The New Pediatrician...Autism at the Doctor's Office

A few months ago, I made the tough decision to switch Janey to a new pediatrician.  Our old pediatrician had been with us since the day my oldest William was born.  He helped us with William as a little preemie, he guided us through both boys' asthma, and he was at the end of a number of desperate phone calls at various times in my years of raising the kids.  I liked him a lot.  But for a number of reasons, he wasn't the right doctor for Janey.

The most important one was just in terms of ease of transportation.  He was at a clinic in the city, one I couldn't drive to.  It was very easy to get to by public transportation, but with Janey, that's not always practical.  I needed a doctor I could drive Janey to easily, so Tony wouldn't have to miss work.

The other reason, though, is that I never quite felt he felt comfortable with Janey.  I am not faulting him for that, at all.  Janey is tough.  He was professional with her, but I don't feel like he truly got her.  And that's okay.  Not everyone is able to deal well with a child like Janey.  I have realized that over the years.  Some friends fall away when faced with the reality of her.  Others step up to the plate.  To be brutally honest with myself, if I had not been thrust into the world of parenting a child like Janey, I might be one of those who didn't deal well with it.  And so I try to understand that not everyone can.  But after Janey's appendix rupture, I realized it was vitally important for me to have a pediatrician who felt comfortable with her.  Her old doctor had nothing to do with diagnosing (or not) her burst appendix--that was all done at the hospital--but I realized I needed a doctor who felt comfortable enough with Janey to tend very closely to her physical health.

So how did I pick this new doctor?  I'd like to say I did all kinds of research, and interviewed doctors, and all that.  No, instead I picked the clinic I'd like to drive to, looked at the pictures of the pediatricians with openings and chose the one I liked the looks of.  That's how I roll.

We took Janey after school last night for her physical with the new doctor.  Things in the waiting room did not go well, to say the least.  Janey thought she was going for a ride, a nice long ride with lots of music, although we of course told her she was going to the doctor.  But when the reality of that hit, she screamed.  She screamed for the whole half hour it took us to be put in a room.  Then she screamed in the room.  She stopped a little while they took her height and weight and blood pressure---she likes that.  But she resumed screaming after that.  This wasn't the fault of the office.  Monday night is a busy time in a doctor's office.  I hadn't realized that.  And they were very sweet to Janey as we waited for the doctor, but Janey was not happy to be there.  We kept reassuring her this was NOT the hospital, she WASN'T going to stay overnight---but I am sure there was some flashbacks for her that weren't pleasant.

And then the doctor came in, and I somehow knew immediately we'd gotten lucky.  I liked her right away.  I loved how she addressed Janey directly, asked what she liked to be called, said she was sorry sincerely for the wait, noticed within a minute the main thing I'd been worried about (that Janey's spine seems curved), examined Janey quickly but thoroughly, was there for any questions, and emphasized over and over that we could call her about anything, any time.  She was warm and caring and just exactly what I had been looking for.

Janey calmed down while she was there and took to her right away, which is not the case with everyone, that's for sure.  Everything went well, until of course shot time.  Somehow Janey had gotten a little behind on shots, and in fact had never somehow had the 2nd chicken pox vaccine she was supposed to get a while ago, so she needed 3 shots.  Two nurses came in to give them to her.  We held her down, probably more so than at first the nurses thought we needed to, but the minute she got sight of the needles, she screamed and tried to bolt, with amazing force and suddenness.  They were startled!  We managed to get her held again, and she didn't seem to mind the actual shots at all.  We left feeling good about the appointment, although drained.

So now, we have to get an xray to see if Janey has scoliosis.  I hope she doesn't, of course.  We also discussed various options for dealing with PMS, if that becomes a problem---we've just started down that whole road.

I'm glad we made the doctor change.  It's hard sometimes, not just with doctors but with people in general, to accept that not everyone is going to embrace Janey, but it's a fact of life, and I understand it.  It's up to us to keep working to have as many people in her life as we can that do embrace her.

