By Teresa Conrick
My beautiful daughter, Megan, will be 20 years old on March 2nd. The real heroes are the children, and now soon to be adults of this Autism Epidemic, who live each day in the shadow of pain. Meg is one of them. I write a lot about Autism, not to complain of my struggles, but to share the hope that we are turning the corner from the days of Autism being some type of "mental mystery," to its proper position --- an immune-mediated disease, that can present as neuropsychiatric and/or neurodegenerative. The "spectrum" that so many love to describe would be, in reality, a gauge of illness, of infection, and autoimmunity, and not some psycho-babble yardstick.
A recent article in the UK, Guardian, by Kristina Chew, a mother of a son with an Autism diagnosis, caught my eye recently, and also hammered in my head and heart, that there are definitely different opinions regarding Autism. While it is fine to have and share an opinion, it is another to add in questionable facts and information. From Ms. Chew:
"Do we really need a cure for autism? I've grappled with whether it's morally or medically right to talk about 'curing' autism.......Currently there is no known biomarker for autism, and the disorder is diagnosed based on observations by teams of experts. Most scientists agree that autism is of genetic origin and begins to develop while a child is in the womb. ......Autism is a lifelong disability that cannot be cured in a medical sense."
The link she provides for "autism is of genetic origin' will take you to the CDC website, with a hodge-podge of archaic gene/chromosome bullet points, put out by the same folks who walk the walk and talk the talk of the pharmaceutical/medical industry. Close your eyes and it is 1975, and we are hearing the defense of toxic leaded gasoline and the denial of environmental injury. I am not quite sure why CDC or Ms. Chew do not report this more recent study from Stanford regarding autism and genes:
"A new Stanford University School of Medicine study of twins suggests that non-genetic factors play an unexpectedly large role in determining autism risk, turning upside down recent assumptions about the cause of this common, disabling developmental disorder......It found that genes account for 38 percent of autism risk, with environmental factors explaining the remaining 62 percent.
"It took me a bit by surprise that the heritability of autism was so much lower than previous studies calculated," said Joachim Hallmayer, MD, the first author of the new paper...
The finding that autism risk is strongly influenced by environmental factors should alert scientists to the need to study risk factors they haven't been considering, the researchers said. In recent years, autism research has been focusing more on genetics."
I think that is a better and more current analysis of where we are now concerning any genetic connections in Autism. The focus does need to be on the environment, including vaccines, something we, here at Age of Autism, have been saying since our inception.
Do we need a cure for Autism? I think that is a disturbing question, kind of like saying do we need to stop pain and suffering? Do we need to stop Alzheimer's, Parkinson's or Cancer? Why yes, we do! There are thousands of children and young adults now, who wake each day in pain. Then the issue of morally, if we really look at what that means - decent, ethical, honest, honorable vs the opposite - dishonest, evil, unethical, wicked. Well, I'll take heaps and seconds on the former, as it seems morally reprehensible that these individuals should not be able to live and function in a body that feels good.
As far as the "medically right to talk about 'curing' autism" and "Currently there is no known biomarker for autism"- that is just not true. There is a growing list of "markers" that many of these individuals carry, especially those with severe symptoms, that make them unique to an Autism diagnosis:
Each of these studies shows an injured IMMUNE SYSTEM in Autism. Megan, unfortunately, has been a victim to many of these pathogenic infections and more. Her recent autoimmune diagnosis may be a sign that her immune system could no longer fight them off. Streptococcus, an infection that many school children get, has become a true monster these past years in both Autism and PANS/PANDAS - Pediatric acute-onset neuropsychiatric syndrome/Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. Something is making our children more susceptible to latent and chronic infections which then wreak havoc medically and mentally.
In the past two years, studies on children with an Autism diagnosis reiterated just how important microbes and pathogens were in the gut of these children:
"The latest research, conducted over the past several years, probes the controversial possibility that whatever is amiss in the gut is not just a symptom of autism, but one of the causes. The work is an offshoot of mounting scientific interest in the human microbiome, the stew of bacteria that make their homes in our gastrointestinal tracts....these microbial residents may direct brain development, ultimately shaping behavior..
"It's a big eye opener," says lead investigator Sven Pettersson, professor of microbiology at Karolinska Institute in Sweden. "If you would have said 20 years ago that bacteria would have anything to do with brain function, people would have laughed at you."
In 2012, more evidence was found:
"The investigators found that over half of the children diagnosed with autism and gastrointestinal disturbances had Sutterella in intestinal biopsy tissue, while Sutterella was absent in biopsies from typically developing children with gastrointestinal disturbances. Not only was Sutterella present in the intestines of children with autism, but relative to most genera of bacteria, Sutterella was present at remarkably high levels. Sutterella species have been isolated from human infections previous to this study, but it remains unclear whether this bacterium is a human pathogen....."There is much work to be done toward understanding the role Sutterella plays in autism, the microbiota, infections, and inflammation."
There is much evidence showing biomarkers in Autism. Investigating and researching will bring us closer to the specific immune treatments to restore true health:
"Increasing evidence indicates that the complex microbial ecosystem of the human intestine plays a critical role in protecting the host against disease. This review discusses gut dysbiosis (here defined as a state of imbalance in the gut microbial ecosystem, including overgrowth of some organisms and loss of others) as the foundation for several diseases, and the applicability of refined microbial ecosystem replacement therapies as a future treatment modality..... 'Microbial Ecosystem Therapeutics' (MET) would entail replacing a dysfunctional, damaged ecosystem with a fully developed and healthy ecosystem of 'native' intestinal bacteria. Its application in treating Clostridium difficile infection is discussed and possible applications to other diseases such as ulcerative colitis, obesity, necrotising enterocolitis, and regressive-type autism are reviewed."
So at age 20, I don't give up on Megan's health or her life, and I wait as the truth keeps emerging.
And I came home
Like a stone
And I fell heavy into your arms
These days of darkness
Which we've known
Will blow away with this new sun
And I'll kneel down
Wait for now
And I'll kneel down
Know my ground
And I will wait, I will wait for you
Teresa Conrick is Contributing Editor for Age of Autism.