My Son's Recovery from Autism- Without Pseudoscience!

A year ago, when I wrote "My Normal Baby's 12-Month Regression," I made a mental note to come back and update everyone in a year about my son's progress. After a significant developmnental regression, I knew that it was extremely likely that he, like his older sister, would be on the autism spectrum.

I never would have guessed just how remarkable the last year would be for my son. I never would have guessed that I would go from having an autistic one-year-old to a non-autistic two-year-old.
 Anti-vaxxers collectively spend millions on "curing" autism with bizarre treatment-- check out "10 Batshit Autism Treatments" for more on that-- but these treatments don't work and, worse, they're dangerous. I'm happy to say that my son was "cured" of autism in the only way that is backed by scientific study and endorsed by the Amerian Academy of Pediatrics.

I'll preface this with a (fictional) story. Suppose that a toddler's parents recognize that he is left-handed. There's a safe, effective method that can teach most left-handed toddlers to become ambidextrous, and the toddler's parents use it. Within a year, the toddler is functionally ambidextrous, and is able to use tools and machines designed for right-handed people, eliminating a problem that many lefties face.

This situation would not mean that a left-handed child is defective, or broken. It wouldn't mean that people should stop accommodating the needs of left-handed children and adults. It wouldn't change the fundamental fact that the child was born left-handed. It would simply mean that the child was given tools at an early age and was able to keep the good parts of being a lefty while never needing to worry that a classroom tool is made for someone else's grasp.

This is how I see my son. He was never broken and he was never in need of healing, but I gave him the ability to thrive in a world that is not made for people like him-- to such an extent that he effectively became neurologically "ambidextrous."

Darwin on his first day of school, last week.

My son Darwin's story goes like this:

At twelve months, Darwin had an extreme and sudden developmental regression. Since he had an older sister on the spectrum and had seemed "different" from birth, I contacted my community's Early Intervention program, which evaluated him and found that he had significant delays in several areas, including social-communication and motor skills. We began a weekly home-based program to address developmental problems including gross motor delays, extreme anxiety, sensory difficulties, disordered sleep, delayed speech, poor eye contact, and selective hearing.

At one point, Darwin's delays were so significant that I made myself come to terms with the possibility that he may grow up to be nonverbal-- the "bad" kind of autism that most parents fear.

Darwin's progress was by no means immediate. Even with Early Intervention, he did not walk until seventeen months and his sleep disturbances were so severe that, as a single mother, I was losing my mind. His neurologist suggested that I keep a tally chart to see how many times per night he was awakening, and I was disturbed to wake up and see fifteen to twenty tally marks every night. Several times, I fell asleep at stop-signs and red lights while driving his older sister to school. He would not respond to his name. He wouldn't speak to me. He wouldn't make eye contact.

At around a year and a half, it was pretty undeniable that Darwin was on the spectrum. His pediatrician, Early Interventionist, neurologist, and developmental pediatrician all agreed that it was unlikely that he was not autistic. Yet, he started to make progress, bit by bit.

In addition to his weekly Early Intervention meetings, where we discussed home-based strategies that would help him, Darwin received occupational therapy to help with his sensory processing difficulties. He also had speech therapy, which helped address early signs of echolalia (compulsive repetition of another person's words) and difficulty with auditory processing.

Every parent has a few moments in their child's development that they savor the most, those precious memories that they return to when they need to remember why it's all worthwhile. First words and first steps are common, but for the parents of special-needs kids, there are unsung milestones that matter just as much. I remember when Darwin finally (and suddenly) started speaking in real sentences. When he responded to his name. When he answered a question with "yes" or "no," instead of repetition. When he waved bye-bye for the first time following his regression. When he heard a washing machine and didn't scream in terror. When he let me buckle him into a car seat without a huge fight.

These memories mean everything to me. And, collectively, they added up to create the wonderful two-year-old that Darwin is today.

In the three weeks since Darwin's second birthday, we've had some amazing developments. He had his annual evaluation with Early Intervention, where we found that he'd gone from having severe delays in several areas, to being extremely advanced in every area tested. His social and communication skills are exceptionally advanced and he's finally hitting gross motor milestones on time.

 He speaks in long, complex sentences-- "Mama, if story time is over, would you like to rock in the rocking chair instead?"-- and plays well with his peers. He can run, jump with both feet on the ground, and initiate conversations with his peers. He started preschool last week and is thriving completely. He only wakes up once or twice a night and usually puts himself back to bed. Today, he "tested out" of occupational therapy and speech therapy, since he has no delays and his sensory processing abilities are now essentially typical.

Part of the summary sheet from Darwin's last home EI visit.

I couldn't possibly be more proud.

Given his monumental advances in the last couple of months, Darwin's care team now largely believes that he does not, at this point, have diagnosable autism. He has an evaluation scheduled for this November, after which I'll be able to say with certainty if he is currently autistic... But, at this point, I would be surprised if he meets any of the diagnostic criteria.

There's much about Darwin's story that is bittersweet. The part that hurts me the most is that I know, in my heart, that his sister would have had the same level of progress if I'd been as vigilant about evidence-based treatments, but I was so wrapped up in crunchy culture that I delayed and avoided these treatments when they would have been most effective. While she is happy and wonderful and thriving in her own way, it hurts as a mother to know that I could have helped her sooner but was too arrogant to do so. It hurts to know that her own struggles would have been far easier if I had put her needs ahead of my ideals.

