Slightly unrelated, but check this out in the Washington Post. An advice columnist tells someone autism a medical problem and tells them where to look for help....AND SHE TELLS THEM THE RIGHT PLACES. Comments are rough though. Let's support her.

http://www.washingtonpost.com/wp-dyn/content/article/2009/08/20/AR2009082003828.html

To Vicki-

I read your post and just wanted to comment on some things you expressed-

"Still, I don't think moving this out of DSM is likely or even helpful at this time. My son has a combo of neuro-, psych-, and developmental diagnoses."

It will only be likely to move autism into more of a medical domain if people put it in motion. This means research showing the course of autism ie- what goes on inside the body.

Your sons combo of neuro-, psych-, and developmental diagnoses are just that- diagnoses. If one were to treat PANDAS as a strictly psych or neuro disorder, the patient would be on psychotropics and/or anti-convulsants when instead, PANDAS should be treated via the immune system -- IVIG, long/short term pulsed antibiotics, natural antibiotics(supplements) etc.

And this is my point about autism. Our kids don't sleep due to a myriad list of health issues - reflux, clostridia, strep, intestinal inflammation due to diet, viral (I'll include vaccine strain measles here), high histamine (allergies), and generally PAIN and INFLAMMATION. To not see it for what it really is would be to ignore these and instead prescribe clonidine, which would not solve, heal or genuinely cure the underlying illness.

We cannot nor should our kids be made to wait for the ignorance of generations of prior doctors and medical organizations to see the truth.

Moving this out of DSM is exactly what is needed if autism is to be finally examined as a medical, whole body illness that manifests in behavioral symptoms. Insurance companies could then pay for real treatments of immune system remedies instead of a script for an antidepressant (as anxiety/depression can also be viral/bacterial).

My daughter had the beginning signs of both Parkinsons and Tourettes 2 years ago. Both were acute and sudden onset, similar to PANDAS. Abnormal bacteria, both strep and clostridia, as well as yeast, caused this and both hugely debilitating conditions stopped due to eliminating the bacteria in the gut thus stopping the connection/damage to the brain.

Medical neglect comes to mind if the DSM is the sole tool to make a diagnosis and prognosis for autism.

Your statement- "Hooray for the psychiatrists who recognize this and WILL treat these 'complex' patients."......

does not have many people jumping up and down. Psychiatrists do not recognize the medical issues we are discussing, the treatments they prescribe are a band-aid on a festering infection, and our children are not 'complex' but genuinely ill.

Thank you. Maybe you are the one I've been waiting for...

As most of us would probably agree... we never would have believed any of this, until it happened to us. I am still surrounded by friends and family members who still think it is a DSM diagnosis. Words that came out of my mouth pre-autism to now... with all the knowledge WE have now is staggering... but I'm speaking to the choir.

Then... your child gets autism and depending on our personal situation, education, connections, attitude, talent, etc. A force is born e.g., Rimland (and his wife)... their prior professional and/or educational knowledge coupled with the experience of being ASD + NT parents, PLUS the inclination to change the world)... sets something in motion.

Who have I been secretly hoping becomes an ASD parent (not really, as I don't want another child to have this)? An influential Women Studies prof. with tons of grants, grad students, post docs, etc. THEN... the book I've been dreaming of will be written... "The History of Autism: an Anti-Mother's Intuition Diagnosis and the Paternalistic Medical Establishment".

How's that for a title?

Teressa? Maybe it's you. Sadly, it is not me... I do not have the research skills... But I'm waiting for it. You have your first customer right here.

Another daughter with the same history. Like Angela my oldest son born in 1991 didn't have the hep B at birth. No issues. Then in 1994 my daughter had the hep B at birth plus every other shot with thimerosal. Given the MMR shot when she was in the dr's office for ear infection-yes i let them inject her while she was sick. may as well do it while she's here they said. what did i know? now i have a 15 year old who still likes to watch dragon tales on pbs. never has had a friend and can't speak her native tongue. English is like a second language. Thanks doctors and hospitals and big pharma. even with all the info out there, pregnant women look at me and tell me they don't know what to believe with all the stuff on the internet. so they will give their babies the shots or let the doctors do it. Great that this is out here. nice to know we are not alone.

So then the Vasculitis Foundation's possible inclusion of autism as one of their autoimmune vascular diseases means nothing??????

