Archives for autism

Autism Is My Problem: Report From AutismOne

autism_one_2013

“The doctor just dismissed my concerns,” a mom of three sons told me. “He said, ‘Mrs. G., nothing’s wrong with your son. He’s a boy. He’s just developing slower, he’ll be fine.’”

Mrs. G. knew her son wasn’t okay with every fiber in her being.

She looked at the doctor in surprise. I have two older sons, she told the doctor. I’m not a first-time mom. I have a degree in early childhood development and I’ve been a teacher my whole life. I’m not imagining things. Something’s wrong!

Her doctor walked out of the room without a backwards glance.

It wasn’t until almost a year later that a medical professional diagnosed Mrs. G.’s boy with the problem she already knew he had: autism. Since early intervention can be so helpful and her son is still so sick, she cries when she thinks about how much precious time has been lost.

“I’m broke. We spend every penny we have on interventions.”

“I called the pediatrician and he hung up the phone on me.”

“Our family has been betrayed so many times.”

“I just don’t know what to do.”

These are the voices from the trenches, the moms and dads of children who have broken brains and ailing bodies. I met dozens of them at the AutismOne 2013 Conference, which was held in Chicago, Illinois from May 23rd to May 26th this year.

“We can reverse this epidemic.”

“My child has recovered from autism. He’s no longer on the spectrum.”

“We are thinking moms and we won’t be silenced.”

“We’re in this together and we’re fighting this fight and we are going to win.”

These, too, are the voices from the trenches, the moms and dads of children who have broken brains and ailing bodies. For as many moms who burst into tears at this conference, there were twice as many (often the same ones) who burst into applause, told the best bad jokes, and knew how to have fun. Autism mamas know how to rock the house.

Some children who were diagnosed on the autism spectrum have recovered physically and mentally. When evaluated now they are found to no longer be autistic. What mainstream doctors, who maintain that children with autism cannot get better (and often tell parents to institutionalize their kids) say when they hear about this is that the original diagnosis—even if it was confirmed by four or five specialists—was simply wrong. They say children cannot recover from autism. Instead of seeking out these families, scrutinizing their medical records, and listening to their stories, they dismiss them.

But for every doctor who has kicked these parents out of their practices (for asking too many questions, for calling the office too often, for not vaccinating their already severely immunocompromised children), there are other doctors—many of whom presented their recent clinical findings at the conference—who are trying to fix the damage, listening to parents’ concerns, working tireless both to figure out the cause of what is clearly iatrogenic damage as well as to find solutions.

I don’t have a child with autism.

I don’t know what it’s like to have a child who has lost the feeling in his fingernails, who has constant and chronic diarrhea, who bangs his head against the wall, or who stims (self-stimulates) in other ways.

I don’t know what it’s like to have to clean feces off the walls. I don’t know what it’s like to have a child who cannot be left alone for one second of one day. I don’t know what it’s like to realize that I cannot ever die because I don’t know how anyone else can possibly take care of my kid. I don’t know what it’s like to be a single mom and have to institutionalize my teenager because he has become more than I can handle.

I also don’t know what causes autism.

But I do know that we are in the midst of an autism epidemic, and that America’s children are sicker than they’ve ever been.

In addition to autism, we are seeing rises in asthma, food allergies, Type 1 juvenile diabetes, childhood cancers, Crohn’s Disease, celiac disease and other disorders. The debilitating health problems are hitting my family: my cousin’s son has Crohn’s Disease. It’s hitting my friends: One good friend has a child with Type 1 juvenile diabetes, twenty others have children on the spectrum. It’s hitting my school: four children in my daughter’s third grade class had autism spectrum disorders. It’s hitting my neighborhood: two children at my son’s school have been diagnosed with cancer in the last three months.

I also know that we are vaccinating our children in America in a way that is literally unprecedented in human history, as my colleague Louise Kuo Habakus said during our panel entitled, “Stories, Science, and Social Change.”

I also know that we are vaccinating newborns against a sexually transmitted disease (Hepatitis B) found almost entirely in prostitutes and drug users in the absence of any medical indication without knowing what kind of long-term ill effects we may be creating by introducing a vaccine into a completely immature human immune system.

And that we are exposing unborn fetuses more often to more sound waves than ever before, without making sure that there are adequate safety checks in place on the ultrasound equipment, without ever having studied whether ultrasound exposure is safe, and without knowing what the implications of the fact that prolonged ultrasound exposure causes abnormal brain cell migration in rodents means for human brains.

