HealthSpecial Needs

You know what else is a public health crisis? Autism.

Like many parents, I spend a lot of my day attempting to not sound totally nuts. For example, last Sunday I made an impassioned plea to the staff at my local YMCA:

“Has anyone turned in a hair dryer? It’s not a regular hair dryer, it’s a wall-mounted hair dryer, obviously it’s not mounted to the wall but we had to get that particular kind because my daughter got used to drying her hair at the YMCA using your hair dryers which really are mounted to the wall, I mean they should be…right? My daughter has autism and once she learns to do something in a particular way, she has to do it the same way every time so I bought her a hair dryer that looked like yours so we could dry her hair at home. She’s in the shower right now and we are pretty desperate to find that dryer as soon as possible.”

(long pause on the phone)

“I’ll look behind the desk….uh, no. Nothing here.”

“Ok, well, it is a wall-mounted hair dryer but it has polka dot tape on it–you know, to tell it apart from your’s–but I think I left the dryer there and it’s really, really important that she has it tonight because I can’t get another wall mounted hair dryer on a Sunday unless Wal-Mart has them….maybe…I mean we had to buy this one on Amazon because we couldn’t find it at Wal-Mart which was really aggravating because their website assured me that they were at in the store.Seriously, I usually don’t shop there, I’m not a Wal-Mart type of person but this was an item we really needed. Anyhoo, could you please look in the locker room.”

“Ok, ma’am. I will”

While I waited on the phone, my husband and I had a quick emergency meeting with her home health aide to decide how to deal with this situation. Since my daughter was already in the shower, the blow-drying routine would have to be tweaked on the fly because the YMCA reconnaissance mission would take too long. Usually, such breaches in protocol require lots of preparation but we could do this as long as we were all on the same page. When changing autism routines, a well-planned offense is a must.

When there is a surprise change in routine, the resulting behavior from my daughter can range from whining crying to horrible anxiety attacks to frightening tantrums. It can be circumvented with verbal updates and cues and sometimes she is fine. It’s a hope-for-the-best-prepare-for-the-worst scenario.

In that moment as in many similar moments over the years, I started to panic. Why didn’t I have a spare wall mounted hair dryer? Why didn’t I look for it earlier in the day? How could so many people be caused so much anxiety over a minor household appliance?

“Nothing here, Ma’am.”

I found it the next day when I went to look for it, in the ladies locker room at the YMCA right where I had left it.

It was one event, in one evening, one of several events that happen every week to me and everyone I know who lives or works with someone with autism.

In addition to living with my adult autistic daughter, I have worked for the past 15 years with individuals who experience disabilities and their families, securing and implementing treatment plans. I’ve seen the very best and, unfortunately, some of the worst people, places, and programs intended to help these individuals.

Indulge me in saying that when it comes to autism, I get about as much of the whole picture as one can get. So, my heart beats a little faster and I have to take a deep breath sometimes when I read some of the cavalier and smug posts from the rational vaccination folks on these sites and others.

The Wakefield paper was written in 1997, discredited only in 2004 and in my mind that was last week. So the MMR vaccine doesn’t cause autism, you know what does? No one knows. Not yet.

I know that the Autism Society of America has recently re-released a clear-as-mud statement about vaccines and autism.  Maybe they are just baiting all of the scientists. Maybe they are all just stupid.

I don’t care what causes autism, not anymore. Not an issue for me. When I was pregnant with my last child, I did care. I cared quite a bit.

I did vaccinate my kids. The vaccinations for my son, born in 1997,were administered on a delayed schedule. Call me stupid, I just wanted to hear the kid talk before I gave him what was then considered a potential dose of autism juice.

My doctor is a medical practitioner in the same what that I am a parenting practitioner. Most of the time I take my doctor’s advice but sometimes she is wrong, sometimes she doesn’t have all of the information.

Many of you believe that this vaccine thing is a clear issue. It is not a clear issue, it is a healthcare issue and thanks to capitalism and science and our teeny tiny insect brains, there is no such thing as a clear healthcare issue. There are only healthcare quagmires.

We all deal with unknowns. We all deal with quagmires. And who knows about unknown quagmires better than former Defense Secretary Donald Rumsfeld who said it best:

“Reports that say that something hasn’t happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns–the ones we don’t know we don’t know. And if one looks throughout the history of our country and other free countries, it is the latter category that tend to be the difficult ones.”