Teresa,

It was so very, very painful to look at the time-line you prepared of what was done to your daughter. It rips out your heart.

It seems so clear, that it represents a recipe, concocted by the medical profession, on how to "break", and continue to "break" our children, until some of them are "broken".

Once the pediatrician has done his best at breaking, and utters the accepted word...autism...for what is in fact, "bio-medically broken children", he can now hand over conventional treatment to another allied profession ,psychiatry, that has no clue, no understanding, equally inept and dangerous at treating bio-medically broken children.

The DSM is nothing more than a play book insuring that psychiatry gets a piece of the action. At 1 in 58, they're not about to let go.

The only thing more broken than our children, is the institution of medicine which itself has been iatrogenically disfigured and broken by medical dogma and hubris.

It is well beyond time to get the diagnosis out of the behavioral realm. For those of us who medically treat our kids, it's almost no longer even relevant, except to get educational services in public schools. My son, while still developmentally disabled, technically doesn't even meet the criteria for autism anymore - after many years being medically treated, he is affectionate, the bizarre and ritualistic behaviors have dropped away, and the line about "not seeking to share" couldn't be further from a description of my son, who regularly seeks us out for companionship, praise, and shared activities. Nowhere in the current DSM description is there a trace of my daughter, who is still firmly on the autism spectrum medically, but after medical treatment, has dropped the behavioral and developmental aspects of her former PDD-NOS diagnosis.

It would also be helpful to have a distinction - the very serious, treatable, medical aspects of autism vs. whatever we mean when we refer to the ASD traits, gifts and hard wiring that many higher functioning ASD adults take pride in, and have a hard time with references to hearing talk about "curing."

Sadly, though, the idea of a day when insurance would cover the treatment my kids need sounds like nothing more than a cool futuristic science fiction movie.

finally.....thank you.......amen......

The timeline is almost identical to my son's, who is almost 15 now. It wasn't until my youngest (who is 22 months younger) had Hep A immunization and had a severe reaction to it, in and out of the hospital and then 6 months later, contracted Hep A from a child at daycare, that I began to notice a connection. Neither one of my boys have had any other immunization since then.

My oldest has Asperger's syndrome (high functioning form of autism) and Tourette's syndrome, but has improved dramatically over the years.

My youngest has a few autistic "traits" but can function like that of a neurotypical (normal) child.

Both of them are in much better health and rarely get sick now; not even so much as a sore throat.

I do not trust doctors much at all. I always follow my "mother's instinct" and I let the doctors know where I stand from the very beginning.

We, the parents, were entrusted with our children's care; to make sure they are nurtured and safe, so it's our responsibility to speak up and do what we think is best for our children.

There are many misunderstood special needs in the world today and they all have several "speculations" as to what caused them. At http://www.OurSpecialGifts.org we are in the process of including what doctors say is the reason, as well as what new research and "personal discoveries" are finding now.

Once again Teresa has hit the nail on the head. Who would fail to be moved by that chronology of her daughter's myriad ailments?

Yesterday I came across a typeset bedtime checklist we'd mounted in my toddler son's bedroom years ago. Right underneath "bath" and "diaper" was "medicine."

I received a newsletter last week from the Vasculitis Foundation. The very first article was "Evidence Suggests a Pathogenic Role of brain autoimmunity in Central Nervous system Diseases"

First of all kawasaki's (which my daughter had at 2 years old and is a inflammtory disease the involves the heart) is one of the 15 diseases the are included under Vasculitis.

This article stated that "Alzheimer's disease, Tourette's Syndrom, Obsessive-compulisive disorder, and a huge population of autism spectrum disorders has been found to have autioimmuinity to brain."

It goes on to state that the immune system is attacking the brain in a hightly select way. They are (at least this is my understanding) that they are going to make this number 16 in thier family of diseases and they are going to call it NeuroAutoImmuity".

The article goes on to say that the causes of autoimmune diseases is not well known but the common belief is they are triggered by envionmental factors, particular viruses; for example human herpeis virus-6 in multiple sclerosis, the measle virus in autism, and herpes simplex virus in Alzheimer's.

The article also said that "Interferon-gamma and interleukin -12 the two proteins of the immuen system that initiate autoimmunity, are also activated in patients with brain diseases.

they also said that "many patients also show improvement when administered with immunotherapy using intravenous immunoglobin, plasmapheresis, trasfer factor, and other immune modulating agents."

