When Miles and I were first dating, he’d lovingly joke that I was from another planet.

After Lennon came, I realized: We — my son and I — are both from this other planet.

And it took another decade before I recognized what exactly was this alien landscape from which Lennon had come.

And I discovered the name for it: Planet Asperger’s. (Brenda Boyd called it that in Parenting a Child With Asperger Syndrome: 200 Tips and Strategies.)

And you know what? Planet Asperger’s — the way Boyd describes it — it sounds like such a nice place. It’s a place where all the people are honest and good. Kindhearted. The people are probably more forgiving there on Planet Asperger’s.

And in that spirit of honesty, I’ll share that I might be just a transitory guide from Planet Asperger’s — not a native to either planet, I’m one of the ones called to guide the Aspies and their parents through their journeys here on this alien planet called Earth.

We don’t live on Planet Asperger’s, Lennon and me. We live here on Earth. And as much as Lennon’s obsessions (currently: Harry Potter and Mario) are sometimes like an escape from Earth, he can’t go home again. At least not yet.

Lennon daydreams of living on another planet — of building a dream house, on another habitable planet he’s one day going to move to.

And unlike an ordinary kid who might dream an extraordinary dream like this, Lennon actually knows the name of the planet he’s going to move to.

Oh, yes, it’s a real planet that exists. He knows it’s habitable. He knows its — oh, God, my poor shell-shocked brain can’t retain info anymore — but he knows it’s going to be a planet that doesn’t rotate or whatever, so one side is always facing the sun, and the other side is always in darkness. Lennon says his house will be near the equator, so it’s always in sunset.

Because he loves looking at the sunset.

He tells me I’m invited to live with him on that planet, that Miles and I can have “our own wing” in his house.

And this makes me inexplicably sad. Is Earth such a bad place for him? Won’t he miss all the people here? And the indescribable beauty of this planet, with all its chaos and duality?

Lennon turned ten last month. He’s the cutest, most amazing, most brilliant, most lovable, most creative, most loving kid I could ever have had the pleasure of being Mama to.

At ten, he still calls me Mama and still gives me giant hugs.

He can tell when I don’t feel good — a perception he bases, apparently, on the auditory volume of my sigh — and he runs to my room, turning back my covers so I can lay down and take a nap.

In a lot of ways, I guess, he parents me. That could be an expression of Asperger’s, or it could be an only-child thing.

I love him so much my heart bursts, and it hurts so much when he hurts.

He hates school and dreams of the day when he can “go nocturnal,” stay up all night, doing whatever he wants. He laments being diurnal (a word he taught me when he was in Kindergarten. It means the opposite of nocturnal).

Driving him to school every day (because he’s scared of the schoolbus), I wish I could somehow make it different for him. Better. Easier.

I love him so much. I wouldn’t change a single thing about him, about being his mother.

But that doesn’t mean there aren’t days when being his mother is really f’ing hard. And I wish I could somehow make it different.

Better? Nah, it’s brilliant. I could never make it better.

But easier? Yeah, I’ll take easier.

Let’s make it easier.

My teenager called me crying from school the other day.  Aside from the fact she hadn’t slept well the night before, she was heartbroken, and for good reason.  Once again her father (my ex) turned his back, and gave her the cold shoulder.  I watch my daughter suffer and cry, and my heart goes out, but I also get angry.  She is genuinely confused and hurt, and there’s no amount of words that will fix it.  In my head I’m getting in my car, driving 2 hours and kicking some ass.  I’m looking for blood.  Sigh.  I guess I’ll behave.

But…….

Last night we went to my daughter’s dance performance – she goes to a local School of the Arts – she did a great job and I was super proud of her.  Unfortunately, when it was over, the thing  she noticed the most was that her father, and his family chose not to attend.  All the smiling, hugs and “attagirls” in the world couldn’t put a smile on her face.  She managed to make it home to the safety of her room, where she collapsed in a puddle on her bed.  Heartbroken.  Again. She’d been begging, calling, texting for weeks asking them (he, and his family) to please come.  All the way up to the last minute, she had her hopes up, called and left messages.  She got no answers.  No messages to say sorry, or “I wish I could be there”.   Still behaving…but it’s really, really hard.