Ok, a Rumsfeld quote? Now I really do sound crazy, but all of his politics aside, as Mom always said, “Even a stopped clock is right twice a day”.

In my mind, the vaccine/autism issue was succinctly summed up in a Facebook post by my friend and fellow autism parent, Ed Plunkett, who mostly keeps quiet about such controversies.

So encouraging to see so many likes and shares amongst the converted. Not many convincing arguments being made….Have a great time here, keep posting the nonsense and I’ll keep living in a serious reality that some of you will never really experience.

 

Well said, friend.

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katiea

katiea

Katie Anderson is a freelance writer and improv theater instructor. Her work has appeared in Alt Daily , HuffPost Parents and Laughspin.com. Anderson has written comedy for Panties in a Twist: All Female Comedy and a weekly live stage show, Second City This Week in Los Angeles. She is currently working on a practical guide for parents and caregivers of autistic individuals to be published sometime in the next few years (get off her back, it's hard to write a book). Katie holds a BA in Psychology from The Ohio State University. She lives with her academic rock star husband, one of her three kids and two very spoiled cats in Virginia. Follow her on Twitter @ improvperson.

22 Comments

  1. February 10, 2015 at 1:17 pm —

    Ok, I love me a good Katie rant but I want to fully understand your perspective. What is the quagmire with respect to vaccines? Is it just a communication quagmire or are you saying that nothing is 100% safe or both or something entirely different? I need more Katie rant is what I’m saying.

    • February 10, 2015 at 1:28 pm —

      You know, ranting is a hobby of mine… I’m not going to link you to death with the 7-25,000 articles I see daily on social media about the conspiracy of vaccines. You know they are out there. Healthcare is a quagmire. Last a Week Tonight had a great example of how drug company reps corrupt doctors.

      Moreover, I hope that instead of just dismissing all non vaxers as idiots, I have brought to light what gives them pause in the first place.

      I can appreciate measles is a real problem, autism is as well.

      • February 10, 2015 at 4:52 pm —

        Healthcare is definitely a quagmire, and I get that there is well-earned distrust of the medical establishment.

        It’s interesting because I’ve read a few pieces by moms with autistic kids who have come at it from the other perspective. In general it’s probably tough to have a condition that is real to you tossed around as a debate tactic.

        • February 10, 2015 at 6:06 pm —

          I just don’t staunchly defend much these days. Except whiskey—I am totally pro-whiskey!

  2. February 11, 2015 at 3:31 pm —

    “Many of you believe that this vaccine thing is a clear issue. It is not a clear issue, it is a healthcare issue and thanks to capitalism and science and our teeny tiny insect brains, there is no such thing as a clear healthcare issue. There are only healthcare quagmires.”

    WHOA. That is just factually not true. Vaccines are as settled in healthcare as evolution is in biology. There is zero scientific ground to suggest otherwise. Please tell me you meant something else by that sentence than what it sounds like.

    • February 11, 2015 at 4:03 pm —

      I stand by that statement. There is no such thing as a clear healthcare issue.

      • February 11, 2015 at 7:24 pm —

        Um. Are we defining “issue” differently? Are you saying that every issue or choice in health care can be clouded by emotion and so it’s not clear? Or are you saying that sometimes people have different goals in health care, so the right action depends on the goal?

        I agree with both of those statements, but that doesn’t change that the fact that there are very, very often right and wrong answers in health care.

        If you have a pan-sensitive e. Coli UTI, and your goal is to no longer have a UTI, then the answer is an antibiotics, and there are right antibiotics and wrong antibiotics.

        If you have pernicious anemia, and your goal is to not have pernicious anemia, the answer is B12 injection.

        If you have children, and your goal is to protect them from infectious disease, the answer is vaccination.

        There can be lots of emotions about that. That’s fine and understandable. But that doesn’t make the issue less clear-cut. It may make a parent’s *decision-making* more difficult, but the evidence is the evidence and the issue is clear.

        Vaccinations work and don’t cause autism. Period.

  3. February 11, 2015 at 10:42 pm —

    If your goal was to be smug, then you’ve achieved it! Congrats!

    As of now, no one knows what causes autism so a combination of the right genetics mixed with some chemicals–like some magic as of yet untested chemical commonly used in vaccines very well may.