I also know that there are now tens of thousands of parents who are telling the same story: their child was developing normally, making eye contact, saying words, babbling, engaging in pretend play, looking in the same direction when a parent looked at something. Then they took their baby in for yet another round of shots (these parents were all rule followers. They did exactly what their doctors told them to do on the schedule their doctors told them to follow) at 15 months or 18 months and the next day, or two days later, or five days later, or six days later, or nine days later, their baby was banging his head against the side of the crib, no longer speaking or making eye contact, having diaper blow-outs with yellow sulfurous diarrhea.

All of a sudden their baby was gone.

But when they asked their doctors if there could be a connection between the visit to the pediatrician’s office and their baby’s otherwise inexplicable illness, instead of saying, “I don’t know,” or “Let’s investigate that,” their doctors got angry and defensive and said adamantly and with absolute certainty, “No.”

The numbers of children with autism are staggering: At least one percent of the children in the U.S. between the ages of 3 and 17 have an autism spectrum disorder.

This is a nationwide health epidemic that deserves our highest priority.

Austism is my problem.

Autism is your problem.

We need to figure out what is causing autism and stop it. We need to help the children who have been severely damaged and who cannot function get better. For those who cannot recover, we need a viable plan for how to care for them and ensure they have a safe future.

This is not a burden families can shoulder alone. It’s too much to ask of anyone. Everyone in America is now affected by autism. This is our nation’s collective problem.

We need to start asking the right questions. We need to find the answers. And we need them right now.

It’s time to stop damaging our children’s brains.

Jennifer Margulis, Ph.D., is a senior fellow at the Schuster Institute for Investigative Journalism at Brandeis University. Her writing has been published in the New York Times, the Washington Post, and on the cover of Smithsonian Magazine. A former Fulbright award recipient, she is the author of “The Business of Baby” (Scribner 2013).

Ultrasound Exposure and Autism: Dr. Manuel F. Casanova, M.D., Cautions Against the Overuse of Ultrasounds

Could prenatal ultrasound trigger neurological disorders? This researcher says yes. An interview on JenniferMargulis.net

photo credit: www.flickr.com

I interviewed Dr. Manuel Casanova, M.D., the Gottfried and Gisela Kolb Endowed Chair in Outpatient Psychiatry and a Professor of Anatomical Sciences and Neurobiology at the University of Louisville, in October 2011 and spoke to him several times afterwards.

Since 1996, Dr. Casanova has been involved in autism research. His particular concentration has been on how autistic brains differ from the neurotypical brains and what factors might be triggering the rise in neurological disorders in children in America and so many other countries in the industrialized world. For the past five years Dr. Casanova, a preeminent neuroscientist in his field, editor and peer-reviewer for several highly respected scientific journals, co-author of over 35 peer-reviewed papers, and a meticulous researcher, has been investigating whether or not ultrasound exposure could be one of the factors triggering neurological disorders.

His research is not easy for the non-scientist to understand and I found myself interrupting him several times during our talks to ask him for clarification. Below is most of the transcript from our first long interview.

Manuel Casanova: Initially I had to understand what was wrong with the brain before I could try to attempt to identify risk factors. So a lot of our initial research was based on neuropathology–trying to study the brain and what is abnormally expressed within the same in patients with autism. Once I understood the pathology, I could look at potential interventions as well as the causes.

JM: What are the most important things that you now understand about the pathology of the brains in people with autism?

MC: First of all, I approach everything from the standpoint of a neurologist, as a clinician. When diagnosing a condition, a neurologist first tries to localize the pathology in the brain. Autism is a condition of the cerebral cortex. The language defects, socialization, and other deficits found in autism are best localized within the cerebral cortex (the outer rim of grey matter surrounding the brain). What we found is that the units that provide for information processing within this part of the brain, in the cortex, which are called minicolumns, are abnormal.

JM: I don’t know what minicolumns are.

From the standpoint of systems theory, let’s say you have a system, which in this case I’ll say a car. That car is composed of different modules; it has tires, a transmission, alternator, exhaust, etc. It’s only when you put everything together that you have the emergence of a property that wasn’t there in the individual modules, and that’s locomotion—a nice drive. Okay?

