We Fight the Fights That are Worth Fighting

Elise, A.K.A. aspergers2mom
asd2mom.blogspot.com 

Fifteen years ago, my oldest son was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). At the time, we had no idea what kind of future he would have -- if he would have at a future at all. Autism was not even a word on anyone’s lips at the time; no one was talking about it and no one was even acknowledging the epidemic that it was becoming.

Luckily, I had a cousin whose son had been diagnosed years earlier and I called him for some advice. The best thing that he ever said to me and what I pass on to others is: Do not project the future for your child. Take each day, each moment if necessary, and do what needs to be done at that time. Then one day you will look back and see how far your child has come. That is exactly what I did -- and when I look back, I see miracles.

My oldest, whom we call Collegeman, was falling apart by the time he was five. He had regressed to constant stimming: he couldn't sit through a class, barely spoke, and lacked the social understanding of how to behave. But what he could do was read, and write, and create. We had had no idea that he was hyperlexic. In fact every doctor, every speech therapist, every school I took him to at the time had no idea what they were looking at with collegeman and the ones that did dismissed us out of hand. So needless to say when we received that initial diagnosis we were relieved to know what we were up against and what we had to fight. By the time our youngest, Highschoolboy, was diagnosed we were better prepared and knew what we had to do.

Yes, I say fight. Because it is a battle of wills between a disability that would take your child and hide them behind a wall of silence and you the parent who needs to do everything possible to make sure that does not happen. I know many people do not like the notion and resent when people say that autism steals your child. But it does. Yes you could be one of the lucky ones that are extremely high functioning to the point that you get along fine in society but most persons on the autism spectrum are not that lucky.

I see autism not as a part of my children but as this monster that is in their brain, like a parasite, that prevents them from being whom they were meant to be. It takes things that are so easy and makes life so hard. It takes moments that should be joyful, like high school graduations and bar mitzvahs and makes them moments of pain and trauma. It even takes from them even the joy of a movie because the sound system is cranked up too high and they can’t handle the auditory output. No, don’t say this is about me, this is all about them and anyone who doesn’t understand that has never loved a child. As a parent you want your child to enjoy, revel in and live their life. Being a part of milestones and taking joy in accomplishments and basic fun is part of being a whole human being. When your child can’t do that, when your child cries because they can’t wear a favorite shirt because the feel of it causes them pain, you cannot tell me that that is life. This is not life; this is not something you have to accept. In my book anyone who accepts that their child deserves less of a life, has no business being a parent. So this is why I fight.

But what does that fight entail? Oh so many things. The first thing we did for Collegeman when he was 5, was make the house autism-friendly. We took everything that he was obsessed about and put it in the great room. That became our autism room. He had a place where all his special belongings were and they were kept in the manner that he wanted. We also had a couch and a TV so he and his brother could watch their videos and play their video games. The computer was also in that room so he could access his educational games whenever he wanted. What we did not allow him to do is sit alone and not interact with other persons. We forced him to be with us and to participate in life. We took him everywhere with us. He went to the grocery store, the mall and the playground. Yes, we had to watch him closely and yes, we had to find creative ways to get him to enjoy the outings. Whether it was giving him donut holes so he would sit in the cart or letting him play his handheld while we were out and making sure that he understood how to behave in public.

Organizing his world at home also helped. We scheduled his world, just like that did in school. We made sure that he knew when something was going to happen, how it would happen and what his response should be. We left nothing to chance as best as we could. Social stories and schedules are some of the greatest inventions for persons on the autism spectrum. It helps them know what to expect and social stories helps them learn the unwritten rules of social behavior for that specific event. Don’t think that the social story stops as they get older either. Before something different is going to happen we explain what the event will be and how they will behave. We outline for them what the procedures will be and what someone will expect of them at the event. (At this time, however, it doesn’t have to be written down or cartooned. It is all oral instruction.) Over time too they learn what is expected in any given situation. New situations and transitions are always an issue. But with the proper support and care it can be done with minimal discomfort for the person on the spectrum. Planning, all it takes is planning.

Another aspect of their existence is organizing their world and responsibilities. Now you would think that being creatures of habit and rules that organization would be easy. But it is not. To be able to organize your world to include being able to take care of yourself is very different than keeping to a rigid schedule. What your child needs to learn is how to employ the skills known as executive functioning. These skills enable a person, any person, to know what they need at any given time. They need to know when assignments are due in school, what they need to study and what they need to wear (depending on the weather) for that day. They need to know how to get up to an alarm clock. They need to know how to use a bank, pay for lunch, order lunch. They need to know what to do when they are sick and how to handle a doctor’s office. They need to understand where money comes from and how to pay bills. They need to know good old fashioned home economics.

Executive functioning skills are the skills that help us order our lives. They enable us to take care of ourselves. Again, it is not something that comes naturally to our children, but it is something, as with everything, that they can learn. Now, this does not happen overnight. It takes time and you need to start as soon as you know what the problem is. An executive functioning task is as simple as knowing where to hang their coat and what goes in their cubby in their pre-school class. Everything is age appropriate and even developmentally appropriate. Remember that our children do lag behind their peers, it’s why autism is a developmental disability, but it doesn’t mean that they will not get to the place they need to be. It just means they may get there a little later that is all. So when I speak of the things that Collegeman and Highschoolboy need to work on, remember that they are working on these tasks because they are teenagers, they know where to hang their coats, and what to put in their cubbies. OK they don’t always pick up their dirty clothes off the floor, but we are working on that too (honestly I think that has more to do with being teenagers than having an autism spectrum disorder). As you can see the tasks and requirements get more involved as they grow older, just like for everyone else.

Another skill that I found that we need to work on is transitioning. When the boys were little it was transitioning from class to class. Even from activity to activity inside the classroom. But as they grew older the transitions changed. When they were little the schedules and social stories helped a lot with transitions, they learned what to expect and when. Today the transitions that the boys work on happen to be transitioning to different aspects of life. When the boys went from elementary to middle school to high school, we not only created social stories for them, we took them on tours of the new schools, had them meet some teachers and generally helped them acclimate to their new environment. The interesting thing is that our district did that for all the students, we just did made these trips to familiarize them with their new locations more often than their peers.

This is a great step to take no matter what new environment your child is entering. Even if you are taking your child to a new camp or a new church or synagogue you should go with them and help them familiarize themselves with the area. They can practice sitting in the classroom, the bunks or the pews to get an idea of what it will be like. If possible they should meet the people that will guide them. If no one offers transition support, don’t be afraid to ask for it. It is an important part of helping your child get used to a new situation. In fact, Collegeman just started a new class with a professor he did not know. We asked to meet the professor and he was very obliging. It took all of five minutes, but it was enough so that Collegeman was more secure going into an unfamiliar classroom.

The next major and possibly one of the more important aspects of raising a child on the spectrum is to teach them how to advocate for themselves. When they are very little it is as simple as being able to say “no” or asking “why.” As they get older they need to be able to tell the teacher that they don’t understand what is happening in class. When they get out in the world, they need to be able to ask for help whether it’s in a bank, gas station, supermarket, or a restaurant. These are basic things that we do every day but again it is something they need to be taught how to do. Self-advocacy is more than standing up for yourself in life (knowing how to handle bullies), this is a big part of it too, however, self-advocacy is more about knowing when to ask for help and how to ask for help appropriately.

All these skills, organizing your life, executive functioning, transitioning, self-advocacy is a huge part of becoming an independent person capable of living life on your own terms. It is not something that starts when a person reaches 30 years old. It is something that needs to be taught from the moment your child emerges into the world. Parents of neurotypical children don’t even give any of these things a passing thought. Their children just learn these skills by existing or watching others do it. Our children need to be given step by step instructions on how to handle problems and deal effectively with issues that arise in their everyday world. It is an ongoing process but one that can be done successfully.

Collegeman was diagnosed with PDD-NOS at five years old. The doctors told us not to get our hopes up, as far as what his life would be like. I didn’t get my hopes up; instead I fought like crazy so my children would be able to decide what kind of life they would have, just like every other human being has the right to do. Collegeman is a junior in college. Highschoolboy is applying to college this year.

