Blinded by Science - Part 1

SCIENCE!!!

“Do not worry about your problems with Mathematics, I assure you mine are far greater.” - Albert Einstein

Take Einstein's quote, insert the word Science in place of Mathematics, and you're at the crux of my problem.  I'm not a scientist.  Thank GOD the "far greater" problems (quotes are there not because I'm implying their problems aren't in fact far greater, but because it's from the Einstein quote above) scientists face in studying something are not the problems I face as a non-scientist.  And, while I graduated with a Bachelors Degree of Science in Chemical Engineering, let's face it, I was drunk 50% of the time I was in college and copying off fellow students' papers the other 50% of the time.  I possess a decent working brain and understand rudimentary scientific process, and the fact is I have some worries about the science of autism.  These are not the worries of a scientist.  These are the worries of a parent who is trying to get his daughter the best care he can.

My current worries about Science:


1)  How to determine what treatments/therapies/diets/etc. are backed by science.
 While my understanding of the science of autism research is not what worries me, my understanding of how to interpret its results is.  Why?  Because scientists tell me that the best, most effective treatment for my daughter comes only from those treatments backed by solid scientific data.  So how do I determine that?  yes. . . yes. . . I know. . . Testimonials are not the same as Data.  Stuff like that helps. . . but I need more. 

2)  How to determine whose science is real science.

So.  Who tells me, the primary caregiver, which treatments are or are not backed by solid scientific data?  Scientists?  My pediatrician?  That in itself is a problem.  "The Tale of Two Scientists".  The easiest and most polarizing example of this for folks sympathetic to autism issues is of course, Wakefield vs. The World.  Or Anti-vax vs. Vax.  Leaving all the conspiracy theories. . . drug companies, corporate greed, government cover-ups, etc completely out of the equation, we're left with a group of scientists who made a claim, and another group of scientists who later disputed the claim.  And yes, I know all about what happened to Wakefield in the . . . heh. . . wake of it all.  It doesn't change the fact that as a parent, I can't even begin to tell which scientist is credible and which is not.  How do I do that?

3)  How to understand what constitutes an effective scientific study.
I have read descriptions of treatments that claim to be backed by science that have been ADAMANTLY  refuted as quackery by scientists.  When I look at the claimant's study. . . it looks very sciency.  (Totally a word).  I need to better understand how to read the studies themselves to determine WHY the study was quackery.  The most recent example I can think of is the Mercola study with the National Vaccine Information Center.  I read a review that sliced and diced it.  It was shady, it was shifty, NVIC was in business with Mercola, the participants were being treated by Mercola using Mercola's products. . . how could this study be "Scientific".  And yet, as a parent, looking at it from the outside. . . I have no knowledge of the participants, or the relationship between NVIC and Mercola.  To ME. . . it looks sciency!  Are there things I can look at to see that things were done right?  Buzzwords like double blind, control, group sizes, peer-reviewed journal, etc?


4)  And while we're on the topic (see above) how can I tell what's a reputable peer-reviewed journal, and what's trash?  Because I've seen criticisms of studies that were nothing more than "it came from (implied scoff) The Journal of Insert Technical Sounding Title, so you know it's crap".  All those journals?  Yeah, they look the same to me.  What are the 'reputable' journals?


5)  How to understand whether I give a shit whether the study is sciency or not.  Because, let's face it, before ANY of these studies were backed by science, there was someone who was using them to treat kids with Autism, and at that time, they were NOT backed by science.  I think as a parent this one is one of the toughest and most guilt-filled decisions:  Deciding to attempt a treatment even though it hasn't been "adequately" studied.  Whose fault is that?  The lack of science doesn't necessarily disprove the treatment, it just means more study is needed.  I want to make the "right" decision, but science is telling me that the right decision is only to use treatments with proper scientific data backing them up.  And what we, as parents of kiddos on the spectrum know, is that time is of the essence.  So it's not like I can really afford to wait around letting my child's best, most treatable years tick away while scientists reach their conclusions.  Or can I afford NOT to wait?  If I decide to try a treatment or therapy or participate in a study with my daughter that later turns out to be (hindsight) backed by science, I just bought that much more time.  If I decide to try a treatment with my daughter that is later debunked by science, I'm the rube who wasted valuable therapy time on quackery.


