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Autism and the DSM: Time for a Change?

Out of touch By Teresa Conrick

There are some signs of autism that are universally known, like communication and social issues but then there are the ones that we have learned were signs before the word "autism" was placed on our radar.  These are the ones that we parents all nod about, that we wonder how the doctor didn't become concerned about, the ones we now know to be the symptoms of immune dysfunction, inflammatory cycling and ultimately, autism.  Keep in mind that autism is a DSM, behavioral diagnosis based on language and social impairment as well as restricted, repetitive and stereotyped patterns of behavior, interests and activities.  So why are these other medical signs not well known?
 
I have been thinking about this for quite awhile for two reasons.  First, I have a personal interest in that my daughter is trapped in a body that is sick yet she is called "autistic." Insurance companies do not recognize some of the treatments that are helping restore health and normal immune functioning to children with an autism diagnosis and for many of us the treatments that could lessen their layers of immune dysfunction and possibly cure them are out of our reach financially. A perfect and recent example is this beautiful girl and her remarkable new ability to speak words after being non-verbal for over 8 years.
(See "Hopeism" Here.)

She is showing us that biomedical interventions with a focus on immune healing is key to the medical needs of these children with an autism diagnosis.
 
Another reason for my focus is that a group of doctors, many who are psychiatrists with an interest in keeping our children in the DSM domain, is gathering to again define the mental illnesses of current day. This reminded me of Dr. Leo Kanner and his thoughts on the DSM when he did his 1971 follow up report on the original eleven autistic children from his 1943 paper, "Autistic Disturbance of Affective Contact."  Dr. Kanner said, "the framers of the 1968 Diagnostic and Statistical Manual of Mental Disorders (DSM II) adapted by the American Psychiatric Association.....a widely used code system in which autism is not included, and children so afflicted are offered item 295.80 ("Schizophrenia, childhood type") as the only available legitimate port of entry."  


So here we are in 2009 with a similar dilemma.  We now have the "autism" word that Dr. Kanner felt was necessary but the paradigm has shifted, or should we say the "port of entry" has changed.  Autism is no longer considered a true mental illness but a whole body medical illness often affecting both gut and brain.  The behavioral manifestations, speech, social and stereotyped patterns are often traced to the true nature of this debilitating illness:  inflammation, oxidative stress, and immune dysfunction yet Kanner, the American Psychiatric Association, and subsequently the DSM have "owned" autism since its 1930's appearance.
 
This brings me to the faded piece of paper I had found recently in a pile of lab reports done on Megan starting in 2000.  It was a late night time-line of her health history that I had copied down from her medical chart then as we had just exited the pediatrician that was her main doctor since birth.  I am including it here as it is a common thread in all of our children that the DSM committee needs to know : our kids are medically sick, not mentally ill, and that should be the focus of research regarding causation and treatments of autism. 
 
Here then is a look backwards, a painful window of time when my daughter's health was telling us that something very bad was happening. These are the notes written by the doctor and staff for the office visits we had. My comments are in parentheses.
 