Don’t let anyone ever tell you your child can’t. Our new psychiatrist just told me that Collegeman would have trouble with the social pragmatics of law school. OK, like I didn’t know that, but it doesn’t mean that if that’s what he wants we won’t figure out a way for him to get there and be successful. Besides who hasn’t met a socially clueless attorney? There are ways to accomplish everything. You just need to never give up the fight and figure out the best way to teach your child what they need to know, to have the life that they are entitled to have. Readmore »»

The Child Can't Spell

Elaine Park

My son can't spell. At all. I like to joke about it, because in my culture (Anglo-Canadian) making wry, self deprecating comments is how you get through things while keeping your dignity intact. For example, my favorite line is "My son spells phonetically. I'm just not sure what language it is. Maybe, Latvian? Estonian?"

But it's true. The child cannot spell. He attends a pretty good public school and participates in a program designed to include children with Asperger's syndrome into the general education stream. He's in seventh grade, and after six years of me whining at six years of IEP meetings that the child cannot spell, the child cannot spell.

Solutions are presented and possibly applied. While the people who work in the program are great when it comes to dealing with behavior and social skills, they are not so impressive at follow through on things like help with spelling. Our newest inclusion specialist has read an article about using song lyrics to help with spelling and reading comprehension, but is a bit vague on when and how she will implement it. I push for details, a schedule! She is hopeful, but evasive.

Oh yes, reading comprehension. Another few years of me complaining, nothing happening. The child can read reasonably well, but not when it comes to math word problems. About these: math word problems are devious little traps overflowing with red herrings, arcane sports references, and complex sentences developed by people who hate children. They are designed, as far as I can tell, to ensure that kids who are good at math, but not reading, are not good at anything.

To be fair, most of my son's school career until recently has been concentrated on helping him survive the school day without mortifying meltdowns and classroom escapes. He's slowing down with age a bit though, and middle school life seems to suit him better than the elementary years did. For the most part he seems to be able to endure his classes and even has friends to hang out with at lunch and recess. Feeling inspired by this evidence of neurological progression, I decided last summer to have him tested at our local Lindamood-Bell center. Maybe now we were ready to tackle some of the academic deficiencies that keep him from being as brilliant on paper as he is in life.

Why can't the child spell, I asked, again. Back came a hefty red folder with many test results. It seems he is weak in all areas: phonemic awareness, symbol imagery, contextual reading. The solution is a six to eight week program, four hours per day, at cost of $2,000 per week.

I don't doubt for a second that it's effective. In fact shortly after our assessment, I met an acquaintance with the same-aged son who was in the midst of the program and could now spell "furniture" just like that. Should we do it too? Or should we use the money and go to Australia? Really, what is more important? Being able to spell "dingo" or seeing one in real life? Not to mention the fact that sending my child to spend four hours a day learning to spell instead of having a summer vacation wouldn't work anyway. There would be great anger, bitterness, and resentment. Heels would be dug in, and I just can't see him tolerating being cooped up inside when summer, Lego, the pool, friends with free time, and more would be out there calling to him. Everyone thinks they can deal with my son. He seems so normal and cheerful. Until you hit the wall of opposition and resistance, and then watch out! Maybe if they promised us a refund.

So now, here I am wondering again what to do about the fact my child can't spell. My dream is to locate some sort of tutor who can both teach him spelling and understand his Asperger Brain. For those of you who don't know about the Asperger Brain, let me explain. This is a Brain that takes in the world and outputs responses in a way that is unpredictably different than the way the rest of do it. It is a Brain that can work very well if the right motivation and incentives are discovered and offered, in the right way. You can't take the Brain's output personally; if the Brain decides to short circuit for a while in a quick, intense electrical storm, there's not much you can do but wait it out and figure out for next time how to keep the wires from crossing and sparking.

Don't get me wrong, I quite like the Brain. I am just not willing to entrust it to anyone who doesn't get it and will consequently cause distress and sadness for the boy who owns it.

One of the editors who is responsible for The Thinking Person's Guide to Autism suggested I put all this out there to see if anyone who reads these pieces has a solution for me and my child who cannot spell. Please feel free to add your comments and share your wisdom.

In the meantime, my son and I will continue plugging through this, with the help of spell check, and me, the scribe, and of course that way we have of finding humor in the underlying absurdity of life, school, and words with "ght" in them.

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The Government Knows How Vaccines Cause Autism, But Won't Tell Us

Over the last few years, the federal government has made several statements that they know that there is a scenario by which a seemingly healthy, fully functioning child can be vaccinated and regress into autism. But instead of telling the medical community and the public what that is, they have decided to withhold that information and make parents guess.

In the Hannah Poling case, a panel of HHS doctors were forced to admit that her vaccines cause her autism. Her father was a Johns Hopkins neurologist, her mother a nurse and a lawyer, they gave her every test under the sun and closed any hole that the government could wiggle out of in trying to deny that her autism was a vaccine injury. The government has tried its damnedest to wordsmith both the concession document and every other statement that they have been forced to make on the case to make it sound like vaccines really don't cause autism, but they have frankly done a sucky job of it, and each of these non-denial denials concocted by lawyers and pr men is more embarrassingly bad than its predecessor.

First we had the concession document itself which would not refer to what Hannah has as "autism", which is what she has, but called it, "features of autism spectrum disorder", which is both factually correct and complete bullshit. Any person diagnosed with any disorder also has the features of that disorder. Hannah Poling has DSM diagnosed full syndrome autism.

Then out came the vaccine program apologists who tried to blame the victim and make it sound like it wasn't really the vaccines fault that Hannah got sick, it was that Hannah was a poor receptacle for the super wonderful vaccine.

Then Julie Gerberding appeared on CNN to tell Dr. Gupta that vaccines can cause autism in children with mitochondrial disorders, but that vaccines could not cause autism. And he let her get away with that. Julie stressed that this occurrence is "rare". This is difficult for families to swallow since there are tens of thousands with the same story as Hannah.

She went on to claim that the fact that mitochondrial disorders and vaccine induced autism are linked should not be generalized to "normal" children, but fails to tell us which babies are the "normal" ones. Hannah seemed "normal" before her shots. So did my son. If you are not looking for abnormal, aren't ALL children considered "normal" before their vaccine induce regressive autism? If not, it wouldn't be regressive, would it.

HRSA's David Bowman let us know that vaccines don't cause autism, they just cause brain damage that may turn into autism, but that they don't check to see how often that happens. This statement not only beats Clinton's CYA for hanging his testimony on what the definition of the word "IS" is, it also torpedos Gerberding's "rare" claim, as he admits that they don't even check to see how often this happens.

So now the government's position is that vaccines don't "cause" autism, the just "result" in autism.

But since the beginning of this revelation two years ago that they know of a scenario in which a seemingly "normal" child can be vaccinated and regress into autism, have they shared that with the medical community and the public so that children can be screened to see if they are the ones that are vulnerable? No. Anne Schuchat of CDC says that would be to expensive.

Instead, they have withheld that information and are now making autism families actually GUESS at why and how their children regressed into autism from their vaccines.

Last week HRSA issued a letter to autism families in the vaccine program letting them know that they were rejecting the previously submitted MMR and thimerosal claims, and that families had to come up with a new theory or risk their cases being thrown out. (Because they are the government, that's why).

Mary Holland, appearing on Fox News this week:








So for two years HHS has been open with us that they know what vaccine induced autism is, but they are not going to tell families with children what it is... they have to guess.

These people do not deserve to hold positions in government, they deserve jail time. Readmore »»

For the 85% of Us Who Can't Work

Clay
http://cometscorner-clay.blogspot.com

I can’t say I’m surprised to learn that most autistics have a great deal of difficulty getting, and maintaining a job for more than six months. I believe it, because I know just how hard it has been for me. I saddled myself with a wife and two kids before I even got out of the Navy, and for quite a while, the subject of my wife getting a job wasn’t even discussed, because our generation wasn’t much into that. Instead, I took whatever job I could get, starting as a low paid parts clerk, until I accepted my stepfather’s offer of helping me get a job at an iron ore mine, (which paid much more). After I recovered from a huge accident, I returned and worked there for another three years. They gave me some hard and nasty jobs for awhile, such as wrestling with 55 gallon drums, getting other heavy supplies for drill and shovel crews, until I had some seniority to claim an easier job just driving a labor crew around. All of my time there was rough, as it involved interacting with mostly ignorant rednecks. They had all heard rumors that I had won a big settlement from the company for the accident, (which wasn’t true), but they all believed it, and gave me a hard time.

