Dear Mr. Trudeau,
My name is Lisa Stephenson and I am writing to you today regarding a matter of utmost importance. You received a similar letter two years ago but since I received no response I am writing to you once again to discuss the most important public health crisis our society has ever faced. I am a mother of two boys and an educator, certified to teach Kindergarten to Grade 6 in Ontario and New York State, and there is nothing more important to me than the health, happiness and general well-being of not only my children, but children everywhere. Currently, I am not teaching because I learned some horrific things since becoming a mother, almost twelve years ago and the information I acquired is now preventing me from returning to the classroom where I would have no choice but to educate children suffering from a plethora of misunderstood and misdiagnosed disorders. Over the last ten years I learned that children diagnosed with autism are suffering from gastrointestinal disorders, unexplained seizures, gross and fine motor issues, severe allergies, nutritional deficiencies and recurring fevers, but are not medically treated. I learned that children who have lost speech and the ability to maintain eye contact, who are lost in their own worlds and who suffer from chronic rashes, terrifying meltdowns and selfinjurious behaviours are taken to psychiatrists who offer a diagnosis and send them on their way to wait years for therapy. I learned that autism, ADHD, Obsessive Compulsive Disorder (OCD), severe anxiety and many, many other cognitive issues are variants of the same disorder but we have stigmatized our children with these ‘labels’ because we do not understand the underlying biological processes. I learned that many of these children are prescribed powerful, mind-altering medications, the long-term consequences of which have never been studied. I learned that there are lengthy wait lists and a wide range of disparity in government-funded services between provinces, and that in many cases there really is no such thing as “early intervention”. I learned that our government mandates that services and support must be delivered during daytime hours when a child is most able to learn but does not allow providers to deliver these much needed services in the school setting. I learned that therapy just becomes a bandage on a gaping wound since many children are simply just too sick to learn the skills that healthy children develop almost instinctively. Sadly, I also learned that our government is failing these children and their families. BUT, most importantly, between sleepless nights covered in vomit and feces, endless hospital visits with a child who could not breathe or a child with a diaper full of blood, between interminable ridicule, mockery and shame directed at me by our medical professionals, I learned that autism is caused by an environmental assault on a genetically susceptible population during a very critical developmental period. I learned that in most cases, autism is a set of symptoms of a dysfunctional immune system and that it is treatable, surmountable and preventable.
As the leader of our country you are likely already aware but I will nonetheless state a few facts about this global epidemic of chronic illness that is destroying an entire generation of children, and many adults alike. 1 out of 7 U.S. children aged 2 to 8 years is now reported to have a diagnosed mental, behavioral, or developmental disorder.1 Approximately 11% of American children 4-17 years of age (6.4 million) have been diagnosed with ADHD as of 20112 and that number is increasing rapidly. 47.5 million people worldwide now suffer with dementia and there are 7.7 million new cases every year.3 Total health care costs for dementia now exceed US$604 billion, or 1.0 % of the global Gross Domestic Product (GDP). Anxiety and mood disorders are crippling our quality of life as depression is now the leading cause of disability worldwide, affecting more than 350 million people.4 Currently, 1 in 68 American children has an autism spectrum disorder, a rate that has more than doubled since 2002 (although reports now indicate that figure may be as high as 1 in 45). The annual cost of autism has more than tripled since 2006 to $126 billion in the U.S. and UC Davis health economists estimate that figure could reach $1 trillion by 2025.5
In autism, antibiotics, antimicrobial cleaning agents and carcinogenic compounds in our food, to name a few, have contributed to the destruction of healthy gut bacteria (the microbiome) and host immunity.6 7 Furthermore, the environmental onslaught of toxic chemicals has eroded the child’s under-developed gastrointestinal tract and allowed pathogenic organisms like viruses,8 bacteria9, and fungus10 to travel directly to the brain through a series of recently discovered lymphatic vessels,11 penetrate the blood-brainbarrier12 and effectively force a protective neuro-immune shutdown of blood flow to key parts of the brain. In autism, this inflammatory process occurs in the language-dominant temporal lobes.13 Children with autism often present with nutritional deficiencies and severe gut dysbiosis and research now shows gut permeability is at the root of everything from rheumatoid arthritis, allergies, asthma, eczema, Crohn’s/colitis and celiac to diabetes, autism, Alzheimer’s, Parkinson’s and even cancer.14 15 I would like to point out that Gulf War Illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related illnesses including Fibromyalgia and Multiple Chemical Sensitivity should be included in this non-exhaustive list, however since these patients have often been treated with skepticism, uncertainty, apprehension and labeled as deconditioned or having a primary psychological disorder, the published research to support this is essentially non-existent.