I'm currently 24 weeks pregnant with a precious little boy, my third child. It's amazing to think about how much I have learned and grown as a parent through every step of my children's journeys. In my eight years as a mother, I have become a completely different person because of an ever-evolving struggle to be the parent my kids deserve. After all I've learned through my oldest two, I can't wait to see what my third will be able to teach me.

I don't want to change my kids. I don't believe that autism is a disease to be cured. However, I do want my children to be happy and healthy and to thrive to the best of their abilities. If I was able to "cure" Darwin's delays and sensory-processing difficulties to the point that he fell off the spectrum, I view that as something worth celebrating--

and as one more sign that the answers parents need are in science, not in naturalistic idealism.

7-Y.O.'s Parenting Book More Scientific Than Sears

Bill and Bob Sears-- father and son-- are the patron saints of today's crunchy parenting community. You can't swing a dead cat in a green mommy group without hitting a citation of Dr. Sears. It's convenient: when you want to say or believe something that contradicts medical consensus, it's nice to be able to have at least one doctor whose name you can whip out as evidence that someone has your back.

I've been there. I still vividly recall my embarrassment when I tried to cite Sears seven years ago and was quickly shut down by a pediatrician who told me he wasn't very smart and was out to make a profit by telling parents what they wanted to hear. I wouldn't have guessed that I would ever be on the other side of the fence. I definitely wouldn't have guessed that my daughter-- the unvaccinated, breastfed, all-organic baby on my hip-- would be.

Yet here she is. My seven-year-old wrote a parenting book more evidence-based and scientific than Sears. I didn't put her up to this. She did all of her research independently of me by reading parenting magazines, parenting books, and handouts she got at our health department and pediatrician's office. In fact, when I tried to get her to revise her page about sleep safety, she absolutely refused, telling me that it's her book and she's going to go with what the experts say. I cosleep with her baby brother, so reading about how he could "DIE" because of my decision was a little unnerving-- even though I know I weighed those risks against the risk I was taking by accidentally falling asleep with him in the rocking chair.

Here's what my daughter had to say.

Cover:

Being a Big Sister, Big Brother, Mommy, or Daddy

by: Vivian Russo

Table of Contents:

1. I'm going to teach you about...
2. How can we work together?
3. You should feed ___ to your baby
4. Where should my baby sleep?
5. When should I take my baby to the doctor?
6. What should I do if my baby has a diaper rash?
7. When should I feed my baby solids?
8. What should I be expecting?
9. How do I know when to feed my baby?
10. What can I do to help my baby's development?
11. How am I going to know when my baby will do what?
12. How do I show love to my baby?





Title Page:

Being a Big Brother, Big Sister, Mommy, or Daddy

by: Vivian Russo










I'm Going to Teach You About...

Hello, my name is Vivian! I am the author of this book that you're reading. I am 7 and I am going to teach you about being a parent or an older sibling! Also I am a big sister! My baby brother's name is Darwin! 

How Can We Work Together?

Working together is simple. All you have to do is think hard! My mommy, Juniper, has always thought of ways that I can help with Darwin! So has my Mer-Mer [other mommy], Meredith!

You Should Feed _____ to Your Baby

Babies under six months should have food that is mashed up and looks like apple-sauce but with a different color. Make sure that it is safe for your baby. To do this, use your memory. If your baby's pediatrician said your baby can have it, it is safe for your baby. So is it if there is a picture of something your baby can do on it. Some babies that are five months old can have apple-sauce.

Where Should My Baby Sleep?

The safest place for your baby to sleep is in a crib. It's not just that your baby has to be in a crib. The crib [should be] in the baby's parents' room. Here is why. If your baby does not sleep in your room, it will increase the risk of SIDS! Just like what would happen if you baby sleeps on his tummy! Now, why your baby shouldn't sleep in your bed: if your baby sleeps in your bed, you can roll over on him. In a crib, there is no one who can possibly roll over on the baby! Also there is nothing that can stop your baby from rolling off the bed. Newborn babies can DIE if they roll off the bed . In a baby's crib, if a baby rolls too far, they would just bonk their head a little. Also, never put blankets in a baby's crib, because they can get on their face, stop breathing, and DIE!

When Should I Take My Baby to the Doctor?

You should take your baby to the doctor when your baby has an appointment there, or is sick, or is hurt. Usually, when your baby has a doctor's appointment, it is because your baby needs a vaccination. Vaccinations prevent sicknesses and do not cause autism. In fact, my mommy didn't vaccinate me when I was a baby and yet I'm autistic! Also, if you hear that your baby is going to take a medicine that you don't want your baby to take, DON'T argue with the doctor! Ask questions instead.

What Should I Do If My Baby Has a Diaper Rash?

If your baby has a diaper rash, treat it with ointment. The best ointment is zinc-oxide ointment!

When Should I Feed My Baby Solids?

Once your baby's pediatrician says it is okay, your baby can have any food that it is able to bring to its mouth besides pecans, marshmallows, peanuts, and other things that are small or hard to chew.

What Should I be Expecting?

If you're pregnant with a baby, expect it to be like you: hungry a lot and hard to take care of.

How Should I Know When To Feed My Baby?

Newborn babies shake their heads and suck their thumbs when they are hungry. Other babies cry when they are hungry. Breast milk is best for babies. Formula is good, too. Don't give babies real milk!

What Can I Do To Help My Baby's Development?

Babies have good eyesight on things that are black-and-white. The book Look-Look is full of black and white things! Order it online to help with your baby's development.

How Do I Know When My Baby Will Do What?

Your baby's pediatrician will know, or you can contact Early Intervention to find out about it. All babies develop differently.