Science is heady stuff, and scientists are a snobby and defensive (but ADORABLE) little group of know-it-alls.  No offense, scientists, but you know you are.  Hell, it's practically a point of pride.  When I read some of the stuff you write I think, "Wow, these people are really bright!"  And then in the next paragraph I read this same seemingly brilliant person poo-pooing the right of someone to criticize a study or therapy not based on the merits of that person's comment or criticism, but solely because that person lacks an advanced degree in that specific field of study.  When it comes to choosing care for ourselves or for our children, it's too important NOT to have an opinion and/or take a stand, and none of us have time to go get that doctorate in neurology just so that we are then welcomed to the debate on the efficacy of the treatment du jour.

"I don't believe it!
There she goes again!
She's tidied up and I can't find anything!
all my tubes and wires
And careful notes
And antiquated notions"

What I'm hoping I can generate from this blog, on its very own page (I'll assign a new tab to it after it's been up a few days), is a list of sciency links.  I have some already.  And I don't mean sciency bloggers necessarily, although I'll certainly post those as well.  I mean links to trusted sites that compile treatments or therapies that are (in the eyes at least of some scientists) appropriately sciency.  I don't intend to provide a database of what is or isn't. . . just links to resources to help me (and you, if you want) find out which studies make the cut, or perhaps links to "how to" posts that help you, a non-sciency parent, make sense of the data. 


I don't know how much I'll break it out, categorize and subcategorize, etc.  So I'll sort of play it by ear right now.  I don't have the answers.  Just lots and lots of questions.  I'm hoping you folks in the blogosphere can help me with this.  I know I'm still new to this autism parent blogging thing, so I'm worried I won't get the sort of feedback I'll need, but it's definitely worth a shot.


We need all the help we can get.

Weekend Update

I don't love Thanksgiving.  For starters, I don't love turkey, and I'm pretty tight-lipped with my emotional from-the-heart givings of thanks, so an uncomfortable holiday centered around a meal I'm only lukewarm about. . . it's nothing I want to devote a lot of time and attention to with a few exceptions:

Sorry about your car, but at least the McRib is back!

1)  Sometime on Tuesday evening, a tanker truck carrying black driveway sealant spilled its contents across a 39 mile stretch of the Pennsylvania Turnpike.  I was watching the news on Wednesday morning, mouth agape, as I saw pictures of what it did to people's cars.  When I left for work that morning, they said at least two hundred cars had been affected.  Most, if not all, were traveling to some Thanksgiving destination, and had to stop.  What a monumental fuck up.  The Turnpike authority blamed the trucking company.  I'm sure the trucking company will blame whoever loaded the sealant.  I'm sure they'll all look for insurance to cover it, and, as I watched, i couldn't help thinking. . . all those people are stuck paying for ALL of it, until the dust settles.  Nightmare.


2)  Mississippi cousins visited, and it was really nice to see them again.  My recently wedded sister-in-law and her husband came down, and it was also great.  Some highlights:  visited downtown, ate out, ice skated, roller skated, had Thanksgiving. . . some lowlights. . . lots of people, lots of activity and autism, not a super mix.  Honestly though, up until about 8 o'clock at night on Thanksgiving, Lily did great.  She started to spin a little out of control as the evening went on, and she has a tendency to kick my in-law's dog (okay, not so much tendency as uncontrollable need) but all in all she was very good.  The iPad, and all the one-on-one attention from her cousins and aunts and grandparents really helped.