3/2/93 -   Birth - Hep B at hospital (Thimerosal was in full concentration in all but the live virus vaccines given to Megan)
3/26/93  -   VACCINES
5/21/93  -   VACCINES
7/10/93  -   VACCINES
9/10/93  -   VACCINES
10/22/93 -  VACCINES
12/7/93 -    Diaper rash (YEAST) for 6 weeks - ear infection - antibiotics
12/28/93 -  Ear infection - antibiotics
1/17/94  -   Ear infection -antibiotics
3/21/94  -   Virus - antibiotics (  This was a routine practice then - antibiotics as miracle treatment for ALL illnesses)
5/11/94  -   Virus - antibiotics ( Again, this is so wrong!)
6/3/94    -   Loose stool - rash - ear infection- antibiotics
6/18/94  -   VACCINES (Including MMR)
6/28/94  -   Fever-  rash on body - ear infection - antibiotics
7/11/94  -   Ear infection - antibiotics
8/22/94  -   On vacation in WI and became sick.  Not happy - crying - lethargic - Dr. there unsure of the cause.
9/9/94   -    Rash - loose stools - VACCINES  (Yes, her Dad didn't know any better and agreed even though she was obviously ill)
10/17/94  - Vomiting  -  diarrhea
11/1/94   -  103 fever -  virus
5/23/95  -   Irritable - nosebleeds
10/9/95  -   Not talking - PDD dx - to specialist
11/27/95  - Temp. - not eating/sleeping - ear infection - antibiotics 
12/19/95  -  103 fever - crying for 2 days - ear infection - antibiotics
12/21/95  - Waking at night - crying - acute bowel - Donnagel
12/28/95  -  Re-check - right ot media - antibiotics
1/25/96   -   Ear infection - antibiotics  (Is anyone else getting sick at the amount of antibiotics dispensed and how obviously ineffective they were!?)
2/8/96   - Re-check - unhappy- crying - nosebleeds - antibiotics - nosespray
2/29/96  -    Check up - nosebleeds x5 - iron for anemia (That's the pattern - not to figure out WHY but give her iron as she is loosing blood often!)
3/26/96  -    104 Fever - Zithromax
4/8/96    -    Re-check - pulling on ears but no ot media
4/23/96  -    Waking at night - no ot media - "sleep problems"  (No - they are not seeing the pain that Meg is in and the continual cycle of illness!!)
6/10/96  -    2x nosebleeds - 102 temp - nose spray  - antibiotics
6/26/96  -    Fever - antibiotics
9/3/96  -   Poor appetite - antibiotics
10/23/96  -  Pharyngitis - severe - temp - antibiotics
1/4/97 -  Congestion - cough - antibiotics
3/4/97 -  Pulling on ears - Claritin    (Finally ! A step away from the over used and abused antibiotics)
3/10/97   -  VACCINE
5/9/97 -  Rash on face  - allergy?
5/13/97   -  Swollen finger -  antibiotics 
7/29/97   -  Not eating well - nothing found (I needed medical help for Meg and her "autism" diagnosis was being used as "the reason" she was not eating. Terrible!)
8/7/97   - Rash on back - irritable 
9/8/97   - Fever 3-4 days - rash on face - virus
3/19/98    - Diarrhea/vomiting  x 10 days - fever on/off - antibiotics

And this continued to go on until late into 2000 when I first read about the research showing a connection to autism and MMR, thimerosal/vaccines, and immune issues so I left the practice of these two doctors and began the journey to heal my then 7 year-old daughter.  Interestingly, immune issues in autism vary from being sick often or rarely being sick but the research is lacking. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection) is now seen as a medical illness manifested into tics and obsessive compulsive behaviors yet our children's labs showing similar yet unique viral, bacterial, and fungal patterns are disregarded and their illness described only in behaviors.  How much longer is autism to be ignored as a disorder with roots in the immune system?
 
As Dan has doggedly and brilliantly reported, Kanner wrote about these medical issues yet he did not make the connection from child to child.  He didn't see a pattern when he wrote: "large tonsils and adenoids", "she was tube-fed five times daily up to 1 year of age", "vomited all food from birth through the third month", "difficulty in feeding.", "a long story of trying to get food down.", "frequent hospitalization because of the feeding problem", "repeated colds and otitis media", and an eerily familiar comment that describes many of our children after a vaccine or a series of vaccines - "because of a febrile illness at 13 months, her increasing difficulties were interpreted as possible postencephalitic behavior disorder".
 
"Postencephalitic behavior disorder" sounds not much different from what we are now seeing in our children: toxic encephalopathy, immune dysfunction, mitochondria dysfunction, thus - inflammation in gut and brain.  I can forgive Leo Kanner for missing this as it was so new and for his insistence on autism being "the word" used in the DSM but I think the current DSM and those who are writing about autism need to really examine all of the medical facts about autism as they will be responsible for repeating this historical blunder : classifying autism as solely a mental disorder which has taken the focus off the genuine medical and vaccine issues and thus preventing true and helpful medical interventions.
 
Teresa Conrick has two beautiful daughters. When she is not teaching, she is researching the biomedical implications of autism, both past and present.
 
 

Comments

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DSM Exposed

This is a timely article:

Inside the DSM
The Drug Barons' Campaign to Make Us All Crazy
August 20, 2009

http://www.counterpunch.org/tsao08202009.html

Jack R.

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

Laureen Forman

The most striking thing about the history is the antibiotics - my son is not vaccine injured (my hubby was good enough to convince me not to) but he was on antibiotics from birth due to UPJ obstruction. I was very good at making sure he got them (eventually Septra which is a folic acid depleter - of course, the docs never told me that - I learned that much later) and he's a yeast kid and other things - but never really sick ever. I stopped them cold turkey one day because I was just done - and ya know what - he didn't get even sicker and the kidney was okay.