How Should I Show Love to My Baby?

Now that you have read my book, showing love to your baby is simple now that you know more about them!















Clearly, my seven-year-old has a firmer grasp on science than the leaders of the Cult of the Natural Mom. Here's what she got right that Bill and Bob Sears got wrong.

Introducing Solids: 

What my seven-year-old says: "If your baby's pediatrician said your baby can have it, it is safe for your baby. So is it if there is a picture of something your baby can do on it. Some babies that are five months old can have apple-sauce." [This refers to the labels on foods that say "supported sitter," "sitter," "crawler," or "toddler."] / "Once your baby's pediatrician says it is okay, your baby can have any food that it is able to bring to its mouth besides pecans, marshmallows, peanuts, and other things that are small or hard to chew."

What Dr. Sears says: "It's best to wait until at least six months to introduce solid food." / "By six to seven months of age, the intestines are mature and able to filter out more of the offending allergens. That's why it's particularly important to delay introducing solid foods if there is a family history of food allergy, especially to delay introducing foods to which other family members are allergic."

What the science says: Vivian is right. Sears is wrong. The AAP confirms it's okay to introduce solids foods, including highly allergenic foods, when the baby's pediatrician approves and when he has reached the necessary developmental milestones (which can happen for some babies at as early as four months of age). And the science shows that waiting too long for solids actually increases the risk of food allergies.

Safe Sleeping

What my seven-year-old says: "The safest place for your baby to sleep is in a crib. It's not just that your baby has to be in a crib. The crib [should be] in the baby's parents' room. Here is why. If your baby does not sleep in your room, it will increase the risk of SIDS! Just like what would happen if you baby sleeps on his tummy! Now, why your baby shouldn't sleep in your bed: if your baby sleeps in your bed, you can roll over on him. In a crib, there is no one who can possibly roll over on the baby! Also there is nothing that can stop your baby from rolling off the bed. Newborn babies can DIE if they roll off the bed . In a baby's crib, if a baby rolls too far, they would just bonk their head a little. Also, never put blankets in a baby's crib, because they can get on their face, stop breathing, and DIE!"

What Dr. Sears says: Sears claims that bed-sharing with a baby is actually safer than having a baby sleep in your room in a separate bed. He supports this claim by pointing out that all of his kids bed-shared and survived, and by collecting testimonials from parents who bed-share, whose babies aren't dead.

What the science says: Vivian is right. Sears is wrong. A massive study, the largest of its kind, examined rates of sleep-related death in babies across all different parenting styles and found that babies who bed-share have a higher rate not just of suffocation and overlaying, but also SIDS itself, compared to babies who sleep separately from their parents. This risk exists even when parents practice safer cosleeping. That's not exactly welcome news to me, since I bed-share with my son, but science is real whether I like it or not. That's why the American Academy of Pediatrics is clear on their sleep safety recommendations, which are identical to my daughter's. Room-share, but don't bed share, and put babies on their backs in a crib with no pillows or blankets.

Vaccines
What my seven-year-old says: "Vaccinations prevent sicknesses and do not cause autism. In fact, my mommy didn't vaccinate me when I was a baby and yet I'm autistic!"

What Dr. Sears says: "Some research shows that the measles virus in the MMR vaccine, which is given at age 1, may be one of the 'triggers' that begins the cascade of intestinal inflamation that leads to brain inflammation and autism. Honestly, I've read ALL the research, and both sides present good data and good arguments."

What the science says: Vivian is right. Sears is wrong. To date, there have been 118 studies-- 107 of them on this list-- proving that vaccines don't cause or 'trigger' autism. They are all much, much larger and more reliable than the single fraudulent study carried out by a rogue physician who is no longer permitted to practice medicine. Millions upon  millions upon millions of children have now been studied, and it is clear that vaccinated children do not have higher rates of autism. That's why it's the consensus of the American Academy of Pediatrics, the Centers for Disease Control, and every other major medical establishment in the industrialized world that vaccines do not cause autism.

Medication
What my seven-year-old says: "Also, if you hear that your baby is going to take a medicine that you don't want your baby to take, DON'T argue with the doctor! Ask questions instead."

What Dr. Sears says: "Try to avoid over-treating with unnecessary antibiotics [...] If the ear is not red or bulging and your child is acting fine, you may not need another course of antibiotics."

What the science says: Vivian is right. Sears is wrong. While increased antibiotic resistance is a serious consequence of the overuse of antibiotics-- something caused largely by the use of antibiotics in animal agriculture-- it is not a parent's place to decide when they are, or are not, necessary. The AAP advises doctors to be more judicious about when to prescribe antibiotics. It does not ask parents to make that call. If you're not a physician yourself, you are not in a position to "try to avoid over-treating." Ask questions if you're concerned. If your doctor thinks it's okay to forgo antibiotics, great. But don't make that call yourself.

Early Intervention
What my seven-year-old says: "Your baby's pediatrician will know, or you can contact Early Intervention to find out about it. All babies develop differently."

What Dr. Sears says: Sears's website has many articles about child development. Not a single one of them advises parents to talk to a pediatrician or Early Intervention about developmental delays.

What the science says: Vivian is right. Sears is wrong. Hands-down. The American Academy of Pediatrics, Zero to Three, and the CDC all strongly encourage regular developmental screening and early intervention for children who are not hitting developmental milestones on target. Science shows that there are essentially no drawbacks to early intervention: no side effects, no risks. Yet early intervention dramatically improves the wellbeing and learning of children with developmental differences. They speak, run, play, interact, and learn at a much, much faster pace and more completely than their similarly delayed peers who do not get EI.

