The Myth of Autism

by Dr. Michael J. Goldberg, Elyse Goldberg, Dr. Ismael Mena

  Joel is now twelve years old, and he is so much fun. He still has some challenges, but overall he’s doing very well. I hope that better meds will be made available in the future to help with his strained immune system. He doesn’t need any special education services or regional center services. Joel takes classes, plays sports, and plays with friends his own age.

  Joel is doing so well that people can’t believe he ever had the “A” label. People don’t believe that their child can receive the same sort of results.

  “Josiah”

  Josiah was a very wanted and planned baby. For years his big sister asked for a sibling. Finally at seven years old her wish came true, and we welcomed baby Josiah. I remember looking at him thinking this is not a baby, but an old man. I gave birth to an old man! He was such a masculine baby, and just beautiful. Having another child, we can see he was developing typically. Josiah was a very connected and attached infant, and was gaining in all his milestones. At three months he knew my voice and would turn and search for me. He was so attached that I had to sneak out the back door to go to work. If he saw me leave, it was over! He cried like I broke his heart! I was his best girl. I still am!

  He was a very happy baby. He looked at his big sister like she was the coolest thing in the world. As a baby the only illness he had was a bad case of thrush. It was very bad, though, and took a long time to go away. Next he had a bout of reflux that also persisted.

  Josiah even spoke early, at nine months of age. He said his first words: “quack, quack.” It wasn’t just a one-time quack, either! Every time he saw a duck, he quacked his heart out! He even pointed. His next words were cars, go, ma, eat, juice, and soon at eleven months he said “cars go,” and “good girl” to our family dog. His pediatrician even noted this was early for a twoword combination. I remember he would pet the dog sort of rough, yelling “nice, nice,” because we always said “be nice” to the dog. He was getting it. I always looked forward to coming home and being greated with “Hi!” as he ran into my arms. He played appropriately, was easy to take out, and was a big flirt with the ladies. We laughed at how he would totally ignore men and would reach out and grin at all the pretty ladies. Very social and a joy.

  Soon at around fifteen months of age things started to change. He would cry over things that I didn’t understand. There was no rhyme or reason. He became destructive and less verbal. Didn’t want to walk, and would scream to be carried. Then he stopped talking. He had ten words and now had two left, “cars go.” What happened to “Mom”? I never knew what he wanted. He got rigid, had to have things a certain way. He used to love going out to eat, this soon became torture. We would have to call ahead to the restaurant to order his meal, as he would rage if he had to wait. A few times a bus boy turned on the vacuum, and he went absolutely crazy. Even after the bus boy turned off the vacuum, he could not calm down. We had to leave immediately. Then he nearly stopped eating altogether. He would scream for milk all day. Why did he suddenly get calm when given milk, and erupt into a larger fit later? He no longer tolerated hats, haircuts, the merry-go-round, and no longer flirted with the ladies. He now would scream in the car, and hated outings. His bowel movements became so infrequent, and they affected his sleep. He would get strange fevers and seemed always sick. He no longer slept through the night. We often found him laughing hysterically in a dark room at 3:00 AM! This was scary!

  On his developmental chart he was marked for the lowest amount of acceptable words. I took him several times, and was told not to worry. I remember when I was pregnant with his little sister, talking to the pediatrician about how I was concerned about him not understanding a baby was coming. She said just read to him “big brother” books, and he’ll get it. By the time he was two and a half, his little sister was born, and he was shocked. He never understood a word of those big brother books. When I took her home, he looked at her and searched to see how he could take her apart. He searched for how her leg was attached. Like she was a doll, he then yanked hard trying to take her little leg off. He was very disappointed that she wasn’t a doll. He just did not comprehend. By this time, I was finally told to worry. The waitand-see approach lost us developmental time.