Our children’s immune systems are under attack. Their bodies are not designed to process the 80,000 chemicals that are on the market today, yet we pump our young children full of food and water laden with toxic substances,16 that they were not meant to eat or drink. There are even toxic chemicals in the air they breathe and then we question why so many children with autism lose their skills in the second year of life. Is it not obvious? If the toxic overload occurred earlier in life during the fragile early months, the consequence would be death since the same mechanisms are at work here as they are in Sudden Infant Death Syndrome (SIDS),17 which occurs when you have an infant with an underlying biological vulnerability, who is at a critical development age and is exposed to an external trigger. As in autism, SIDS affects more males than females.18
So how do we resolve this crisis that will soon bankrupt our nation, is destroying families and is robbing our children of their health, happiness, and future? First and foremost, autism and related disorders must be removed from the defining body for the classification of mental illness, the DSM-V. All a diagnosis of mental illness has done is conceptualize and stigmatize individuals with autism in a particular way in order to make their difficulties legitimate, observable and recognizable. An autism diagnosis has done little for our children except affix a label that has negative implications for the way they are perceived and for assumptions made about their abilities. Not only is a diagnosis under the DSMV having devastating consequences for children everywhere but it has put parents in a position where we must now ardently advocate for understanding and acceptance for our children, thereby ignoring the basic reality underlying this condition. How can we advocate for understanding of autism when we as a society don’t even understand it? Autism is not a mental illness. It is not a developmental disorder, as it is impossible to have an epidemic of genetic or developmental origin. It is not “something that just happens to the brain” like many parents are told. Autism is a medical illness that is treatable and preventable and the first step in understanding this condition is to classify it properly, in the medical journals where it belongs.
Secondly, we must cease wasting tax-payers’ money on useless studies and ineffective committees. I respectfully refer to the Autism Spectrum Disorders Clinical Expert Committee appointed in Ontario in 2012 by the Lieutenant Governor in Council to review and analyze evidence-based research on treatments, services and supports for children and youth with autism. In my opinion, appointing a working group comprised of psychologists to solve the autism crisis is akin to deploying a group of culinary experts to extinguish a 5- Alarm blaze. They simply do not have the tools, knowledge or expertise to get the job done. Children will continue to suffer and lives will be lost.19 Additionally, there have been numerous studies narrowing the cause of autism to a single source such as paternal age20 or maternal weight,21 for example. It is common knowledge that the risk of having a child with any type of health issue increases with parental age and problems during pregnancy. There are a multitude of external environmental triggers and inherent factors at work here that can injure a genetically predisposed child. There is no one single cause for autism and wasting money on senseless research has to stop. It is mind-boggling that a research team was given money to prove the fact that adults with autism are at a greater risk of sexual victimization than neuro-typical adults.22 Of course they are at a greater risk! Every person with a
physical or intellectual disability is at a greater risk of being preyed upon, sexually or otherwise. We do not need a study to prove this point. This fact is clearly common sense yet money is repeatedly wasted on studies like these that do absolutely nothing to help our children and this practice must cease immediately.
Autism is not a developmental disorder but rather a set of symptoms of a dysfunctional immune system. Society has spent over 1 billion dollars on a futile search for the autism gene yet it is scientifically impossible for a genetic condition to reach epidemic proportions. This is a simple fact that is taught in medical school yet we have missed this critical detail because autism is incorrectly classified and treated as a psychiatric disorder. In the case of non-genetic autism, which is about 80% of cases, we must understand that what we are dealing with is a complex immune disorder.
To address the issues faced by our sick children and their shattered families, I founded a non-profit organization working to bring together state of-the-art resources for care, assessment, treatment, research and education in order to maximize optimal outcomes for individuals with neuro immune dysfunctions. The Hamilton Neuro-Immune Treatment Centre of Excellence (HNITC) will be the first establishment of its kind to offer the opportunity for children and youth affected by neuro-immune dysfunctions to receive medical treatment that will alleviate the debilitating symptoms associated with these conditions and improve physical and mental health. We will operate as a residential care facility and plan to document the recovery of the children in our care.
We also plan to work with governing bodies to implement a National Autism Strategy (NAS), which this country so desperately needs. The NAS will include the initial steps to be taken in order to ensure a smooth transition of autism and related disorders to the medical realm. Secondly, the NAS will include a Standard Protocol for Medical Care fashioned on our evidence-based cancer care model, which involves:
- facilitating effective communication between patients and care providers;
- identifying each patient’s psychosocial health needs;
- designing and implementing a plan that:
- links the patient with needed psychosocial services,
- coordinates medical and psychosocial care,
- engages and supports patients in managing their illness and health;
- systematically following up on, re-evaluating, and adjusting plans.
The Standard Protocol for Medical Care will educate our medical community about autism and related neuro-immune illnesses, and roll out a pharmaceutical treatment plan that selectively targets and utilizes existing agents that have been proven safe and effective through many years of use in children, such as anti-viral medication, anti-fungal medication and SSRIs (Selective Serotonin Reuptake Inhibitors) that increase blood flow to the brain, particularly the temporal lobes, which reproducibly have proven to be hypoperfused as evidenced by NeuroSPECT scans.23 Also incorporated into the treatment plan is a restructuring of the new Ontario Autism Program (OAP), which would allow Board Certified Behavior Analysts (BCBAs) to deliver this much needed rehabilitative intervention in the child’s school setting, among other things. Our current practice forces parents to send their injured children to private institutions or keep them at home to receive therapy, thereby further isolating them from society and typical developing peers where they would be given opportunities to learn through modelling and imitation of appropriate communication and social behaviours. Other service providers such as Occupational Therapists, Speech and Language Pathologists and Social Workers, to name a few, are allowed in our schools to provide services to our special needs children. Disallowing behaviour specialists in the schools, thereby forcing parents to choose between school and therapy, is in breach of The Education Act, in breach of The United Nation’s Convention on the Rights of the Child and clearly violates these children’s basic human rights to attend school under the Canadian Charter of Rights and Freedoms.
