How to Prevent Autism

Expert Advice from Medical Professionals

Dara Berger

• Publisher: Skyhorse
• Year: 2017
• ISBN:
  9781510714687
• Topic: Medicine
• Subtopic: Diseases & Allergies

The statistics are alarming and become more so every year. The Centers for Disease Control and Prevention estimates that 1 in 68 children have been identified with an autism spectrum disorder, making it one of the fastest growing developmental disorders in the United States. Further, the CDC estimates that parents with a child on the autism spectrum can have nearly a 20 percent chance of having a second child with autism.In How to Prevent Autism, Dara Berger shares her personal journey with autism. She describes everything that went wrong with her son that led to an autism diagnosis and everything she did differently to prevent her daughter from suffering the same fate. She interviews eight well-known ASD experts--including doctors, nutritionists, nurses, and scientists--about the factors that have led to the growing epidemic of autism. Based on the best practices for preventing autism in children, each professional offers perspectives grounded in their own research and their patients' improvements. The book covers every detail--from the importance of mothers' cleaning out their bodies preconception, through common genetic mutations that may put children at risk, to the crucial role of nutrition in prevention.All parents agree that every choice counts when it comes to the health of their children. As Dara Berger makes clear in this personal, informative, and authoritative book, the stakes could not be higher when it comes to autism.

PART I

CHAPTER 1

DYLAN’S STORY

I woke up every morning for the first two years and started crying before my feet even touched the floor. The first thought on my mind was, “I can’t believe he still can’t talk.” The next thought was, “I can’t believe he still has autism.” It felt like a scene from “Groundhog Day,” each day starting in exactly the same way, except I didn’t get to learn French or how to ice sculpt. This wasn’t a movie, this was my life and I was beyond devastated each morning. I used to drag myself from the bed to the bathroom and literally have to give myself a little pep talk. I would look into the mirror and initially think, “I just can’t do this anymore.” Then I would speak out loud, while pointing to myself in the mirror and say, “You can do this. You have to do this. If you don’t do this, then who will.” And I would stay in that bathroom until I was ready to say, “Okay, I can do this.” There were days that it took a long time to muster those words and other days that I just faked it, going about my day like a robot. To say the pain was immense would be an understatement. There were actually times in those first two years that I stood on Broadway right outside my apartment and for a split second looked up at the oncoming traffic and thought, “I just cannot take this pain for one more second.”

Lucky for me, those thoughts were very short-lived and I knew I just needed to get through that moment. Sure enough, I would feel better minutes later. The reason I include these very private and painful feelings that not even my husband was aware of at the time is to show you the extent to which the pain was just beyond measure. There is no way to quantify how upsetting it is to have a child become trapped in autism. For me, it was like he was dying a little bit every day while he was on his downward spiral. Then, once he finally bottomed out, it was hard to recognize that this was still my little boy other than the fact that he looked like my son. I felt completely helpless to stop him from slipping away a little bit more each day.

Another vivid memory from that time is of having dreamt every night that I was in the middle of the ocean drowning. Now it doesn’t take a psychiatrist to figure this one out. I was drowning every day, all day long. It felt as if I was treading water out in the open sea with no land in sight. I was exhausted in every way possible: physically, mentally, and emotionally. It’s amazing to me that I made it through with my marriage still intact. I think this experience has forced my husband and I to connect on a level we never imagined was possible. I remember just a few weeks ago, we took my son to look at a new school and I explained what I thought of it afterwards. My husband remarked that he already knew. He went on further to say that he feels like we can have a conversation without speaking just by looking into each other’s eyes. And he is absolutely right. I attribute some of this to having a nonverbal son for seven years while we tried feverishly to restore his speech. We had no choice but to become very attuned to nonverbal language, since it was Dylan’s only way to communicate for almost seven years.

My description of the debilitating pain of having a child diagnosed with autism is intended to instill a sense of immediacy to do all you can to prevent it. Autism is not like many other diseases or conditions in that your child either loses function or shows delay over three areas: cognitive, physical, and social. It can be very difficult to reverse autism once it gets going and, for some, the brain can be so severely impacted that full recovery may not be possible. This is the reason prevention is paramount. In my son’s case, we have been working tirelessly to recover him for the past ten years and have made huge inroads. He has not yet recovered, but I thank God every day that we were able to restore his speech. It was through the help of some of the practitioners in this book that we were able to accomplish this high task. Dylan still has a long way to go and I will never give up on him, nor will his practitioners. Each practitioner has taught me the important lesson of leaving no stone unturned, and sometimes you even need to go back to the same stone and lift it up again.