The kind of autism that isn't talked about

As a lot of you might already have done, I read this essay recently.  If you haven't, you might want to read it.  (Link here)

I don't agree with everything said in the essay.  I don't agree that more awareness necessarily would result in less isolation and less lawsuits.  I don't quite agree with how depressing a picture is painted in terms of the numbers of non-talked about kids with autism.  But those are little things.  In general, I agree very much with what is said here, and I applaud the author, Bonnie Zampino, for having the courage to say it.

And I ask myself, why?  Why is there so little awareness or discussion about the type of autism this author's son has, and my daughter Janey has, and so many of the people who read this blog have children with?

I can think of a few reasons.  One is that most parents don't like to present their kids in less than flattering lights.  I'd far rather write a post about some step forward Janey has taken than write about parts of the everyday that are far more depressing---the fact she is 11 and not toilet-trained, the fact she screams and cries part of most every day, the fact she bites her arm so much it has a permanent scar, the fact her communication skills are so poor she suffered with a burst appendix for three days without treatment, unable to tell us how she felt.  I want others to love Janey as I love her, and I am always conscious of not making her "look bad".  And I don't want to appear to be trying to make people feel sorry for me.  I'm very aware of that.  I want people never to feel I am looking for sympathy.  That's my own issue, but I think it affects other parents too.

Another reason the tougher side of autism isn't presented more in the media is because it's not a feel-good story.  I read something recently about those ads on TV trying to get you to sponsor a hungry child, and how they don't generally show starving children.  They show cute, somewhat thin children in piles of trash.  People tend to tune out if they are overly depressed by what is being presented.  It's a lot more appealing (and probably gets higher news ratings) to show the kid with autism winning a spelling bee, or going to the prom, or playing the piano perfectly by ear than to show a child biting themselves or others, or screaming for hours, or banging their heads.  People would be upset by that, and tune it out, most people anyway.

Also, I think people like stories with a villain.  I think that is a lot of why the whole unproven autism/vaccination story had far, far more than its 15 minutes of fame.  It's a villain story--the evil government and medical community poisoning our kids into autism.  The fact that in the vast majority of cases that is not what happened doesn't take away from it being a good story, one that celebrities latch onto.  I've heard that some groups go as far as saying there aren't any adults with autism, because that muddies the story---if autism wasn't caused by too many vaccines, how could those adults have gotten it?  A child with a severe disability that just seems to sort of happen isn't a story we can feel outrage over.

The reality of children like Janey is something that people are not prepared for.  I've had the experience a few times that I am sure a lot of you have had, when Janey is met by someone who hasn't before met close up a child with autism, the experience of watching their expectations crumble.  They expect to be charmed by her quirky and interesting take on life, to form some kind of pure and beautiful connection with an otherworldly, unique child.  When they are faced with the real life Janey, most likely screaming and biting herself, maybe wet from a soaked pull-up, not answering questions or showing any interest in them, or perhaps showing too much interest, wanting them to play a clapping game for an hour on end---they get the stunned look.  I have become very familiar with that look, the look of someone realizing for the first time what autism really looks like.

It would be fine for most of the world to continue to have their sanitized view of autism, if that didn't mean that they weren't preparing for a future with a lot of Janeys in it.  Whenever people vote down money for group homes or moan about how much is spent on special education or continue to support organizations that give almost no money for actual direct care of the Janeys out there (yes, Autism Speaks, I'm talking about you), they are building a world that is going to be in for a huge surprise when someday, the Janeys are no longer able to be cared for at home.  People like Janey exist.  They are out there.  They matter.  I am going to try hard to be one of the voices that DOES talk about the other autism.  It's what I can do, from this little corner, tell my own story and hopefully, be a voice for Janey---my  beloved daughter with the kind of autism that isn't talked about.

Chocolate---or why I don't discount anyone's theories...

