Friday
Apr062012
Autism 101
Friday, April 6, 2012 at 10:21PM Originally published February 16, 2009
Enough people have asked me for this information that I’m going to publish it.
My story is valuable to people who are just starting out on this journey, and I’m just going to tell what happened, with these warnings:
I don’t care if you don’t believe me.
I don’t care if your doctor says I’m wrong.
I don’t care what the newspaper article said about how this doesn’t work, and it’s all bad science.
I don’t care that this diet is too hard to follow and you can’t do it. If you care about your child, and he needs this, you’ll do it. Having a kid with autism is hard. Changing your diet is inconvenient. Having a child recover from autism is miraculous and life-changing.
If you add nasty comments, I will ignore them.
Please be nice. I’m just telling our story, and trying to help. I’m not selling anything, I’m not a doctor, and I’m not crazy. I’m a mom who really didn’t expect to be here, and I’m one of the really, really lucky ones.
So, here, in a nutshell, is our story:
Sander was born in November, 2004.
He was almost nine pounds, happy, healthy, and amazingly strong. By the time he was two months old he was almost sleeping through the night -- miraculous after our first one, who never slept!
I took him on a trip to Houston when he was ten weeks old, and no one could believe what an easy, happy baby he was. Neither could I!
When we got back to Virginia, which is where we lived, I talked to the doctor about vaccinations. I was worried because Sawyer had had a bad reaction to one of the shots, and allergies run in our family and I wanted to delay some of the shots.
Fine, the pediatrician said. He has to have at least the DTaP -- Diphtheria, Pertussis and Tetanus.
So I got the shot and left.
The child didn’t sleep again for two years. Neither did I.
Within a couple of hours, I knew I’d made a huge mistake.
Huge.
Sander started screaming, and didn’t stop. Cried that entire night, and the next day, and the next. Started doing all sorts of weird things when he nursed -- arching his head back like he was in pain, spitting out milk, not nursing at all. Had weird, hard, rabbit poop, or black tar, or no poop at all. In the next three weeks, I was at the doctor’s office five times.
I got:
“He’s teething. He has an ear infection. Yes, teething is normal in a two-month-old baby. Yes, even though he’s not getting any teeth. Don’t know what to tell you about the poop. He’s fine. I don’t know why he’s arching his back like that or why he won’t stop crying. Maybe it’s colic. He’s fine. You need to stop worrying. And no, there’s no way it could be connected to the vaccine. Besides, that was a week ago!”
So.
I had a baby who was a sobbing, miserable, mess, and he was obviously in pain. The doctors honestly didn’t have a clue, and they didn’t listen to me. I absolutely KNEW, from that day forward, that something was WRONG.
I went to a lactation consultant. “Maybe you’re making too much milk.”
Tried another one. “Maybe he has digestion issues.”
Went to a witch doctor. “His stomach hurts. Have been giving him Motrin or Tylenol?”
Well, yes, as a matter of fact, I had (in fact, one of latest studies shows that giving an infant Tylenol after a vaccine increases the risk of autism. No one yet knows why.)
So the witch doctor (homeopath? naturopath? osteopath? I can’t remember, and I’m pretty sure that she saved my son’s life. She was recommended by a good friend,) gave me all sorts of weird herbs and supplements to take, since I was still nursing Sander. I took them, and within about three hours (warning: poop talk ahead,) he had a diaper full of the nastiest, smelliest slime and black goop that you’ve ever seen. It looked like his guts just slid out of him. And within twenty minutes of that, he stopped crying for the first time in three weeks. And he went to sleep.
Well, that was that, I thought. Done. He had a bad reaction to the vaccine, the witch doctor fixed me up, and the baby was going to be all right.
Except he wasn’t.
He stopped crying, but he wasn’t happy. Ever. He was as serious and miserable a little guy as you could ever imagine. Hit every milestone early, and I kid you not, walked at ten months. By one year old, he was climbing the tallest slide in the playground and going down headfirst.
He had a constant need for stimulation, and had to be entertained at all times.
He learned sign language, but no words. And he was never, ever, ever happy.
I didn’t work, but I needed a babysitter.
I absolutely had to have a sitter come in two days a week so I could get away from him. He didn’t sleep at night, took tiny naps during the day, and followed me around fussing the rest of the time. He didn’t like TV, except for sign language videos. Didn’t like books. Didn’t like music. Just liked to follow me around and fuss at me.
This babysitter was the most patient girl I’d ever met, and she loved babies and loved my kids, and one day after two hours with him even she met me at the driveway and said, “Take him. He’s all yours, and I’m just done with him. That noise never stops!”
