“SINCE 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far that each case merits—and, I hope will eventually receive—a detailed consideration of its fascinating peculiarities...."
That famous sentence from Dr. Leo Kanner has been ignored for far too long. We, here at Age of Autism, believe that it is the first clue in solving the epidemic cases of autism today.
Kanner's terminology -- "fascinating peculiarities" -- has been the main focus of autism for seven decades. Because he was a psychiatrist, autism was categorized as a mental disorder. Since then, autism has become the focus of study after study, most about as far away from its true origin as possible. I dare say that we are now – finally -- seeing the paradigm turning a bit faster. It was just last year that I reported French doctors using antibiotics to treat autism, with some being cured of their symptoms:
“…successive antibiotic treatments with accompanying medications induced in 60% of cases a significant improvement -- sometimes even a complete resolution of symptoms. These children can now lead a normal school and family life."
Autism is creeping out of Psychiatry and instead, on its way to its correct destination – a NeuroImmune disease. Its “fascinating peculiarities,” are actually turning out to be a domino effect of a dysfunctional immune system. The triad of symptoms that have historically described autism are actually the end result of an abnormal immune system , not an abnormal child - difficulty with social interactions.
- difficulty with language and other forms of communication, like gesturing or using facial expressions.
- unusual, restricted or repetitive behaviors (also called “stereotyped” behaviors or stereotypies), which can involve either interests or actions.
For the many thousands of parents, like myself, who have witnessed their child regress into autism, this is helpful and hopeful. Many saw dramatic changes after vaccinations: rashes, gastrointestinal distress, vomiting, chronic sore throats, ear infections, and fevers. Subtle or acute behaviors then emerged and those behaviors unfortunately became the focus. That is beginning to change.
Autism Speaks seems to now be funding a study on immunotherapies and autism. This is a direct focus on the idea of immune dysfunction and autism - Anti-Neuronal Autoantibodies in PANDAS and Autism Spectrum Disorders
“Pediatric neuropsychiatric and movement disorders affect millions of children each year with devastating consequences on families. Work done over the past 12+ years has focused on understanding how infections and autoantibody responses affect the brain. The investigators have found that neuropsychiatric and movement disorders such as pediatric autoimmune neuropsychiatric disorder associated with streptococci (PANDAS) are associated with a group of autoantibodies which may be elevated during disease symptoms and may signal neuronal cells in the brain. This project explores the hypothesis that autism spectrum disorders (ASD) are associated in some instances with PANDAS symptoms where the two diseases may be co-morbid…….This research has the potential to identify patients with autism who would benefit from immunotherapies or other PANDAS treatments.”
I have been writing about both autism and PANDAS as my own daughter, diagnosed with autism in 1995, is affected with chronic infections and now an autoimmune diagnosis. I keep meeting more and more families who have children with autism, PANDAS or both.
Interesting yet oddly enough, Thomas Insel, the head of NIMH and also of the IACC, The Interagency Autism Coordinating Committee , has only touched once in 7 years on infection , immune issues and autism 2010 – “Do infectious agents influence the development of autism, anxiety, or mood disorders? This remains a frontier area for NIMH research. The increasing evidence linking strep infection to OCD in children suggests that microbiomics may prove an important research area for understanding and treating mental disorders.”
“Because patients with autism display IgG or IgG subclass deficiency, the presence of autoantibodies, and an increased production of proinflammatory cytokines and chemokines, and IVIG is used as a replacement therapy and plays an important immunomodulatory role in autoantibody production and proinflammatory chemokine and cytokine secretion, a good rationale exists for the use of IVIG in at least a subset of patients with autism.”
What is IVIG? According to Wiki “Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.”
This paper describes the many uses of IVIG “The clinical use of intravenous immunoglobulin (IVIg) has expanded beyond its traditional place in the treatment of patients with primary immunodeficiencies. Due to its multiple anti-inflammatory and immunomodulatory properties, IVIg is used successfully in a wide range of autoimmune and inflammatory conditions.”
I decided to check with some families that I know who have used IVIG for their children, who have an autism diagnosis - “... Our son has Autism/PDD NOS, our girls do not and all 3 of our kids have different degrees of PANS/PANDAS. The two older ones had severe immune insufficiency…Our children were very well maintained by IVIG, it supported their immune system and allowed them to fight infection and function at school.