They also gave me a hard time because I lost 30 pounds after the accident, and it took me a couple of years to tip 140 again. The Mexican co-workers called me flaco, (skinny), and the Oklahoman rednecks called me “little perfessor.” I was smarter than all those bastards, my vocabulary and maybe some of my comments gave me away, and they weren’t much appreciative of that. No single “big thing” ever really happened, because it was a large company operation, and also a union place, and no one wanted to lose their job. Still, there was that time when I was sent to the warehouse to pick up a “skyhook.” (Hey, I was only 22, and fresh out of the Navy).

Okay, that parenthetical remark up there was just an excuse ... to hide the embarrassment ... the reason they did it and got away with it and all those other fool’s errands, was because they saw and knew that I was just that naïve. This was back in ’69, thirty years before I was diagnosed with Asperger’s Syndrome.

I can skip over some of my worst moments; working at a car wash, flipping burgers at Jack-in-the-Box, spending 9 months whacking, stacking, and burning weeds in 110 degree heat, slaving away in a factory where we would often be locked in, in order to finish up another couple coaches, working on painting crews, making salads and sandwiches, and sanding and oiling pianos, where I heard my foreman tell another foreman, while both of them were watching me, “It’s true what they say -- Hire the handicapped. They’re cheap, and fun to watch.” I still have no idea what I was doing ‘wrong’; that was about 16 years before I got a diagnosis. I also finished donuts, and ... God, I’m getting dizzy remembering all that stuff.

It wasn’t only the hard work, but all the crap I took from the co-workers, with the refrain of “little professor” repeating itself. Yeah, I did know a lot of things, the academic sort of things that 99% of my co-workers would never understand. I took a Mensa test in ’80 that said my IQ was 150. But the tests I took for diagnosis in ’99, showed that my ‘performance IQ’ was two standard deviations lower. There were other results that showed similar discrepancies in abilities.

This picture was taken, around 1988. I was 41, and only had enough for the next month’s rent, and had just been fired the Friday before Christmas of ‘87, but I had gained a new determination after my father died. I realized I had to take a stand, had to stand up to bullies who just wanted to see me leave. I earned my spot, through talent, skill, and working very hard and long hours. The owner (employer) was the only one who was glad I was there. After making several of my coworkers back down, embarrassing one in front of the others, and playing a sneaky trick of just disposing of another worker’s timecard, I was impervious to their shenanigans. The picture up there is a picture of a “winner,” because of skill and determination, and refusing to back down. I was finally in a pretty good position. The redneck foreman was not my boss, and couldn’t tell me what to do, or how to do it. (It always really bothered me when people would try to tell me how to do something.)

I have a female cousin, maybe a year older than me, and when we were young, we were told she was the ‘R’ word. Nobody knew much about autism back then, but at the time, it was the only explanation for her behavior, the way she spoke, and thought. I’m sure that if Lynne were diagnosed now, it would come up as “autistic,” of the Kanner variety. I've often wondered if I was little bit ‘R’-worded. Certainly, my naïveté and inability to communicate or socialize was pretty pronounced. And yet, I was smarter than most of the people I met, and I'm not bragging. I also know that that would not have been so if I were in any actual academic circles.

I have another “invisible handicap”: scoliosis. “They” knew about it as soon as I took my first physical, before I even joined the Navy. I should have been classified 4-F, but they didn’t do it. After spending some long days of typing, I went to see about my back problem, and they finally told me about it. Even though I had just re-enlisted, I spent the next year fighting the Navy to get out. That scoliosis gave me a big problem with just about every job I ever had, because most of them were manual labor jobs.

I’ve been retired for nearly two years now, and because I retired four years early, I get a very small SS check. It does cover my bills, and for anything more than that, I just don’t give a rat’s ass! I’m perfectly happy doing nothing, because, well, doing nothing is what I’m best at! I’m just so happy to be free, to not have to go to work every day, to not have to eat somebody’s shit just to keep my job, to not have to worry about pleasing anyone other than myself, (okay, and my cat), and I’ve always been free of greed, desire, or jealousy of what others have.

I can look back on a lifetime of some small accomplishments, most of them in the past 23 years, (since I got really determined), and it does give me some comfort to know that I was able to support my family, and then just myself, despite the many problems I had because of my invisible disabilities: scoliosis and Asperger's. In being able to remain employed, through about 50 different jobs, I now realize that I beat some long odds, the ones that state that 85% of us are unable to hold a job for more than six months. I’ve counted them up, and just twelve of those jobs lasted as long as a year, or two, or three. The longest was the last one, Health Aide, which lasted 16 years. Six years before diagnosis, and ten after. So yeah, maybe my biggest accomplishment was just being able to support myself, without any safety net, against such long odds. It makes me feel a little better, even though I don’t have a lot to show for it.

The trick is in not needing much.

I hope that those who want a job, who want to be able to support themselves, just for the satisfaction of doing it, will be able to do it. It’s a great boost for one’s self-esteem. I will support anything that comes along that helps people to become independent, because that’s a good feeling to have. In the meantime, until that happens, I would say to them: Be happy for what you have. Be happy that you have your freedom, have no boss, no co-workers to hound you for being different, to hurt your feelings, to work against you trying to get you fired. If you have a government check, (and are able to live on it), but are living with relatives to make ends meet, then find some way to ‘pay your way’ by doing worthwhile things around the house. There are more ways than just earning a living to gain self-respect.

Finally, I know that not having a job when you know that you could work under the right conditions, is just downright depressing. Living in need is in itself depressing. If someone has never been able to work, for whatever reason, depression can turn into despair. That sucks, it totally does, but I would remind you that people’s problems are all relative. I’d venture that whacking weeds, and stacking and burning them in 110 degree heat also sucks big time! Most of those jobs I had were pretty damned bad, and the near constant hazing from co-workers made them all the worse.

I just want to repeat something I said to the first email list I joined, almost eleven years ago: "We are, each of us, responsible for the thoughts in our heads." We have the power to choose whatever thoughts we wish to entertain, and negative thoughts can only give birth to negative situations. The same goes for the flip-side. I choose to be happy with what I have, and I am. I thank God every night for all that I have, (not that I think He hears me), because I know the mechanics of how prayers can actually work. I know that we are the "authors" of our own lives, we ourselves create our own worlds, and are happy in them (or not), as we choose. Go and be happy, with all your might.

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Breitbart Blog Runs My Story on The Atlantic Hijacking The Age of Autism

Check it out on Big Journalism.

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Why My Child With Autism Is Fully Vaccinated

Shannon Des Roches Rosa
www.squidalicious.com
www.canisitwithyou.org
www.blogher.com/blog/shannon-des-roches-rosa

Do you still wonder if there's a link between vaccines and autism? Then ask yourself: have you or would you ever let your child travel by airplane? If your answer is "yes," then you should re-examine any concerns about vaccinating your children. Flying and vaccination both carry risks, but those risks are statistically unlikely to affect your family.

You should also know that Andrew Wakefield, the researcher who launched the autism-vaccine panic via a 1998 press conference, had his related research formally retracted and his medical license taken away. You should know that the mainstream media, after years of "considering both sides," now yawns when yet another study fails to find a link between vaccines and autism -- and that gossip sites like HollywoodLife.com want to know why anti-vaccination activist Jenny McCarthy won't publicly end her campaign against children's health. You should consider that decreased vaccination rates put our children's health at risk; children can and do die from vaccine-preventable diseases, and those diseases are resurfacing with increasing vigor.

Still, no amount of evidence seems to satisfy parents who continue to believe in vaccine-autism causation. I understand fears like theirs, as I've been there myself. I remember the stone age of 2003: my two-year-old son Leo had just been diagnosed with autism, and I was desperate to help him.