JM: You’re saying there are all these different aspects you can isolate, if you are talking about a car or the brain. But when you take each aspect, whatever it’s doing individually, when you put it together it might do something you don’t expect.

MC: Not predictable, necessarily. If you had a tire by itself and you have never seen a car, you wouldn’t really know what its ultimate purpose was.

Within the brain we have multiple modules that we call minicolumns and depending on how you tie them together you have the emergence of multiple properties, that’s the way we have face recognition, joint attention, that we are able to process visual perception and things of that sort.

JM: Is a minicolumn actually a structure in the brain?

MC: The concept of minicolumns are derived from a very famous neuroscientist named Vernon B Mountcastle, who was an electrophysiologist. His work was to impale the cortex with microelectrodes and then see the recordings of the cells that he had impaled. He noticed that when he impaled the cortex perpendicular to the surface of the cortex and went straight down through the gray matter (like a birthday candle on a cake), every time he impaled a neuron, they all shared the same properties: they all had the same terminal fields for sensory perception, and once you stimulated a cell, all reacted together.  They were thus reacting as a unit. Because they were acting together, as a unit, he decided to give them a name: “mini” because they are microscopic, they span a very small amount of tissue, like 25 microns to 60 microns, and “columnar” because if he impaled them tangentially all of those properties would disappear. You can only have columns of cells that share the same properties vertically through the extent of the gray matter.

So those are the minicolumns, they are a module of information processing, and depending on how you connect them, it is how you get the emergence of higher cognitive functions: facial recognition, joint attention, theory of mind, you name it.

JM: What is joint attention?

MC: Joint attention is when, for example, you call attention to a child that he should be observing something. If I am with a child and all of a sudden I notice something within the room, I gaze in that direction. Because the child sees me, he will gaze his attention to what I am looking at. It is attention shared between more than one individual. It can be done reflexively. I can turn my face, look somewhere, and because I did so the child will imitate me. That quality appears to be abnormal in autistic children.

In terms of autism, schizophrenia, bipolar disorder, practically any psychiatric condition–there wasn’t a lot known in regards to the pathological substratum of these conditions.

If you examine the microscopy of the cortex in patients with autism, for example, most people would believe that it’s completely normal. I realized one thing. That we had the wrong paradigm in looking at the cortex. Thomas S. Kuhn, a historian of science, a philosopher of science, he wrote the book, History of Scientific Revolution, and he said that, “Science advances by introducing a new perspective at looking at an old problem.” It’s not by incremental degrees but actually by introducing an ah ha moment, a eureka moment, a paradigm shift. I thought we needed something similar in terms of neuropathology for

We have a very neuron-o-centric approach to neuropathology. We put the neurons and cells at the center of our diagnostic universe. We call things ‘abnormal’ primarily because cells are lost or diminish in size or stain differently. What happens if the pathology escapes that level of resolution? We need a paradigm shift in neuropathology of psychiatric conditions. One that looks at modules, at circuitry, rather than single cells. We therefore decided to study circuitry within the brain of patients with psychiatric conditions, primarily autism.

What we found is that the minicolumns that provide for information processing within the brain in autistic individuals are abnormal: there are more of them in autistic individuals AND they are constructed abnormally.

A lot of this research could not have been done before because in order to analyze the minicolumn, their numbers and size, you really need the eyes of a computer. The amount of reduction that we noticed in a minicolumn was like 10 – 12 percent. That’s something that the human eye cannot discern.

A minicolumn is a network of interconnected cells, maybe 80 to 100 of them, and then all of their connections and their projections.

JM: Is it possible to know where it starts and where it ends?

MC: Yes, but then you have to divide the cortex into Lamina. And then you would probably say that they extend all the way from Lamina 2 to Lamina 6.

JM: Why would there be more minicolumns instead of less, that seems counterintuitive to me?

MC: That’s in part where ultrasound comes into play. May I give you a small introduction to the ultrasound bit?

JM: Of course.

MC: Let’s talk about sound waves. A sound wave is a wave that conveys a certain amount of energy and when it impinges on your tympanic membrane, it makes it vibrate, and it activates certain mechanisms that allow you to hear.

Ultrasound is a similar type of wave, whose energy deforms cell membranes. There are certain cells within the body called mechano-sensitive that have a proclivity for being deformed, a vulnerability. Their membranes are sensitive to deformation.