My daughter was diagnosed with Aspergers Syndrome a little over a year ago. I suspected it for a long time, and she and I have been learning about it together.  That’s great for us…now if only I could get other people to understand and work with her  In the end, the ultimate result for her is genuine confusion, and lack of understanding about how people can be such jerks. (That was the kind and gentle version of the word I’m actually thinking).

Aspergers teens generally have a lot of trouble understanding how they should act around other people in order to get along socially. They have a lot of trouble understanding why other people act the way they do. As a result, they may appear to be detached and uncaring – but this is only the outward appearance.  Inside they care and feel..often too much. For my daughter any kind of strong feelings – positive or negative – overwhelm her.  She has to find a quiet space to sort it all out. It’s not personal,  it’s how she copes with the sensory overload.

At a very young age my daughter showed signs of “something” that wasn’t quite right.  She would cry as a baby, and immediately stop when she was put in her crib.  You could almost see the sigh of relief that was going on in her head.  She would also cry genuine tears of fear when a stranger came around,  and  she would get nervous when we drove too far away from home.  She has always been a creature of habit and routine, and a loner.  She wanted things to be the same all the time…still does.  She would play alone with her little Winnie The Pooh characters for hours, creating an intricate fantasy world in her head.  As she got older, the anxiety started to kick in.  She didn’t like to join in and it scared her.  She was chosen to be a hall monitor in elementary school and it scared her to death.  “What if nobody tells me what to do?”  What if they forget I’m there and don’t tell me when to go back to class?”  She cried, she worried (angst, angst, angst) she didn’t want to do it.  We talked through it, and worked it out…and that’s how we handle things to this day.  We talk it out, try to make sense of it, and go from there.  That’s our routine

For everyone who doesn’t understand the Aspie kid – Be patient. Remember that kids and adolescents with Aspergers are relatively immature, socially and emotionally, compared to non-Aspergers kids of the same chronological age. Imagine sending a 10 year old off to high school (even if she has a chronological age of 14), or putting a 14 year old boy behind the wheel of a car (even if he has a chronological age of 18)—or sending that 14 year old off to college or the army. We need to adjust our expectations for adolescents with Aspergers —and make sure they still have appropriate supports.

Days like today are grim reminders that there are real monsters out in the world. I spent the majority of the afternoon, as I’m sure many other people were, watching the coverage of the bombings at the Boston Marathon. What kind of monster would do that to so many people? To kill people, including an 8-year old child? I hope they find the person or person(s) responsible and execute them. I’m sorry that’s harsh, but anyone with such disregard for life in that way - the type of person who is willing to take the life of an innocent child, deserves nothing less than that same disregard they have for others.

It makes me sick. Every single bit of it. If it’s not that, it’s some lunatic with Asperger’s Syndrome killing a bunch of innocent children and teachers at a school. The world is rapidly going to Hell. The world as I see it in this time and age seems to be spiraling out of control. None of us are really safe out there anymore – there’s psychopaths and sociopaths out there who want to hurt everyone else. It makes me very sad to see/hear all of it as it unfolds. I can only imagine how horrible the victims and the family of the victims feel. My heart goes out to them all. May all those who died in the horrible tragedy rest in peace.

So sad. What’s even more sad is seeing this…

How in the HELL can you thank God for ending the life of an 8-year old child! My God, these people are the real MONSTERS out there – almost as bad as those who commit these terrible acts of pain and suffering and death on others. UGH. I’m sick to my stomach after reading all of this and taking it all in. I’m going to call it a night before I get more worked up over how horrible all of this is.

My family is moving. I will not say where to protect our privacy. We are all very excited, in just three weeks we will be in our new home. Jimmy has been acting out lately. I am pretty sure this is due to the unexpected. I have been preparing him. We talk about it on a daily basis. It is still hard for him. He needs to have a strict routine so he knows what happens next. If something unexpected happens he ends up in a meltdown. His melt downs are not fun to say the least and can become very bad very quick.

He will not be with me during this move. I just couldn’t do it with him here. He is going to be with my mother for about a month and a half or so. I am hoping that my mom will be a guest author and put up some posts during the time that Jimmy is with her. They are going to be doing some very cool things. However I will leave that up to her as to what she wants to share, pictures included.