My first action was to enroll Leo in an ABA program -- the only method proven to help children with autism gain skills. But ABA is hard work and doesn't promise miracles, and I wanted changes, fast. I craved a son who could tell me, "Mommy, I love you!," so I started exploring alternative autism therapies.

And indeed, I found many self-appointed autism professionals who wanted me to look past the challenging but loving boy I already had and focus on a theoretical Recovered Boy of the future. I also found myself looking past their promotion of scientifically questionable approaches, and focusing on one of their popular theories: they thought mercury in vaccines caused autism.


Those anti-vaccination people were passionate about "curing" autistic children. I was passionate, I wanted to cure my autistic child. I did what they told me.



I stopped vaccinating my kids.



My youngest child was born in 2004, eighteen months after her brother's diagnosis and during the thick of my alternative-treatment frenzy. Almost every autism activism resource I found implied or proclaimed that Leo's autism was likely caused by an injected environmental factor. I freaked out, and decided there was no way in hell my new baby girl was getting a shot of anything. Not even vitamin K.



As that fortunately healthy baby grew and thrived, so did the evidence refuting a thimerosal/vaccine/autism link. Unfortunately, so did the rates of preventable and potentially lethal diseases. Turns out I wasn't the only parent who'd been scared into tossing aside my kids' vaccine schedules.

I wanted proof that vaccinations had in fact affected my son, so I formally investigated a possible relationship between Leo's autism and the vaccinations he'd received as an infant and toddler. I enrolled him in a MIND Institute study on autism and regression that tracked the emergence of his autism symptoms via home videos, medical records, and my own journals. 



The result: there was no evidence that Leo had regressed into autism after being vaccinated.



I thought long and hard. And decided that the risks of vaccinating my children were acceptable.

I started slowly, under the supervision of a pediatrician willing to listen to my concerns. My youngest child initially got only one shot at a time, only when she was healthy, and with a month between doses, because I wanted to see how she reacted to individual vaccines. She had no adverse reactions, so I began to allow vaccinations in small batches. I also resumed vaccinating my son -- you know, the one with autism. Both kids remain fine, or at least no quirkier than they were before their shots.



Mine is not the only vaccination perspective you should be familiar with, however. As you likely know, there is no talking about vaccines and autism without mentioning "safe" vaccine advocate Jenny McCarthy. Ms. McCarthy once declared:

"If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f___ing measles."

Really? If we're going to celebrities rather than experts for our information, I have to counter with the Law and Order: SVU episode Selfish, in which a child too young to be vaccinated died from encephalitis as a complication of measles; measles acquired at a neighborhood park from an unsymptomatic carrier kid whose mother refused to vaccinate him.

I'm sorry, Jenny, but Mariska Hargitay, Christopher Meloni, Ice-T, and Stephanie March say that measles kills and that we need to vaccinate our kids not just to keep them healthy, but also to protect other people's kids. And because the SVU team members are celebrities too but outnumber you, I'm going to side with them.



I kid, but only slightly, as I really do prefer my son alive, autism and all. And I seriously doubt Jenny would volunteer to give her son measles -- or pertussis (whooping cough), diphtheria, tetanus, or polio, if she'd actually seen these diseases affect a child, or considered that acquiring the diseases is much riskier than getting vaccinated for them.



Jenny is not alone in underestimating the critical role of vaccines, or the diseases they prevent. In June 2010, I participated in a conference call with EveryChildByTwo, a non-profit dedicated to educating the public about vaccine-preventable disease. I listened as Danielle Romaguera described her infant daughter Brie's 2003 death from pertussis -- a disease herd immunity was supposed to protect the baby from, as she was too young to be vaccinated; a disease vaccine campaigns had squelched so successfully that her doctors didn't recognize it, not until it was too late. A disease that caused baby Brie so much pain and suffering that a Romaguera family friend chose to fully vaccinate her child with autism.

A disease that, seven years later, has been declared an epidemic in California. Katharine Mieszkowski of BayCitizen.org, using her organization's excellent interactive California immunizations statistics database, observed:

"Marin and Sonoma Counties have reported the highest rates of whooping cough in the Bay Area this year. They also have the highest local rates of personal-belief [vaccine] exemption."

When I talked with Katharine, she said that budget-challenged California schools don't always have the resources or a school nurse to properly monitor immunization compliance.  She also said parents who took out personal belief exemptions were worried about possibilities like their kids' immune system being overwhelmed -- which, to me, means they probably weren't consulting a pediatrician on the matter. And a personal belief exemption doesn't differentiate between skipping a few vaccines, and skipping all of them -- so while we have data on vaccination non-compliance, we don't have complete information on specific vaccination rates. All we know is that California parents are choosing to put their children at risk.

We live in a culture where some people make critical health decisions for their children based on the opinions of celebrities rather than pediatricians. I'm asking you to help right the balance, to ensure that science-based viewpoints counter earnest but misinformed sensationalism in the autism -- and parenting -- communities' information flows.

I know that some people will never vaccinate their kids, no matter the argument or evidence (and 2010 has been a banner year for both scientific evidence and court decisions debunking autism-vaccine links). I also know some kids can't be vaccinated due to health or age conflicts. Herd immunity will compensate, will keep the unvaccinated kids safe from disease if enough other children get vaccinated. That is why we must reach out and talk to parents who are still formulating their immunization opinions, to educate with facts rather than furor, to have the confidence to spread the word about what we know, to tear down the wall of harm that anti-vaccinationists have erected, and to shout out loud: 



There is no link between autism and vaccinations! I believe it is my social responsibility to vaccinate my child!

----

A version of this essay was previously published on BlogHer.com.

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Olmsted and Blaxill discuss The Age of Autism on Fox Business

Dan Olmsted and Mark Blaxill on Fox Business talking to Imus about their book, The Age of Autism.

Is Autism Man Made?



Is There a Vaccine-Autism Link?



Update: I have just learned that these videos are being blocked in the UK. Instead of Dan and Mark, they read, "This video contains content from FOX News Network, who has blocked it in your country on copyright grounds". Yet Brits CAN watch the other videos on the Fox Business You Tube Channel. Just like Andrew Wakefield's book... BANNED across the pond!

Apparently not only are the Queen's subjects not allowed to speak truth to power, they are not allowed to hear anyone else do it either. They can't have mum's thinking for themselves, now can they?

Confirmation of this is welcome from our friends across the pond. Readmore »»

Am I More Than My Autism? I Refuse to Answer the Question.

Rachel Cohen-Rottenberg
www.journeyswithautism.com

www.sojournerartist.com

I've recently read two articles in which mothers of autistic children wrote that their children are “more than their autism.” Something about this assertion has been bothering me, and I want to explore why.

When I read the first article, I thought I’d entirely put my finger on the problem. The writer, a non-autistic mother of two autistic boys, had only negative things to say about autism, and it seemed clear to me that she was saying that her children were more than a collection of negatives. Because I consider autism a condition with both positive and negative aspects (like every other condition in life), I attempted to argue with her on that basis. I didn’t get very far, mainly because the writer kept asserting that her children were human beings, not just autistic human beings, which pretty much ended the discussion. After all, who is going to argue with the inherent humanity of any person? I didn’t see anywhere to go, even though something still felt very wrong to me.

Then, I read another article, this time by someone on the spectrum who has two children on the spectrum. She, too, asserted that her children are “more than their autism.” Like me, she sees both the positive and negative aspects of autism, and so I had a much easier time reading and thinking about what she had to say. And yet, the assertion still bothered me. To try to get at why, I decided to apply the question to myself: Am I more than my autism?

That’s when I began to understand the problem.

The term autism is itself very problematic. I agree with Amanda Baggs when she says that there is no such thing as autism, and that there are only autistic people. I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way. In fact, I’m coming to feel that the word autism is simply a social construct. After all, if it’s all about behaviors, with some behaviors considered impairments, how can it not be a social construct? In some cultures, making eye contact, especially for long periods of time, is considered rude. In some cultures, it’s perfectly acceptable to rock back and forth on a regular basis. After all, observant Jews pray three times a day, and rocking back and forth constantly is part of the ritual. We’ve been doing it for centuries. And yes, some people find it very strange, but their experience of us is a cultural judgment, not evidence of an objective reality.