Ultrasound, this energy wave, preferentially affects those cells. When it deforms the membrane of the cell, it activates mechanisms that have to do with cell growth and with cell divisions. These cells tend to be the faster dividing cells within the body. Many of these mechano-sensitive cells are stem cells. We know that this actually happens. There have been many studies.

You should be aware, for example, that the FDA has approved the use of ultrasound for bone fractures because it accelerates cell division, it accelerates healing of the bone. So within the brain there is a nidus, a conglomerate, of stem cells in and around cavities which are called the ventricles. These stem cells usually divide and migrate from the ventricular wall (this cavity in the center of the brain) all the way to the surface of the brain where they form the cortex, the gray matter that we were talking about before.

JM: That’s part of the process of human gestation, that brain cells migrate?

MC: It occurs during gestation. When they migrate to the cortex, they follow a scaffolding, and they acquire a vertical orientation within the gray matter and from there they form minicolumns. These cell divisions actually occur within the germinal zone (the germ cells surrounding the ventricles) at a higher rate in autistic individuals, providing for more migration of stem cells to the cortex and more minicolumns.

JM: That’s a hypothesis or that has been shown to be true?

MC: That’s our studies, we have several, one was an international study, that included people from Germany, from the Netherlands, we were all blinded to the results, I provided the analysis. The study was published in Acta Neuropathologica. It has all been reproduced and reported within the literature. Within the brain of autistic individuals there appears to be something that promotes the division of these stem cells that surround the ventricles to divide supernumerary-wise, at a time when they shouldn’t be dividing. That division provides for daughter cells that migrate to the cortex and acquire a vertical arrangement that we call minicolumns. There are more minicolumns in the brains of autistic children than in normal but it all stems from the fact that something impinged on the germinal cells and caused them to divide.

JM: Caused them to divide more than they should have?

MC: Minicolumns are compartmentalized. You have a central or core compartment that is provided by this radial cell migration to the cortex, and these are excitatory cells. If they divide at a proper time, these cells migrate to the cortex where they mature in synchrony with another type of cell that migrates tangentially, these are inhibitory cells. So normally you have a radial migration of cells to the cortex which is primarily excitatory and that’s coupled in a very fine ballet-like fashion with inhibitory cells that are moving tangentially through the cortex. It has been said that these inhibitory cells provide a shower curtain of inhibition to the minicolumn. You know that a shower curtain keeps water inside of the bathtub. If you have a defect in the shower curtain of inhibition, water will spill out of the bathtub. If the radial migration is not coupled with the tangential migration of inhibitory cells then the minicolumns would have a faulty “shower curtain” of inhibition and information would no longer be kept within the core of the minicolumn, it would be able to suffuse to adjacent minicolumns and have an overall amplification affect. And actually the cortex of autism individuals is hyper-excitable and they suffer from multi-focal seizures. One third of autistic individuals have suffered from at least two seizures by the time they reach puberty. What we are proposing is that something impinges on the germinal cells, causes them to divide at a time when they should not divide. Cells migrate to the cortex but because it is at an anomalous time they are not synchronized with inhibitory cells, so there is an excitatory-inhibitory imbalance.

JM: When you say something “impinges” on the germinal cells, what you’re saying is something disrupts them, something changes them, moves them?

MC: It makes them divide when they shouldn’t.

JM: OK. In the normal migratory pathway of brain development, when we have cells that are migrating, they are also coupled with inhibitory cells. I’m not sure I understand this. Those cells are coming along?

MC: The cells meet them there in the cortex during the migration of both. They develop together.

JM: When we get there there’s this welcoming committee of cells that are going to keep us in place and keep us from spilling out to a part of the brain where we don’t want to be.

MC: Exactly. But if you force those cells to migrate when they aren’t supposed to migrate, there’s no welcoming committee.

MC: We have shown this to be true. We have gone as far as to validate the significance of the same. Facts are only as valuable as you can apply to the patients. We have used the findings to predict many things about autism that were unknown before and to explain clinical symptoms of the condition that are well known. This hypothesis has been validated scientifically in terms of its explanatory and predictive powers.

JM: OK. So now let’s go back to ultrasounds.

MC: The other thing that you should know is that there are many things that may actually cause the germinal cells to divide abnormally.