It was a high-pitched, awful, whining, moaning sound, like, “Unhhhhh, unhhhh,” over and over again. But no words. No pointing. And it didn’t get better.
When Sander was eight months old, my sister came to live with us, and she took one look at me and said, “You look physically ill! What’s wrong with you?”
Within a day or two, she knew.
Sander couldn’t ride in the car without screaming. Hours and hours and hours of screaming, every time we left the house. His older brother was beginning to be traumatized!
I kept saying that something was wrong with him, but everyone said since he was walking so early that he would be fine.
I was convinced that there was something very wrong, and I was going to love it out of him. Whatever it was, I’d fix it.
Finally, when Sander was 14 months old, we moved to Texas, and with the move and remodeling a house and Mark starting a new job and homeschooling Sawyer, six or seven months went by in a blur. And then Sander was 18 months old, and then 20, and there were still no words.
And he wouldn’t read books with me.
Or sit with me, even for a minute. He’d climb to the top of the swingset, and he’d run all over the yard, and he’d stay up all night. He had maybe ten words at 18 months, and they were strange ones. “Oof,” for dog. “Ack,” for cat. “Eh-eh,” for shoes. Consistent, so they were words, but not real ones.
And he didn’t play with trains, or with the cat. He didn’t really play with anything. He responded to us, and hugged me, and let us carry him, so I knew he wasn’t autistic (insert diabolical “Bwah-ha-ha,” here....) but something was very wrong.
He wasn’t, by any stretch, normal.
Our bedtime routine was to run Sander as ragged as we could. Play all day long, hard. Feed him. Then put him in the sling (yeah, he was 18 months old -- but this is what worked,) and then rock him. Back and forth, up and down, back and forth, for about a half an hour, while he screamed the entire time. Sometimes the screaming would stop for a while. If the sling didn’t work, after an hour or so, Mark would go for a walk with Sander on his shoulders. He’d leave the house, quietly, and give us all strict instructions.
Then he’d walk for a good twenty minutes, sometimes thirty, while Sander finally fell asleep sitting up, leaning on Mark’s head. When Mark got home, he’d ring the doorbell. The entire house had to be silent and dark, and Mark would sneak in and put Sander down on our bed and sneak away.
If he slept for an hour, we were lucky.
Sometimes Mark went for walks at 2 or 3 a.m.
You couldn’t do car rides, because he’d scream.
You couldn’t lie down with him in bed, because he’d scream and run away and act like you were killing him.
There was something very wrong.
The last straw was a trip we took to Colorado to go visit my best friend. After two weeks in the car with Sander, and going on long walks by myself with Sander on my head, I knew something had to change.
I did lots of research. I knew he wasn’t autistic (insert diabolical “Bwah-ha-ha,” here....) but I thought maybe I’d give the gluten-free, dairy-free diet a try anyway. Maybe his guts hurt.
I read this:
which is what made me decide to try it for a couple of days.
From an email I wrote on Sept. 11, 2006:
“I'm going GFCF with Sander for three weeks, to see if it helps.
I'm probably just annoying everyone in the family for nothing, but I've read tons of anecdotal stuff about kids who didn't talk that went GFCF and were talking sentences within a week.
And frankly, he's still getting up four or five times a night, and since he'll be two in two months, I've had enough. I've got to get some sleep. And when he has dairy, he's up all night long, so I really think there's a dietary connection.
We'll see. Since I'm still nursing, I have to go GFCF as well, so if I'm unhappy, everyone's unhappy. Ha.
Sander is so sweet and so funny on his good days, and such a huge, unmitigated pain in the ass on his bad ones.
One night in Colorado, he grunted and pointed at a banana and a cracker on the counter, and so I handed him a cracker. Well, that wasn't what he wanted, so he took it and threw it at me.
I asked him politely to go pick it up, and he went over to the cracker, picked it up, and threw it at my head.
So I left it there, and later, when we were making s'mores, and Sander wanted a marshmallow, I told him he could have one as soon as he picked up the cracker. He went over to the stupid cracker, picked it up, threw it at me again, and then stomped on it and screamed at me, insisting on a marshmallow while he threw things at me.
Later, after I took him out of the room, nursed him, and we went for a walk to change scenery and calm down, he happily volunteered to clean up the cracker and have a marshmallow.
But boy, he's not even two yet.
I hope this GFCF thing works. Because otherwise I'm just going to have patience and wait for him to talk, and that just might kill me.”