Bonding
What my seven-year-old says: "Showing love to your baby is simple."

What Dr. Sears says: Well, there's an entire culture behind this one. Dr. Sears claims that his highly marketed form of parenting is the be-all, end-all of baby bonding. He warns against formula, cribs, strollers, and all those other tools for not-quite-so-perfect moms who don't necessarily want their children attached to them like limbs at all times.

What the science says: Vivian is right. Sears is wrong. there are as many ways to bond with babies as there are babies. Bonding is highly individual and varies based on the needs of the individual parent and the individual child. The American Academy of Pediatrics advises parents to bond through eye contact and loving touch, but emphasizes that babies with traumatic births and babies who can not be breastfed can still bond successfully.

This last part is what means the most to me, out of my daughter's entire masterpiece. When I had her, I honestly believed that, if I didn't do everything according to the rules prescribed by Sears, I would somehow not have the close bond with her that I desperately craved and wanted. As a result, I made myself sick and exhausted through years of unnecessary toil. I worsened my scoliosis-related back pain by wearing her for years. I gave myself premature osteoporosis by breastfeeding her for two-and-a-half years while battling an eating disorder. I went years without going out, or spending time with friends, or even remembering who I was outside of "Mama."

And it was all unnecessary. I don't regret bonding with my daughter, but when I had my son, I quickly learned that breastfeeding, baby-wearing, and immersive, all-consuming parenthood are not necessary-- or even always helpful-- for creating a strong bond between parent and child. In fact, my bond with my son was strengthened by the fact that I weaned him when it was medically necessary, that I sometimes leave him with babysitters when I need a break, and that I pee in peace without wearing him with me into the bathroom. I love him just as deeply and completely as his sister, because I bonded with him in the unique way that he and I both needed-- Sears be damned.

The Sears family isn't just sanctimonious. It's dangerous. They fuel the culture of women who forgo medically necessary medication so that they can breastfeed. Of moms who use the proven-dangerous alternative vaccine schedule recommended by Sears, unknowingly jeopardizing their children in the process. Of moms who make medical decisions that contradict the expertise of their pediatricians, because Sears told them that mom knows best.

My allegedly brain-damaged 7-year-old can tell the difference between Sears and science. Can you?

Developmental Delays Made Me a Mother

My son had a developmental evaluation a few days ago. It was his second in his eight months of life.


My son ultimately passed his screening, though he’s lagging a bit behind average in his gross motor development. This didn’t faze me at all; we’re a family of late walkers and early talkers. We’re clumsy and intellectual. Maybe he’ll surprise us and grow up to be a star athlete rather than a book worm, but for now, he’s following a path toward becoming himself, and, like his hair color and eye color, it's likely to imitate his closest relatives. 

The strange thing is that I hadn’t always been this accepting. Almost seven years ago, I had encountered the professionals at Early Intervention for the first time, and it was shocking and scary for me. I had cried. I had screamed. I had punched my pillow. I had called friends and relatives in absolute choking tears. Why?

All because of one tiny little glitch in my daughter’s development: she wasn’t supporting weight on her legs. It was a melodramatic, hysterical reaction to have to something so incredibly insignificant, but, at the time, it seemed like one of the biggest crises I had ever encountered.

 After my son’s evaluation, I started thinking about how much I have changed in the last seven years. I did an archaeological dig through the ancient ruins once known as Myspace. In one of my last posts before I abandoned the glittery .gifs and horrible background music, I had begged for help from my friends on a blog post:

 

:( 
I took Vivian to the doctor yesterday and everything seemed just fine. The doctor was gushing about how chubby and cute and bright she was, and was saying that she seemed to be ahead of the curve on every milestone. "She's doing great, you're doing an excellent job with her!" the doctor had said. 
And then came the reflex test. :( Vivian is way behind the typical curve with controlling her feet; she's supposed to spread her legs out and try to balance on her feet as I put her down, and she doesn't. I had no idea that she was supposed to be doing that. :( Most babies her age can stand for a  few seconds with support. 
The doctor looked at her legs, spine, and feet, and said there didn't seem to be any physical problem, and said that because Vivian's so talkative and aware, it's highly unlikely that there's a mental problem. But, for some reason or another, she's behind on her motor development... Far enough behind that she's going to need classes with a group that helps children with developmental delays. I can't even describe the way it felt when they handed me the pamphlet for Hand in Hand, which deals mostly with children who have autism and cerebral palsy. It's not that I think she's "better" than children with delays, I just never imagined that she would have any.
 I feel horrible and panicked and guilty. I don't know why I've got it in my head that I did something wrong, but I feel like I'm a terrible mother. 
Most likely, she just doesn't know how to use her legs much because she never has to (I'm holding her all the time) but it still scares me that it's a significant enough delay to warrant treatment. The doctor reassured me that it's very unlikely that there's anything truly wrong with her, and said that, most likely, she's just going to be a late walker. She's either ahead of the curve or right on it with all her other keystone developments. I still feel really awful, though. :(
Please hug me. 