In order to understand how to prevent autism, one must discuss what types of things might be causing it. There will be many discussions throughout this book on different causes of autism by professionals who hold different positions in the healthcare field, including doctors, scientists, nutritionists, physician assistants, and nurses. I chose a wide range of experts to give you a wide variety of perspectives on preventing this complicated and debilitating illness. What makes autism so difficult to understand is that there is no one factor that precisely causes it, and on the flip side, no one antidote that can reverse it. Scientists and practitioners study every single aspect of a child’s life beginning in utero to see if they can pinpoint the things that may be contributing factors as a way to lower the risks in other children and to find interventions that may help that child recover. I have combed through every little thing Dylan has ever experienced to try to uncover what may have contributed to his autism in order to prevent it from happening to his sister. It can be painful to discover things that you did, which seemed harmless and innocuous at the time, only to realize that it was one piece in the puzzle that may have built up over time, damaging their little body. These discoveries are also important knowledge to have after the fact in order to help decide which treatments might be beneficial in undoing the damage.

HERE IS DYLAN’S STORY:

We tried to get pregnant for the longest time and it just wouldn’t happen naturally. I had no idea at the time that I was truly not healthy enough to conceive a child. This is a concept I understand extremely well now, but the concept was foreign to me over ten years ago. Like most people, I didn’t connect the dots that the way I lived my life had any bearing on my health, since I had been taught that what I ate and the products I used had absolutely no consequence.

My husband and I began trying to conceive a little over a year after we got married. At the time, everyone one around us seemed to be getting pregnant with ease, or so we thought. It was becoming particularly upsetting as anytime I went anywhere someone would ultimately ask me when I was planning to have a baby, as if I could just pick one up at the store. Additionally, people weren’t openly discussing fertility issues as they do now. Nobody warned me how difficult the process can be for some people and what a strain it can put on your marriage when it doesn’t happen so quickly. We endured so many months of “baby sex” (intercourse with the sole intent to get pregnant), which can place a huge damper on your romantic life, to say the least. There also wasn’t anyone to explain that it could take years to recover from this kind of mechanical lovemaking. We decided to get some professional help with our fertility issues and experienced a few failed artificial insemination attempts before my gynecologist and fertility expert discovered that there was a polyp acting like a natural IUD. We had it quickly removed and then moved straight towards IVF. I was really tired of trying to have a baby—no, actually I was exasperated with the process. To say I felt immense pressure to get pregnant would be the biggest understatement of the year. I felt tentative about the idea of using hormones, but couldn’t shoot myself up quick enough with those IVF drugs. I had to get my baby. The desperation was palpable.

Lucky for me, I was able to get pregnant on the very first try. I still remember how scared I felt during those two weeks after the embryos were transferred and all we could do is wait to see if any of them took. You can’t help feeling helpless when things are completely out of your hands; much like how I feel while I wait each day to see if the next treatment I try works and cures my son’s autism. I was immensely thankful when I was told it seemed like two embryos took. It felt like all my suffering was paying off, and things in my life were finally going right.

However, this excitement would be short-lived, given that my OB was very honest by disclosing during my first ultrasound appointment that it looked like only one seemed strong enough to make it. This was one of those juxtaposed moments, where you receive great and horrible news at the exact same time. I was ecstatic at the reality that I was finally pregnant, but secretly sad in knowing that there was a good chance one of my babies would not make it. I tried to stay positive, thinking that maybe the weaker one could hang on. Sadly, my positivity didn’t change the reality that only one viable embryo showed up on the ultrasound two weeks later.

I felt very sad at the time but did not really speak to anyone about it, not even my husband. It wasn’t until very recently that I started marking “yes” to miscarriage on medical forms. I had never really acknowledged it, since we never felt the embryo was really ours given that we were told so early on that it probably wouldn’t make it. Our baby never grew enough to have a heartbeat or any of its specific organs. But I now realize that I lost a baby and Dylan lost his twin sibling. My life is much richer for finally finding a place in my heart for this event. My husband and I even talked about the possibility of naming him Paul after my mother Paula. It seems like such a funny thing to make such a big acknowledgment about something so many years later, but I cannot express to you how right it feels.

There were many other things about my pregnancy with Dylan that were also not so simple. When I look back at his brief two years of life before the bomb dropped out of the sky with the autism diagnosis, it’s not easy to point to any one thing that caused his illness. Like many of the professionals you will hear from throughout this book, I believe there are many things that build up over time and then something ultimately pulls the trigger. The contributors that build up and the trigger are very different for each child. However, once you have traveled down this road, the things that contributed become very apparent in retrospect, and this information is very helpful in choosing the most useful treatments to try to recover your child. It is also equally as helpful in preventing autism in your next child. You have the knowledge to avoid these things the next time around. My understanding and recognition of many of these contributors and signs to look for is the sole reason I have a healthy and completely neurotypical six-year-old girl. Some kids are just lucky, but in my daughter’s case, I worked my ass off to make it happen. Or, I should say, not happen. And the work started years before I ever thought of getting pregnant again. My plan is to one day tell my daughter how her brother took a bullet for her for all of us.