  As he was evaluated, I kept saying to the psychologist, he can’t be autistic, he’s sick. I was told that whether he was sick or not, had no bearing on his diagnosis. My son did not play repetitively, and had great imaginative play. He loved touch, affection, and other than the “demon vacuum,” he was fine with loud noises. During the evaluation, I remember them placing a cup, spoon, and a baby doll on the table. As they watched for inappropriate play, he places the baby in the cup, spins it, and says, “Weeeeeeeeee!” I watch the evaluator frown, and scribble something down. I said, “Wait, that is appropriate! We just got back from Disneyland and he loves the teacups!” She then erases her negative marks. Even though I spared him one negative point on her scorecard, I couldn’t spare him the autism diagnosis. It was devastating. They were wrong. I felt firmly that he did not fit Kanner’s definition of autism. Even then, I knew that this mislabel of autism would deny him a medical intervention. How could I get them to look deeper? I am just a mom.

  As we immersed ourselves in the suggested therapies, I researched medical ways to treat his symptoms. First thing we tried was removing the milk from his diet. Josiah went through severe die-off from this that was completely scary. For nine days, he was gone. He stopped playing appropriately, stopped seeking affection, started lining things up, and was screaming in rage. I was scared we made it worse. He was doing things he never did before! Thankfully after ten days he started coming back. He stopped lining things up, and has never done it again. The best thing was he slept a bit better, screamed less, and gained thirty-three words in six weeks! We were on our way. He continued getting better when we added in antifungals and probiotics. My son’s tongue was pink again. He was calmer and more focused. As we moved further in this popular autism protocol, we ran expensive labs and were told to remove all gluten as well as twenty-two other flagged foods. Strangely, when we did this, he got worse. He got strange fevers, the circles under his eyes worsened, he refused to eat, and he was miserable. I knew that we needed a new protocol.

  I can remember when I found out about Dr. Goldberg, as I was up late one night Googling like a madwoman. I found his letter to Congress stating the most remarkable thing. He said it was “scientifically impossible for there to be a developmental epidemic.” He further said that this epidemic was not autism, but a disease process. I cried as I read his words, as they made sense and provided hope. I called the next day, and was in his office six–eight weeks later. The first thing we did was change his diet. Dr. Goldberg’s NIDS diet worked much better for him. Similar to GFCF, it was not hard to follow, but allowed more food. For my son, removing all those foods did him more harm than good. He was now milk free and whole grain free and feeling much better.

  After receiving labs back indicating high titers of HHV6, we started antivirals. For Josiah, this was quite painful to start. My poor baby had massive headaches, stomachaches, night sweats, and excruciating leg spasms. I read on HHV6 adult boards that many experienced a sciatica-like pain in their legs and hands. I knew this was it, as he would suddenly scream and grab his foot and legs. He would curl up his little foot and scream for up to two hours. It was so hard to watch him go through. He would pinch his hands, as if they tingled, and whimper. In the middle of the night for the second week, he would wake constantly in a cold sweat. During this time I slept with him, and I was awakened one night to him slapping me while still asleep. He was completely asleep, and hitting and kicking me. As I protected myself with a pillow, I remember thinking, “It’s okay, baby, fight that nasty virus!” For a while the virus seemed to stir up and grow, as his titers went up. Seeing this, Dr. Goldberg changed antivirals, and the virus dropped as well as all pains.

  Josiah was the clearest we have ever seen. He was sleeping more, eating more, and he had gains in every direction. Because he w
as feeling better, we lost our terrible tantrums, and words were growing. He also began understanding language. He responded to his name again, and was here. I was floored when five months into the protocol, I asked him to clean up his mess and he did! One night, I said, “Okay, clear your plate,” and he got up, scraped the food into the trash, put the plate in the sink, and clapped his hands and said, “I did it!” It was almost like he always wanted to listen, but couldn’t. His words grew, from a vocabulary of 43 words to 135 words. He also learned to imitate. Speech therapy began working better, as he would imitate sounds, then full words. Next were songs. It was beautiful to hear his little voice quietly singing, “Twinkle, twinkle little star.” He even made up one short song of his own and marched through the house singing it. His play skills advanced developmentally, and he gained more imagination. He now loved to dress up and pretend to be different characters. His favorites were Buzz and Woody costumes. He would yell, “Yee haw!” and gallop around the house pretending to be Woody from Toy Story. His attention span grew, as he started to request stories to be read to him. This was amazing! He began to play with other children more, and his relationships with his sisters grew as well, especially with his older sister who was now eleven. She would say, “Mom, Josiah is so much fun now!” They were finally getting to know one another. As for his little sister, she was eighteen months and not as interesting, and he was still annoyed that he had to share his toys and his mommy with her.