3)  Lily has been using some really great appropriate language lately.  Her potty training seems to have stumbled a bit lately, but her special ed teacher offered that sometimes when her kiddos see a change in expectation/priority (we had prioritized potty training before Lily started Kindergarten in the Fall) they see some great advancement in the new priorities at the expense of some of the old ones.  She feels like Lily is doing a great job in class, but has seen a drop off in her toileting.  That's sort of a wash, I suppose.  Some of the things she's been saying:


Emma and Lily:
"Are you okay, Emma?"
"Yeah, I'm okay, Lily.  Are you okay?"
"Yeah, I'm okay."


The next few have been going on more frequently since we started playing with her AutismXpress app.  it has 12 faces on it, each describing a feeling.  She pushes the button and they get big and make a sound and animation associated with that emotion.  She perseverates over it.


Me to Lily:
"Lily, are you happy or sad?"
"I don't know, Daddy."

Emma, look at me.  Are you happy or sad?

Emma and Lily:
"Emma, look at me, are you happy or sad?"
"I'm happy, Lily!"
"Oh that's good, you're happy!"


"Emma, are you happy or sad?"
*silence from Emma"
"Answer the question!"

We hosted guests at our house, so I had an inflatable Queen size mattress in the basement.  I decided to let Lily and Emma loose on it before I deflated it and put it away.  It was such a hit, I'm not sure I'll EVER put it away.


"Daddy, it looks like fun!" followed by "Daddy, you want a turn?"


Lily drools, especially when she gets stimmy. . . or spitty, since her stims often involve her blowing raspberries.  But she'll wipe her mouth off if prompted.


"Lily, can you wipe your mouth please?"
"Oh, I'd be happy to."


And finally, her sister left to go upstairs to tell her mother something before returning.


"I want Emma."
"Well, you're in luck.  Guess who's back?"
"Oh, Emma!  Emma came back!"


It was all very cute.  Then she peed her pants.  Not really.  But it brings the whole appropriate speech vs. potty training theme I was going with full circle, so it makes my point seem more cogent if I say that.


4)  We got two trees up.  One is full decorated and the other is lit, but undecorated.  Within 10 minutes of being introduced to the newly decorated tree, Lily had three ornaments on the floor.  After "parenting" that frequency dropped down significantly.  Distraction, timeouts, trips to the aforementioned inflatable bouncy mattress-o-fun in the basement. . . whatever it takes.  Only four more weeks. . .


There was other stuff, some of it awesome, some not so awesome.  It was a very busy weekend.

Mall-y Old Saint Nicholas

Way back when this blog was new and shiny I posted a question about autism charities worthy of my tax credit contribution.  The overwhelming responses I got (not necessarily indicated by they underwhelming number of comments) were 1)  don't give to Autism Speaks and 2) find a local charity more directly involved with the autism community.

Lydia over at AusticSpeaks suggested A.B.O.A.R.D.  I had given to them the previous year, and they are local, and they had helped Lydia (who is also local) personally, so I felt like that sort of sealed the deal.  I gave to A.B.O.A.R.D.  They send out a weekly (or so) newsletter to contributors.

Within about a month of my donation, I received an announcement from them via their newsletter (sent to everyone on their mailing list).  Don't bother reading through it, the title pretty much say it all.  The mall was closing, but leaving Santa and his helpers in place, dimming the lights, providing activities, leaving the play area accessible and giving time slots for Santa pictures all to spectrum kiddos who registered.  

My wife got a similar email and we took turns sending each other identical emails saying what a good idea it was and asking each other if we thought it could work.

We agreed we wanted to get Lily to see Santa, and this looked like an awesome way to do it.  A day or two before the event, my wife called ABOARD (i'm not typing the periods anymore) and found out that all 50 of the time slots were all full, but to come anyway and talk to them and they'd see if they could get Lily in to see Santa.  We're such slackers.  I don't know why neither of us read about the registration.

Don't you touch my puppy or I'll cut you.

This past Sunday was the big day.  When we showed up, we got a number, 37.  That's a big number.  We were there about 15 minutes, listening to the story being read by a woman from . . . well I never found out where she was from, but she had a giant fuzzy bear with her so I figured she was probably going to be okay in Lily's book.  Lily didn't want to sit, and wasn't particularly interested in the story (although it's one we read to her on occasion about Curious George visiting a hospital on Christmas) but she digs furries.  