..our son with Autism -- having him on IVIG gave him language, brought him more in to the present. He became a student at school and not a just some autistic kid who couldn't sit, or attend.”
- “We have seen many improvements with IVIG. . He was able to concentrate and understand more than before. …. a letter from his teacher on what they observed after treatment -- We saw an increase in eye contact (actually seeking it), the ability to draw and label pictures, a want to show us things and label things, a huge decrease in tantrums, and ability to find and use words. He also became less affected by food violations.”
- “My son is 16 and has autism and PANDAS. We have been seeing our doctor for about a year and along with antibiotics we have done 8 IVIGs. It is the best thing we have ever done for our son!!!... When we got the PANDAS diagnosis and started IVIG my son was very aggressive. One day he had gone into a rage and aggression and bit my finger until he broke it- all while being held down by 3 people. Thankfully after the first IVIG the aggression was gone. His anxiety was gone too. My son is nonverbal but uses RPM to spell. He used to tell me he was worried about everything. After IVIG he told me he was happy and the anger and worry were gone…We've done 8 IVIGs now, about 6 weeks between each. He still has a lot of OCD but we've seen so many nice changes. He has stopped chewing paper, which was a totally disgusting constant behavior. He stopped ripping his clothes. His speech is getting better. He has severe apraxia but he can now say sounds he never could before and is putting phrases together. Night time peeing accidents have stopped. He is so much calmer and happier.”
Very good news from those already using IVIG for autism but --- when will insurance companies stop fighting and pay for these crucial treatments? IVIG is highly expensive and many are experiencing denial of services yet earlier studies do show its benefits “Monthly treatment with intravenous gamma globulin (IVIG) may improve hyperactivity, inappropriate speech, irritability, lethargy, and stereotypy in children with autism.
This open retrospective study included 27 children with autism, who had failed to show improvement with dietary elimination of dairy and gluten, vitamin and mineral supplementation, and behavioral educational therapies. Previous studies have suggested that children with autism may have immunological disorders. The group of children in this study had many signs of an overly strong immune response including a high level of antibodies to myelin basic protein, thyroid, and DNA. IVIG is an approved immunological therapy that is considered to be safe for individuals with autoimmune diseases. The authors found that IVIG therapy for six months resulted in improvement in all measured aberrant behaviors.”
PANDAS is being researched in a clinical trial for IVIG - Intravenous Immunoglobulin for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections), http://clinicaltrials.gov/ct2/show/NCT01281969 , which is really great. Autism also needs to have treatments explored for the immune system. We have seen research and parental reports describing improvements seen with the use of IVIG, but also many antimicrobials, such as antibiotics, antifungals, antiparasitics and antivirals. Also probiotics and anti-inflammatories have been found through research and parental reports to help relieve symptoms in autism.
Here is something to consider, reported here by Dan Olmsted and indicative of the relationship of IVIG, the immune system and autism "Absent, too, is the fact that Child 11 is now in college in California after graduating from high school with a 3.75 academic average.
The treatment the father cited, and the rationale for it, has been described in detail by the U.S. doctor who administered it. “A number of immunological abnormalities have been observed in patients with autism,” according to the text of comments he subsequently made at a meeting of an autism group. He said all the children he treated, which included child 11, had regressed after the MMR shot.
“Natural killer cells … that appear to play an important role in defense against virus infected cells and tumor cells are decreased both in numbers and functions in patients with autism. This deficiency may play a role in increased susceptibility to various infections that may in turn play a role in the pathogenesis of autism.”
He goes on to describe the use of IVIG in this context, at the 400 mg/kg dose the father cited. “IVIG has been used in a number of primiary immunodeficiency syndromes, and autoimmune and immunoinflammatory disorders including demyelinating polyneuropathy, multiple sclerosis, Guillain-Barre syndrome."
In his autistic patients, "The results of IVIG treatment show that a noticeable improvement, although to a variable degree, was observed in reciprocal social interaction, verbal and non-verbal communication, and repertoire of activity and interest in all children. One of these patients has been 'completely cured' and is attending regular school."
Autism is not a mystery. It is for far too many, an immune system needing much medical help. It's time to make that a priority in research, in clinical trials and in every doctor's office around the world.
Teresa Conrick is Contributing Editor to Age of Autism.