I am thrilled to have the opportunity to share my experience and the wealth of information that I have collected over the last ten years, so that you too can prevent autism. But it won’t just stop there, you can apply this information to prevent many other chronic childhood illnesses. You will also be able to prevent disease in yourself, or begin healing an ongoing illness. I find it most helpful to work with a highly qualified practitioner, especially while embarking on this new, healthier lifestyle. A nutritionist can be helpful in making dietary adjustments over time, whereas a functional medicine doctor or naturopathic doctor may conduct specific tests to uncover possible nutritional deficiencies and imbalances that need to be addressed.

I’m extremely proud of my battle wounds. However, I would never have chosen this journey, since this would mean that I chose for my son to suffer. I am not sure that he would say the same thing, since he is such a beautiful giving soul. He may have asked for autism if given the choice, so that his baby sister would not suffer the same fate. He is the most courageous person I have ever met. Dylan will always be my hero. Until recently, I did not think it was possible to love him anymore than the day he was born.

I will never forget the exact moment he was born. My husband was adamant about not finding out the gender, and kept saying this is one of the few times in life that it will be a wonderful surprise either way. How could I argue with that? Secretly I kind of wished for a girl; I wanted to have that girl companionship, which may be as a result of losing my mom at such an early age. I never got to have that wonderful mother/daughter bond as she was abruptly taken from me at thirteen years old.

I finally gave birth to my son after an extremely unnatural childbirth that I will go into further detail later. The doctor announced that I had a boy, inside I was momentarily bummed. Moments later they took my son over to the table to be examined, which included a lot of poking and prodding. They finally brought him to me after what seemed like an eternity, and gently placed him in my arms. I remember that I looked down at his little innocent body with those huge, gorgeous blue eyes staring back at me and it was love at first sight. I fell in love with him in an instant. It was pure magic! It was one of the happiest moments of my life, evident from the huge gleam in my eyes in the pictures that my husband took in the delivery room that day.

I wish that I could say that we lived happily ever after, although this could not be farther from the truth. Dylan’s stay in the hospital was pretty uneventful, so they let us go home after only thirty-six hours. It would be years later before I recognized how incredibly healthy he was given that he was born five and a half weeks early. His Apgar was an eight and nine out of ten and he was breathing on his own without any difficulty, which was considered a sign that he was extremely healthy. Many babies born that early, including the child of a couple we shared a room with right before the delivery, need assistance to breathe and are put in the NICU for several weeks. Dylan was the picture of good health. The only thing out of the ordinary was immediately following the birth, they took him from us for around twelve hours to keep him under the lights, since he was born with a little jaundice. The hospital considers this completely normal given that it is so common. I, on the other hand, wish I understood that this may have been his very first sign.

As I mentioned earlier, one of the biggest signs was that I could not get pregnant. I was not healthy enough to procreate. In fact, I was suffering from a horrible autoimmune illness referred to as multiple chemical sensitivities, which is basically a state of being allergic to almost everything around you. And yes, I am being quite serious. I used to have to smell a book before I could purchase it, since I was allergic to the different kinds of inks that are used in printing. It even got to the point where I couldn’t sit next to someone on a NYC bus who was reading the newspaper. It was that bad. My biggest fear at the time was that I would get trapped in an elevator with someone wearing too much perfume. At one point, I really thought that I was going to have to leave NYC and live out the rest of my life in a log cabin. Luckily for me this didn’t happen, but my story is not uncommon in being a mother who suffers from a chronic illness prior to getting pregnant and has a child who goes on to be diagnosed with autism. Basically, I am saying that my own illness already stacked the deck against Dylan. This was a pretty big contributor, but it’s still only one of many as I later discovered. The practitioners I interview will also mention that it’s fairly common to hear that mothers of children diagnosed with autism were suffering from some sort of chronic illness or allergies prior to their birth such as Crohn’s disease, asthma, depression, or fibromyalgia. An even more interesting fact is that the same contributors that lead to the child’s autism diagnosis are some of the same things that resulted in the mom’s condition.

Next on my list of contributing factors would be IVF. I will never forget the day I asked my wonderful and caring OBGYN what the risks were in doing IVF. His answer was so simple and unlike most doctors. He told me that there could be overstimulation of my ovaries and that we have no idea what the long-term effect of these drugs are, or if they cause cancer. This was one of the first doctors for whom I ever developed the deepest respect and trust. That was eleven years ago, and I don’t believe any safety studies have been performed on the subject to date. Most women, including myself, are so desperate to get pregnant that the safety concerns would never even cross our minds.