We hung out on the mat for a bit, dancing and spinning and occasionally revisiting our lounging bear friend, until it became apparent that additional entertainment would be necessary.  While my wife (have you noticed I never give her name?  It's a privacy thing, but honestly, you'd think I'd just ask her if it was okay and get an answer so I could include it wouldn't you?  I never remember to ask.  She follows the blog, maybe she'll read this and tell me) and Emma checked out the crafts, I took Lily to see the train, the malls version of the Polar Express (which wasn't running that evening).

At the train we walked back and forth from the engine to the caboose.  I asked her what color it was and tried to get her to count the cars (four) and identify engine/caboose etc.  She says caboose so friggin' adorably.  

ENGINE!!!!!

"Let's go to the caboose, Lily!" 

"CABOOOOOSE!!" *run run run*

"What color is the caboose, Lily?"

"It's geen, caboose is geen!"

"Good job!  Let's go see the engine now!"

"ENGINE!!!" 

"How many cars are there on the train?" *silence* "One. . . "

"ONE!"

And so on. . . 

After we'd played that game out, I approached the line with my ticket and asked how far along we were.  

"We're calling 12, 13 and 14 right now," was the reply.  

Oh.  Oh dear.  So we made our way over to the play area.  We were the first family to utilize that particular time killer, but were quickly joined by other families in the high twenties and low thirties (ticket numbers, not age. . . well. . . maybe both).  

Emma and Lily walked up the steps of one of the play bridges (meant to approximate the bridges over the three rivers here in Pittsburgh) and slid down the other side countless times.  Each time Lily climbed she would stand and chatter happily at the top of the bridge until Emma would prompt her, "Okay, Lily, time to go down the slide," at which time she'd dutifully plop down, slide to the bottom, then spin around, run to the other side of the "bridge" ascend once more, and wait for prompting.

A family with an NT son and AS son arrived a bit later.  It was cute the way their interractions mirrored Emma and Lily's.  The sons were older than our daughters were, but the NT son stuck really close to his AS brother.  He may have been 14 or 15.  The spectrum thing struck me then.  He seemed really coordinated to me.  He was running all over the place, jumping and somersaulting down the slides and steps, gracefully, even acrobatically.  He was so much more developed than Lily from a gross motor perspective, but he was completely nonverbal, and eventually (after much running around) he got a bit overstimulated and you could see him shrink into himself.  He became visibly upset, his face a mask of sorrow, and his parents asked him if he'd had enough and wanted to go home, and he signaled his assent.  They tied his shoes and he sat in a stroller.  He was completely wiped out.

It's just such a huge autistic world out there.  This kid was SO different than Lily.  As they left, the boys' mother gave me their ticket (we'd compared numbers when they joined us, they were 32).  My wife had taken the kids up to the bathroom while I held down the fort (purses, pink sling bags, coats) and I texted my wife that I'd meet her back at Santa, because a few moments earlier one of Santa's elves had been looking for "28" so I knew at 32 we were getting close.

Maybe we weren't as close as I thought, but we weren't TOO far off.  Emma crafted a letter to Santa on behalf of Lily and herself while Lily and I returned to the train and waited.  "31" was a gigantic group of kids from one of the local special needs schools so they took forever.  "28" had never been found.  We were next.  I tried to get Santa's helper to let us fill out the paper work BEFORE our turn but to no avail.  If I have any complaint with the process it would be that. . . kids on the spectrum/ADHD/whatever. . . let the parents fill out the paperwork before hand, because we had at least 45 minutes, then there are no stumbles at the finish line. . . the promised land. . . The North Pole in Pittsburgh.  BUT. . . Lily was a champ.  No stumbles there.  Just sayin'.

Sir, please remain a respectful distance from Mr. Claus

And take a look at this badass Santa.  Every year the Ross Park Mall gets a kickass Santa, but this Santa is the best I've seen.  