  The most amazing moment for me would sound strange to someone with typically developing children. I hold dear to my heart the moment that Josiah had a mini argument with me! It was great! I held in my smile, as he mocked me when I scolded him to eat his dinner. He yelled back, “Josiah, eat! Josiah, eat!” followed by roars of laughter. He then says, “No, no, no, no! You eat!” This continues for ten lovely minutes. I say lovely, because it was pure bliss to hear his voice so fluidly. He was the kid that had some words, but would never repeat a word when asked. Here he continues to mock me, yelling, “Not okay! You eat! No, no, no!” Then he wants to get down from his chair and says, “Down!” I say to him, “No down! First eat!” He thinks for a minute. And cleverly smiles and says, “Mom, hug!” He was manipulating me to get off his chair, and I was so proud! Awesome!

  When he got back to school, five months after starting the protocol, the teachers and staff noted that he was more reachable and teachable. They were amazed. His teacher said that the lights were on, and his behaviors dropped significantly. He was more compliant, and he participated in class more. At home, he continued socially and making a friend. A girl, of course, as he is a little flirt again.

  Josiah’s road to recovery is a bumpy road, with ups and downs. It isn’t an endless road, though, and I am grateful for a destination. After fifteen months on this protocol, I have noticed a clear correlation of how well he is doing and how high or low his HHV6 titers are. When his language drops and his behaviors rise, there is always a rise in titers or an ear infection brewing. My older daughter made a game to gauge his language. She got a tally counter, and from time to time start a competitive game of “How much can you get Josiah to talk?”A year ago this game would be impossible. We found that when his virus is down, and he is healthy we got a peak of 317 words in one day! This is amazing, as a year ago, it would be five words. We gauged when he was ill, and his virus was up and he was at a dragging thirty words a day. If this was genuine autism, how can we have these fluctuations? I feel this is further evidence that this is an illness.

  Currently we are watching his titers drop again and seeing him come back to life. His relationship with his little sister has grown from tolerance to friendship. He now plays with her and loves her. It is so sweet to see him to ask for a Popsicle and reach for two, to give her one. He is growing to be a good big brother. If we can keep his ear infections from recurring, and his virus down, I feel he could fully recover in a couple of years. Keeping him healthy is proving trying, but at least he is with a doctor that believes in him.

  He is not a lost boy anymore. He is here and is amazing!

  Below are two journal entries from 2007, when he started to regress.

  One is a schedule I was passing on to my mom, as she was about to care for the kids for the day.

  The other is how the day actually proceeds. Although written in humor, it is all true.

  Josiah’s schedule; Written 2007

  Wakes by between 6:00 AM-9:00 AM (have juice out immediately)

  Playtime, diaper change

  Put out high chair one hour after he wakes, fix breakfast tray (pancakes w/butter syrup, strudel, peaches, etc.)

  If he doesn’t eat put out snacks to graze (dry cereal, grapes, apples, banana, etc.)

  Playtime

  Time to unwind for nap. Put on less stimulating (classical baby) shows. Brush teeth. Try tickling him with toothbrush (I will show you how)

  Nap time starts between 10:00 AM–12 noon (nap only lasts for 2–2.5 hours).

  Wakes (have juice out immediately), diaper change

  Lunch is usually grazed. Leave out a corn dog, chicken fingers, dry cereal, or chips, and grapes or apples. If you can get him in a chair try peaches and yogurt.

  Playtime, graze, playtime, graze, playtime, graze (hopefully poop)

  Dinner is between 5:30–6:30 (put out chair fifteen minutes before)

  1st, try thin pasta, or breaded chicken, 2nd give baby food veggies (in bowl he can dip spoon into), next clean up tray and give him drained peaches in a cup.