Jimmy will continue with his mental health help. Just transferring from the office here to the office where we will be living. Everything will be in place when he returns to our new home. The professionals will be in place and already working with Chrissy and Lee. I will have already interviewed them to make sure they are a good fit.

The house will be unpacked and his room will be set up. Oh, I must mention we are going from a three bed room to a four bedroom. This makes everyone happy. Especially Jimmy and Lee as they have never shared a room before. Cleaning rooms for them will be different. They always say the other made the whole mess. Once we move that will not happen.

I plan on making some changes in routine as summer will be here. All kids are getting passed on to the next grade and will not need to enroll in school where we will be moving to. So summer starts early for them.

I guess that is all for now. I need to get packing. It is slow going since I am sick, and having the kids help is almost impossible. Maybe if I bribe them……. lol

Jennifer Margulis and her daughter Leone Francesca

Jennifer Margulis, Ph.D., is a senior fellow at the Schuster Institute for Investigative Journalism. A former Fulbright Fellow and an award-winning journalist, she has worked on a child survival campaign in Niger, West Africa, and championed the rights of rescued child slaves in Pakistan. Research for her fifth book, The Business of Baby: What Doctors Don’t Tell You, What Corporations Try to Sell You, and How to Put Your Pregnancy, Childbirth, and Baby Before Their Bottom Line, was partially made possible by the Fund for Investigative Journalism.

The following is a telephone interview conducted by Jennifer Margulis. I have taken the liberty of posting it in my blog while retaining her wording and introduction.A previous blog goes into more details and provides references http://corticalchauvinism.wordpress.com/2013/01/30/the-need-for-further-studies-on-the-safety-of-prenatal-ultrasound/

Jennifer Margulis (JM): 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 200 peer-reviewed papers, close to 70 book chapters, 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 (MC): 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.

MC: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 is 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 aha moment, a eureka moment, a paradigm shift. I thought we needed something similar in terms of neuropathology for autism.

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 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. Some viral infections, like cytomegalovirus and rubella, target these cells. Genetic conditions like tuberous sclerosis or Ehler Danlos interfere with their divisions. Extreme prematurity may cause hemorrhages and destruction of many germinal cells surrounding the ventricles. All of these conditions, not surprisingly, express in a significant proportion of cases an autism phenotype.

JM: You mentioned several things in one of the papers I read. You said maternal infection, seizures, 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 as they are considered a higher risk pregnancy. Other risk factors for autism like older parental age, multiparity (like having twins or triplets) and obese pregnant women require more ultrasound studies.

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 the dangers in what they are buying.

Ultrasound is actually also used in fetal heart rate monitoring. Those are also 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 will 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.

[4/16/13 Addendum: I have often been asked whether the increased incidence of autism among siblings points to a genetic condition. I say that other factors, besides genetics may be help explain the fact, e.g., maybe women tend to go to the same gynecologist for all of their pregnancies. As I said in my interview, the use of ultrasound may also help explain some of the other risk factors for autism, e.g. old maternal age, obese pregnant woman, multiparity (twins, triplets). All of these conditions usually require additional ultrasounds or exams with higher energy levels. Retrospetive or epidemiological studies will add little assurance to the safety of ultrasound as its practice varies tremendously among end users. This is one place where animal studies could be of use but the NIH has shown little interest in funding this type of study. A petition by David Blake to study the health risks associated with ultrasound and to promote more research on the subject can be found at: https://www.change.org/petitions/health-risks-of-prenatal-ultrasound-the-urgent-need-for-more-research-and-regulation ]

I’m writing this blog because I want to get my thoughts out there and perhaps the community can help me with stuff that either I find confusing, frustrating, or just utterly depressing. I am more than well aware that there will be plenty of people out there who will attack me because of a psychological phenomenon known as deindividuation purely because I refuse to show off anything other than my legs and shoes. I am aware that I am a fat and ugly excuse for a man. I really don’t need to be told that I’m the same “dressed up”, thank you.

I don’t know what, where, why, or how I’m going to explain my situation to you. I might have that as a separate “series” from this blog to explain who and what I am. However, I will tell you a bit about myself with the following disclaimer.

