Stirring Up a Hornet’s Nest: Free Advice and the Vaccine Controversy

It was inevitable.  You can’t blog about autism and not end up discussing the causes of autism at some point.

I really wasn’t going to enter the debate.  It has all been said.  By folks a lot more knowledgable on the subject than myself.  So, I really wasn’t planning to talk about it.

Except for the umpteen-zillionth well-meaning soul who suggested to me that my son’s ASD condition was caused solely by a vaccine.  Up until that one individual, I was tolerating it well.  Apparently, umpteen-zillion is one too many.

Do not misunderstand me.  I am not one of those people who believe that there is no vaccine/autism connection.  I do not believe in the concept of a “vaccine cult”.  I have read and researched the subject.  And I think that the case is most definitely not closed with regard to vaccines and autism.  So, no, I don’t think you guys are crazy one bit.  (Read Fourteen Studies, if you aren’t suspicious at all.)

My son has a pediatrician, a speech therapist, an occupational therapist, a physical therapist, and an infant child development specialist.  He also has a DAN doctor.  We haven’t abided by every suggested course of therapy he offers, but we have implemented several of them.  So we like to think of ourselves as open-minded, while not getting suckered into every quack-cure available.  Our approach to treating our son is that he is going to get both conventional and some unconventional treatment.  That way, we won’t wonder one day if something could have helped that we didn’t explore.

But let me tell you about my grandfather.  He would have been 102 years old this year.  This, of course, means that he would never have been diagnosed with ASD, and  it also means he wasn’t administered the current vaccination schedule as a child.

My grandfather was an intelligent man.  He worked as a warehouse superintendent for a large paper mill.  Being a warehouse manager is a little like being a librarian – except on a larger scale.  Things can get out of control inventory-wise, and my grandfather was well-known for being able to organize for optimum efficiency — and doing it with such precision that it didn’t earn him fans.  Making and keeping friends was simply not his strong suit.   He often said just the wrong thing.  My grandmother adored him, but everyone knew he wasn’t an easy man to live with.  He was very good with small children, always seeming to understand just how to talk to them.  I adored him when I was little, and he could do no wrong in my eyes.  My father also remembers his gentleness and kindness in his own early years.

But, as I grew older, I realized that he wasn’t the friendliest guy to everyone else.  I remember him opening a present on Christmas and asking point-blank, “What did you get me this for?”  He then made a 30-minute drive into town the next day to leave it on our doorstep to return it.  He was curt with salespeople and repairmen, and always seemed fixated on whatever was agitating him at the moment.  It was impossible for my grandmother to get a/c installed (in Florida) for 20 years because he was worried about who should do the installation and was “researching” it.  He also kept detailed notebooks about every set of winning Lotto numbers and was in the process of methodically working out “the system” he believed controlled it.   This man who found conversation difficult, socializing impossible, and was obsessive about details and numbers would, without doubt, have been diagnosed with Asperger’s today.

There are other family members who, though they have much greater social functioning, have their own quirks.  My father (who, interestingly, did not talk until after the age of 3), a highly intelligent man and an attorney, is one of the first people to tell you about his social peculiarities.  He has good friends who adore him, and almost everyone likes him as he is what is known as “a character”.  But he can be an odd duck and accepts it with good humor.  Bright lights annoy him, and he finds background noise and sudden loud noises intolerable.  Though he loves his grandchildren, he never leaves without mentioning how very loud an experience is visiting my home.  He is rarely insulted and often fails to notice subtle commentary directed at him.  And if you try to take a picture of the man, good luck.  Almost every photo I have of him, he is looking away.

According to my father, even my great-grandfather had some quirks.  He remembers hearing stories by local old folks about how my great-grandfather ran his business.  When he reached his quota for the day, he closed up shop and went home!  A true numbers guy.