The third segment of the NAS will include a crucial prevention plan. We have reduced the occurrence of SIDS by removing triggers from the nursery and the same can be done for autism and related neuro-immune disorders. Parents must be educated and our newborns must be provided every possible opportunity to ‘build immunity’ and develop a healthy microbiome in order to keep the gastrointestinal tract functioning optimally, setting them up for health later in life. Examples of this include, but are not limited to a toxin-free diet, judicious administration of antibiotics, chemical avoidance for the first few years of life while the immune system is still developing, eliminating substances that can elicit an immune response (allergens or ‘immune system triggers’) and ensuring our children are not living in an environment made sterile by using a host of toxic antimicrobial agents. Essentially, our children need to be children. They need to be outside getting dirty in the environment God provided, just like children were before we destroyed it. Preconception maternal health optimization, enhanced pre-natal care and parental education about the risks for autism is paramount. Strategies to reduce chronic stress, which can be disastrous for both mother and child, must be implemented since chronic stress equals chronic immune activation and inflammation, which translates to chronic illness.24 25 An array of additional simple blood tests, of ferritin levels for example, a deficiency of which is linked to the development of autism,26 must be common practice. If our mothers are not healthy how can we expect their children to be?
Finally, the NAS will oversee the direction of research funds with a focus on potentially valuable future treatments such as Fecal Microbiome Therapy (FMT) or Stem Cell Therapy, for example. The NAS will also oversee the development of more effective and safe immune modulating medications. Work has already begun on the development and clinical testing of Site Specific Immunomodulators (SSIs), which are designed to activate the body’s innate immune response and restore normal immune function in the targeted organ or tissue to reverse the chronic inflammation underlying many chronic diseases including cancer, inflammatory bowel disease and other immune-related conditions. Patients treated in the afore mentioned trials are experiencing drastic health improvements with little or no side effects, and children and adults with autism desperately need and deserve the same opportunity.
Canadians can NO LONGER stand by and witness an uncontrolled chemical trial by psychiatrists that involves the mass-medication of hundreds of thousands of children across the globe, who could very likely suffer detrimental health consequences as they age. We can NO LONGER stand by while our medical community ignores the plight our children face, leaving vulnerable and desperate parents to be taken advantage of by unscrupulous practitioners of non-medically approved therapies that may leave their children in a more precarious medical condition than before. We simply can NO LONGER watch and wait for a complete societal breakdown, as a point will soon come when we will be unable to care for our sick and aging population and our ill and injured children whilst desperately maintaining our own mental and physical health in a toxic and inhospitable environment. We can NO LONGER waste tremendous amounts of taxpayers’ money on genetics and ignore the fact that many chronic illnesses are not the result of genetics, but rather a consequence of the environment acting on our genes. We can NO LONGER, in the absence of a medical explanation of symptoms, render chronic immune illnesses to the psychiatric realm and watch medical doctors ignore the benefits of functional medicine by only recognizing disease presentation and not addressing underlying causes of these illnesses. We MUST bring together specialists in the field of pediatric immunology, pediatric infectious disease, pediatric neurology, and pediatric endocrinology (more secondary than root cause) to carry out the necessary research and design clinical trials aimed at treating the root cause of neuro-immune disorders. Canada MUST lead the way on this. We CAN do it, and when we do, the rest of the world will follow our lead.
In closing, I would like to add that as educators you and I possess a vested interest in the health and well-being of all children. It is also our legal, ethical and professional responsibility to protect our children and youth from harm under Section 72 of The Child and Family Services Act. The Act defines the phrase “child in need of protection” as a child who may be at risk of abuse, neglect, or risk of harm. I strongly feel that the continued neglect of our children’s medical needs provides me with reasonable grounds, and constitutes a situation whereby it is my duty to report that inaction as neglect, blatant disregard and lack of care for children that are being harmed and are clearly in need of protection.
Many years ago, a letter was written by Ellen Bolte, the mother of a boy with autism, aptly titled “What are you doing to solve the autism epidemic?” Ellen Bolte’s story was chronicled in 2011 in a CBC documentary by David Suzuki’s The Nature of Things called The Autism Enigma. Ellen Bolte’s letter was written on July 3, 2012, more than 5 years ago, and still nothing has been done.
Prime Minister, working to establish Canada as a global leader in the care, assessment, treatment, research and prevention of complex immune and complex viral pediatric conditions is what I am doing to solve the autism epidemic. What will you do? I eagerly await your response.
Lisa M. Stephenson, B.A., OCT
Principal & Executive Director
Hamilton Neuro-Immune Treatment Centre of Excellence