Santa Checklist:

Real snowy white beard - check

Eyes, how they twinkled - check

Dimples, how merry - check

Cheeks like roses - check

Nose like a cherry - check

etc.

Finally we were in the home stretch.  Lily's biggest issue was being confined to Mr. C's lap.  She was not afraid of him, and she honored his personal space enough not to tug on his beard (although she did give the little snowball tuft at the end of his hat a tug once or twice).  

After they sat (and the professional photogragher got three pictures from which we selected) Emma bent Kris Kringle's ear about puppies or some such while Lily, freed from his lap, orbited in fascination until Emma got down.  

When it was time to go she told him (prompted) "Merry Christmas" and (unprompted) "I'll see you soon".

The money shot.  Is. . . is that appropriate in this context?

On the way out we sort of let Lily walk ahead of us; pointing the way, and letting her go.  The mall was closed so there was ZERO mischief she could get into.  At one point Emma started laughing and saying "she is SO far ahead of us" and indeed, she had like an 1/8 of a mile head start on us.  I ran to catch up.  Lily, seeing me chasing her, ran to get away.  Emma and Lily and I went tearing ass off through the mall, giggling like maniacs until I finally collected her, whooshed her off her feet, then set her back down like an already spinning top, to tear ass off again, while my wife sauntered unconcernedly down the length of the mall.


When she finally caught up, I left Lily to her while Emma and I approached the exit.  I tried to get a picture of this, but failed.  Emma and I stood at the entrance, which goes west about 50 yards before T'ing with the rest of the mall. . . left (south) is Macy's, right (north) is the mall at large.  Standing at the exit, looking back, Lily was running away from her mother towards Macy's, giggling.  Her mother was looking at us, also giggling, running after her.  Then they disappeared around the corner of the T, before re-emerging, Lily again in the lead this time running north, my wife again trailing. . . still giggling helplessly.  *DING*  like a duck in a shooting gallery, reversing then *DING* re-reversing AND SO ON!!!  This must have happened like five times.


At first I thought she was playing with her.  But Lily was legitimately eluding her, like when Scooby and the gang are getting chased by the monster, and they keep emerging out of different doors sometimes being chased, sometimes chasing, until they all crash into each other in the middle of the room, and they pull the mask off the monster and the guy underneath says "And it would have worked too if it wasn't for these darn kids!"  Only they didn't crash.  My wife needs to get on the treadmill, or Lily is a future Olympic sprinter, because it was PATHETIC how long she was able to stay just out of her grasp.



The whole event was very cute, and really our first time capitalizing on an event in the "community".  I embraced it as an opportunity to do more than pay lip service to my acceptance of all of this.  It occurs to me from time to time, that the same sense of community I feel reflected in the people who comment/read this blog, and whose blogs I, in turn, comment and read also exists in "real life" (no offense intended, I'm aware you are all real as well).  And that the enjoyment/encouragement/support as I get from the people here (in this blog) exists "out there" in my community, down the street, at the mall, wherever.  So this was nice for me.  I'm much more outgoing here than I am in person, so it was a small step, but maybe next time at the next event I'll recognize the family who gave us their number and give them a "hellooooo" and offer the secret Autism Handshake and chat them up the way I chat you people up.  Seems reasonable, right?

The event was nicely done and organized.  I already feel good about having given to a charity that is involved directly in the community and helping kids with autism develop and have fun, adults with autism cope and get jobs, and parents of kids on the spectrum, participate and feel less "judged".

Emma sometimes complains when we split the kids up one kid per parent, to their respective events.  She likes when we're all together as a family.  This was a great chance to do that.  She loved seeing how Lily reacted to Santa.  And she was so proud of her for not yanking his beard, spitting in his face, or poking his eyes out (she is TOTALLY on the "Nice" list now).  

It was comfortable and fun and I never even ONCE looked over my shoulder to see if I needed to scowl malevolently at some douche for judging my daughter for spinning and dancing or judging me for allowing it.  That alone was worth the trip.