  You can choose to:

  1. 5 min before he’s done, have Soatikee (big sis) draw his bubble bath. Undress him in the kitchen and lead him to the bath, saying, “Oh, look at the bubbles!” Soatikee will wash his back and arms and watch him well, while you can recover the kitchen. (Hopefully he has pooped.)

  If you choose the above option, then if he ate enough, you can have a bottle warmed and ready by the bed, have his toothbrush ready, and a warm paper towel handy and dress him, brush his teeth, bottle him, wipe his teeth pacifier, and put him to bed. (Warning, he may have to poop after a warm bath, which means you will have to wait.)

  2. Or you can delay his bath, just wipe his face/hands, have him play with Soatikee, (recover kitchen).

  Have him play (poop hopefully), and 1 hour later feed baby food at least one jar, have two handy though.

  Have Soatikee draw his bubble bath and start bathing him.

  While she is doing this get his stuff ready in the room. Warm toothbrush, warm paper towel, and warm bottle, and pacifier. Also have lotion, pj’s, and towel ready. When he gets out, get him lotioned, dressed, brushed, bottled, burped, and put to bed.

  This is all subject to change and depends if he has pooped yet! He needs one to two good poops a day for an easier night.

  Thank you for watching the rugrats for us. This means a lot to us.

  Josiah’s day, 2007

  (Pay attention, there are tips in here that can get you through your day too!)

  He wakes up happy, continuing his thoughts on last night’s conversation.

  topic: “Cars go!”

  Happiness quickly fades as he makes his way from the bedroom.

  His legs turn to jelly as he realizes he is no longer in bed, and he is quickly thrown into a bad mood for about an hour.

  Any quick movements are perceived as hostile toward him, so make your way through the morning cautiously.

  Offering juice too early is pretentious to him and unforgivable.

  Offering juice too late makes him think you’re trying to dehydrate him and throws him into a panic.

  Better to have made the juice cup the night before and simply take out of the fridge and place in a central location.

  No, you cannot make the juice in the morning! If he sees you make juice, it will give him anxiety, and he will panic that you are going to pour juice forever and never give it to him!

  Breakfast is quickly denied after several tries. After he grazes a bit off his and your plate, he de
cides that this is wasting his time, and he has a lot to do this morning.

  And he is off! Lots of important things to do before his next tantrum.

  Got to: Pull cups out of the cupboard and drop them all over the house, empty the cat food by spilling all over kitchen and sliding on top of it belly first, take a few bites of cat food of course, check on the dog water ensuring freshness by sampling it, wake up all the pets with a “Nice” greeting, pull all the DVDs off the wall shelf, take out my Flintstones-type car and run over the dog, see if Mom is cleaning the cat food up right and “help” her by rolling on top of what she is sweeping up, the sliding glass door isn’t sparkling; better lick it. Oh Mom is making the bed, better help her out by putting the sheets over my head and running into the walls, ah, she takes sheets away and makes the bed; time for medium-sized fit. Cardio exercise always makes him feel better, so he now runs around the house slamming all the doors. Quickly raises his heart rate by getting angry that the door he shut clicked shut, and he can’t reopen.

  Now it is time for a large-size tantrum which involves rolling on the floor, crying at Mommy, and pushing her to sit down (as she is still cleaning up his mess) and make her cuddle him. He finds his pacifier on the couch and begins to self-soothe.

  Rubbing eyes show fatigue, but there is still some fight left! He is 21.9 months and is not going down yet!

  Time to play with sister and destroy her room. After she selfishly takes her favorite toy from his teeth, he begins a pretty good-sized meltdown. As he screams slamming doors looking for Mommy, he gets angered even more to find she is not where he left her. Where is she? As he cries looking for Mommy, he forgets why he was angry to begin with, and now is angry that she has moved from the spot he left her in. He soon finds her in the bathroom and quickly screams his way in. She washes her hands, scoops him up, and lays him down for nap. This is so offensive that she offers a nap without a bottle in her hand! She gives in and grabs a bottle and he is off to reenergize with a nap. He needs to, next will be lunchtime and more to do! It will be time for an outing, more things to explore, put in his mouth, pee on, and he will need more energy to go, go, go!