And one written 48 hours later, on Sept. 13:
“Well, I'll tell you what. I'm keeping my fingers crossed, and I’m not 100 percent sure that's it's not just a coincidence, but we started Sander out GFCF on Monday night.
We were getting very worried -- the speech therapist on Monday had said that he wouldn't do any motions to "The Wheels on the Bus" (whatever. Hasn't she got better things to worry about?) and that she was very concerned that he hadn't picked up any new words while we were in Colorado and wouldn't imitate any animal sounds.
Well, he actually hasn't picked up any new words in about three months. And he was still screaming to sleep every night, and waking up three to five times a night to nurse, and was just basically unpredictable: Some days he's great, other days he's a nightmare the whole day.
So we started the diet Monday night.
Last night he said "bat" and "bug" for the first time.
This morning he started doing the motions for "Wheels on the Bus" and humming so I would sing for him. Then he started woofing and quacking and baa-ing while pretending to be each animal.
He slept last night until 4 a.m, which is a record for him, and only got up twice (I'll take what I can get!) and went to sleep tonight for the second time in row without any screaming.
He's cheerful, funny, playful and fun. He's happy and easy-going and hasn't thrown anything at me at all today.
I'm not sure that I'm hoping that it's the diet, which might mean a lifetime of restrictions for him, but I sort of am, too, because that means that it's an easy fix. A lot easier than some of the scary stuff that's been floating around in my head.
Of course, what I"m really hoping is that he's just grown out of whatever it is spontaneously and that it keeps up. So keep your fingers crossed. I'm going to be very sad if it's just a fluke, so I'm refusing to get my hopes up too much.”
So, that was it. The beginning.
Yes, he was autistic. No, I never got an official diagnosis. My pediatrician suspected it, and said he didn’t want to put it down in writing on the chart, but once Sander turned three he wanted a full workup. There’s no “official” diagnosis of autism until they’re three. Sander was 22 months old when we started this, and there was no way I was going to wait another year just to get a diagnosis.
We went to Thoughtful House, which was just starting up at the time, and got in with an absolutely amazing doctor, Dr. Bryan Jepson.
He said that yes, Sander probably would have developed into full-blown autism, and given his blood work, he had all of the biomarkers that kids with autism have. Since he was GFCF, he’d probably be a lot better off, and if I wanted him to recover completely, he needed a bunch of supplements to complement the GFCF diet.
Whatever. Sander was happy, the diet was working, and there was no way I was getting 12 supplements a day into this kid.
I loved Dr. Jepson, and I loved Thoughtful House, but the supplements weren’t that important.
Cut to June of the next year.
Sander was, well, normal. His behavior had turned around 100 percent. He was a normal, healthy, happy kid.
Except that he still didn’t talk.
I’m going to tell that story again though the emails I wrote at the time:
May 16, 2006
“Thought I'd give you an update -- I've been in hiding, trying to take in a bunch of information.
There's something still "off" about Sander and his speech. He's overcome all of the other "red flags" for autism, but he's still not talking much, and when he does, his speech is strange. He consistently says "oof" for dog, "ooom" for cow, "eh-eh" for shoes, "oump" (a kind of swallowing sound) for eat, etc.
He can say mommy, daddy, bye-bye, go, hello, etc, but there are no sentences. But it's not because he's not communicating -- he "tells" long stories about where he's been and what he's done -- to tell you that he went roller skating, he makes the sign for shoes, then makes the sign for "ball," and puts the balls under the shoes and mimes skating and falling down.
He's funny and sweet and easy to please, as long as he has your full attention, of course. He can do 60-piece puzzles with very little help -- and any puzzle easier than 60 pieces he can do on his own. He follows along in the conversations we're having and understands everything.
His speech therapist is wonderful, but young. So I asked her to have her boss sit in on a session, because her boss is the reason I started speech therapy there. She's the best-known therapist in Austin, has been doing this for 30 years and has worked wonders with autistic children.
She sat in, listened to Sander for about twenty minutes, watched him do a puzzle, and then told me that's she's absolutely certain that he either has apraxia or a severe phonological disorder. OK, says I. So what does that mean? That it will take longer than we thought for him to be speaking normally? A year instead of six months?
"Oh, honey," she said. "There's a good chance he won't ever speak normally. There's a good chance he will, of course, but I don't want to get your expectations up that he's definitely going to be able to talk. A lot of apraxic kids end up not being primarily verbal communicators."
Meaning they speak in sign language or with picture cards.
Basically, when Sander says "abalab" for ice cream, he thinks he's saying "ice cream."