I, too, have some quirks.  I have been a ridiculously picky eater all of my life.  Any piece of meat not perfectly lean, thoroughly cooked, and divested of its skin, gristle, and bone makes me gag.  I also abhor any kind of textural changes to food, especially fruit, and I get upset when my bread gets the least bit damp.  I am quite sensitive to sunlight and smells – which caused me to yak for the duration of both of my pregnancies.  When not concentrating on it, I often have difficulty maintaining eye contact in extended conversation, and can get quite agitated at background noise myself – almost to the point of anger and a desire to escape.  I have had a series of somewhat obsessive hobbies and interests through the years that I have eventually abandoned for the next new thing.  I also inherited our family’s legendary love for travel (even mentioned by ancestors)– a characteristic I have only recently learned is often found in persons with Asperger’s.  Apparently, many Aspies enjoy people watching in other cultures- presumably seeking to sort out the perplexing social nature of neurotypicals.

While both my father and I are, clearly, high functioning in terms of social skills and verbal ability (he an attorney, myself a teacher), we know we lean a bit into that spectrum as well.  Combined with two confirmed relatives with autism and now my soon-to-be-formally-diagnosed son, my family is eaten up with ASD.

The thing is, while three of us were vaccinated using the current protocol, the adults were not.  Certainly not my would-have-been-102-year-old grandfather.  Yet we are all to some degree on this spectrum.  So, I have a VERY hard time reconciling the theory that all of these cases of ASD are vaccine-related.  My best guess is that there is some genetic tendency to spectrum disorders and that there is some environmental trigger that is responsible for the current rise and severity of ASD children.

Clearly, ASD in some form has always existed.  Just look at the number of historical figures and geniuses that were late-talkers and socially awkward – while still putting forth world-renowned works of art, literature, music, and scientific advances.  I believe ASD has always been and always will be.  Recent brain studies of ASD spectrum people show marked differences in functioning.  Since most of the brain is formed before birth, I don’t believe this can be attributed solely to vaccination.

What I don’t understand is why we must take black or white stances on the issue of the causes of autism.  Search the internet on this subject and you will find either militant conspiracy theorists or condescending medical professionals.   Did it never occur to anyone that little in medicine or the human mind is absolute?  And why is it so hard to admit that we still know so little about ASD?  It is as if the government is terrified of admitting that sometimes good medicine can have bad side effects and anti-western medicine folks are terrified of admitting that, just maybe, some of it is simply in the DNA.  I realize that there are many who also think the truth lies somewhere in the middle, but, unfortunately, they aren’t the ones shouting from the rooftops, nor are they the ones I will inevitably bump into in the grocery store.

I don’t know the answer.

What I do know is that I worry I will lose my temper with the next person who laments that my child received vaccines.  I get frustrated every time someone tells me that DAN treatment will completely cure my son.  And I’m tired of being treated as though I’m stupid because I don’t buy the “case closed” argument that says autism is caused by pure genetic chance.  The truth is WE DON’T KNOW.  We are getting better ideas.  And it is entirely possible that we will ultimately discover it is caused by something altogether different.

But I do believe we will find the answer.  With one in 91 children affected by autism spectrum disorders, this country will inevitably wake up to this growing nightmare.  Economically, we can’t afford not to.  These children are young now, but one day they will be grown and many will require living assistance.  That will affect every taxpayer in the U.S.

In the meantime, well-intentioned people should consider dispensing with absolute certainties and free advice – especially if they are not personally affected by autism.  I assure you that, yes, ASD parents have heard it all.  I don’t know any one of us who hasn’t obsessively searched the internet for any and all therapies and information.  We shouldn’t have to defend what courses of treatment we have chosen to pursue for our children, though we might want to discuss how it is going.  We have enough problems struggling over the right thing to do without worrying about other people’s good opinions.  And even when we have decided, we still second guess ourselves and obsess.  Most people wouldn’t dream of interrogating a cancer patient about her treatment choices.  It would be nice if they wouldn’t do the same to parents of autistic children.

What we sure could use are hugs, friendship, and a genuine interest in our child and families.  Invitations to child-free get togethers, movies,  or a run for a mani-pedi.  What special-needs parents really need is support, not suggestions (unless asked, of course).

That’s something that all of our endless hours of searching, reading, and learning can’t provide — the truly needed benefit of simply spending time with a good friend and having someone take care of us, even for just a few minutes.