Even if you move toward describing autism in terms of subjective experience rather than externally verifiable behaviors, it’s still difficult to escape the social implications of what happens to our descriptions of our own experience. I can describe, for example, my inability to filter sound, my extreme sensitivity to the emotions of other people, my lack of guile, my visual acuity, and my hunger for color, texture, and pattern. And yet, if I take those together and make them part of the definition of something called autism, I’m moving them from the realm of autistic experience into the realm of a category—a category in which my experience can be broken down into a list, in which it can be medicalized, in which other people can become “experts.” That’s a realm that the culture constructs constantly and values excessively.

So the very idea of using the word autism as though it is separate from my personal, subjective, daily reality is very fraught.

But there is something more about the question Am I more than my autism? that is very troubling. Or perhaps it’s the expected answer that’s troubling -- the expected answer being Yes, I am more than my autism. I am a human being. Autism is just a part of whom I am. This answer is very problematic, for a number of reasons, not the least of which is that it threatens to divide me up into component parts: part autistic, part Jewish, part female, part this, part that. I don’t feel like a series of component parts. Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Even more important, though, is that my humanity is implicit in my being a woman, in my being Jewish, in my being autistic. After all, am I more than a woman? Is my husband more than a man? To say yes, we are both human beings, is to miss the point entirely. Being a woman automatically means that I am a human being. Being Jewish automatically means that I am a human being. Being autistic automatically means that I am a human being. Being female, and Jewish, and autistic, are not component parts of being human, nor is being human somehow above and beyond them. Being human saturates them. Being human is what makes being female, and Jewish, and autistic worth the effort.

And make no mistake: being a woman and being Jewish are not easy, any more than being autistic is easy. Being a woman and being Jewish are not entirely positive experiences, any more than being autistic is an entirely positive experience. For some reason, it’s easier to speak of the mixed experience of gender and ethnicity than the mixed experience of being autistic, at least in this day and age. No one but a misogynist would deny that being a woman is a wonderful experience in some times and places, and a horrendous one in others. No one but a dyed-in-the-wool anti-Semite would deny that being Jewish can be extremely joyous and extremely difficult, depending on circumstances, and often at the same time. But there are days in which I’m hard pressed to find anyone saying anything positive about being autistic, as though being autistic were in some other sort of category, as though the usual paradoxes of being human don’t apply.

Many, many people don’t really see being autistic as being fully human, and in that blindness lies the problematic basis of the original question. When people say that their children are more than their autism, I think what they’re reacting against (and rightly so) is the pernicious idea that somehow being autistic and being human are mutually exclusive. And yet, at the same time, they run the risk of playing into this idea by asserting that there is something more than being autistic, and that is to be human. Separating the categories autism and human does not always result in the two becoming mutually exclusive, but it sets up a dichotomy that can easily reinforce the prejudices of a great many people.

When you come down to it, perhaps what parents are really saying is that their children are more than the stigma of the word autism. They are more than a medical diagnosis. They are more than the cultural refusal to celebrate them. They are more than the daily reminders that there is a construct called “normal” in which life is supposed to be easy and they don’t fit.

I have no argument with any of that.

But I’m not going to answer the question Am I more than my autism? because I do not accept its premises or its implications.

I am an autistic person, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-autistic people do not. I am a woman, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that men do not. I am Jewish, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-Jewish people do not. I am thankful for my life, whether or not it’s painful, whether or not it’s easy, and whether or not it measures up to the dreams I once had for myself or that other people had for me.

A dream is only a starting place. Life is where the action is.

----

This essay originally appeared on www.journeyswithautism.com.

Readmore »»

The First Rule of Autism Club

Amy Greatbanks
www.ishouldhavecalledhimcalvin.wordpress.com

 If you have seen the film Fight Club, then you most likely know that the first rule of Fight Club is "we don’t talk about Fight Club."

When we got hit between the eyes with the diagnosis of autism spectrum disorder for our son in December 2007, we had no idea we were joining such a large club. The sensation of knowing for certain that my heart-achingly precious, adorable, vulnerable child had autism was soul-crushing. And all I wanted to do was say it out loud.

If we don’t give voice to this condition, we do the ones we love the most a great disservice. So many people with autism don’t have a voice of their own.

That is why I vowed that my first rule of autism club was that we do talk about autism club. Almost every day I speak to someone about my child and how autism affects his life. I have had some wonderful, important conversations with people, who are grateful for the chance to learn more, especially parents whose children attend school with my son. The most important job I have, as a mother, is to advocate for my children. By being honest, open, willing to talk and share a part of our lives, I am opening not only people’s eyes, but their hearts.

All children need and deserve love, respect, understanding, patience, tolerance, compassion, to feel safe, and a soft place to land.

Parenting is the hardest job anyone can do. It is infinitely harder for a myriad of reasons when your child has different needs -- when your child does not sleep through the night, when your child cannot tolerate the smell and look of certain foods, when your child is overloaded by their entire world in one way or another.

The label of ‘parent’ encompasses an enormous number of roles and responsibilities. When your child has autism, some of these are greatly enhanced -- you become their protector, their advocate, their conduit, and their filter in the world. Your home becomes a safe haven, the place of retreat and respite.

The journey of being a parent to a child with autism has been life transforming for me. I continually adjust to the new normal. Progress can sometimes be hard to see and we sometimes have to accept that this includes backwards steps, too. I take each day as it comes. I have learned to never underestimate anyone and to dream big.

I have discovered that I possess an incredible capacity to endure embarrassment. Such as when my son, after being instructed not to splash too close to the babies and their mums in the local swimming pool, decided to hug the nearest baby and her grandma. After explaining that my son is still learning about acceptable social boundaries because he has autism, I then got to debunk one of the myths of autism -- that all people with autism do not like to touch or be touched. There can be an upside to most situations, it just sometimes takes a while to see them!

Like all parents, I want my children to reach their potential, to have every opportunity to learn, develop and be happy. I try my hardest to be my children’s soft place to land, to be their most passionate supporter. This is no different from any family. The intensity might be different, the focus certainly will be. The excitement of seeing your child who previously has struggled to communicate basic needs, respond to a question from a peer with ease and delight is indescribable.

But I hope you get the picture.

My hope in sharing a little of our story is that everyone knows the first rule of autism club – do talk about it, share, be willing to ask and willing to listen.

Readmore »»

Advertising for Autism

Dr. Claire Hughes-Lynch

www.professormother.com

• The Wyndham Hotel in Austin, TX recently started to offer “autism-friendly” rooms with sensory activities and an alarm on the door that will alert you when the door is opened.
• Colgate is sponsoring a Dental Tool Kit for children with autism.
• Dealing with a child’s Asperger’s is a main plot theme in the show Parenthood on NBC, the movie Adam and many, many other more main-stream media.
• Regal Cinemas offers “autism-friendly” movie showings in which it is OK to make noises, cry and wander around.
• Discovery Toys just started marketing a line of toys designed for children with autism.
• And of course, there are the various foods, technology and products specifically designed to educate, cure, support, and raise awareness of autism

I think we’ve just reached the tipping point of autism being used as a marketing tool to reach families. As Kristina Chew said, back in 2007, “At this rate, I’m anticipating the Autism Limited Edition vehicles of various cars.” With 1 in 110 children diagnosed with autism, marketers have realized that if autism is such an "epidemic," there is money to be made off of it.

Don’t misunderstand -- I think this is all great. I am much more likely to book a room at the Wyndham the next time I’m in Austin, even though it is more expensive than my typical hotel. I am thrilled that friends of mine can actually take their child to go and see Toy Story 3 and not have to wait to see it on DVD. I think it takes the stigma out of autism when I see lots of people wearing buttons, ribbons, necklaces, and hats with the various puzzle pieces on them. When I read that young professionals in New York are taking time to raise awareness for autism despite their childless state, I know that the awareness level has been raised. Awareness is the first step in the path to tolerance, to acceptance.