It's like when someone has a stroke and looks at a plate and says "wheelbarrow."
There's some kind of a verbal disconnect there, and there's no way of knowing if it's going to get fixed.
The good news, she said, is that he has everything going for him -- he's exceptionally bright, he's very strong willed, he's in speech therapy before the age of three and he's got a family that's backing him up.
I'm hoping, of course, that's she's wrong, despite her 30-year career with apraxic kids. And I'm hoping he's bright enough and stubborn enough to overcome this if she's right.
But boy, if she's right, there's a lot of hard work coming my way.”
So, I went screaming back to Dr. Jepson, who asked me if Sander was taking all of his supplements.
No. Why? How can taking vitamins have anything to do with apraxia???
Just fix my kid!!!! Make him talk, for God’s sake.
I’m begging!
He can’t speak in sign language his whole life.
He can’t.
Fix him.
Make him talk. Fix it.
Fix him!!!!!
Panic had set in.
And pure, unadulterated fear.
This kid was bright. He knew something was wrong.
I knew something was wrong.
And by God, I’d screwed it up in the first place, and I swore I was going to love this out of him, and I was going to fix it.
Dr. Jepson said, calmly, that if I wanted to help Sander I had to get the supplements in to him.
So.
Twelve supplements, here we come.
Calcium. Magnesium. Vitamins. Fish oil.
Mix ‘em up, hold Sander down, force them in, hope to God you’re doing the right thing.
Curse Dr. Jepson. Thank God for Dr. Jepson.
Hope that this works.
July 6, 2006:
“I'm hesitant to even tell you, because you're going to think I'm crazier than I already sound, but Sander started taking a bunch of new supplements about three weeks ago and, according to his speech therapist, he's gone from the level of a 12-month-old to almost where he should be in the last two weeks.
Really.
He's walking around saying, "Me hungee. Please hot cereal. Eat, mommy, please help cook. Me hungee." One month ago, he had very few two-word sentences, and no three word sentences.
His odd words, like "oof" for dog and "eh-eh" for shoes, are completely gone. He now says, "Please shoes. Help shoes on, please." Instead of "Eh-eh, uh huh, huh, peese, eh-eh," with a lot of sign language.
He's even telling stupid poop jokes, "Yummy poop. Me eat poop. Hahahaha...."
The only bad news in this is that it's 12 different supplements, and they have to be taken every day, and it's really a LOT of work to get these into him.
I feel like an idiot for waiting this long to do this -- the doctor told me to start these back in January, and I figured that he was taking a multivitamin, was already eating a healthy organic diet and taking the fish oil, and he didn't really need them.
Then I started doing the research, and Sander's test results were coming back odd, with things like low CO2 levels, and I realized that the doctor might know what he was talking about. Plus, the last time I saw the doctor, he said he couldn't really do much else for Sander unless I started getting the supplements in him.
So he's taking zinc, calcium, B12, folic acid, cod liver oil, things like that -- nothing odd or that you can't buy over the counter.
But in two weeks, his whole world has changed.
And so has mine. Last night, watching fireworks, he said, "Oooooh, pops! Pop, pop, pop! Up, sky! Look, purple pops, blue pops!"
I cried. And hugged him. And cried some more.
The speech therapist is completely convinced that it's the supplements, as "we're all just a bunch of chemicals inside," and she's starting to talk about ending speech therapy at some point soon if he keeps progressing like this.
Last month she said she thought he'd be in until he was at least five or six, if not a lot longer.
Just hope I'm not jinxing it by saying it "out loud," so to speak!”
We were done with speech therapy two weeks later. Really.
And here we are.
Sander has just turned four, and he’s “normal” in every respect, whatever that means. He talks up a storm, loves killer whales and hippos and wants to be an animal doctor when he grows up.
If we screw up and he gets wheat in his diet, he cries, has diarrhea and is a miserable mess for three or four days.
He’s still, um, active, to use a nice word for it. He’s four and he skateboards, for Pete’s sake!
He goes everywhere with a purple stuffed platypus that he takes for walks on a leash, and he has an active imagination and a wicked sense of humor. He loves fart jokes way too much.
I teach gluten-free cooking classes, and I help with email support, and I believe that this diet works for some kids.
I don’t think it works for everyone.
But it’s free.
It’s harmless if it doesn’t work.
And when it does work, it’s nothing short of miraculous.