This guy said it best:

“When a friend is in trouble, don’t annoy him by asking if there is anything you can do. Think up something appropriate and do it.”
– Edgar Watson Howe

(Exiting, looking around nervously to see if someone is going to throw something at me and stepping down off my soapbox…)  :)

If you enjoyed this post, you might like (language alert!): Jillsmo’s “Autism and Vaccines:  My Opinion”.

57 thoughts on “Stirring Up a Hornet’s Nest: Free Advice and the Vaccine Controversy

  1. Alienhippy

    When I first read the title and saw the picture I thought to myself,
    “Oh no, please don’t put me off your blog. I’m really enjoying reading your blog.”
    Then you introduced Grandfather….YAY!!!!
    Your family is SO SO SO like mine!
    And guess what?
    My Dad and his twin, my Nan and her twin, my Nan’s twin brothers and her father (my Great Grandfather) Were all very quirky and none of them were vaccinated either.
    You see I lived in an autistic bubble and didn’t know that we were all so different, because we were all so the same. Then the bubble popped and meeting the world was one big shock. We knew we didn’t fit, but we did fit as a family.
    Love this post, loving your blog.
    Love and hugs.
    Lisa. xx :)

  2. trisomy21overcomers

    Just precious commentary. :-) You have a wonderful knack for standing your ground while not offending others who may be standing on some other ground . . . . Great job! I hope to one day be able to do the same thing.
    Tears of endearment, familiarity and compassion are flowing all over NC from my friends and family (as well as my son’s current teachers and therapists) who reading your blogs – especially the Apology From Your Child’s Former Teacher.

  3. outrunning the storm

    Yes! well said, we are all able to accept (and sometimes celebrate) how different our experiences with ASD are, I hope we find ways to make this true of our opinions *about* ASD someday.
    I would also add to the mix, that expectations of kids are amped up so much earlier these days, than ever before. As a result of my son’s recent functional behavioral assessment we have leaned there are no less than 34 times in his kindergarten day he is expected to transition to a new activity. When I went K we took a nap, ate a snack, learned not to eat the paste,and went home.
    I often think about how if my boy was living several generations ago and doing hard physical work on an isolated farm like my grandfather did,we would not notice his sensory and social issues at all. oops sorry didn’t mean to rant.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      That’s an interesting point, Outrunning. I once had a nurse practitioner friend explain her theory about the prevalence of anti-depressant drugs in our country. She pointed out what you did about our ancestors just a few generations ago. She was of the opinion that the human mind isn’t designed to multi-task like it does and that our current world is overtaxing it. I’d say this affects autism to some degree as well, wouldn’t you?

  4. Lisa

    Great post. I, too, am of the belief that there is a genetic AND environmental trigger for ASD. I love that you kept your temper…I get too heated and words fail me when it comes to this topic.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      It’s hard to keep your temper when an issue is such an emotional one. I just keep trying to remember that people really do mean well most of the time. Kind of like the people who knock on your door on Saturday mornings. They truly mean well, so I just take the literature and wish them well. But it doesn’t mean that, when I shut the door, I’m not annoyed to have had to go to the door. Being lectured about autism is a little like that to me.

  5. Roy Merideth

    WOW! Well done! Amen, amen, amen! Our 11 year old son is, most likely, on the spectrum. We have chosen not to pursue a formal diagnosis because his “issues” are manageable. We have no idea how or why he is the way he is. He has a 141 IQ but can’t stand concerts because the noise “drives him crazy”. He also can’t wear jeans and can’t stand tags in his clothes. He is a very, very picky eater too. That’s our biggest concern, good nutrition. He does well in school and has two friends that accept him for who he is. In spite of his “issues” he’s our son and he’s a gift from God. We get frustrated and fried but we make it through each day.
    Thanks, so much, for your posts. They are incredible!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thank you, Roy. I’m so glad to hear that your son is functioning so well and has made friends. it sounds like he has what he needs to do well as an adult. Thanks for sharing and for the kind words.

  6. Kate Searcy

    Love , LOVE your posts! You have such an incredible way of putting everything. Thank you for sharing your journey.

