exactly “normal” or just like everyone else in order to live fulfilling lives.

    Just because YOU may believe their lives are lonely, limited, and unfulfilling, doesn’t mean THEY think so. They may be perfectly happy to have few friends and to devote themselves only to a few narrow interests. What you and I think of as fun — e.g. going to a party or sporting event — may be extremely stressful to them. In some ways, auties and Aspies are much less likely to succumb to peer pressure or to a herd or mob mentality than “normal” people do — and there are times when this is a good thing.

  • http://oxyparadoxy.blogspot.com The Ranter

    I’m not saying the study is right – in fact, I have plenty of reservations about any study coming out of California. ;-) Just saw it in the paper this morning, and thought it would be good to bring it up. The media completely ignores the fact that some parents have a problem with the MMR vaccine because of its link to abortion.

  • http://oxyparadoxy.blogspot.com The Ranter

    Sorry – I should really finish my thoughts before I hit ‘submit’….

    The media completely ignores the fact that some parents have a problem with the MMR vaccine because of its link to abortion, not because of a supposed (I don’t know what to think about it) link to autism.

  • Clontarf

    As a parent of a child whose child who was once diagnosed with an Autistic condition, I strongly believe that there should be a recognized hierarchy in terms of which people are more qualified to speak about Autism and which people are less so.

    There are well-meaning individuals, both from the medical profession and the general public, who simply have not lived life as an adult charged the responsibility of taking care of a child who is socially challenged, often non-communicative; one who suffers from bodily control issues both internal and external, not to mention the immune dysfunction, digestive malaise, malnutrition and behavioral disorders that are common to those who are properly diagnosed, as my son was, by a qualified clinical Neuropsychologist and separately, by a highly respected Pediatric Neurologist.

    Parents of Autistic children used to be isolated and their children misunderstood, misdiagnosed or labeled as something other than what they are. Thanks to the Internet and a host of unique resources, a child like mine can be introduced to treatments that are not available in the mainstream medical system. Fact is, Autistic kids do exhibit markers that are easily detectable with blood tests, stool samples and urine samples.

    Low production of glutathione (Google recent U.C. Davis research), abnormal levels of L-Carnatine, higher than normal production of proteins that signify gut inflammation and a host of behavioral issues tell us that Autistic kids are different inside AND out. With overstimulated immune systems already in place, the medical community wants us to inject these kids on the same shot schedule as those whose indicators might otherwise be normal.

    Through painstaking effort, years of therapy and aggressive detoxification of my son’s bloodstream and metabolic processes, we now have a first-grader who excels in a regular classroom, who has many friends and is practically undetectable as a former Autism Spectrum case, except for minor PT and OT therapy requirements. What’s more, this is a child who has taught his body to do things well after the normal milestones, all through effort that would bring you to tears. He is a remarkable boy who has been given a gift from God, the release of dozens of small miracles into his young life.

    I have sat his younger sister, a 16-month old, in front of doctors and have made them look into her eyes, stating the following:

    “She has exhibited low muscle tone, just like her brother did, and many of the same metabolic problems. You tell her why her brother was given an MMR shot after not hitting his milestones. Explain to her why his language got worse at 3 than at 2, why his feet began losing contact with the floor as he ascended and descended stairs. Tell her that there is no connection between the Autistic condition and the immunization schedule!”

    I have met a lot of stubborn doctors with God complexes. I’ve never gotten anyone to take that bet.

    Keep praying for DAN Doctors and all of those in the medical community who have been directly effected by this disease. With God as our shield, we have beaten back this terrible affliction. Imagine your child inside a three-story building. One by one, the lights go out as he runs around, peering out of the windows. The door is locked, the blinds continually lower and you cannot connect with your child.

    That is what it is like to have an Autistic child. Is there any medical procedure that is worth defending to this extent? I would ask parents to continue with immunizations, provided that their children are not predisposed to Autism. Use clean vaccines (generation rescue has a list) and spread the shots out, while tracking your child’s reactions. Unfortunately insurance pays for very little of the things that work.

  • Kozaburo

    I’ve long suspected that Autism is caused by a sexually transmitted disease that is passed from mother to child if the virus is shed during labor, e.g. some type of herpes virus. Of course, nobody would fund such research (even if there were preliminary discoveries), because it’s such bad politics to say “your child is autistic because you or your husband had a disease”.

    It’s a testable hypothesis, but also a shot in the dark. To test it, you’d need a molecular candidate – something to target with genomic screens, ELISA, etc. Thus far I’m unaware of any markers for autism.

    And I think that’s part of the frustration in general: Someone has a beautiful child with an awful condition and no answers. No “missing insulin” or “low vitamin K” or periodic shedding of virus. But if molecular research on autism continues, we’ll get there. Have hope! Even insulin was an unknown molecule not too long ago.

  • Nerina

    My first born son was diagnosed with Asperger’s at age 5, though I knew long before then, that something was “wrong.” Even from birth I noticed things about him that just didn’t seem right. Looking back I wonder how much of his behavior is truly Asperger’s and how much can be attributed solely to sensory processing issues (and yes, I know there is a huge amount of overlap). I also wonder how many kids placed on the spectrum are displaying symptoms of SID instead and not true autism.

    Regardless, when my son was young (before a year old), I had started to read up on developmental delay. To my horror, I discovered that my son was exposed to several “risk factors” for autism – this was 1995-1996 – which included pitocin induction, forcep delivery, over large head and LGA (check, check, check and check!!). But what was I supposed to do? I certainly couldn’t go back and I had already had him vaccinated on the usual schedule because I was clueless about the research.

    Ultimately, we did PT and OT and speech. I took him to the playground everyday and we worked on climbing ladders and going down the slide. We used the swings alot. And we had more children (4 more) and I think the siblings were the single best intervention we did. His sister literally pulled him out of his world and forced him to interact with her. She would settle for nothing less. When he wanted only to line up his Thomas trains (btw, I think a fascination with Thomas the Tank Engine should be part of the diagnostic criteria for Asperger’s :)), she would cajole him and mess up their order and suggest another way to play with the toys. God bless her. I don’t know how he would have turned out without her.

    He’s almost 16 now and is enrolled in high honors and AP classes. He doesn’t have any close friends, but he has casual acquaintances and he participates in Scouts. He’s also a proficient cellist. His siblings are all fine (and they all received vaccinations according to schedule) and they love him and accept him with all his quirks and idiosyncracies. While I blamed myself in the beginning, I look back now and see God’s plan in all of it.

    [I personally think that on the subject of autism (particularly Asperger's) we don't know what we don't know; people with mild Asperger's may simply have been considered "eccentric" or "anti-social" before, but I'm quite sure they existed before we had a name for it, or even had vaccines...so perhaps there are all sorts of triggers. Or perhaps it is God's plan. - admin]

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