JM: You mentioned several things in one of the papers I read. You said maternal infection, seizure drugs…

MC: The main thing is that if it was only the effect of genetics, since all the germ cells have the same genetic component, you would probably see abnormal migration everywhere throughout the cortex. It’s only when you have an exogenous factor, like X-rays, that you see abnormal development and migration in the cortex in different areas of the brain in different organisms. In terms of autism, you can actually see there is abnormal migration of cells to the cortex. This group of cells cluster and come to rest where they shouldn’t even before reaching the gray matter. They actually stop their migration within the white matter. So you have a small island of gray within the white matter (“heterotopias” in medical lingo). In autism we find those islands of gray within the frontal lobe, but in the next patient it will be within the occipital lobe. The next patient may exhibit them within the cerebellum. It’s almost like every single patient is different. And that goes along with environmental migration and abnormalities. That’s usually seen when something from the environment is the precipitant for those germinal cells to divide, and because it impinges differently on the germinal cells of different patients, you are going to have a different spectrum in terms of pathology. But if these were only the effects of the genetics, since all of the germ cells have the same genetic component, you would see the same abnormal migration everywhere throughout the cortex. It’s only when you have an exogenous factor, like X-rays, you see.  In ultrasound, for example, the way I approach the fetus with my probe may actually vary from exam to exam. So the amount of energy that is impinging at any time in the germinal cell layer of the brain will vary.

Those were my initial thoughts about why ultrasound could be of significance in terms of autism. Then the more you examine ultrasound and its epidemiology, the more proof you can draw of the same as a risk factor for autism. Populations within the United States that don’t use as much ultrasound are at a lower risk, like the Amish. The Somalis, where autism is practically unknown in their native countries, when they migrate to developed countries, they acquire a higher risk. This is not a property of being in this country.  Somalis also acquired a higher risk for autism if they move to other developed nations. Obviously, in these new surroundings, they are receiving more ultrasounds.

Many people believe that because having a child with autism confers a greater risk for having a sibling similarly diagnosed, that this is a genetic condition. However, this could also be explained by ultrasound, as the mothers tend to go to the same OB-GYN practitioners. Ultrasound may or may not be a risk factor. That is something that research will tell us in the future. And I am really not advocating to stop using ultrasound, it is a valuable tool, but rather for practitioners to adhere to existing safety regulations

Studies say that one third of all practitioners do not adhere to safety regulations. One safety regulation is to never perform an ultrasound study during the first trimester in a non-risk pregnancy. No more than two in a low-risk pregnancy. Right now one third of practitioners are using ultrasound during the first trimester and they don’t see anything wrong with that. Alarmingly, about 40 percent of ultrasound equipment presently in use is defective. One study from around 2009 took 700 machines from about seven different companies and they found defective transducers, the probe that you use to apply the ultrasound was defective in 20 to 70 percent of the equipment depending on manufacturer (the median was 40 percent.) Furthermore, the end users do not know what they are doing. When asked to define the thermal index, the mechanical index, they did NOT know where to find it on the machine in order to provide an index of danger to the patient. Right now because it has been deregulated since 1993, people have been using ultrasound with a 7-fold to 8-fold increased energy without having done the proper safety studies. Now we have a whole industry of 4-D ultrasounds, of fetal colorized reconstructions of babies using ultrasounds. Now we have patients that buy their own equipment through Amazon and eBay, they are providing reviews for other patients, it’s not the physicians. They are buying it themselves. They really do not know what they are buying.

Ultrasound is actually also used in fetal heart rate monitoring. Those are being bought in a non-restricted fashion by the patients themselves. We should voice some caution about what is happening within our society. There have been many committees and organizations that have called for safety regulations, and they are not being followed as of present.

We need more studies. Ultrasounds are being done without regards to the safety of the patients. I have been to many ultrasounds. The techs, who are well mannered and well-educated, at the end of the ultrasound session they ask the patients, “Wouldn’t you like to see more?” “Would you like me to take more pictures?” They have no idea that they should be getting in and out within a certain defined period of time.

Photo by Jennifer Margulis.

Jennifer Margulis, award-winning author of Your Baby, Your Way
Jennifer Margulis, Ph.D., is a Fulbright grantee, an award-winning journalist, and a sought-after public speaker. She has worked on a child survival campaign in Niger, West Africa, and championed the rights of rescued child slaves in Pakistan. Read more about the possible dangers of prenatal ultrasound exposure in her book, Your Baby, Your Way: Taking Charge of Your Pregnancy, Childbirth, and Parenting Decisions for a Happier, Healthier Family (Scribner, 2015).