My name, age, and location will never be revealed and the name/age/location that I give may or may not be true. However, I will not be wildly out when I say my age. My age will be +/- 10 years. ALL of the other information I give will be true – to my knowledge. All the stories will be real but I will change the names of people involved, again for privacy reasons. I like my privacy and the idea that I won’t be scared to leave my house because of the repercussions of this blog.

My name is Oliver and I am 22 from the UK. I am male, I have Aspergers, and I’ve been a TV since I was 15/16 but that goes back to when I was 5/6. When I stole my mothers knee high boots.

I love these kinds of shoes.

This is only a quick “hi” post. I will post as often as I can. However, I do have a business and numerous other things to be paying attention to and I may forget.

Thanks for reading

Oli.

Creative Commons Photo by Casey Hugelfink

The way others look at people with a mental illness, the images they have of what they look like and the questioning of if it truly occurs or if the parents are the problem, those are what helps create the stigma. It is our job to make the stigma end so no longer anyone feels the need to suffer in silence.

So, back to what offends me. There is this commercial infuriates me. A puppet, presumably, a child, is in an insane asylum and is having a meltdown over his desire for wheat thins. This commercial validates the stigma of the mentally ill, what they go through, and what it is like when the seek treatment. Seeking treatment is the hardest thing a person can go through, and it is most definitely not a walk in the park. We should be praising the courage it takes to move on, not poking fun at what it might be like. To me, it feels like bullying.

This commercial, that is meant to make people laugh, only breeds intolerance and ignorance in a world where there is already plenty of that. Mental illness is not a joke. It’s not funny and it is not OK to make fun of. It is a serious thing and it should be treated as such. Lets not keep the stigma going with foolish and irresponsible stuff such as this, instead let us ban together and make sense of things while showing our unwavering support.

ironically, I found this link on a website that thinks its funny, go figure.

http://www.funnycommercialsworld.com/wheat-thins-commercial-puppet-17188.html

Anyways, as I siphoned my way through the mess that is my morning’s news feed  I came across a little gem that had been posted on the ‘Views and Opinion’ page. Now, I am going to spare you the details – that post and it’s comments were not the best when it comes to grammar and what not. It is Facebook after all.

The view put forward was in regards to a book about Cats. The title is something along the lines of ‘All cats have Aspergers’. Now, the book itself is a nifty little way to explain the quirks that come with dealing with Aspergers. You know the quirks – the lack of communication, the inability to focus on one task, repetitive behaviors and the rituals. All in all, I think the book seems quite cute, and it is a great way to shine a little light of Aspergers.

The reason this post grabbed my attention was the following statement. ‘Every body has a symptom or two of Aspergers’

I cringed. I ground my teeth. I sighed a little. I told myself to stay out of it. Annnd, then I typed.  Don’t get me wrong – I have the feeling that the statement is the result of confusion and ignorance. But, it frustrates me to no end when a legitimate illness that affects so many people, can be so.. easily dismissed.  I am not sure if that is the word I am looking for, but it sure as hell is going to be the word I use.

A symptom or two. Really? 

Don’t feel like having that conversation with the checkout chick at the supermarkets? I’m sorry, but there is no way that compares to person who can not bear to glance at the checkout chick. Balloons popping scare you? Well, to some people with Aspergers, it actually HURTS when it pops. Feeling a little emotional? Try getting so frustrated by change, that you throw a full blown tantrum. Don’t worry though. Your inability to understand body language would shield you from the obvious looks and judgement that is being directed at you.

People need to stop making such ignorant statements. There is an incredibly large difference between quirks, and symptoms of a mental illness.

This post may make absoulutly no sense. Because it doesn’t make sense to me. I apologize. If it does, enjoy.

On another note, I hope my friend continues to stir the pot with her opinions page. There are certainly some gems in there. You just need to sift through the .. not so shiny opinions

I would just like to mention the respect I have for all those people out there that do deal with Autism and Aspergers on a regular basis. You guys are incredible. When I grow up, I want to be just like you. Keep up the good work.