“I feel like I'm a terrible mother.”Oh, how those feelings had wounded me, back then. I had done everything right. All-organic diet, exclusive breastfeeding, natural birth, delayed cord clamping, no medications, no mercury, no vaccines. I did everything right, and as much as I had tried to tell myself that I wasn’t so arrogant as to think that developmental delays only happened to bad parents, the feeling was there.I did everything right. This was supposed to happen to someone else.When I see the things I wrote and felt during what seemed like a total crisis—something that really wasn’t a big deal at all—I feel a conflicted jumble of anger and pity for the mother I was seven years ago. I want to hug her. She was asking  for hugs, after all, with the tone of a scared child who had accidentally waded into the deep-end before knowing how to swim out. She was a mom who knew how to be a good parent only if everything went exactly as she planned. And when it didn’t? She thought it was all over.Here’s what I wish I could go back and say to that scared woman, myself at twenty-one: You’ve only been a mom for six months. You have so, so, so much life ahead of you and your children (yes, children, plural—there’s a black-eyed baby boy waiting for you in your future!). You are so naïve that, right now, you honestly think that the best moments of parenthood are already behind you, just because of a failed developmental screening.

They’re not. They’re still ahead of you. They’re still ahead of me, too.Your daughter’s developmental delay is the very, very beginning of you becoming a mother. You’ve loved her for the last six months, but you weren’t her mother yet. Not really. Because being a mother isn’t about knowing what to do based on those endless hours you spend poring over the internet, plagued by your neurosis. Being a mother is about love, and it’s about acceptance. And until you can really look at yourself and say, “My child is different, and I love her exactly the way she is,” you’re not a mom. You’re just practicing.If your daughter hadn’t been born different, it might have been years before you really, truly became a mother. You would have accepted her, but the acceptance would have been superficial and empty-- acceptance of an idea of who she should be, not an acceptance of who she actually is. How can anyone say that they really love someone, if they want to change who that person is? How can you really say that you’re a mother, if the child you really love is an expectation—not a reality?
There are so many wonderful things in your future, and your daughter’s developmental differences aren’t obstacles to that. They are catalysts for it. That early babbling? She’ll say her first word in just a month and sentences won’t be far behind. Later, she’s going to spend hours upon hours talking to you about cats and dinosaurs and magic and love. That clumsiness? It’s perfect. You’re not going to have to struggle to keep up with her, or worry about her climbing your countertops. All those things that just make her seem… odd? Oh, Juniper. That’s the best of the best of it. She will be wonderful. You will love her, and you will love her differences, and you will not want to change a single thing about her.One day, you will bring a little baby boy into the world, and it will be entirely different because you will have already learned this critically important lesson. You will already know how to be a mom, and when you meet him, his soft little body in your arms and his fuzzy black hair against your fingertips, you won’t fall in love with an expectation of who he is. You will fall in love with anything and everything that he may become. You will know the most important lesson a mother can possibly know: that your job of creating your child is over when they are born, and that your task from then forward is to discover them. You will be a better mother because of the lessons your older child taught you.We have a long, long way to go. Neither of our children are anywhere near the difficult ages of adolescence, and both of them are happy and healthy, and the biggest challenges we have in parenthood are almost certainly waiting for us down the road. These are days that we will remember as the happiest: when she was a bouncing ball of energy nearing seven years old, and when he was a thoughtful little cuddle-bear who loved touch-and-feel books and lullabies. Things will be hard, one day, but that day isn’t yet, for me or for you. Right now, from your world in 2008 and my world in 2015, we are both looking at the good times. Enjoy them while they last, and I’ll do my best to do the same.This isn’t the end. It’s the beginning of something wonderful and magical.

I Gave My Child Autism

I gave my child autism.

It wasn’t because of vaccines. It wasn’t because of tuna. It wasn’t because of formula. It wasn’t because of Tylenol, ultrasounds, antidepressants, Pitocin, tobacco, television, or pesticides.

How do I know? Because she wasn’t exposed to any of these things when she was first diagnosed with developmental delays.

Yet, I know it, from the bottom of my heart: I gave my child autism.

My first clue that I gave my child autism came when she was in the middle of an evaluation by a speech-language pathologist at two and a half years of age. The therapist had noted that her eye contact was poor, but acceptable for her age.

“Oh,” I explained, looking straight at my lap, “Well, that’s probably a learned behavior. We just don’t really ‘do’ eye contact in our little family. I’ve never been much of an eye contact type.”

The speech therapist bit her lip.

The same pattern was played out time and time again as we danced between physical therapists, occupational therapists, speech therapists, neurologists, psychologists, and teachers.

“No, she’s not potty-trained, but I still had accidents all the way into second grade. It just runs in the family.”

“Hyperlexia? Yeah, she’s a great reader. My family is full of early readers.”

“Picky eating is just something she got from me. I don’t like food much. And as a kid, I would completely flip out if someone tried to make me eat with a spoon or eat foods that had touched each other on my plate. No big deal."

“Clumsiness runs in the family. I couldn’t ride my bike until I was eight, so the motor delays are just in her DNA, that's all.”

“Oh, sure, she won’t wear her pants correctly, but that’s just another thing she got from me. You should have seen how I use to shriek if someone put a turtleneck on me!”

“Sure, she can’t dress herself. But I couldn’t dress myself at her age, either. I was almost eight before I could tie my own shoes. Fourteen before I could put my hair in a ponytail. No big deal.”

“The chewing on her hair and shirt collars—she probably learned that from me. I chew my shirt collars to shreds. It’s why my wife doesn’t let me borrow her clothes anymore.”

“Yeah, I know, but obsessive interests are just a thing we do in our family. You should hear the Pandora’s Box that opens when I’m given an opportunity to talk about the taxonomy of freshwater fish. We Russos are just passionate people.”

It was when I said this that I noticed the expression on the school psychologist’s face—the desperate attempt at a poker face, like someone trying to choose between choking on a laugh and spitting it all over the table.

