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.