    • February 12, 2015 at 12:48 am —

      My goal was to try and figure out what you were saying, because I didn’t believe it possible that a blogger on what I thought was a pro-science website would be saying what I thought you were saying. I thought you were trying, and failing, to say something like, “this is more complicated than some people make out, because no matter how irrational it is, there is fear for our beloved children involved.” I would have empathized with that even though I don’t feel that fear, because I’m a mother myself and of course I get that. My fears have occasionally pushed me in irrational directions, too. I’m with you. It’s one of the things that’s hard about being a pro-science parent; sometimes we make decisions that fly in the face of our emotional intuitions on a topic, because we’re going to go with the evidence.

      I was hoping you would clarify and say something like the above. I would have been with you.

      But now you have been abundantly clear that you do, indeed, think that there is a possible link between vaccines and autism. Therefore my goal is to tell you again that you are wrong.

      There is probably no subject anywhere in the medical literature that has been studied as exhaustively as the putative link between vaccines and autism. There is none. It has been studied up one side and down the other. It is the deadest horse that has ever been beaten. I suppose nothing is certain in science, ever, but the level of certainty we have about vaccines not causing autism is comparable to the level of certainty we have about human activities causing global climate change. Bandying about “oh, well, it’s complex; nothing is certain” and suggesting there is more than one reasonable view on the subject is irresponsible and fearmongering.

      • February 12, 2015 at 12:25 pm —

        I have to agree with Rosemary, and I don’t find her comments to be smug at all.

        Katie, when you say “As of now, no one knows what causes autism so a combination of the right genetics mixed with some chemicals–like some magic as of yet untested chemical commonly used in vaccines very well may”, what chemical are you talking about. Vaccines are thoroughly tested. Unless you are talking about that old idea that we need a huge vaccinated vs. unvaccinated study, which would be completely unethical.

        • February 12, 2015 at 6:47 pm —

          I find any comment that ends with a “period” smug, at best.

          There have been candidtae genes involved in autism research for many years, and various gut enzymes, pig hormones, diets and protocols used in its treatment.

          “Throughly” tested? ok. I’ll buy that.

          Just yesterday, I got an email from our local Austim Society asking for parents to talk to a local news channel about vaccines and autism. The whole issue may be “stupid” to many of you but autism is a public health crisis. People will be looking for answers, and relooking at issues.

          • February 12, 2015 at 9:36 pm

            You put “stupid” in quotes, but you are the only one who has used this word in any of these comments. It seems like you are trying to put words in other people’s mouths to make your point, but it is actually you calling other people names (smug, boring, etc.) because we don’t go along with what you are saying.

            You say there is no certainly, but vaccines not causing autism is about as certain as one can get. Don’t you worry that so much attention/$$$ keeps getting spent on this issue when it could be used for research on other potential causes that we don’t have enough data on?

          • February 13, 2015 at 9:13 am

            I really don’t care if you think I’m smug so that’s fine. No need to defend.

            “Just yesterday, I got an email from our local Austim Society asking for parents to talk to a local news channel about vaccines and autism. The whole issue may be “stupid” to many of you but autism is a public health crisis. People will be looking for answers, and relooking at issues.”

            It’s fine to look for answers, but with the understanding that it is technically impossible to prove a negative . . . vaccines have been as thoroughly disproven as part of the answer to what causes autism as anything could possibly be. Unless something new comes to light, there’s nothing to be gained by returning to it, over and over. If autism is a public health crisis, which I don’t dispute, it needs good research along new lines, not a useless rehashing of the same tired debate.

            You seem to be driving straight into a “middle ground” fallacy. You’re sort of arguing, “life is uncertain; therefore anyone that peddles certainty is wrong; the truth is out there somewhere.” Which is appealing for sure, because very often it’s true that peddlers-of-certainty are full of shit. …but some things are a hell of a lot more certain than others.

            I find it very strange that you say want to look for answers (“The whole issue may be “stupid” to many of you but autism is a public health crisis. People will be looking for answers, and relooking at issues.”), but then say “people who want certainty are boring.”

            People have been trying to give answers, and have been looking at issues, for decades at this point. Then when science gives at least part of an answer (vaccines don’t cause autism) you say “people who want certainty are boring?” What sort of uncertain answers, then, are you looking for?

            I am really having a hard time thinking of any non-ideological reason for trying to downplay the huge amount of certainty science has given us about vaccines not causing autism, and yes, I do think downplaying the certainty we have is fear-mongering, because it doesn’t raise any useful issue that hasn’t already been thoroughly researched, and it is likely to lead other parents away from vaccinating. Irresponsible.