Usually, getting to sleep is not a problem for Janey.  Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night.  She usually does it herself.  Bedtime rolls around, she gets in bed and goes to sleep.  It's that easy.  Last night, though, something was off.  Bedtime came and went, and she was rocking and rolling and hyped up.  We tried over and over to get her to settle down---no luck.  Finally, ten o'clocked rolled around and she finally dozed off.  Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered.  When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut.  There we had it, the culprit.  We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep.  It's only chocolate that does this.  She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M?  Forget it.

Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism.  The chocolate thing seems on the face of it to make little sense.  Why only chocolate?  Why such a tiny amount?  It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate.  And again and again, we see the results.  This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances.  And why, although I don't think my children were affected badly by vaccines, I am sure that some children were.  And the list goes on and on.  I truly don't think autism has one cause.  It has lots of causes.  I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard.  I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune.  This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones.  Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family).  All autoimmune problems, and there are more in our extended family.  The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one.  Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time.  Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why".  But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism).  If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.

I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines.  You love your child, and you also want to help others.  When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures.  I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey.  I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine.  That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child.  We are both right.  We know our kids.  We have to all work together, no matter what got us to this autism life.

The books I can't write

Once in a while, someone suggests to me that I write a book about Janey.  It's a flattering thing to hear, and I have considered it now and then.  The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories.  In thinking about this today, I came up with these four types of autism books....

1.  "How I Cured My Child's Autism"  This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely.  Happily Ever After.  The books starts with a few chapters of the horror of the early years, the shock of the diagnosis.  Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.

This is not going to happen to Janey.  I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles.  It's not going to happen.  Janey will be autistic for good.  There isn't a cure out there that will fix her.  I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis.   Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.

2.  "How The Cruel System Failed My Child"  Not as common a category, but I've read a few.  This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child.  I can't write this book, because that's not my experience.  I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey.  They want to help her as much as I do.  I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care.  I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are.  But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.

3.  "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism"  This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things.  I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story.  I don't know what caused Janey's autism.  I don't think it was any one thing.  I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet.  But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic.  I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now.  So that book is out.

4.  "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life"  This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child.  The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem.  Well, I can't write this one at all.  I don't think anyone who spend much time with Janey could.  Life with Janey is not poetic.  It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes.  It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again.  There are wonderful moments with Janey, yes.  I love her beyond words, yes.  But it's doing a disservice to pretend her life is somehow a life we all should strive to live.  It's doing her a disservice most of all.

The book about Janey, the one I will probably never write, is full of uncertainties.  It's full of working for years for her to be able to write a J.  It's full of devoted people that non-the-less often become discouraged by the reality of Janey.  It has no shortage of theories about her autism, but no answers.  It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about.  It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life.  It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.

What Made Janey Autistic #2 in a series

I want to say before I start this entry that I am not a doctor, obviously, and I am using medical ideas to write this that I have remembered along the way.  Please don't take them for hard facts, as they could be wrong!  What I'm trying to do here is give my thoughts based on what I've read and heard, which is I think what we all try to do with figuring out this autism bit!

That said, my theory #2 of what caused Janey's autism is that autism is an autoimmune disease, and our family is for some reason heavily prone to autoimmune diseases.  As I understand it, an autoimmune disease is one in which the body's own defense mechanisms get overactive and attack the body they are supposed to be protecting.  The idea is that something triggers the body to start attacking the brain at some point, causing autism.  It could be some little sickness we can't even remember the child having, or some other trigger that is impossible to figure out.

Our family tree is full of examples of diseases that are at least in part autoimmune.  I have a pretty much non-functioning thyroid and have to take large doses of thyroid replacement every day.  I also have asthma.  When I was pregnant with 2 of my 3 kids, I had pre-eclampsia, which is thought to be another AID (auto-immune disorder, so I don't have to keep writing it!)  Tony is an insulin-dependent diabetic, a type that is kind of a cross between type one and type 2.  Freddy has asthma like me.  My mother has Raynaud's Disease.  My sister, my mother, Freddy and myself all have pretty severe seasonal allergies.  My sister had thyroid cancer.  My uncle and grandmother had or have disfunctional thyroids, like myself.  Almost everyone in Tony's family has the same kind of diabetes he does---his brothers, his father and many aunts and uncles and cousins.  The list could go on and on.  We are poster kids for AID.