Forrige uke sluttet med en del stress for meg, noe jeg enda henter prøver å hente meg inn fra. Jeg er selvfølgelig ikke fornøyd med den enorme responsen jeg fikk på hendelsen, men når jeg tenker bakover så var dette fire dager hvor jeg var veldig sosial (flere timer i strekk, noe som er stressende for meg). Tidligere har jeg klart èn slik dag og brukt en eller to uker med ro på å komme helt tilbake til meg selv. At jeg holdt ut fire dager, at jeg i det hele tatt møtte opp på noe som var frivillig, er for meg en liten seier. Så får det heller være at jeg er litt sliten – det er lærdom i det og. Fire dager var nok i overkant optimistisk av meg.

Jeg har altså vært slapp den siste uka, og når jeg tenkte over matplanen min oppdaget jeg at jeg også har spist tilnærmet nullkarbo. Det er ikke bra for meg i det lange løp, særlig ikke med tanke på at jeg trenger vitaminene og mineralene fra grønnsaker, og kanskje mer enn anbefalt. Jeg vet magnesiumnivået mitt har vært lavt, jeg har hatt små muskel “kramper” og blitt lett sliten. Stress får kroppen til å skille ut magnesium, så når jeg ikke tilførte kroppen nok til å gjenopprette disse lagrene jeg tømte i helga var det ikke rart den sa stopp. Jeg er dårlig til å godta slike ting, så jeg har ikke latt kroppen hvile nok heller, det må jeg jobbe med.

Det har blitt en del søtpoteter, gulrot og epler de siste to dagene, og jeg føler meg bedre. Såpass at jeg fikk en knalløkt på treningssenteret i dag. Som passet meg bra, da trening gjør at aminosyren tryptofan (forgjengeren til serotonin) lettere blir transportert til hjernen. Herlig humørboost

En uke igjen… da blir det omelett! og baking. Jeg har funnet en oppskrift på kake laget med søtpoteter, det klør i fingrene etter å lage noe annet enn middagsmat.

To describe these things using an analogy
if the aspd is a person looking at a mirror
the autistic is blind
and the schizophrenic deaf

What evidence is  there for my assertions:
Well the strongest evidence comes from mirror neurons and studies of empathy.
Mirror neurons are cells in the brain that fire when you see yourself or someone else doing something, that is the persons brain reacts as if they where doing the thing when they see someone else do it. Truly a sense of self and other selfs…. even though it may just be an ‘artifact’, it still provides demonstrable evidence of activity in the brain in association with real world stimulus.

In people with aspd traits, specifically cold heartedness, motor mirror neuron activity is increased, they do indeed have a stronger sense of self, self loving, selfishness. They however have a different kind of affective (feeling) empathy which in some ways is inverted, that is they get pleasure from seeing other people in pain (this has been measured in children with conduct disorder, a prerequisite for aspd), they also have difficulty or are unable to learn the empathetic consequences of their actions, for instance when given a mild pain stimulus normal people will learn to predict this and measurable changes occurs prior to the stimulus, in people with aspd this is not the case, they do not learn that response. There is also some observational evidence that they do not like others doing better than them, in a way pain from other peoples pleasure.

So how do mirror neurons react in people with schizophrenia,
Well it has been shown that during a psychotic episode mirror neurons over fire, either giving a greatly increased sense of self or more probably a ‘false’ sense of self, like the self is all important thing to them… ego centric… I couldn’t find any litrature on empathy at this point, apart from it being difficult to empathise with someone with schizophrenics, what i have been told and noticed is something related, that is difficulty with generalizations and parts of things and a greater ‘attachment’ to things. so for instance given a list orange apple banana a schizophrenic may have difficulty telling you they are all fruit, simirlally they may have difficulty seeing that a tomatoes is a fruit because to them it comes under the all encompassing generalization of vegatibles and that is what they where first told, and having difficulty in seeing that a generalization is made up of parts and could be a subset and is not all encompassing.
Schizophrenics can also have traits of aspd and become or appear to be more narcissistic, this also fits in with this sense of self.

And what about in autism,
Well in autism mirror neurons fire significantly less, they are indeed less ‘self’ centered more object orientated if you like… This lack of interest in other selfs can easily be mistaken for selfishness or egocentrism, but an autistic would be more lightly to focus on the parts and details of an object or objects showing little affiliation with people.
In terms of empathy, though autistics have been shown to have less cognative empathy (people with aspd have no difficulty with this kind of empathy or it may even be enhanced), this is speculated to be down to another condition which is commonly co-morbid that is a difficulty in recognising ones own emotions.
People on the spectrum do however have affective, feeling, empathy and in some studies actually more of this than typical people, this is the kind of empathy people with aspd have difficulty with.Genetics for schizophrenia and autism (specifically copy change variants) are oppoite, that is if a normal person has two copies of a gene and autistic may have one copy and a schizophrenic three copies, and visa versa.