Have You Ever Invited an Autistic Child to a Birthday Party or to go Trick-or-Treating?

Michelle O’Neil and her daughter Riley when Riley was eight years old

In a recent Facebook exchange about three, four, and five year olds still in diapers, one of my friends reminded commenters that some children who are having difficulties potty training may have other challenges. That friend is Michelle O’Neil, a former nurse and mother of two from Cleveland, Ohio whose daughter is autistic. Michelle has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has also written for Literary Mama (which is where we first met on-line. I was the Creative Nonfiction Editor of Literary Mama when one of Michelle’s essays was published) and she blogs about autism, family and the day-to-day at Full-Soul-Ahead!. Today, according to the CDC, 1 in every 88 children has autism, yet parents who don’t have children on the spectrum often have no idea what it’s like to live with an autistic child.

JM: How old is your daughter and when did you realize she was autistic?

MO’N: My daughter is 12 and we knew something was up by the time she was about 18 months old. Prior to that we were just resigned to the fact that she was a “fussy baby.” She was diagnosed initially with Sensory Processing Disorder at three years old and then at five got the official Asperger’s diagnosis.

JM: Does autism run in your family? Do you have any explanation for what happened to her?

MO’N: My husband has an uncle who is undiagnosed but clearly somewhere on the spectrum. We believe that she had a genetic susceptibility to autism, and that environmental factors pulled the trigger. Namely over-vaccination, of both mom and child.

JM: Can you describe a typical day with your children?

MO’N: A typical day now is very different than a typical day was a few years ago. She used to be completely disregulated. My daughter has made huge improvements over the years with bio-medical interventions, therapies (many alternative and not FDA approved), and medication. She has a great deal of anxiety and the smallest most unpredictable things used to set her off. When she reached this point of no return, there would be horrendous screaming and meltdowns. There was no reasoning with her. No talking her out of it. No punishing her into better behavior. Our family walked on eggshells and it was very difficult for a long time. This was not behavior she could control. This was not a child being a brat though that is what it looked like to people unfamiliar with autism. This was an overloaded neurological system, a brain in rigid vapor lock. Imagine your very worst hangover–I believe this is how she felt, every day of her life. She was polluted with environmental toxins. She had no ability to cope.

We have worked very hard to get her body healthy. We have chelated for heavy metals. We avoid chemicals and preservatives in our food. We eat organic almost exclusively. We limit scented products in our home. She was a great responder to methylated B-12 shots which helped her body eliminate toxins. She has participated in many therapies including occupational therapy, Berard Auditory Training which improved her balance and helped reduce her extreme sensitivity to sound. She has taken therapeutic dance, martial arts, and horseback lessons. She received music therapy for years.

In addition to the MB-12 shots, we’ve done homeopathics, Chinese medicine, chiropractic, cranial sacral and a slew of other things to help her body calm down. She currently takes an SSRI medication which has helped her a lot. We pulled her from school three years ago when we found out she was spending a good portion of her time there isolated and crying in a sensory room.

All that being said, she is doing fantastic now, and our days look much like a typical family’s day. She has only had one or two meltdowns in the last two years. They used to be multiple times a day. We are not involved in as many activities as most American families with children because she needs her down time, but I think that is good for all of us. Her autism gives us an excuse to take life a little slower and we like it that way.

JM: You’ve told me that sometimes it’s challenging when you are out in public and people judge your daughter’s behavior without knowing about her disability. I’d love to hear more about that.

MO’N: After a certain age, say three, people are less forgiving of a child having a meltdown in public. Particularly a child who looks typical. Autism is hard because it is often an invisible disability. My daughter could always talk. She could look at you. When she wasn’t upset, she was very charming and delightful with her big vocabulary. So to see a child like her suddenly lose it because a bee flew too close to her ear or because the children at a party sang “Happy Birthday” too loud, or because the sun was too bright, or the room smelled funny or a baby cried, it looked strange to them. When she was little we got a lot of eye rolls. A lot of glances exchanged between other parents. It was hard, because we were knocking ourselves out to parent this child, and trying to be a good parent to her baby brother, and it was exhausting… to be judged on top of it, just sunk my heart sometimes.

JM: What do you wish mom and dads who do not have a child on the spectrum knew about autism?