  7. Jill F.

    I feel the same way- there is alot of autism signs and red flags present in my son’s dad’s side of family as well. I felt all through my pregnancy that he was active- and he is that way now. Extremely hyper and all over the place. I believe with every fiber of my being that he was born this way, and nothing “made” him autistic.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I, too, believe that my son was predestined somewhat to be who he is. Though I confess that I also think that, perhaps, some sort of environmental trigger exacerbated his ASD. Looking back, I realized he was a little different from birth. But I don’t deny that he began to regress at about a year. So I’m truly on the fence a little about it. It’s a confounding thing, to be sure.

    1. Alienhippy

      That’s why I write, it’s gets all my thoughts out of my head and I have SO many of them looping around believe me.
      The pictures fine, I’m just dyslexic and very VERY visual. It took me a while to get to the bit where you mentioned your Grandfather. Plus don’t forget with dyslexia and Aspergers it takes a while for what I’m reading to actually sink in….giggle.

  8. Melanie @melanielucas

    Thanks for being a rational voice on the internet. They seem to be so hard to find these days. :)

    Also, I totally share your meat tastes!

  9. Joanna K-V

    Just found your blog recently and I love your thorough thoughtfulness. As a speaker on autism awareness, an author of children’s books on autism and as one who works daily with students with severe autism, I think your article was well said. I, too, have a family member who would be diagnosed with Aspergers if that label had existed back in the 40s. Meanwhile, he is highly successful, very intelligent, does well socially due to his wife’s guidance and provides us giggles to some of his quirkiness. I wouldn’t change a thing now that I “get it.”

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thanks, Joanna!

      I see it in all kinds of people now that I know more about it. It’s a spectrum for sure — that we all fall on to some degree. :)

  10. jokerssoul

    I am so glad that I am not the only one that gets frustrated with the whole vaccine thing!

    I am under the firm belief that I don’t really care what causes Autism… I just want to be one of the people that help AT LEAST one person with Autism.

    I love love love your blog!

    Thanks for writing!

  11. Michelle Coontz Knecht

    Bravo! We spend too much time fighting amongst ourselves instead looking for better solutions. Each child is different. Definitely not an all or nothing issue. Our nonverbal daughter is now 12, and each day is still an adventure!

  12. Christi Smith Reid

    LOVE your “soapbox” post… I’ve been on mine a few times myself. After much research and countless opinions, I also concluded that it was both familial AND environmental. I feel there is genetic “weakness” or predisposition, and something environmental pushes the boundary. We, too, have not done EVERY thing our DAN doctor suggested, and infact stopped traveling the 1 & 1/2 hrs to go see him as we felt that we weren’t low enough functioning to meet his interest. I do, though, agree with the idea of diet effecting behavior, mood, etc. The best example I ever heard was reguarding consumption of alcohol. No person in their right mind, can say ingesting even moderate amounts of alcohol does NOT effect you. My son has the strictest diet in our family… and he’s the ones who has gotten sick the least since being on it.
    As a nurse, I know that vaccines have a place in society. I know the “good” that has come from their exhistence. My concern is the same as many. Expecting one drug… one shot… to be safe for EVERYONE. The same dose that is given to a 300lb man… is given to a 7lb newborn. The ingredients are terrifying, to say the least. The idea that autism is solely from vaccines is ridiculous, but the rise of the number of “necessary” shots is getting out of hand. There will always be strong voices ‘for’ & ‘against’ but all we ask is that you accept our decisions, even if you may not agree with them. I have literally been asked not to bring my child to a particular doctor after refusing to “booster.” Both of my children have received vaccines… just not ALL of them. And lastly, I’m not one for conspiracies…. but it doesn’t make me feel confident that the “safety” studies are funded by the very companies that produce the vaccine. You really dont think billions of dollars weighing on the line, is going to sway the verdict?
    Thank you for your blog. You have spoken my same thoughts, my same feelings & my same words better than I could have.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You echo my thoughts as well. I think there are valid concerns out there. At the same time, I agree that vaccines have greatly benefitted mankind. I’m in no way against Western medicine. In fact, I’m actually the last person to cooperate with alternative treatment — simply because it so often tastes bad. lol I had an uncle who died of appendicitis 6 months before the introduction of penicillin. He was 8 years old. Western medicine would have saved him. Vaccines have protected millions. But there is that saying about there being a little bit of poison in every medicine. What I think we need to look into is how to identify persons who possibly should not be exposed in the same way. But I by no way want to attack doctors. (My best friend is one.) I just wish we could open the dialogue more.