I have some more work to do on language and how this sense of self is presented in the way people use and understand language, there is one commonly known measure of narcissism called first person pronoun density. Autistics are also known to have confusion with pronouns, for instance using you instead of I… again quite the opposite of selfishness in that way. This is my own personal research work which I’m keeping a little under wraps until I have produced an good automated measurable way of decoding language elements and expression of self in language.

So in many ways, autism and schizophrenia and aspd are nicely juxtaposed on the sense of self and empathy like multi-dimensional opposites.

There is also a strong link with bi-polar and schizophrenia, and I believe that bi-polar has a different form of sense of self alternating between showing and hiding ones self, being more and less self consious.

By Marianne Kuzujanakis
Director, Supporting Emotional Needs of the Gifted (SENG)

In K-12 classrooms everywhere are children at risk for being misunderstood, medically mislabeled, and educationally misplaced. Not limited to one gender, race, ethnicity or socioeconomic group, they could be the children of your neighbors, your friends, your siblings, and even yourself.

These at-risk children are gifted children.

Contrary to common stereotypes, giftedness is not synonymous with high academic achievement. The gifted student archetype, while expected to be a mature classroom leader, does not fit all gifted students. Some are the class clowns, the lonely awkward child in the back row, the troublemaker. Special needs classrooms are where a number of gifted children end up — their giftedness left unsupported.

Read more here: Huffington Post: The Misunderstood Face of Giftedness

Let’s be honest here: excuses get us nowhere. The only way that I’ve found to break through them is to get to the real issue behind the excuses. I remember as a child creating myriads of excuses to avoid situations in which I felt uncomfortable, not even knowing that I was trying to avoid those situations. To me, those excuses seemed valid, but my family was quick to show me that every excuse has a basal root. In my experience with other Aspies, this seems to be a trend – we’ll find a logical way out of uncomfortable situations without even realizing that that’s what we’re doing.

All memes aside, what’s the root of my posting lag? Like many Aspies, I am absolutely petrified at the idea of any kind of large audience reading my personal thoughts and ideas. For several reasons, a simple thing like creating a blog post makes me into an excuse factory: I am extremely upset by the idea of failure, I find it very hard to open up to more than just a few people, and all I can think about as I type is that one grammar-obsessed poster who will shame my entire blog due to a singular spelling mistake.

No matter what holds you back, remember that excuses get you nowhere. Uncomfortable situations will remain uncomfortable until they become comfortable through familiarity – and how else can you become familiar and comfortable with them unless you throw your excuses by the wayside and meet the situations head on? The only thing that we are doing by making excuses is limiting ourselves and our capacity for greatness.

I am very inspired by the quotes I read from amazing and inspirational people; this is the one that finally helped me see the truth behind excuses.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” ― Marianne Williamson 

Thanks for sticking around, I’ll do my best to cut down on this excuse nonsense. Again, I’m always open to feedback, so let me know what you think/what you’d like to see me write about!

Click the Read More tab to learn how the life of a young boy with Asperger’s Syndrome changed when he acquired a “service dog”.

John Nathaniel Rosen (1902–1993) rose to prominence in psychiatry in the 1950s, ‘60s and ‘70s through his invention of a therapy he called “direct psychoanalysis.” Rosen impressed wealthy patrons, fellow psychiatrists, and the general public with his claims of quick, compassionate cures of schizophrenic patients. His theories, methods, and conduct have recently been detailed. In Against Therapy (Atheneum, 1993) Jeffrey Masson treats Rosen as a prime example “showing how emotional tyranny is at the heart” of psychotherapy. Edward Dolnick’s Madness on the Couch (Simon & Schuster, 1998) couples Rosen with Harold Searles as fraudulent practitioners of “talk therapy” to treat schizophrenia. Readers interested in full-scale exposes of Rosen’s rise and fall might consult these books and Rosen’s own Direct Analysis: Selected Papers (Grune & Stratton, 1953).