I tried to contact the vasculitis foundation, they have always been super nice to me in the past. They did e-mail me back and told me that the main supervisors were on vacation, but would be back in the middle of this week, and could better answer my questions.

So what do you think? Does this mean it has moved from a Kanner domain to a medical domain?

This story mirrors my own son now 16 and non verbal. The thing that astounded me was at the age of 9 he started having seizures when he never had them before even though he was damaged that day , that night of the MMR back in March 94. God give us strength to make sure that our children are not forgotten or brushed under the carpet.

It was in 1992 that I received the Hep-B vaccination series. It had been mandated by OSHA for first repsonders (I am in law enforcement) because of possible exposure to blood-borne pathogens at crime scenes, car accidents, etc. Sounded like a good idea for me, but newborns will not be exposed to those things.

In 2005, my pediatrician had no answer as to why in the world would anyone want to give a newborn such a heavy-duty shot series. At least he didn't argue about it. But my son did get every other shot until he got the MMR and varicella vaccines at 15 months and stopped talking. Now he's slowly recovering three years later.

Adding insult to vaccine injury is that it was done for the betterment of his health! Medicine has hardly advanced from the days when barber-surgeons practiced bloodletting. Maybe the psychiatrists will surprise us, but I doubt it.

I believe arguments could be made that most every diagnosis behaviorally defined in the DSM has underlying biolgical etiologies. Including a diagnosis in the DSM essentially absolves insurance companies and physicians (other than psychiatrists) of any responsibility for improving a patient's outcome. This sends everyone down the road of psychotropics, therapies, etc. that are almost always inadequate, often inappropiate and even dangerous. Meanwhile, the underlying reasons for these behaviors go untreated. This goes way beyond autism spectrum disorders. There's a medical industrial complex of sorts whose success relies on categorizing illness according to the most profitable course of treatment. If we in the autism community are guilty of one thing, it is in believing we are the first or only diagnosis where this has happened. We are apparently just the first to realize it.

Teresa you rock!! Great article!

What was that sound? Oh, it was thousands of parents yelling YES!!!! while recounting Meg's medical history because it so closely resembeled their own childrens history. How can it be that we all share the same story, yet nothing is done about it?
Why are so many children repeating this story over and over again? History will look at these atrocities committed by the mainstream medical community and lump them with the other medical blunders of the past. But these blunders haven't taken their place in history yet because they are still alive and well this very moment.

My son is not ASD, but thanks to the autism parents (who lit the way) we have been able to heal him of almost non-stop illness, allergy and immunity problems.

I found a picture of my son taken the day he left the hospital after he was born. He had a terrible rash - which at the time was dismissed as "mother's hormones." He also had a lot of trouble regulating his body temperature.

Yes, he had the hepB in the hosptial after birth. His brother (three years older) didn't start the hepB until he was 4 months old. Surprise, surprise - older brother has ALWAYS been so much healthier.

What changed in the three years between their births? Did I contract HepB - no. Was there a huge outbreak of HepB? No. So why did my son have to have this vaccine hours from being born? WHY? All I ever heard when my kids were little was how important it was - for their immune systems to mature - to breast feed, keep them away from strangers, etc. Yet - it's supposedly perfectly safe to inject the HepB vax into a newborn baby. I honestly don't remember them even asking for my consent. But what new mom would? In the best of circumstances, having a baby is fairly traumatic.

I just don't buy this crap anymore. And I will never again trust Big Pharma or their shills the government.

THANK YOU to all the autism parents who illuminated these issues for me. You have helped more children than you know - not just the asd ones.

Absolutely brilliant analysis Teresa.

I think you're right that this is a big hurdle in getting appropriate treatments:
"our kids are medically sick, not mentally ill, and that should be the focus of research regarding causation and treatments of autism."

And this statement by Kanner about "postencephalitic behavior disorder" gave me chills:
"because of a febrile illness at 13 months, her increasing difficulties were interpreted as possible postencephalitic behavior disorder".

Teresa if ever the term "Rescue Angel" was defined you would be listed. Very few people have hearts big enough to share love to the newbies after all we go through. Thank you for being a great teacher, mentor, model, and friend. We will continue to learn, grow, fight and shout ... How much Longer, America How much longer... Thanks again.