I'm so sorry to hear of her issues and wish I could take it all away. My heart just bleeds for stories like these - what is wrong with our medical system of throwing things at something that they don't even really know?? It's a virus and virus' can't be treated - hmmmm......really???

I now know why it's called a doctors practice - I don't want them practicing anything on my kids. I can do a much better job - naturally,,,,,,

Teresa Conrick

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.

Vicki Hill

Your log of pediatric records almost exactly matches that of my son - but mine started in 1987. 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. Neurologists are scared/flummoxed by kids like ours. I've lost count of the number of neuro's who have told me it was a psych problem, or that they wished they could help me, but they couldn't...but I've found that the psychiatrists, while agreeing there was a clear neuro problem, were more than willing to work with me and actually treat - and help - my son.

Someone mentioned Tourette - yes, it is definitely neurological in nature, but yes, it is in the DSM and some of the finest docs specializing in Tourette are psychiatrists. The line between neurology and psychiatry is fuzzy; reality is that most, if not all, 'psychiatric' diagnoses have a neurological underpinning. Hooray for the psychiatrists who recognize this and WILL treat these 'complex' patients.

henderson

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.

Eileen Nicole Simon

Thank you Teresa for the data! It would be of interest to obtain the data that other parents also collected. Three articles by Alex F. Robertson on Errors in Perinatology should be read by all parents, and they are free at:
http://www.nature.com/jp/journal/v23/n1/abs/7210842a.html
http://www.nature.com/jp/journal/v23/n2/abs/7210843a.html
http://www.nature.com/jp/journal/v23/n3/abs/7210873a.html

The error of vitamin K is provided in the first article, and antibiotic errors in the second.

Felicia

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.

Jill E

Indeed, why is autism included in the DSM when it now almost universally recognized as a neurological problem, and of course not psychological or psychiatric in nature? If your kid had epilepsy, Tourette's, CP, or neurofibromatosis, would you take your kid to a psychologist or psychiatrist for treatment? Of course not. So why are we doing this with our ASD kids?

We will only see real progress in ASD treatment after we eliminate the shrinks from the field.

Benedetta Stilwell

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

Milco

Hej, as a dokter from Sweden and father of an autistic boy with all the auto immune like reactions I want to make a comment:

It would be of the greatest importance if we could label autism and ASD NOT solely as a DSM mental disorder.
DSM is nothing special but a western model of a group of psychiatrists who make a diagnosis statistical manual.
Autism and ASD should be placed in an internal medicine and neurological medicine book too. This would make a huge difference in the perception too and the research and money flow directions.
So many parents I have seen or spoken too telling about a relation with vaccination, anitbiotics,inflammatory responses,allergic reactions,post encephalitis or meningitis syndromes they describe. And yes me myself too as a dokter talking about my own son.

We or they or the world cannot ignore this, why is their so much trouble?: if we ONLY would listen what parents tell!
Rule number 1: listen and believe to what a parent tells you...in a timeline and not preoccupied because of the mental behaviour in a already placed corner: autism so DSM their it fits!

Iatrogen...means harmed by the system....

How much damage is their in autism...by the system we live in...You want a H1N1 vaccination for your child, an untested vaccin on children? You want Tamiflu and Relenza for your child, with heavy side effects and sudden deaths.

And the most tragic is.....it is continuing growing...more and more autism and ASD...
because we see and diagnose better.....no way:if we cannot even listen to parents.....

Look at the medical file of MEGAN! How examplary it can bee...look at the antibiotics....how about normal gastrointestinal flora??

When are we all start to listen first!

If you ask me what is autism or ASD is my asnwer is the following:

It is a complex syndrome with diverse expressions related to an autoimmune response of the body on the brain or the bloodbrain barrier with mental and behavioural consequences aggrevated or luxated by vaccinations, antibiotics, toxicology, bacteriae( f.e.streptococ, Sint Vitus), vurnerable basal ganglia of the brain, genetic predisposition or mutations and lymfnodic and or gastroenteral symptoms.

It is the best I personally can make of this mystery of our children but it is NOT solely a categorized mental disorder.

Greetings
Milco MD from Sweden

michael framson

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.

Gatogorra

This was a great article and the points about Kanner are really interesting. He meant well I suppose. I hadn't really been aware of how much evidence he was misinterpreting re the physical disorders of these children. I think he was trying to counter the genes-only view of things which was so dangerous at the time, but he missed on what in the "environment" was causing the problem. I know he publically fought with a doctor (Foster Kennedy) who called for the "mercy killings" of disabled children.