My take on this whole thing, after MUCH research, and as a former newspaper editor, medical
reporter, journalist and mom of a son who's recovered from autism:
There is a gene that runs in families that seems to encompass ADD, Asperger's, ADHD, autism, celiac disease, allergies, juvenile diabetes and asthma. Other autoimmune diseases show up as well, and respond to the same treatment:
Rheumatoid arthritis and MS are two that I know that are greatly improved by the treatment for this.
I say this as a mom to one son with celiac disease, another who had autism, and as an aunt who raised her nephew with severe ADD. My cousin has asthma, I have all sorts of allergies, and while no one I know, thankfully, has juvenile diabetes, about ten to fifteen percent of celiacs end up with it.
Now, here's the current theory -- backed up with credible, real, medical research, and being carried out by doctors all over the country. This is NOT, however, mainstream medicine. Your pediatrician will tell you you're crazy if you go to him with this.
However, my pediatrician is now a convert, after seeing my son recover completely.
Here goes:
This gene leaves children with a very low threshold to environmental triggers.
That means that too many vaccines, or household toxins, or chlorine bleach, or who knows what, will "trigger" or "turn on" this whole chain reaction.
The first thing that happens in many cases is that the intestines are affected and the child has leaky gut disease. This means that certain proteins aren't broken down and some actually penetrate through tiny holes in the gut wall, leading to all sorts of inflammation and problems. The two biggest offenders are the proteins gluten and casein, which are found in wheat (and some other grains) and in dairy. These two chemicals, so the theory goes, are so similar to opioids in structure that they actually act like opium on the brain, making these kids just plain loopy. In other kids, the gene just gets triggered for celiac disease, so they don't have behavior issues, but have severe gut issues. Others have the gene triggered and end up with autism. Others end up with asthma.
The other side of the coin is that since the intestines aren't working properly, vitamins and minerals aren't absorbed, leaving these kids with all sorts of issues because they're not getting any zinc, calcium, magnesium, etc.
So, to fix it: Start as soon as possible. Take out gluten and casein, so the intestines can heal. And add in minerals and vitamins to help the brain function.
Obviously, it's not that easy. Sticking to this diet is a pain in the butt.
Figuring out which vitamins can seem like you need a biochemistry degree. And it doesn't work for every child, as many moms can tell you.
But when it does work, it's miraculous, easy, and there are no drugs involved.
It's also free, and completely risk-free, as there are certainly no side effects from skipping the bread and having rice instead.
However, after raising a nephew who said he would much rather take ritalin and drive through Jack in the Box than ever, ever, even for a day, sticking to a gluten-free diet, I know this isn't practical for everyone, and believe me, even with medication, he was hard to live with and an impossible teenager who ended up joining the Navy at 17 (where he's doing very well, because there's so much structure.)
For anyone who's interested, I will add some links at the bottom.
I was not a believer in diets. I did this as a last resort, because it was free, couldn't hurt anything, and then we could check it off the list and I wouldn't feel guilty that we hadn't tried it when so many people said it would work.
My sister laughed at me, and she said, "OK, so he's miserable and whiny and your answer is to take away pizza and mac and cheese and his favorite foods? Yeah, that's gonna help."
Within three days, she and my husband were both begging me to stay on this diet forever.
I am, obviously, a true believer, but I know your mileage may vary. There are
many moms who tried this diet faithfully and saw no results, so keep that in mind, too.
The page that got me started on this journey
(The best doctors on the planet, period. With prices to match, unfortunately.)
(about halfway down, read "the big picture" for an understanding of what the
steps are)
Dr. Jepson’s book about the medicine behind autism. Real research, 60 pages of published medical articles, written by a real doctor, not a quack:
I will add more links to this page as I think of them, and I will put a link to this this page up on the main part of my blog. Feel free to email me with questions.
Do not, however, feel free to say nasty things about Thoughtful House or how this is all somehow a hoax.
This diet does work for some people, some of the time.
I’m sorry if that shakes up your world. It’s the truth.
Autism is treatable.
Kids do recover.
And mine is one of the lucky ones who got better.
Reader Comments (2)
Meagan - What an amazing story of transformation! I had chills reading about how the diet and supplements helped your son so tremendously.
Thanks. I was at a party last week (actually, you were at the same party, I think,) and one of the moms said, "So, how did you get started being gluten-free?"
I told her that Sander had autism, and when he went gluten-free, he got much better, and that later on we found out that my other son is celiac.
And the other mom said, "Well then, obviously, your son DIDN'T have autism, then, did he? Because there's no cure for autism."
I almost got into it with her, but I let it go. Because some people are fighting different battles than I am. And you know, it doesn't matter how or why it works at this point. As long as my kid is "better" when he's GF, we're going to keep doing it.