“Maybe,” she said, pursing her lips carefully and jotting something down in her notebook, “You might want to consider getting yourself an evaluation. Most autistic people of your generation weren’t diagnosed, especially if they were verbal.”

Me? Autistic? Could I be?

Really?

In my own childhood, I certainly had some signs, but the symptoms I had were all explained away with one label or another. My avoidance of certain foods and clothes, and my extreme passion for things that interested me, were diagnosed as OCD. The nonsensical blur of numbers that appeared every time I saw a math test was diagnosed as dyscalcula. My strange patterns of learning were just assumed to be part of the developmental fingerprint of a gifted and eccentric child.

I am one of many people who, today, would likely be diagnosed with autism, although during the 1990s, the diagnosis was almost exclusively reserved for children who were nonverbal. Children like me were given other diagnoses. Sometimes they fit; sometimes they didn’t. But the pattern that set me apart from the norm was there-- and was undoubtedly similar to my daughter's.

In fact, the majority of scientists believe that there is no “autism epidemic” at all—that people with autism are no more common than they were 20, or 50, or 1,000 years ago. Autistic individuals have always been a part of human society. It just wasn’t until recently that the condition was correctly identified. It was even more recently, in 2013, that medical science finally acknowledged that Asperger’s syndrome and PDD-NOS are simply variations of autism, not distinct conditions. The science of autism changes constantly, and we quickly realize that many people with autism have been overlooked or misdiagnosed.

Consider these two studies, for example. One looked at the diagnoses of children in United States special education from 1984 to 2003. They found a huge increase in the number of cases of autism, and a corresponding decrease in diagnoses of mental r*tardation and other learning disabilities. Children with the exact same symptoms—little or no speech, sensory differences, difficulty with socializing, and learning challenges—were called “mentally r*traded” in 1983 and called “autistic” in 2003. The rate of one diagnosis went straight up while the rate of the other vanished to nearly zero, at the exact same rate. Likewise, many kids who in the 1990s who were diagnosed as obsessive-compulsive or ADD/ADHD would have been labeled as autistic today. The study’s authors concluded that there is no increase in the number autistic children, only the number of autistic children who are correctly diagnosed.

The other study directly compared this data, along with other studies about the incidence of autism diagnosis, with the incidence of the notorious MMR, or measles-mumps-rubella, vaccine. The conclusion: “There has (probably) been no real increase in the incidence of autism. There is no scientific evidence that the measles, mumps and rubella (MMR) vaccine or the mercury preservative used in some vaccines plays any part in the aetiology or triggering of autism, even in a subgroup of children with the condition.”  
In other words: no, MMR doesn’t cause autism, ever, and autism probably isn’t on the rise anyway.

Autism is almost entirely genetic. The studies about the heritability of autism, particularly twin studies, have found that over 90% of the differences between autistic and non-autistic people are because of DNA alone. In about 20% of these cases, the genetic differences are linked to a specific, measurable chromosomal abnormality like fragile X or 22q11.2 deletion. The others are far more complex and harder to find, but still clearly inheritable, and appear to be just as genetic in origin as a child’s eye color and skin tone.

My youngest child is eight months old. He just learned to sit up a two weeks ago, much to the excitement of his 7-year-old sister, who proudly declared that, “Maybe he has gross motor delays, and just might be autistic like Big Sister!”

She leaned toward my chubby, black-eyed baby boy and cooed, “We’re all very special in this family. This family is full of brain problems and love.”

He grinned, leaned forward, and planted his big, toothy mouth against her cheek. He wrapped his little arms around her head and gave her his drooly “kiss” while they both giggled with absolute delight. Then he toppled over awkwardly and I scooped him into my arms.

This family is full of brain problems and love. Some of the brain problems are autism. Others look a lot like autism. Some of them—like my son’s-- might not be autism at all, just normal variations of human development that follow unique, meandering patterns no more or less exceptional than the color of their eyes or the shape of their noses.

I made my children many things: olive-skinned, dark-eyed, black-haired. I made them affectionate and sensitive and cuddly. I also made them clumsy, awkward, and quirky. And in my daughter’s case, I also made her autistic.

But it wasn’t because of something I did wrong. It wasn’t because of her shots, or her environment, or my parenting. It was because of the little chains of carbon inside all of our bloodstreams, the chromosomes my kids inherited from me and only me. It was because we have a very special family, and it’s full of brain problems and love.

And it’s perfect, exactly the way it is.

My Journey Away From the Anti-Vaccine Movement

My son was as calm as a cat on a cushion when I undressed him for his two-month checkup. I lay him on the examination table in his fuzzy, sky-blue cloth diaper and watched as the nurse injected him with one vaccine after another. I knew them by heart. Hepatitis B. Diphtheria, tetanus, and acellular pertussis. Haemophilus influenzae, type B. Pneumococcal conjugate. Inactivated polio. The nurse gave them like a clockwork machine: needle, Band-Aid, needle, Band-Aid. He fussed until he tasted the sweet-flavored rotavirus vaccine, given by mouth.

“The doctor likes to wait a few minutes, just to keep an eye out for reactions,” the nurse smiled, “She’ll be here to check on you in a little while.”

The door closed and I brought my son to my breast, where he looked up at me helplessly, sighing those last few tears away. I felt myself drowning in a flood of emotions: the postpartum hormones, the feel of his tiny body in my arms, the way he looked to me for comfort. Vividly, I remembered a doctor’s visit six and a half years before—a lifetime ago, it seemed—and started crying.