One, someplace, I read that another sign of being prone to AID is when the MMR vaccine doesn't take as a child.  Both my sister Carrie and I were tested when we were at child-bearing ages, and were found to be not immune to rubella, and had to have another shot.  Our immune system fought off even the vaccine dose as kids, and didn't therefore get the immunity.

The AID-autism connection just makes sense to me.  You aren't born with AID.  Something triggers them.  That would explain why kids develop autism as they get exposed to more things in the environment.  Some people are pre-disposed to AID---not every kid is going to be triggered to be autistic.

A weird thing that also seems like a connection to me is how rarely Janey gets sick.  She doesn't get the colds or flus or viruses that go through her classes.  She's missed almost no school days due to illness in years.  William, who was originally also thought to be on the spectrum, is the same way.  Freddy gets everything that goes down the pike and more, so it's not just a family trait to not get sick.  I think Janey's immune system is overactive.  She gets rid of any illness that comes around, and does so overactively.  I can see how at one point, something might have triggered her body to go all out on attack, and mistakenly went for her brain, too.

As with the pregnancy/fever/flu theory, the AID theory could easily explain Janey's autism.  I wish it were the last thing that could, but there's more!  #3 in this series is coming soon.

Easy ways to avoid having a child with autism

So you are thinking of having a child, and would like to have one free of autism? Well, you've come to the right place! I've got your easy plan right here! Just follow these instructions and you might well become the lucky parent of the latest autism-free model child!

First of all, you need to make sure you are creating this child with the right person. Take a good hard look at both your pedigrees. Is there anyone with autistic-like tendencies there? Any secret Thomas-the-Tank-Engine lovers? Genetics is one of the possible causes, you know. Assuming that every last one of your ancestors are free from any suspicion of secretly autistic traits, then take a look at the age of the male of your couple. It's a rare case where the woman seems off the hook, but if the male is an older father, it's thought that almost all the new weird genetic mutations that might lead to autism come from his side of the contribution. So you might want to trade him in for a younger model. The other factor you want to check both sides for is the presence of autoimmune disorders, which might play a role in autism. Any diabetes, asthma, arthritis, thyroid disease, lupus, MS, stuff like that? No? All set there? You are ready to get pregnant!

Now there are just a few rules you must follow when pregnant. First of all, don't get sick. Fever during pregnancy is thought to be a culprit. It might be good to isolate yourself all during pregnancy to avoid that. Next, look long and hard at medication you might take. Ask your doctor. Your doctor might say whatever you are taking is just hunky-dory, and then a few years later it's discovered that it isn't. But doctor's orders! So if you take any medication at all, you might want to go back a step and not get pregnant to start with. Avoid being overweight. Avoid getting pre-eclampsia. Avoid being stressed. Avoid getting pregnancy-induced diabetes, or any thyroid problems. Just to be safe, have a picture-perfect pregnancy in all ways.

Now---during the birth. Don't have any birth trauma or lack of oxygen. Don't have your baby prematurely. Hold them right away and let them know how welcome they are. Most people don't believe autism is caused by "refrigerator mothers" subconsciously rejecting their babies anymore, but you know how those things swing back and forth, so avoid ever thinking a single negative thought about the baby.

Now it gets tricky. There's the vaccine question. Science doesn't seem to back up that vaccines or mercury in vaccines cause a problem, but many mothers and blogs and celebrities think it does, so you'll have to decide on that. Make sure the baby doesn't get any infections soon after birth, viral or otherwise. Some people think lately autism is caused by an over-clean environment not teaching the body some early immune responses, so be reasonably casual about germs, but of course, that's subject to change at any point, and if it's later decided dirt causes autism, you'll never forgive yourself. Lack of vitamin D is one theory, so live in a sunny climate. Too much rain could be a problem, so if you get hit with some long rainy spells, move. There's the whole possible diet connection, with lactose and gluten being suspected as problems. Who knows, but why not just never serve any of them to be sure? Early TV could be a problem, so get rid of your set.