I wonder a lot about what exactly was in those multidose vials I used during my IVF treatment. Sometimes I even consider sending some remaining, unopened medication off to get tested, especially to see if there are heavy metals present. There needs to be some kind of preservative when you are sticking multiple needles in the same container. I want to say for the record that I am not against IVF or those medications, I am merely sharing all the contributing factors that may have played a part in Dylan developing autism, including my own chronic illness at the time of the pregnancy. Now that I have given my disclaimer, let’s get back to Dylan’s story.

Once I was able to get pregnant, there were plenty of other “not so great” influences on him. First, I was on antibiotics during the first trimester for a tooth infection at about ten weeks gestation. I will let the doctors explain in more intricate detail why this can result in a problem and the things that you should do if you find yourself in need of antibiotics. Next, I was exposed to fumes coming from my neighbor’s renovations in the apartment one floor below ours. He was painting his whole apartment using very strong smelling oil-based paints and refused to open his windows even once he was aware of my pregnancy. Unfortunately, he was very callous about the whole matter. At my insistence, my husband and I eventually moved out of our apartment after a few days and stayed in a hotel nearby for the duration of the work. However, I will never know what breathing in that smell during the first trimester may have done. We got the building manager very involved and he was helpful in forcing this person to give the building all his plans in advance, as well as access to his apartment so the windows could be opened. It may have been a little too late. Again, this is just another “contributor” at a vulnerable time in Dylan’s development. This also occurred at around ten to eleven weeks into the pregnancy, a very delicate time when the fetus is still developing all of its organs.

The rest of my pregnancy seemed to be pretty run of the mill until the third trimester when my OB went on a trip, referring me to one of her colleagues while away. I will never forget when the receptionist handed me the other doctor’s business card, she told me to bring a lot of reading material due to the fact that this physician triple booked. I remember thinking, “That doesn’t sound so great.” I wondered, “Why am I going to see them?” Well, not great turned out to be one of the biggest medical mistakes. Not only did I wait for hours as I had been warned, but then she barely gave me any time during the appointment. She seemed much more interested in hearing what I did for a living than checking on the health of my baby. And I wouldn’t discover the worst thing that she did that day until weeks later. She made a horrible error when she neglected to check my urine. This is one of the most important things an OB can do to a pregnant woman, especially in the third trimester. I started to really not feel well in the days after and finally ended up in the emergency room in preterm labor due to an undiagnosed urinary tract infection. I was admitted and given IV antibiotics. All the doctors and nurses prepared me for the fact that I might deliver Dylan at thirty and a half weeks. This was devastating news for someone as careful as me. “How could this even happen to me,” I thought, “when I was just at the doctor’s office?”

I felt fortunate for sustaining the pregnancy and not to giving birth to Dylan during that horrible week-long hospital stay. Instead, after much begging and pleading with my doctor, I went home and spent the next four weeks on bed rest before I finally gave birth to him at thirty-four-and-a-half weeks. During that period, there was tremendous stress between my husband and me, as he had to play the role of my caretaker and continue to fulfill all the day-to-day requirements at his job. To make matters worse, the second round of antibiotics to treat the UTI were even stronger than the first dose, since it was given intravenously. This became another BIG contributor, as it wiped out all my good bacteria so that when Dylan finally came down the birth canal, he did not inherit the diverse balance of good and bad bacteria of my gut flora that is essential to building a healthy immune system. We will refer to this collection of good and bad bacteria as the microbiome. In essence, I feel it was as if Dylan was born by cesarean section. This is another risk factor that we will explore throughout the book with various practitioners who will offer some helpful and important suggestions on how to deal with this situation should it arise for you.

Besides antibiotics, the hospital also gave me certain pharmaceutical medications such as Ambien, since I found it hard to go back to bed when a nurse woke me up each evening in the middle of the night to take my temperature and blood pressure. After a few nights, I decided that I no longer wanted to be taking the sleeping pills that had probably never been tested on pregnant women, and I asked my doctor to stop having them wake me up at 3 a.m. for unnecessary tests. She realized that it did appear ridiculous when I laid it out for her. The point here is that you need to be a detective, as well as your own advocate. If something does not make sense to you, then don’t agree to it.

Despite these early negative influences, Dylan was able to meet many of his milestones generally on time. Some, such as smiling, were a little bit late. He was very alert with an extremely healthy appetite. Unfortunately, my milk never really came in, so we were forced to supplement with formula. I was never crazy about store-bought formula, considering I could barely pronounce any of the ingredients. I remember thinking, “What other choice do I have?” It didn’t seem like there were any other options at the time. The next time around w...

Table of contents

• Cover
• Copyright
• Title Page
• Dedication
• Table of Contents
• Acknowledgments
• Foreword by Kim Mack Rosenberg
• Preface by Dara Berger
• Part 1
• Part 2
• Part 3
• Further Reading/References