John Rosen was born in 1902 and graduated from high school in 1920. After completing the required premed courses at Syracuse University, he earned his M.D. in pathology in 1927 from the George Washington College of Medicine. In a 1981 deposition taken in connection with Rosen’s suit against the Miami Herald for alleged slander, he cited a number of positions occupied while he was in general practice in New York: a rotating internship at Cumberland Street Hospital (late 20s), a two-year internship at Brooklyn Jewish Hospital (1928-1930), six-month clinical training in psychiatry at Brooklyn State Hospital (1939), and a residence at Columbia-Presbyterian Medical Center (1945) when he began practicing psychiatry. Phyllis Friedman, once Rosen’s patient and then therapist, reported in 1977 that Rosen claimed he did psychological research and later held the rank of professor emeritus at Albert Einstein.

Certification by a New York State licensing agency as a Q.P., Qualified Psychiatrist, was evidently legitimate. However, when contacted by Virginia Snyder, a private investigator later hired by one of Rosen’s patients, none of these schools named above found any record of Rosen’s service. According to Millen Brand, Rosen did undergo a personal psychoanalysis with Dr. Ferdinand Nunberg, president of the New York Psychoanalytic Society. In a rare admission, he states that “my knowledge of psychoanalysis was limited to what I had learned in the first months of my personal analysis and from my reading on the subject,” [5P, p. 3] and in his 1981 deposition, that he had never taken board exams in psychiatry. Throughout his career Rosen exaggerated his credentials, cure rates, and support while minimizing his responsibility for damaging his clients. Thus, any characterizations of Rosen as a “psychiatrist” or “psychoanalyst” rest on flimsy grounds.

In 1947 Rosen published his most influential paper in Psychiatric Quarterly, “The Treatment of Schizophrenic Psychosis by Direct Analytic Therapy,” re-published in Direct Analysis: Selected Papers (1953). In this paper he reports resolving the psychosis of 36 patients suffering from “deteriorated schizophrenia,” ranging in age from fifteen to fifty-two. Physicians other than himself, he says, diagnosed his patients’ schizophrenia. He purportedly got results in months, even weeks. A lengthy chart details their symptomatology; types, duration, and (in)effectiveness of prior treatments, and duration of direct psychoanalysis among other details. Viewed closely, the chart reveals egregious flaws in methodology. Interestingly, 24 of his 37 patients are female: almost two thirds, exactly reversing their proportions in the general population: “Approximately two males are affected for every female” (Torrey, Surviving Schizophrenia, p. 123). Nor does he confirm his “cure” rates with any objective criteria or impartial evaluation. He defines “recovery” subjectively, meaning that, such a degree of integrity is achieved that the emotional stability of the patient and his personality and character structures are so well organized as to withstand at least as much environmental assault as is expected of a normal person, that is, of a person who never experienced a psychotic episode. [Selected Papers, p. 46]. Examined closely, the apparent “objectivity” of his chart collapses.

Firmly established as a bold and creative innovator, Rosen deeply awed O. Spurgeon English, Chair of the Department of Psychiatry at Temple University Medical School and author of a widely-used textbook, Introduction to Psychiatry. Rosen appears to have impressed peers and benefactors alike as charismatic, preternaturally capable, and compassionate. English secured a three-year Rockefeller Brothers grant in 1956 to establish the Institute for Direct Analysis within the Psychiatry Department. With this funding he provided Rosen with three buildings for his practice, treating patients chosen by a committee of two psychiatrists and a psychologist. Three years later, in 1959, English obtained an associate professorship for Rosen. English has disputed Rosen’s claim to have been promoted to full professor in 1960, a rank he supposedly held for 12 years until retirement at the age of 70. English told Jeffrey Masson, author of Against Therapy, that Rosen remained an associate professor throughout his career at Temple, leaving in 1965 when English retired (p. 150).