My daughter’s two-month checkup was completely different from my son’s. I had marched into the doctor’s office full of youth and panic, a bold “NO VACCINES” note written on her intake forms. I didn’t want a shot going anywhere near my daughter. I had seen the stories online: horrific tales about healthy children getting an injection and immediately becoming vacant, unresponsive, screaming monsters. I had heard all about what vaccines did to kids: autism, autoimmune disease, behavioral outbursts, brain damage, life-threatening allergies. I wasn’t going to let my daughter become a statistic.

The first pediatrician my daughter saw wasn’t exactly polite about a twenty-one-year-old Google University graduate fighting a crusade against immunizations. When I spouted my speech about “too many, too soon,” the almighty Doctor Sears, and the rising rates of autism, she rolled her eyes and snapped, “You’re a lucky kid. You’ve never seen a child choke to death on his own snot from whooping cough. And I sure hope it stays that way. I have, and it’s not pretty.”

The pediatrician gave a series of fast, scientifically solid rebuttals to every single concern I raised about vaccines. She said that autism rates weren’t going up—just autism diagnoses. She said that the vaccine schedule was created by experts who spend their whole lives studying pediatric immunology, and that they know a bit better than the crunchy mom cliques on the internet. She said that vaccines work, and that I was gambling with my daughter’s life by refusing them. Every word she said made sense, but I still clung to my convictions like a talisman: no vaccines for my kid, because vaccines cause autism.

It was just two months later, and with no immunizations in between, that the same doctor examined my daughter and frowned. She pulled out a pen and wrote down a phone number.

“This is Early Intervention,” she said, “This baby has some developmental delays, and you need to get in touch with them for help.”

“What? How?”

“We don’t know what causes developmental delays. But it’s obviously not vaccines, huh?”

I felt my stomach sink. I had done everything right. How could something be wrong with her? I had eaten nothing but organic food when I was pregnant. I hadn’t touched tuna. I had taken my prenatal vitamins. I had agonized through twenty-three hours of labor without a single Tylenol. I was breastfeeding exclusively. These things were supposed to happen to other people—people who do things wrong. They weren’t supposed to happen to me.

The developmental delays became more and more pronounced. Even with physical therapy, my daughter was clumsy and awkward, struggling to balance her body when she crawled and stood. She couldn’t walk until she was sixteen months old, but by that point, she was already copying sentences she heard other people say. She wouldn’t look me in the eye, and she was extraordinarily anxious, screaming at the top of her lungs every time I tried to put her down.

Still, I buried my head in the sand for as long as I could, believing her apparent intelligence somehow negated her increasingly obvious disabilities. When she was two and a half, I wanted to show the world that she was intelligent and could memorize nearly anything. Looking to the Internet for validation, I got out my camera and started recording.

“Can you say ‘To be or not to be…’?” I asked her.

My chubby-cheeked toddler flapped her arms up and down and recited the entire famous soliloquy from Hamlet.

“Okay, now do ‘If we shadows have offended…’”

She spun around in a circle and said all the final lines of A Midsummer Night’s Dream.

This went on for nearly hour while I prompted her to recite a half-dozen other soliloquies, poems, speeches, and storybooks, ending with a flawless recitation of the Preamble to the Constitution. I turned the camera off. Proud of her accomplishments and certain that such an intelligent child couldn’t possibly have anything wrong with her, I uploaded the video to YouTube. It was a few days before anyone found it. There were a few thumbs-ups and one thumbs-down, and then the first comment:

“That kid is autistic as hell. Does the mom not know?”

I deleted the video from YouTube, and then from my camera, and cried. I had my head hung low when I went to her next checkup.

“How’s she doing?” the pediatrician asked.

“How’s she doing?” my daughter parroted.

“She’s doing… great,” I said. “She’s so smart and so sweet, but I think she has autism.”

“She’s so smart and so sweet, but I think she has autism,” my daughter agreed.

The pediatrician nodded slowly. “We’ll see. We’ll get you in to see a neurologist.”

There was a long pause. My daughter had gotten a few vaccines that the doctor had managed to convince me to consent to—“just the really important ones,” I had told myself. But I couldn’t deny that she had developmental delays long before she’d gotten a single shot. I couldn’t deny that I had made a mistake. I couldn’t deny that vaccines hadn’t injured my child, and that she was simply born with any differences that she had.

“I’m ready to get her caught up on her shots,” I finally said, shaking.

The pediatrician looked like she was ready to hug me or leap into the air with joy, but instead she smiled and said, “Let’s get started, then.”

Shot by shot, my toddler—my beautiful, funny, smart, loving, clingy, crazy toddler—was injected with those miracles of medicine, weapons in the war against childhood mortality. As I watched her get that first round of shots, I felt a deep pang of regret, realizing just how naïve and ignorant I had really been. I held her in my arms to comfort her and thought about how lucky I was to live in a time and place where my mistake didn’t cost my girl her life. I thought about my grandmother’s sister dying of diphtheria at three, and about children in India left crippled by polio even today, and about outbreaks of whooping cough that were starting to make a comeback in the U.S. because of parents like me, who were afraid of vaccines.

When the low fever and fussiness passed, my toddler wasn’t any more, or any less autistic than before. With a series of therapies and books and special attention and sensory toys, she continued blossoming in her own quirky and undeniably different way and, over the course of the next several years, went on to become a precocious reader, a champion for the rights of animals, an amazing writer, a kind and caring friend, and, eventually, a doting big sister.