For psychiatry to take autism out of the DSM would be to admit that much of what's in it is garbage or misinformed as well. Biopsychiatry never catches and releases. To the degree that the profession has become a pseudoscience, it can never find itself scientifically wrong.

Amy

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.

Zeph

American Psychiatric Association publishes the DSM. Psychiatrist are "Medical Prescribing Doctors". You believe Big Pharma is gonna go for a biological cause? HAHAHAHAHAHAHAHAHAHAHAHAHAHAH

The chair for the DSM-V committee=
Darrel A. Regier, M.D., M.P.H.. In 2006, he was named Vice-Chair of the DSM-V Task Force to work jointly with the Task Force Chair, Dr. David Kupfer.

anyone got the contact info?

Jacey Capurso

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

Jessica

I also went through the horror of actually looking at my son's vaccine records and splicing in his health issues much like you have done. I cried for days once I saw the timeline of his deteriorating health, the hard-as-rocks stool, the skin rashes, the not eating, not sleeping, just being generally SICK - and then I saw the ped's note that he actually was having a "SHOT REACTION" and never thought it necessary to mention this to me.

And now, we are going to start injecting babies and pregnant women with some H1N1 experimental vaccine that clearly states "thimerosal" on the label. Hey, at least now they can't claim all the thimerosal is "out of childhood vaccines," like it really ever was to begin with.

Shame on all you "doctors" who are so blind, arrogant and ignorant that an entire generation of children are being destroyed on your watch.

emmismee

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.

curtis

Nove Science Now....

....casually mentioned that this kid "seemed normal" until 18 months of age and then a "mysterious genetic effect" kicked in and he developed signs of autism.


It is probably only a matter of time until the AAP will be saying.... "We are sorry, your child has now developed Downs Syndrome after 18 months, it is a new, sudden genetic thing going around..."

The government, big pharma, and the media is all one organization, not three as it should be, they will follow the money to wherever they can get it.

nhokkanen

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."

K Fuller Yuba City

What are physicians thinking?
Our son's story is so like your child.
22 rounds of antibiotics in the first 2 years of life. Right through all of the immunizations.
I was not educated enough at the time to understand what the hell a Hep B shot would be preventing.
Who was supposed to be the educator? I never begged for antibiotics, I just trusted that he needed them.

Benedetta Stilwell

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?

ct teacher

Has anyone else ever wondered about the safety of the vitamin K shot administered at birth, and if it is really necessary? I have read the explanation put forth by the medical community, but I wonder what else it contains besides vit k. If it is so necessary, wouldn't it be less traumatic for a newborn to get vitamin drops? Also, natural vs synthetic might make a difference in the way it is metabolized. So many babies now get jaundice, it seems there might be a connection. Also, no one seems to question the silver nitrate drops in the eyes. Could they have a deleterious effect on the eyes? Is there a better way to protect their eyes? The general public has for too long accepted standard medical procedures without question.

Joan Campbell

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.

Jimsomnia

One more vote here for "Hey, that's exactly like my son's story!" Really appreciate the mention of constant over-use of antibiotics. This is a frequently overlooked part of what I hear from almost everyone I talk to who has a child like ours. One more reason the Pharma people won't admit biomed treatments work - any successful treatment tends to indicate what caused the condition, and from that point on we're in the realm of class action suits and profits. Of course the patriot act protects vaccine manufacturers from lawsuits (ya never know, autism might be a terrorist plot, thank you Bush and Cheney).

Just thought I'd mention that a few weeks ago on "NOVA Science Now" on PBS they did a story on autism-genetic research and they casually mentioned that this kid "seemed normal" until 18 months of age and then a "mysterious genetic effect" kicked in and he developed signs of autism. So this is the next thing we'll be hearing, that even when there's an obvious life changing environmental event, it will still be explained as a "mysterious" genetic thing.

It's mysterious because there isn't the slightest shred of science to back it up, it's just a wild guess. The problem is that millions of people who saw that accept it as fact because it was on a science show on PBS.

Frank for Aidan

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.

Connor's Mom

Teresa,

Thank you for sharing a saga similar to mine. Angela, for what its worth, I don't remember giving consent to have my son injected with Hep B either.

Leslie P.

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.