Rosen’s reputation as a creative and effective therapist continued to grow. In 1968 Millen Brand explicitly based an adulatory novel Savage Sleep on Rosen’s work, lavishly praising his approach. A 1970 survey of psychiatrists and psychoanalysts rated Rosen the second of fourteen most controversial living psychiatrists in the United States. In 1971 the American Academy of Psychotherapy named him Man of the Year. Rosen later asserted that the Doris Duke Foundation and Webster Foundation contributed to the support of his Institute, and that the Rockefeller Brothers Foundation and “other benefactors” established his Institute in Doylestown, Pennsylvania—all untrue.

Given Masson’s and Dolnick’s extended treatments, Rosen’s approach can be summarized. Freud never believed he could cure psychoses with his “talking cure.” However, Rosen drew explicitly on Freudian theory, with unique emphases. In “The Perverse Mother” Rosen blames his patients’ schizophrenia on a lack of maternal love, stunting their normal development in the earliest, oral stage. Twinned with this putative cause is an equation of dream with psychosis, into which patients have escaped to muffle their anguish at being unloved. The patient’s resulting psychosis, he claimed, was an “interminable nightmare.” The therapist must awaken the sufferer “by unmasking the real content of his psychosis.” In extended exercises of “naive Freudianism,” Rosen simplistically labeled his symbolic clients’ “productions” with cursory, stock interpretations. Snow-capped mountains were a mother’s frozen breasts, he liked to say. He told patients their mother’s milk had been sour, that women had incestuous fantasies about or actual encounters with their fathers.

Rosen reports that the mothers of patients often expressed an anguished concern for their sons or daughters, verging on the self-sacrificial. Their protests, he admits, seemingly fly in the face of blame for bad mothering. Yet he has discovered, because he believed his unconscious deeply in tune with that of the patients, the patient recalls the mother’s non-verbal cues in the earliest, oral stage of life: the patient remembers an unloving mother’s message, saying, in effect, “Be still. Be quiet. Be dead.” If schizophrenia stems from disturbances in a patient’s earliest infancy, why then does the illness appear in late adolescence or early adulthood? Rosen invokes a Tower of Pisa metaphor. The patient’s selfhood was “built on a shallow, uneven foundation.” Thus, succeeding stages of development—the onset of puberty, independence, marriage, and parenthood—shake an already faulty structure, leading to collapse.

Because bad mothering caused the disease, the therapist must replace her. He must use “cunning, guile, shrewdness, and seductiveness” that are buried in his own unconscious to ferret out the patients’ secrets and return them to their pre-psychotic state. To paraphrase, the therapist surrenders to his or her own unconscious, primitive impulses to unravel the patient’s conflicts. Rosen suggests his own “capacity for loving” is a “divine gift” enhanced by psychoanalysis. To treat patients left largely “unimproved” by previous treatments, Rosen says, the therapist needs a high “degree of inner security.” He makes up for his patients’ “tremendous deficit of love” by forcefully, lovingly, and informally breaking through their defensive, psychotic shells. Sometimes—quite implausibly—he claimed “bringing the patient up all over again” by spending four to ten hours a day with her for months.

Sprinkled through Rosen’s published writings are strong hints of misogyny, an obsessive homophobia, implausible rationales for lies and impostures, and briefs for verbal, physical and sexual abuse of patients. Rosen openly expresses distaste for women who step outside traditional homemaking roles. He attacks their threatening desire to “wear men’s clothes, try for commanding positions in business, and prefer not to care for their own children but hire nurses to play the role of make-shift mother” as “a perversion of the maternal instinct.” [Selected Papers, p. 101]. Time and again he strains at interpretations that purportedly uncover veiled homosexual tendencies. Typically, Rosen uncovers “a homosexual defense against incest temptations and the danger of the lofty position, i.e., manhood.” [SP, 31]

To shock patients out of denial, Rosen would tell them he’d once been psychotic himself with the patients’ symptoms. He called this device “the trick against the trick.” He would assume the roles of priest, mother, or mother-in-law, among others. Or he would stage psychodramas. In one instance, psychiatric aides impersonated FBI agents to unmask a patient’s fantasies of criminal wrongdoing. Another skit led to near-disaster. Confronting a patient believing her father was condemned to death, he brought the family together and announced a spurious reprieve from the governor, followed by a celebration. The patient reacted by refusing to eat and losing 40 pounds. Rosen justified his bizarre roles and enactments as “helping patients re-establish contact with reality.”