But it is a bit odd to have this family issue, this disease, this condition, this difference, this -- whatever autism is -- considered a niche for marketing purposes. I receive so many advertisements aimed at other aspects of my life. Do I want a credit card that says what college I graduated from? Do I want some face cream to firm up these middle-aged eyes of mine? Do I want to set up a special college savings fund? Do I want pet insurance? Do I want to attend a conference on teacher education? Do I want to shop the special flowers on sale at our local nursery? (No, maybe, yes, maybe, probably yes, probably not.)

It’s even more interesting, when you consider that some recent research indicates that the careers of mothers of children with autism suffer. In other words, we don’t have as much money to spend as our peers, but there’s new competition for how we spend it. Marketers have realized that we are an audience worthy of wooing.

It is clear that there is money to be made in autism. I applaud the public relations efforts of organizations such as Autism Speaks and others who have teamed with businesses, local and national, to raise awareness and to raise funds for research, for support, and for education. But I wonder about the pure-heartedness of the philanthropy efforts of organizations like Proctor and Gamble and the Wyndham when they are trying to encourage me to spend my (limited) money on their products instead of their competitors’. It’s a bit odd when autism becomes a demographic -- something as marketable as my age, my gender, my level of education, and where I live. It means that we, as autism families, have “arrived” in the public awareness when we are a target market.

For the reality is that autism does drive my purchasing choices. We pick that brand of clothing because the tags are sewn on the inside, and that brand of toilet paper because it’s the least scratchy. We don’t buy spaghetti sauce at all because I can’t clean up the stains. We buy a lot of Legos; we buy a lot of gum. We don’t own a vacuum cleaner because it’s too loud and we have a lot of pillows that are placed in strategic hidey-holes around the house. We buy iPods. We buy stuff that is soft, cozy, and sensually interesting -- but not too stimulating. We only shop at Walmart when we’re child-free because the shelves are stacked too high and the building echoes too much; Target is our family store of choice. We go swimming a lot. We do not go to pizza restaurants because of their noise level. We’re online a lot. We go through a lot of toothbrushes and we own a lot of DVDs. Oh yes, autism drives our choices of products, places we shop, and activities.

So, I’m talking to you, Honda/Ford/Toyota. My autism family wants back seats that can be cooled/heated and aren’t too scratchy or too slippery. We want seats that rock. We want seats that squeeze and massage and can be turned off at a moment’s notice. We want blinds that can be adjusted in various directions to block out the glare. We want iPod hookups at every seat. We want doors on the outside that can open without a lot of training, and doors on the inside that can't open at all without a button that parents can control. We want seat belts that can only be opened by the same parental control button. We want fabrics that can be wiped clean of any liquid or material -- bodily or otherwise. We want things for children to kick that don’t bother people in the front seats. We want a car that that doesn’t overload the senses- that doesn’t smell, is too loud or too bright. And oh yes, we want it to look like other cars -- as "typical" as possible. We want to be able to drive without autism riding along.

When you see the puzzle symbol on that special edition minivan/sedan/SUV, you let me know!

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Rediscovering “Donald T.”: John Donvan and Caren Zucker Steal a Story

Last Tuesday, John Donvan and Caren Zucker wrote a beautiful article for The Atlantic, entitled, “Autism’s First Child”, accompanied by a video packet that ran on Good Morning America and followed by a lengthy interview on NPR, about the first patient ever diagnosed with autism.  Donald Triplett.  These intrepid reporters, share how they searched and found this man who had been lost to history, and share with the world what a successful life he turned out to have.  Donald was raised in a small town, by parents who stuck by him despite the recommendation of professionals to institutionalize him, and alongside neighbors who loved, accepted and supported him.  He went to college, joined a fraternity, worked at a bank, drives a car and plays golf.  It is a story that, as a mother of an 8 year old boy with autism, gives me hope.

But the problem is that it is not their story, the whole story, and the most newsworthy part of the story.

You see, in 1943, Leo Kanner, a Johns Hopkins Child Psychologist, wrote a paper in which he described a rare disorder he found in 11 children.  The disorder became known as “Autism” and Kanner referred to the first case he found as “Donald T.”, a boy who was indeed lost to history.  And it was intrepid journalistic investigating that found that Donald was still alive and living well in Mississippi.  But it wasn’t ABC’s Donvan and Zucker who found him in 2010.  It was a UPI’s Dan Olmsted who found him in 2005.

That year, Olmsted began a series for UPI called, “The Age of Autism”, which investigated the relationship between vaccines and autism.   While reading Kanner’s paper to look for clues to any toxic exposures or physical symptoms the first children with autism may have had, Olmsted discovered that Kanner’s patient zero lived in an area where a water soluble form of mercury was first used in forestry.  Potentially clinically significant as mercury was the component in vaccines suspected by many of being a causal factor in autism.  So Dan Olmsted decided to try to find Donald T.  And he found him living a full life in Mississippi. 

While Kanner’s other cases had poor outcomes, Donald did not.  It turns out Donald received a medical treatment that Kanner never recorded when, as a boy, he fell victim to crippling juvenile arthritis. Donald was treated with gold salts and his brother reported that as a result, Donald not only recovered from the arthritis, but "The proclivity to excitability and extreme nervousness had all but cleared up”. 

Donald began to recover from “autism”.

This is highly relevant to the autism debate because gold has an extreme affinity for mercury and pulls it from the body.  It is also significant because arthritis links his “nervous disorder” to his autoimmune disorder.  It is historical evidence that the claims that parents have been making, that their children with autism had regressed after their mercury containing vaccines, and that treating them for their autoimmune symptoms makes their “autism” better, are on the money.

In 2005 Dan Olmsted published a series of articles on Donald, the most explosive being, “The Age of Autism: Case 1 Revisited”, which poured gasoline on the fiery debate on whether or not autism is a result of medical poisoning and is treatable. 

Everyone in the debate has known about Donald T. for five years, and although Olmsted did not publish his full name, it was known by many.  Googling – “Donald T.” autism – returns more than 8,000 pages.

Olmsted wrote the “Age of Autism” series until 2007, when he left UPI and started a blog called, “Age of Autism”, where thousands a day come to comment and debate.

This past Tuesday, Olmsted published a book, written with autism parent Mark Blaxill, called “The Age of Autism: Mercury, Medicine and a Manmade Epidemic”.  Chapter 6 is where you will find Donald Triplett, who decided to come out of his self-imposed anonymity to be interviewed in May of 2009 by Olmsted and Blaxill to expand on the public understanding of his story for the book.

As an autism blogger whose commentary on the initial Age of Autism series eventually became an installment in the series itself, I was given an advanced copy last May.  I was so floored by the book that I built them the web site for it, gratis.

Galley copies also went to The Atlantic, NPR and ABC, but the outlets didn’t tell Olmsted’s story, instead they carried Donvan and Zucker’s puff piece.  Given that Donvan is a correspondent on Nightline, that Zucker is a producer for ABC in New York as well as an autism parent, and that this team has been reporting on autism for over a decade, it is impossible to fathom that they would not have known about the book (and Olmsted’s reporting) if a little autism blogger, tucked away on the coast of Maine, had one in her hands last spring.

So imagine my shock as I watched the video of Donvan and Zucker entitled, “Finding Donald”, where they describe the process of tracking down who “Donald T.” actually was, pronounce to the world that Kanner’s first autism case was sill alive, write extensively about his life, and fail to mention that he is evidence that blanket government health care mandates and FDA corruption and/or incompetence may be causing widespread neurological and immune system damage to more than one percent of children in this country.

Donvan/Zucker hit three major outlets with their Donald T. revelation at the same time that the book Olmsted has been researching for six years hit the shelves.  Olmsted, his reporting, his book and Donald’s connection to the mercury/autoimmunity aspects of autism, which Donvan and Zucker even touched on in their article, are never mentioned. 

It raises the question, why would these news outlets make an end around “The Age of Autism: Mercury, Medicine and a Manmade Epidemic”, and try to bury this book?

Please catch my next article.  I tell the world about a talented new singer I have discovered.  She goes by the name of… get this…“Lady GaGa”.

Update:

NYT and WaPo publish fawning articles on The Atlantic piece.  Both NYT and WaPo also got advanced copies of The Age of Autism.

Update: Olmsted and Blaxill discuss the book on Fox Business:

Is Autism Man Made?



Is There a Vaccine-Autism Link?