When I brought my son home from his two-month checkup, my daughter, then six and a half years old, was waiting for him. She clumsily ran to us with his rattle in one hand and chirped, “Did he have to get vaccinated today?”

“Yup,” I said, putting one arm around my daughter while cradling my son in the other, “Lots of them.”

“It’s okay, sweet boy,” she cooed at him, kissing his little nose, “Shots are very important. They keep you from getting sick. We don’t want you to get sick, because we love you.”

“When you were his age,” I confessed, “You actually didn’t get any vaccines.”

“Why?”

“I thought they would give you autism.”

My daughter cocked her head incredulously, holding my son’s tiny hand in hers. “Why would you think that?”

“Because I was silly. Some people on the Internet had told me that shots cause autism, and I was silly enough to believe them.”

“Couldn’t I have gotten sick?” she asked, a little sadly.

“Yes. You could have. I made a big mistake, but we’re lucky you didn’t get sick.”

“Very lucky,” she confirmed, then added matter-of-factly, “It’s okay that I have autism, but it wouldn’t have been okay if I had gotten sick or if I had died or something.”

I closed my eyes and savored the feeling of my two perfect children in my arms: my brilliant, quirky little girl and my calm, thoughtful little boy.

“You make me proud, kiddo,” I smiled.

“You make me proud, too, Mama.”

Motherhood is the most powerful force of nature. It has turned teenage girls into mature women. It has turned wild partiers into responsible mothers. It has turned reckless texters into cautious drivers. And it transformed me. I began as a frightened child who feared vaccines almost as much as I feared autism, but I am now a fully dedicated advocate for the rights of autistic people and for the medical miracles that can keep our children safe from disease. I am grateful every day that I learned from my mistakes and that I’m blessed with the opportunity to help prevent other parents from making the same mistake

What Could Have Happened-- And Didn't

The stomach bug hit me first, then my wife, then my six-year-old daughter, then, last and hardest, my seven-month-old son. We were piled into the bed with blankets and ginger ale and buckets, feeling miserable and delirious, when the baby started vomiting uncontrollably. He couldn’t keep down formula or water or Pedialyte, and soon he became weak and lethargic. Despite being too sick to safely drive, I rushed him to the E.R., where I my poor baby became one of the 200,000 babies per year who needed emergency treatment for complications of rotavirus. The pain of cramping and dry heaves were nothing compared to the pain of seeing my baby in danger.

That’s what could have happened—and it didn’t.

Instead, this happened:

The stomach bug hit me first, then my wife, then my six-year-old daughter. We were piled into the bed with blankets and ginger ale and buckets, feeling miserable and delirious. The baby was fine, just a little sleepy and grumpy from a flu shot a few days prior. Bit by bit, we all recovered, eventually getting back into the swing of normal life, and counted our blessings that none of us got seriously ill. We felt particularly lucky to be blessed with a healthy and happy baby during a difficult week.

When we were all feeling better, my wife mentioned how curious it was that our youngest was untouched by whatever highly contagious stomach bug had swept through our family. I couldn’t think of why it might be. My son isn’t breastfed; he couldn’t have gotten antibodies from me. While I’d love to credit good hygiene, I know that wasn’t the case. It’s impossible to keep anything clean and sanitary when you’ve got three weak, stomach-sick people clamoring to use one bathroom, sleeping in one bed, and taking turns changing a baby’s diapers.

Then it hit me: the one difference between my son and the other three members of our family. My son received the rotavirus vaccine at his two-month checkup, his four-month checkup, and his six-month checkup, in accordance with the recommendations of the CDC and AAP. The rotavirus vaccine, given as an oral suspension, provides protection against five common strains of this potentially deadly infection, and prevents countless hospitalizations and deaths in infants, who are among the most likely to succumb to complications from the disease.

So why did my older child get sick? That’s the part that stings. My daughter got sick because of a mistake I made with her that I didn’t make with my son. When she was born, I was ignorantly aboard the anti-vaccine bandwagon and thought of “childhood illnesses” as minor, and of immunizations as potentially deadly poisons. I learned my lesson (thanks in no small part to my daughter’s autism), but only just in time. She was “caught up” on all of her vaccines by age three, at which point her pediatrician considered the rotavirus vaccine to be unnecessary, since it is specifically made for infants.

My daughter got sick—endured days of pain and tears and hunger and thirst—because I didn’t have her vaccinated. And my son made it through my family’ ordeal without as much as a spit-up, because I did have him vaccinated. If I had repeated my mistakes with him, it’s entirely likely that I would be by my son’s side in a hospital right now, instead of joyfully recounting the story of what didn’t happen. The difference matters. Even if I didn’t have the solid science to back it, I can look at my own family and know that I made the right decisions with my son’s health.

Today, after a rough few days, I am grateful for many things. I’m grateful for ginger ale and popsicles and applesauce. I’m grateful for two dogs who stick by my side when I’m not well. I’m grateful a partner who holds me tight when I’m sick. I’m grateful for an unfortunate opportunity to learn that the combination of Phenergan and Ativan apparently makes me sing campfire songs at the top of my lungs. I’m grateful that my daughter caught this bug when she was old enough to handle it without complication. And more than anything? I’m grateful that I had my son vaccinated, and that he didn’t have to face hospitalization or worse because of my mistake.

My baby is safe and well because of vaccines.  

Autistic Six-Year-Old Discusses Vaccines

I took this video before my interview with NPR because, as I suspected, I was accused of being a fake person within minutes of the show's airing. Here's my real autistic child talking frankly about vaccines. She's not a robot, sockpuppet, or a shill. We're both real people.