MO’N: I wish they knew how much it meant for a child with autism to be included once in a while. It seems like many typical parents fear if they give an inch, we’ll take a mile. Like, they are afraid we’ll need more than they are up for, so they don’t “get involved.” My daughter has typical friends who frankly live in a different universe (just up the street). But they include her a couple of times a year, inviting her to birthday parties or to go trick-or-treating. It means the world to my child. She doesn’t sit around fretting that she barely sees them. It doesn’t even occur to her. Her idea of friendship is different than most girls her age. She wouldn’t want weekly play dates. It’s not her thing and it would be too much. She’s happy. She considers these girls her friends, which they are. They are awesome kids. We’re not going to glob onto you and ask for too much. Don’t be afraid of knowing our kids.They are part of your community and they have gifts to bring too. Most of the time when children are educated about my daughter’s challenges, they show up big with compassion and support and love. Knowing my daughter is an opportunity for your kids to know their best selves.

JM: Do you feel like you get the support you need in your community?

MO’N: People don’t always know how to support you but it seems if you give them opportunities they show up. When my daughter was younger and had no friends, we started a Circle of Friends group for her, which met monthly at our house. We did an activity and some social skills exercises and had a snack. Every kid we invited showed and even some extras came. Our community also raised thousands of dollars in a very short time to pay for our daughter’s service dog a few years ago when we put out a call for help. Asking for help is the hard part. And it is tricky to ask for help when you have a child you feel you can’t leave because she will inevitably meltdown and perhaps be misunderstood. What parents need is respite but how do you ask for a baby-sitting trade under these circumstances? There are few people I trust to leave my child with.

We have also received great support from the homeschool community. Homeschoolers seem to welcome and value difference more than mainstream society, and many homeschoolers are frankly in the same boat whether their kids are officially diagnosed or not.

JM: How can teachers, politicians, and others better support parents with autistic children?

MO’N: Teachers really are the ones in the trenches. Ask any seasoned teacher if it’s just better diagnosing or if way more children have huge issues and they will tell you our children are suffering in greater numbers than ever before. There are many amazing teachers working with kids with autism and no one deserves more respect. I would tell teachers in general, if they don’t have love in their hearts for kids with autism, please don’t attempt to teach them. Love is the key ingredient. Tough to mandate but without it teaching a kid with autism is a figurative bloodbath.

I would tell politicians to quit taking advice and money from the pharmaceutical industry. Stop the over-vaccinating of our children. Give autism families money for respite.

Riley, age 3, receiving Berard Auditory Training

JM: Are you worried about your daughter’s future? What will happen when you and your husband are too old to care for her?

MO’N: I honestly can’t predict much about my daughter’s future. I could never have imagined just a few years ago how far she would have come today. Her progress blows me away. I have no way of knowing what she will be capable of. In many ways it appears she will be able to live independently. We keep working toward that goal, but at 12 it is too soon to know. I know parents of kids with autism who share a totally against-nature secret thought that it might be better if their child dies before they do. The thought of what might happen to them when they are gone is so frightening.

In other cases, autism sibs will be called on to manage care. The siblings are truly the unsung heroes of the autism epidemic. What these kids deal with and the amazing big hearts just full of compassion and depth that I see in so many of them. It gives me hope for the world.

JM: What are some books you recommend about autism?

MO’N: Dr. Ross Green’s The Explosive Child. Best book ever. The premise is: a child does well when they can, and when they can’t we need to give them support. No child wakes up in the morning and decides, today I will act like a brat. Another gem in Green’s book is “Don’t match a child’s inflexibility with your own.” It’s a wonderful book, not just for autism.

Another book is Dr. Kenneth Bock’s Healing the New Childhood Epidemics, which explains that autism (and ADHD, asthma, and allergies) is not a fixed state, but a physiological condition which can be treated and in some cases cured.

Son Rise by Barry Neal Kaufman is a good start, for parents of newly diagnosed children. It is about meeting your child exactly where they are, loving and accepting them, while working with them and hoping for progress.

JM: Do you have advice for parents who have just gotten an autism diagnosis from a medical professional? Besides panic, what is their best course of action?

MO’N: Breathe. Keep an open mind. Know that there is a lot you can do to help your child. Go with your own gut, and make decisions from a place of power and not a place of fear. Weigh any and all advice carefully but understand you are the ultimate authority and advocate for your child. This is a sacred journey you are on and it’s a marathon. Pace yourself.

Riley on July 4th