      Thanks for your insightful reply. :)

  13. Renee Root McQuillen

    I have to admit I am developing a blog crush on you. :) Your post is right on, IMO. We have multiple quirks in my family making me believe that there are both genetic and environmental factors contributing to my son’s ASD diagnosis. And while I try to see the best in people when they offer their unsolicited opinions – I just don’t need to hear/want to hear them anymore. I have so many better things to do with my time.
    Thanks for writing this blog. I feel like I have a friend in this journey. Its hard when no one you are close to is experiencing this or has experienced it.

  14. ScouterKat

    I’ve often been asked by others if I’ve vaccinated my 8 year old autistic son. It really takes all my restraint to not be a smarta$$ about my answer which is basically, “Yes, autism isn’t fatal, but most of those diseases I’ve inoculated him against are.” HOWEVER, that answer would really not sum up my true feelings. We chose to delay some vaccines by spreading out the schedule. In fact, he got his Chicken Pox vaccine (one vaccine I completely disagree with requiring) two days before his school’s deadline to have it done or he would be suspended.
    My little guy was “different” from day one of his life, and my family is full of dents in our DNA. I hate loud noises to this day and moist bread…EWWW! I gagged when I read that sentence. Still, I know those who had a child that could speak and count and smile and so many other things until they were vaccinated. I’ve listened to and researched all the theories and, like you, I think truth is found somewhere in the middle. It’s so refreshing to find a voice that isn’t soapboxing for one of the extremes.
    There was a time when I wanted an answer to what caused this in my son. I wanted to point my finger and feel justified in doing so. But that kind of thinking can lead to resentment and a never-ending downward spiral of depression and anger. Ultimately I have found that my energy is best spent with my son, finding the best ways to help him to find his way in the world. My middle ground these days is more about finding the balance between caring for him and caring for myself. The best part about caring for myself has been learning to respect my own instincts as a parent so that I do not fear (dread?) the judgment of others.
    Thanks for always making the “main thing” the main thing!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thanks, ScouterKat.

      I’m still working on that respecting my own instincts and not dreading the judgment of others. Perhaps blogging will be my desensitization therapy, huh? I’ve already gotten some hate mail, after all. That should help, right? lol

  15. Jenna

    You brought up a lot of interesting points. I too am a little quirky, everything you mentioned for yourself I have all of those oddities. I would never mind eating a meal at your house because all of those things drive me crazy as well. There was a time that I wouldn’t eat an egg with out taking that white stringy thing out of it. I now have to convince myself every time I make eggs that it is okay to not take it out and I still have times I can’t help but do it.
    Also, when I was a baby I wouldn’t let anyone hold me, looking back I feel so bad for my mom. I don’t think anyone else in my family really has these oddities though. Maybe some of my distant Aunt and Uncles, and cousins.
    What it left me wondering is if we had the same vaccine schedule then that they had now I wonder if I would have really been on the spectrum?
    I agree that vaccines are not the only cause, and genetics isn’t either, but I would think that is is a combination of so many things even the environment.
    Also, I won’t leave another comment but I do love that Temple Grandin Quote.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Most definitely. My father likens it to lung cancer. Some people can smoke for 100 years and never get it. And their wives might never light up and come down with it at 50. Genetics clearly play a part in that. And so does the environmental trigger.

      We might be wrong, but I think this is overlooked as a possible theory.