Readmore »»

Looking Back, Looking Forward: What's Next for The Thinking Person's Guide to Autism

The Thinking Person's Guide to Autism (TPGA) started with a brainstorm in a California parking lot May 27, 2010. We published our first post 9 days later, on June 6:

The Thinking Person's Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed. We want to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy.

Think of us as a little bit of Snopes for the autism community -- trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families. Our attitude is cautionary yet loving -- we're honest, but we're not interested in negativity.

We -- the TPGA editors -- have been amazed and humbled by what our contributing writers have shared up until now. Our original plan was to publish a book in mid-summer from the contributed essays, but there was still so much in the pipeline we put the book publishing effort off until late fall.

Our first book will consist of a selection of essays already published on the site. The profits from the sale of that book will go to an autism charity to be named later (we have a several candidates, and the arm-wrestling over which will benefit continues).

But there is more to come from The Thinking Person's Guide to Autism. We have more essays and stories to publish online, and are continuing to solicit submissions. Here are a few of the subjects for which we are seeking submissions:

• The public image of autism is overwhelmingly WASP (White, Anglo-Saxon Protestant), while the reality is that autism is an equal opportunity condition. We plan to publish more essays from people of color on autism.
• For a number of reasons, the public image of autism is that it is a condition of childhood. In reality, it is a lifelong condition. We plan to publish more essays from adults with autism, and from caregivers to adults with autism from young adulthood to end of life.
• Living with autism: practical tips, how to, and mentoring.

Those are just a few of the topics we will continue to address. We want to hear, and publish, what you have to say. Here's what you have to do (more details at the submissions page):

• write an essay or story between 1,000 to 2,500 words (about four to ten printed pages).
• The work must be written in or translated into English.
• the work must be own - you must own the copyright
• email the work to thinkingautism@gmail.com
• the submission email subject line should read: SUBMISSION: [Title of Your Essay]

Thanks for your participation and support over the last four months, and we look forward to continuing the conversation in the months to come. Readmore »»

Why I Can't Breathe Tonight

Anonymous Special Needs Professional

Recently I read a post on The Thinking Person's Guide to Autism blog by a parent named Pia Prenevost. It was called An Open Letter to Special Needs Professionals. The title made me feel a bit guarded at first (as a special needs professional), because my experience with Ye Olde Internets is that "an open letter" usually warns that a negative letter, a warning to the recipient of the “Oh, no, you di’n’t” variety, is coming. But that was incorrect, because in reality the author had written a lovely, heartfelt post about the vulnerability a parent of a child with special needs feels. I encourage you to read it, it's beautiful. Here's an excerpt:

“I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.”

I appreciated the beauty and truth of her words. I will share it with parents I work with, happily. And at the same time it made me feel a bit hopeless as a professional, like there is really nothing I can do or say that might help a parent, even though I'm certain that wasn't the intent.

Later I came to find out that some teachers and therapists had commented on the post in anger. I read their responses with interest, because what they were writing had precious little to do with anything Ms. Prenevost had actually written; instead they had responded with their own raw emotion. It was as if they were arguing a completely different post or person, but their emotions were just as high.

Reading those comments from a few professionals left me short of breath. I have felt on the verge of a panic attack for the past two hours, and I've never had a panic attack. I couldn't concentrate on reading with my boys, or putting them to bed, I was so preoccupied.

Why? Where am I? I am, in my mind, back in a long-ago job, which was in a small, well-regarded public school district. A place where I was respected among my colleagues but clearly believed to be an idiot until proven capable to parents, assumed to know far less than my counterparts in private practice. Having come from a private practice job, I had suddenly been demoted to second-class citizen among my clients' parents because I was working in the schools. I can still see their suspicious expressions at my first Open House. It was an astonishing experience, and I never forget it when I walk into a public school meeting as a private therapist. Some therapists are better than others, whether they are in public school or private practice. "You get what you pay for" does not always apply.

Ninety-five percent of the parents I worked with were wonderful, once I had proved myself to them, and that didn't take long. I knew what I was doing. It didn't matter how significant their child's needs were, most of them were partners with us, their child's team. We were a very strong team. They were considerate, polite, and respectful. So were we. That didn't mean we always agreed, but we had the good relationship required to work things out when we didn't see eye-to-eye. 

But the other five percent? Well, tonight I'd say I suffered some trauma at the hands of that five percent, because more than ten years later I am short of breath just thinking about them. 

My colleagues and I were treated very badly. Certain of those parents visited me in bad dreams for as long as five years after I left that job. I was scoffed at in meetings by special education attorneys and expensive "experts" (put in quotes because the most frequent of these was later discredited) flown in from across the country (the school district having been required to pay airfare and hotel bills for these visits on behalf of families). My clinical insights were dismissed by that small group of parents, because to acknowledge that the school team had any insight whatsoever would weaken the "case."

The stress that was caused by a few families affected a great many of us: therapists, teacher, principal, administrators. It was out of hand and inappropriate. The kids didn’t benefit; after all, their parents and special educators were at odds and all adults in their lives were under a lot of stress. I lost sleep. Our work suffered. Good teachers left, and I left. After only three years. Just thinking about it all these years later raises my blood pressure. This is not such an unusual story. I was in an excellent school district.

High turnover in special education? Good people who can make it on their own, fleeing? Yep.

Sure, I could -- usually do -- blame my leaving on lack of administrative support. On high caseloads and insane amounts of paperwork and more than fifty 20-page IEPs per year. On never, ever, even for a minute, feeling like I was doing enough for anyone, or like there was enough funding for me to do my job appropriately. On sitting in a meeting and being grilled by frequently snarky attorneys who were audio taping us while my supervisor sat by not backing me up, pretending she didn't hear the argument while she filled out the IEP paperwork, because she was sick to death of the whole thing and for once the attention wasn't on her. Often we were left hanging in the breeze.

I don't usually admit to myself that the paranoid, fight-at-all-cost behaviors and lack of faith of a very small group of parents also drove me out. Because I love parents; I work well with parents. I am a parent. I get a lot of it. I'd rather pretend that it's only those bad therapists, the ones who are really incompetent, who get driven out. But they both did me in, the fighting parents and the unsupportive administration, and I left the public domain. I'm going to go out on a limb and suggest that I'd have ended up one of those angry commenters anonymously spewing frustration in the wrong places had I stayed in a broken system much longer.

In the past couple weeks, I have read two fascinating posts written by parents I respect greatly, about their initial misinterpretation of their children's teachers this year. Robert Rummel-Hudson writes an apology in a post called Mea Culpa" to the teacher he believes he initially misjudged. And today, another excellent writer (who goes by KAL) wrote a post called "Hello, Doom! Welcome Back to School" about the conclusions she leapt to – and then discovered she might be able to let go of a little bit - with her son's new special education teacher. 

I appreciated that both of these parents shared publicly the emotional roller coaster of a new school year and having to adjust to new professionals, and were willing to honestly share their realizations that maybe things are going to be okay at school after all. Parents have to advocate for their children and I know as well as anyone that many programs and professionals aren’t up to speed. It’s extremely frustrating for us all. But when parents come in armed and ready for things to be wrong and for professionals to be incompetent, the professionals are demeaned on day one and left to play defense in a game no one taught them in college and that no one will win.

Parents of kids with special needs are allowed to share their horror stories about professionals with each other, and they do. Professionals are named and, sometimes, vilified. Sometimes this is warranted; sometimes it is not. But either way, it gives parents a web of support when they share their stories in person, on blogs, on Twitter. This support is important and, I believe, ultimately a very good thing.  Therapists and other professionals may have co-workers they can go to for support, but rarely is there an opportunity to truly give each other the type of support they need to share their own horror stories. Professionals can't write, blog, or tweet about these situations from our point of view in any real sense, or even (legally) talk to our spouses about them. Try explaining one of those contentious IEP meetings to your spouse without using anyone's names or sharing any actual information. We end up with a lot of pent up frustration when we don't have a supportive administrator and time to deal with our emotions. It's more isolating than you'd think. We too need support. 