And of course, if your child STILL is stubborn enough to show even the slightest autistic trait, you want to nip it in the bud. Have your child screened for autism starting at birth, probably every week will be enough. If you see the slightest sign of it, start ABA about 100 hours a week immediately, until your kid is so normal they could be a model for normalness.

And you know of course this is all very tongue in cheek. I've just been reflecting a lot lately on how the almost daily new ideas about what causes autism must put through the heads of someone determined to do all they can to give their kids a good head start, a nice autism-free life. And the moral is, of course, you can't do that. You could do everything possible known right now, which would result in some crazy doings, and in a few years, it could be determined that everything you thought right was wrong. We just don't know what causes autism. There probably isn't any one thing that causes it. So do what you feel is best. Do what you yourself decide is healthy and reasonable to do. Listen to a good mainstream OB/GYN or pediatrician. Use your own judgement. Don't listen to what bloggers say, including me.

And if, all else failing, you do end up with an autistic child, I'm here to say it's not the end of the world. You aren't a terrible person for somehow not being able to prevent that happening. You are a parent that like many parents from the beginning of time, were dealt a tough hand, but you will deal with it. Your child may not take you to Holland, but they will give you moments of extreme joy along with the hard times. Congratulations on your child, autistic or not.

What causes autism? And does it matter?

Well, of course it does matter, but by that, I mean does it matter to children and families already living with autism? It certainly matters to those future children who could potentially be prevented from becoming autistic if we knew what was causing it, but in a lot of ways, it doesn't matter much to Janey, or to me, in terms of our day to day life.

That's not to say I don't wonder, but I can't say I think a huge amount about it. That's been hard lately, as every single day, it seems, there's a new article out there with a new potential cause. They can't all be right, or maybe they can---I do think autism is caused in different ways in different kids, and they might ALL be a cause. But that leaves more answers than questions if it's true---which one caused MY child's autism? And it opens up the feeling that I think probably almost all parents of a child with autism have had---"it's my fault somehow" I know rationally it isn't. I don't take the credit for Janey being so beautiful, or my sons being quite the bright guys, or for William being musical or Freddy being a good actor. I don't take the blame for Freddy's health issues or any character flaws either of them might or might not have. So it stands to reason I shouldn't take the blame for Janey's autism, and in general, I choose not to.

But the list goes on---genetics, vaccines, older fathers, close spacing between children, overweight mothers, medication taken during pregnancy, mercury, thyroid problems during pregnancy, pre-eclampsia, ultrasounds, low birth weight, lack of oxygen at birth, diet, autoimmune disease, viral infections, brain defects, rain, too much TV, Tylenol...well, a huge amount of things. A fair amount of the list applies to Janey, making me think it would probably have been more of a surprise had she NOT been autistic, almost. But of course that's not the way to think, and it shows the problems with a lot of those theories---why don't ALL kids with those risk factor become autistic? Obviously there must be more than one factor at work in most cases.

If I personally had to guess about the cause of Janey's autism, at the current time I'd put three factors in the most likely list. First is the autoimmune disorder idea. Almost everyone on either side of our family has some kind of autoimmune problem. This goes along with factor two--preeclampsia. I was severely affected by this during my first pregnancy, and was to a fair extent while pregnant with Janey. My third thought is the severe reaction I had to a blood pressure medication I was given at 12 weeks while pregnant with Janey. These three factors all tie together. But who knows, really? I think most of autism is probably like that---caused by an interaction of factors. This is why I try never to get into the fray of arguments about what causes autism. I think everyone is right and everyone is wrong. Some cases of autism probably are caused by vaccines. Some are caused by genetics, some by birth injury. Most by a mix and match list of many factors.

But the end result, no matter how you get there, is autism. It's like the stupid Holland story. No matter why you ended up in Holland instead of in whatever country you were aiming for, you're still in Holland. I'm content to let the research and battle over what caused Janey's autism fight on without me joining in. My fight now is to give her the most meaningful life I can.