      I love Temple Grandin. Ironically, she was one of my heroes long before my son was born. She inspires me. :)

  16. lisa chiodo | renovating italy

    thank you thank you thank you for being the voice of reason ( and being able to get inside my head so easily) it’s also hard when the comments are from family…my Mum likes to tell me he’ll grow out of it and my stepdad tells me “he looks okay to me, I think he’s better now”
    ciao lisa

    1. Profile photo of FlappinessIsFlappinessIs Post author

      That’s a killer when people don’t seem to believe you. I have spent a year now saying that something isn’t right with his development. And arguing with people simply because he “is so social”. Apparently, people are still of the belief that autistic children are incapable of affection and eye contact. I realize that he likely not very severe. But it doesn’t change the fact that I have to help him be the best Callum he can be – while still acknowledging the individual he is and whom we love. Having your concerns dismissed is so frustrating…

      Thanks for sharing, Lisa. :)

  17. Charles

    All your feelings are just like mine! I really love your posts. I was suffocated for those professionals who wanted to give advices. Once my kid’s life is surrounded by the professionals and now I keep them at least as possible. I just stick to the RDI. I was suffocated to waste the time on traveling and thinking the validaty of each comment made by the so-called professionals who are the profession in their respective fields but not autism. And it is also right that we believe that some of our family members are in the spectrum and it appears that autism is somewhat genetic…..

  18. Belinda Phillips

    Hi Leigh,

    FYI, a recent study supports your theory that it is likely that autism occurs before birth — Neuron Number and Size in Prefrontal Cortex of Children With Autism, published in JAMA on November 9, 2011. The team of researchers from University of San Diego looked at several portions of the prefrontal cortex and found that there was a significant difference in neuron number in children with autism versus the control group, the autism group having significantly more neurons. Neurons proliferate before birth somewhere around the second trimester and excess neurons go through a process of apoptosis (cell destruction) generally in the third trimester. The researchers point to prenatal causes of autism including unchecked proliferation, reduced apoptosis or both but caution it is likely a more complex process.

    On the issue of what people say — I don’t think people really intend to be hurtful or cause you to have to defend yourself. I have felt that way on many occasions as well. What I have learned is that they just don’t know what it’s like to be in your shoes.

    Keep up the great work as both an educator to the people who don’t know and as a mom to your children!

    xoxo Belinda

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thanks for sharing that information, Belinda.

      I know most people mean well. And most of the time I do too. Heck, even when I don’t, I try to fake it! lol

      But it IS nice to now now have an outlet to fuss about it on occasion… heh heh.

      Thanks again!

  19. Linda Bale

    Excellent points I too had a father with Asperger’s and I have two sons on the high end of the specturm…one is clearly a chip off my dad’s old block and the other presented after vacines and I have had soem very interesting times as an undiagnosed aspie myself…. loved your article and thanks.

  20. Momma

    Right on!!!! So SICK of the community sometimes. The Warrior movement is really driving me nuts. While I agree with a lot of what they stand for, I cringe when/if someone refers to me as a “Warrior Mom” because I find so many are very intolerant of other views, believe therapy (of all things) is a dirty word, and get so personal and emotional in their statements it doesn’t surprise me that we have to live with the moniker of “crazy autism mom” over our heads. like you, we are moderate with our approaches and do a little bit of both of traditional and alternative interventions. I think it’s insane to think parents MUST recover their child on their own when the brightest minds in the world don’t know!! Like you, there are many subtle traits in our families and I think that is the biggest contributor. I, too, have had people trying very hard to convince me that is was vaccine injury. I know..I was not. Although I do believe it happens. Anyway-you hit a cord with me!!! Write on, Flappiness, Write on!

  21. Catherine Cornell

    Fabulous blog with MANY interesting comments (on other posts as well)! As far as the vaccine issue goes, there might be and probably is a contribution, in my opinion. Maybe the vaccines increased the severity in our case? There are many odd ones, including myself, most especially myself, in our families. The problem is, the potential for harm from the environment is HUGE, how does it get narrowed down or stopped? Is it the ultrasounds everyone gets too many of? the pollutants? It is not JUST genetic. All the worrying about WHY doesn’t help you NOW though. Keep trying and keep writing about it. I will be reading along with all your other faithful followers.
    Thank you.