That's what I heard in the comments that appeared to many to be "off base" in Ms. Prenovost's post. They weren't responding to her words, not really; they were responding to her raw emotion with their own. If, when I worked in public schools, a parent had implored us to excuse them for being our “harshest critics,” I might have wanted to explode, too. But I doubt that Ms. Prenovost herself is her school staff’s harshest critic, because she sounds too self-aware to treat people the way the harshest critics actually do treat professionals. I may have felt bitter back then that I could not write such a letter, imploring greater understanding, too, without getting myself, and my school district, in trouble.  I get it.

We professionals may not physically take your children home with us, but in a lot of ways we take them -- and their parents -- home emotionally, every day and (apparently, in my case) years later. Both the joys and the stresses of the job affect our personal lives and our own family’s lives. As the new school year begins, I implore parents and professionals alike, on behalf of those who work in public schools, to please make an effort to give each other the benefit of the doubt, some support, a little credit, and as much gratitude as we can possibly muster.

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Media Becoming More Alert: Becky Estepp Schools Dr. Mark Segiel on Fox

This is why parents are not usually allowed on TV to debate docs. Because they expose the ignorance of the physicians whom the networks are trusting to bring them accurate health information.

And Becky was even too polite to point out that the study was in Pediatrics, not the New England Journal of Medicine.

Which one of these two people would you turn to with your vaccine questions?

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Vaccines Don't Cause Autism, and Guns Don't Kill People

A few days ago I posted a letter from HRSA responding to a media inquiry into the question of whether or not the Hannah Poling case showed that the government believed that vaccines caused autism.

[note: "encephalopathy" is a medical term for brain damage or a change in brain functioning.]

From: Bowman, David (HRSA) [mailto:DBowman@hrsa.gov]
Sent: Friday, February 20, 2009 5:22 PM
To: 'dkirby@nyc.rr.com'
Subject: HRSA Statement

David,

In response to your most recent inquiry, HRSA has the following
statement:

The government has never compensated, nor has it ever been ordered to
compensate, any case based on a determination that autism was actually
caused by vaccines. We have compensated cases in which children
exhibited an encephalopathy, or general brain disease. Encephalopathy
may be accompanied by a medical progression of an array of symptoms
including autistic behavior, autism, or seizures.

Some children who have been compensated for vaccine injuries may have
shown signs of autism before the decision to compensate, or may
ultimately end up with autism or autistic symptoms, but we do not track
cases on this basis.

Regards,

David Bowman
Office of Communications
Health Resources and Services Administration
301-443-3376

I have decided to play "If someone else said it", to show the sheer fraud at play in this statement, and of course, to ask the media if such poor quality lying and frank admissions of dereliction of duty would pass muster were it not coming from the government, and about such a sacred cow as childrens' vaccines.

From: Heston, Charlton(HRSA) [mailto:CHeston@hrsa.gov]
Sent: Friday, February 20, 2009 5:22 PM
To: 'citizen@usa.com'
Subject: HRSA Statement

Citizen,

In response to your most recent inquiry, HRSA has the following
statement:

The government has never compensated, nor has it ever been ordered to
compensate, any case based on a determination that death was actually
caused by gunshot. We have compensated cases in which people
exhibited a perforation, or general hole in the body. Perforation
may be accompanied by a medical progression of an array of symptoms
including bleeding, organ damage, or death.

Some people who have been compensated for gunshot injuries may have
shown signs of dying before the decision to compensate, or may
ultimately end up dead or with fatal symptoms, but we do not track
cases on this basis.

Regards,

Charlton Heston
Office of Communications
Gunshot Injury Compensation Program
Health Resources and Services Administration
301-443-3376

What Bowman is saying is that 'vaccines don't really cause autism, they cause brain damage that may cause autism. And we don't pay attention if it does.'

When this PR failure ran in 2009, no one else in the media picked up on it.

This week, two mainstream journalists have actually reported on the ridiculous position that the government has taken that 'vaccines don't "cause" autism, vaccines merely "result" in autism'. The first is Sharyl Attkisson at CBS, who wrote about it here and whose interest apparently was piqued enough for her to take a hard look at the "encephalopathy" shell game that HHS is playing which led to a follow up piece here: Autism, Vaccines and Brain Damage: What's in a Name? Atkisson is the latest journalist to figure out that just calling the autism cases in the VICP "encephalopathy" is their very transparent attempt to maintain some sort of denial of the widespread damage the vaccine program is doing.

She reports:

But there's a trade-off: occasionally, vaccines cause injury or death. Very rarely, patients are left with what's known as "encephalopathy", the medical term for brain damage.

In fact, CBS News has found nearly 1,300 cases in which vaccine-related brain damage has been compensated in court over the past 20 years.

1,300 hundred cases of vaccine brain damage paid by the government more than blows away the made up statistic parroted far and wide that serious vaccine damage is "ONE IN A MILLION". Because for that to be true, there would need to be 1,300,000,000 vaccinated people in the US. Which is one billion too many people.

And this 1,300 number ONLY includes brain damage, not other injuries or deaths. The total number of cases paid is 2,503. Let's say we have 300 million people vaccinated in this country in the last twenty years. That would mean that if the government has actually found, recognized and compensated every serious vaccine adverse reaction (and we know that ain't happening) then vaccine injury is about 1 in 120,000. Given that only about 1 percent of vaccine injuries are ever even reported, and that few people who fall seriously ill are ever told that their circumstance might be a vaccine reaction, if we factor that in, then we are looking at 1 in 12,000.

Keep in mind that 1 in 100 has autism, and 1 in 6 children have a developmental disability or delay, and those populations are not exactly scoured to see how many of them are vaccine injuries, and well... that is how you get a citizenry that stops believing the government.

So as there has been no research comparing vaccinated people to unvaccinated people, we can't really know the true rate of vaccine injury. My estimate is somewhere between 1 in 120,000 and 18% of the population. Lets hope someone with time and money can narrow that down for us someday.

The second journalist to have a light bulb pop in over her head, is Alisyn Camerota at Fox News, who points out the "fishy legal language" the government is using. Dr. Manny also seems to be coming to grips with the hard truth, because as I recall, years ago he was ruling out vaccines in autism.






Let's see if any other reporters are woken up by the VICP announcement of paying a child around twenty million dollars for "autism-like symptoms". (You know because people with autism have autism like symptoms, a man with no legs is also missing his big toe, I am five pounds overweight, my great, great, great grandfather currently has a mitochondrial disorder where his cells just don't make enough energy to properly power his brain, or any other small subset of a larger more dramatic condition that is both completely true and completely misleading to the listener who expects the government to tell them the truth. Did I mention that Hannah Poling has full syndrom, DSM diagnosed Autism, with a capitol "A"?)

And if you check that HRSA National Vaccine Injury Compensation Program Statistic Report page one more time, you will note that there is now a "1" in the "Compensable" column of the Autism Omnibus Proceedings. Of course HRSA has added an asterisk next to it with the following note:

"HHS has never concluded in any case that autism was caused by vaccination."

And now you can go back to the beginning of this article to remind yourself that HHS only compensates for bullet holes, not for bleeding or death.

Update:

I missed this one

Karen DeSoto at MSNBC also gets the wake up call and wants to know what the hell is going on.  She  notes that it is the government that has sealed the case when the Polings had requested it be open to the public so it could be of value in answering the questions we all have.

With all the attacks on them since the concession was made public, including people stalking their daughter, would they still be open to that? I don't think it matters. With out even mentioning the name Poling or one detail about Hannah, HHS could say, "Here is one process by which a seemingly neurotypical child can get autism from vaccination". Or if they want to maintain their BS legal word game cover, "This is a process by which a child with an undiagnosed mitochondrial disorder may develop autism like symptoms as a result of vaccination".




I hope that DeSoto follows up on this. She is right. Parents every where should be screaming WTH? at HHS.

Update:

Fox News follows up a week later. Becky Estepp of SafeMinds and TACA is on, and has to give Dr. Mark Siegel a lesson in vaccines.




Update:

This post is generating much traffic, so I will go ahead and add the news piece that really exposed how badly the government was lying to try to keep people from waking up to the fact that HHS has been paying these cases for almost twenty years. Julie "Vaccines Cause Autism and Do Not Cause Autism" Gerberding.


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