      • February 12, 2015 at 6:28 pm —

        Obviously I’m not a scientist, I’m a “mommy blogger” so I’m writing in that context. I did take a stats class in college…so there’s that.

        It’s one thing to say “There is no evidence that vaccines don’t cause autism” and quite another to say “Vaccines don’t cause autism, period” Maybe it doesnlt seem important to you but it’s soemthing many parents who wonder if they could have prevented their children’s disability think about.

        There’s nothing fearmongering about pointing oyt that we are all living with uncertainity. I always thought that people who want certanity are really, really boring.

  4. February 13, 2015 at 12:22 am —

    To respond to Pascale’s last comment: I do think people who want certainty are boring. And I think it’s fair to say that the word “stupid” is a pretty fair word to use to describe the general perception of anti vaxers.

    The Autism Society of America has suggested that more research be done regarding vaccines in relation to autism.

    I have said very plainly in this and many other blogs that I don’t personally care what caused my daughter’s autism. For her sister and brother’s sake, I would like to know.

    Hell yes I would like to see $$ put to better use but in the US, we have a federal budget that dedicates almost 1/2 to defense so our priorities are already pretty screwed.

    • February 15, 2015 at 9:28 pm —

      So, you think it is wrong to want certainty. (Honestly, I don’t care if anyone thinks I’m boring.)

      It is not a question of wanting or not wanting. There is a point when there is so much information on a subject (climate change is real, evolution is real, the earth is not flat) that it makes sense to accept certainty.

      So I have to ask – if you refuse to be certain because you think it is boring, what is the point of doing more testing and getting more information? And this is really how I feel about anti-vaxxers – that they have made up their minds and there is no amount of testing/information to change that.

      I don’t see anyone saying that you have it easy, or that autism isn’t a real issue. But saying flat out that vaccines could still be a cause is dangerous and does nothing to help.

  5. February 15, 2015 at 3:44 pm —

    There is no doubt that autism is real, and difficult to deal with for both the sufferer and the parents of any child with it.
    At the same time, there is no reasonable doubt that vaccines have anything to do with it. So while I am wholly supportive of your struggles in raising a child with autism, and think you and others probably deserve more support from the state and community, I do not see value in saying that there are only healthcare quagmires. If there is an issue with paying for vaccines, that sucks, and is tough, but if the only question is “should I vaccinate my healthy child”, there IS a good answer, and it is yes.
    Ed Plunkett’s quote comes off as exceptionally self-centered. The reason we support vaccination is not because we don’t think autism exists, we know it does, and we, in large part, want to support those raising children with autism, as well as those who are adults living with autism. The scientific evidence is not nonsense, the only things which can fairly be described as nonsense are the conspiracy theories which somehow make a quick vaccine more profitable than treating illnesses after the fact, or similar outrageous and ridiculous conspiracies.
    I was completely with you in the first half of your post, and even understood why you made the decision to delay vaccines for your second child, but calling us cavalier for weighing the costs and coming to the conclusion that vaccines are safe is about as counterfactual as could be. If we’re smug, that is an error that happens sometimes, but it happens on both sides. We do need to be careful when discussing people who make suboptimal choices, as it is very easy to pass judgment and use florid language to describe them as careless or heartless or even evil, when they are usually misinformed or mistaken.
    That said, we don’t know what causes autism, but we do know, with more certainty than we know most things, that it isn’t vaccines.

  6. February 15, 2015 at 7:33 pm —

    Self Centered? Yes…absolutely. Both Ed and I have lots of reasons to be self centered.

    Suboptimal? Apparantly there are only right and wrong choices.

    You know what’s suboptimal? Hoping that your kid dies before you so you can die in peace. That’s not just a dramatic statement, it;s a reality I see many people express to me all of the time.

    • February 15, 2015 at 9:03 pm —

      I don’t know how to respond to that. I’m sorry that there are people who want their kids to die before them? I guess if they don’t vaccinate, that gives them a better chance?

  7. February 23, 2015 at 8:38 am —

    (Commenting primarily to track comments on this post, and secondarily to express confusion and mild horror that a “but both sides are valid!” viewpoint on *vaccination* has bee posted here. RIP skepticism.)

    • February 23, 2015 at 10:33 am —

      yes. I have absolutely killed skepticism. Finally!

  8. February 23, 2015 at 9:42 am —

    Commenting to link this Sci Show Vlog by Hank Green on the Science of Anti-Vaccination, which has some relevance to this discussion: https://www.youtube.com/watch?v=Rzxr9FeZf1g

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