Roger Kulp

I am glad to see AoA addressing PANDAS.From what I have read,and discussions I have had on the web,there its some debate,as to whether it is PANDAS or PITAND (Paediatric Infection-triggered Autoimmune Neuropsychiatric Disorder) that causes autism.

http://www.webpediatrics.com/pandas.html

What I think are interesting are those kids who are nonverbal,and obviously severely effected,who don't have bowel disease,are never sick,yet have all sorts of biological signs of an immune system that isn't working right.This is what I have a hard time accepting,and if it's hard for me,it must be even harder for a mainstream doctor or researcher.

Like Teresa's daughter,I had a lot of issues with infection as a child,that were as bad or worse.I never outgrew them,as my doctor as a child insisted I would.Meningitis and pneumonia that put me in the hospital,the first time at five months,rheumatic fever, severe inner ear infections in my teens,that caused me to lose almost half of my teeth,after they spread to my mouth.I was on antibiotics myself,for the better part of twelve years, when my chronic lung infection, and recurring pneumonia was at its worst.My doctor just switched me to a new one,every few months, rather than try to figure out why I had these problems.I think this is why,when my meningitis came back in 2007,it was drug resistant,and led to a severe regression that lasted a year and a half.

From what I can see observing the comments here,over a period of months,there is a wide range of severity from allergies to full blown complexes that resemble pediatric AIDS. For a lot us the medical issues are as bad or worse than the autism itself.And it is not "comorbid" to use the NDs favorite catch phrase for everything.Infection and fever have a direct,and measurable relation to regression.It is simple cause and effect.

I don't think in my case,it's purely immune, or purely mitochondrial,and I think this this is pretty common for people on the spectrum. As anybody who has gone through this with a good DAN! doctor knows,the number of tests it takes to get to the bottom of this is staggering.You can easily see why most doctors would not want to bother,if the primary diagnosis is a "psychiatric" one,like autism.

kathleen

Teresa you rock!! Great article!

randy

Similar timeline here - lots of "bumps" (ongoing infections, rashes) that coincided with shots, the usual mix of antibiotics, etc. etc.

Then the additional Dr's comments straight from his chart:
pre-MMR - "no concerns"
post-MMR - "is this child autistic?"

Every parent should go thru this exercise - looking at your own child's timeline, then seeing it overlay with a thousand others. It is heartbreaking, but could be game-changing.

Thank you Teresa for sharing your notes.

Dan's Mom - great to hear about your (older) son making gains...

Sylvia

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.

Allison

Dan's Mom, Thank you for posting your story! How wonderful he is gaining language at 19! My 9 year old often comes up with his unprompted appropriately used sentences/words from TV. Congratulations! You should write a piece about his progress and your methods, so many are wishing to hear about progress in older kids. Congrats!

Teresa, Excellent visual to "show" how sick our kids are and were during regression periods!! I think one of the terms we need to start pulling out of Kanner's stuff is "postencephalitic behavior disorder". A much better description of autism. I really hope those creating and deciding on a new "DSM" description read this. They are deciding the future labeling of autism and we need to have our voices heard, noted and included in this new criteria as to what autism really is. A Medical not a Mental condition. Great Job Teresa!

Angela

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.

Maurine Meleck

This reads like the story of my grandson and I am sure so many others. The history of ear infections, antibiotics, RSV, pneumonia to name a few illnesses he had all before the age of one.
Thanks for this post Teresa. They are always so good and informative
Maurine
PS I understand the new DSM is going to be delayed.

CM

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".

Bob Moffitt

Don't know where I read it...or...if this applies to Theresa's column...but

Someone once said: "Psychiatry is to medicine...what astrology is to astronomy".

Tanners Dad

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.

Dan's Mom

Antibiotics for a swollen finger and poor appetite? My son was prescribed antibiotics for everything also. Sometimes I was given a prescription just in case he pulled at his ear.It has been a long time coming but he started speaking again at the age of 19. He started by repeating TV - thanks to Clifford he says "One day" from the Charlie Rose show he says "O bama" he will answer your questions by saying "OK" when he wants you to go away he says "away". Everyday a new words shows up.The doctor who gave him the diagnosis of autism said he would never speak again and to make life easier accept him as is. I questioned his vaccines being the cause and he said vaccines don't cause issues like my son's. "Pure genetics" was the issue. He was a healthy happy infant who changed with his MMR. With lots of research, on going biomedical interventions,and some diet changes, he is getting healthier. Thank god I didn't listen to the doctor that day.

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