      1. Julie

        I guess I liken it to (type II) Diabetes — there is definitely a genetic component, and definitely an environmental component. Otherwise, everyone in a family would get it, or everyone with the negative environmental markers would have it. Doesn’t happen.

  22. Barb Silvestro

    my son isn’t vaccinated and on the autism spectrum :)
    My daughter is partially vaccinated and in the gifted programs
    My oldest daughter is fully vaccinated and is not on the spectrum at all

  23. lguinn

    Thank you for your blog. Over the years, I have learned to deal with all kinds of unwanted advice about my daughter’s mental problems (which after 25 years are still neither adequately diagnosed nor effectively treated). It has taught me to be much more tolerant of others, whether they are people with differences or their parents.

    As a young parent, I was devastated by other people’s comments about how I raised my child and what was the matter with her. I only wish I had been able to read and appreciate your message then. I am glad it is here for others today.

    And by the way, some people do feel free to offer advice about cancer! I’ve had people tell me what I should do to cure myself, and also what I did wrong to give myself cancer. Really.

  24. Lauren Lucas

    I think with the growth of population, this has seen a rise in numbers of people with ASD, and 50 years ago, women with autism were seen as ‘refrigerator mothers’ cold and aloof. And advances in science and medical knowledge have meant that drs are getting better at diagnosing ASD. And there might be a bit of over diagnoses going on. As my dr said to me about my son, he has some characteristics of aspergers but not all so at what point does it change from just a weird personality to a biological, neurological problem?

    1. Profile photo of FlappinessIsFlappinessIs Post author

      There’s truth to what you say. I think the answer is somewhere in the middle. And I agree. There is a line somewhere between weird, nerdy, and somewhat disabled. I have the quirks. But I’ve never been impaired by it. I wouldn’t say I have Asperger’s, but I’d say I am a tad Aspergery. lol Life is so gray, you know?

  25. Alicia M

    I had the pleasure to spend the day with Shelly Hendrix, Anti-vaccine “warrior mom” who testified in front of congress about making vaccines safe. She is currently with Autism Speaks as their legislative advocate. She was in MN to testify with us in favor of insurance reform. She was fantastic making sure she let me know she didn’t judge me for my decision to vaccinate. She offered me information if I wanted it, told me her story and made herself available to me if I wanted to share my fears of vaccinating my younger son after my older sons diagnosis. Never at any point did this woman, who firmly believes her son’s autism is a vaccine injury, allow any judgment to enter her tone of voice or choice of words. I wish more passionate people had her gift of tact and compasion. I learned a lot from my time with her. That is what happens when you are open and respectful, people listen to what you have to say. And while I did ultimately decide to vaccinate my younger child (for me the risk of death far outways the negative impact of autism) my time with her influenced the way I went about it prompting me to spread out the shots and not allow any mega doses to lower the potential risk.

  26. Patti Van Burkleo

    Since there is no such thing as a genetic epidemic, maybe most of us have the gene propensity for developing an ASD. What the environmental trigger(s) is for more and more kids receiving a diagnosis every year is the million dollar question. Our speech/occupational therapist has a theory: since the last two to three generations (1960s start) have been the most exposed to vaccines that this has somehow changed our own DNA in some way instigating the dramatic rise of 1 in 88 boys. I am not anti-vaccine but I am concerned about them What I do know is that my first child had 13 vaccines (born ’85) and my last son who has an ASD has had over 40 (born ’96)……just seems a bit of an overkill.

  27. Dani

    I am both an autism mom and nursing student. During my pediatric and growth and development semester, I took the opportunity to really concentrate on researching autism. I did find out several interesting points.
    1. Autism is not caused by thimorsol containing vaccines such as mmr and the flu. There has been level of evidence – 1 studies (PLURAL…AS IN THOUSANDS!) around the world proving that there is no medical link. Even healthcare workers who do not keep up with autism research will blather about the mmr vaccine, so beware.
    2. Autism doesn’t have a cause we can point at and say – THAT caused my kid to get this. But it does start in early prenatal and postnatal brain development. By that alone, the mmr vaccine is out since babies don’t receive that vaccine while in utero.

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