by Deborah Thompson-Smith
The sixth World Autism Awareness Day was observed on Tuesday April 2. Much has been done over the past few years to increase the level of awareness about autism in general. Many people now have an understanding that autism is a disorder that affects learning, behaviour and social interaction, but few people are aware of the many health challenges that people with autism and their families face and the herculean efforts parents engage in to manage their loved one’s health and well being.
Autism is not a mental disorder but a medical disorder
Since autism was first described in the 1940s as a mental disorder – characterised by impairments in communication and social interaction, accompanied by a limited range of interests with repetitive behaviours and obsessions – it has been grounded in the fields of psychiatry and psychology, and seen solely as a mental health issue.
However, in the last decade, the understanding of autism has shifted to focus on the underlying medical basis of the disorder and not simply on the behavioural characteristics. Autism is now being seen as a medical disorder with a psychological manifestation.
The behaviours, which once defined the condition as a mental disorder are now being seen as the symptoms of something more significant going on in the body at the metabolic and biochemical levels.
Many children with autism spectrum disorders often have a range of co-occuring health problems, including seizures, gastrointestinal problems, chronic infections, environmental and food allergies, sensory processing problems and several other conditions. Despite this, in Barbados, the focus on autism tends to be behavioural and there is limited knowledge about the underlying medical aspects of the condition.
My own experience has shown me that my son’s autism is much more than what it seems on the surface. I write from the perspective of a parent coping with multiple gastrointestinal disorders co-occurring with autism. It is important to note that each child’s health issues and experience are unique, but some common challenges exist in managing our children’s overall health.
It is my hope that by sharing some of the challenges of managing treatment of my son’s gastrointestinal problems, readers will gain a better understanding of what other families might face.
My personal experience
Like many children all over the world, my son seemed to be developing typically until two and a half years old. At that time, he experienced a regression in his development. His language development stalled, he lost eye contact, social interest, and developed anxieties and fears.
He also started to engage in repetitive behaviours. Of significance too was that simultaneous with the emergence of these symptoms, he also could not sleep at night, ground his teeth, had eczema, reflux with vomiting and chronic constipation lasting sometimes for up to 14 days. Everyday, he was in an immense amount of pain and for us, this overshadowed all the behavioural characteristics.
All guidance we were given focused on the behaviours, but no attention was given to any underlying medical conditions. Little was done to assess or treat his severe gastrointestinal pain and suffering. Accepting an autism diagnosis was difficult enough when we only focused on the behavioural and learning aspects.
However, accepting that our son would have chronic stomachache, reflux, vomiting, constipation, intermittent diarrhea and would suffer the kind of pain he had for the rest of his life was impossible for us to accept. We knew something more had to be done.
As deeply traumatic as the gastrointestinal problems were, I am glad for that experience, because our belief that this kind of suffering could not be the life for our son pushed us to find out more. We entered a world of biomedical treatment of autism, which changed the paradigm for us.
I recall hearing the words of the nurse on our first Skype consultation with biomedical doctors in the US saying: “I am sorry that your son is sick, we will get you the meds to help him as soon as we can.” I could not believe my ears. My son is “sick”. Sick? No one had said that before, I had just heard that he had autism. From the day that our son began to be treated for his illness, some of his symptoms of autism began to diminish.
Management of biomedical treatment is complex
The life of a family in Barbados managing biomedical treatment is not easy. There are no biomedical specialists in Barbados, so at this time, pursuing this approach requires a commitment to travel overseas annually. Travel with children these days can be stressful, but travelling as a family with a child with autism intensifies the level of stress.
Anyone who has been through Miami International Airport knows what I’m talking about.
Making the commitment to the biomedical approach to treating autism requires many lifestyle changes. It is a journey of continuous learning and trying to master several stages of change. It is a commitment to do the best you can with limited resources and sacrificing to find the resources you need.
What is the biomedical approach to autism?
The biomedical approach recognises the role of genetics in the manifestation of autism, but it does not see autism as being caused by genetics. Genes are units of heredity transferred from our parents with unique coded instructions to determine our unique characteristics. It has been thought that autism is caused by genetic inheritance of autism specific genes.
However, two important aspects of the biomedical approach are the consideration of nutrigenomic and epigenetic factors in the expression of autism.
Nutrigenomics studies the interaction of different foods with specific genes at the molecular level to increase the risk of certain diseases being expressed by the genes. Epigenetics studies the interaction of environmental factors with genetic propensities to trigger the expression of certain diseases or characteristics. To put it simply, we all have certain genetic tendencies towards certain diseases.
However, it is exposure to certain triggers in our environment like some foods and substances which we might ingest, inhale, inject or absorb, which turn on the problematic genes and contributes to the expression of disease. Just as genes for diseases can be turned on by exposure to certain environmental factors, they can also sometimes be turned off by the removal of offending triggers. An example of a health issue for which nutrigenomics is important is the management of diabetes through lifestyle changes in diet and exercise.
The new understanding of autism recognises it as an autoimmune disorder characterised by inflammatory processes, which affect multiple systems of the body, including brain function and development. Allergenic and inflammatory foods and digestive disorders, contribute to malabsorption of important nutrients fundamental to growth, repair and development, as well as for proper detoxification. The biomedical approach seeks to reduce the inflammatory processes in the body, and address the malabsorption and detoxification issues which are affecting brain functioning.
Untreated gastrointestinal disorders in children with autism often generate many unusual behaviours.
These behaviours include things like assuming odd postures like kneeling in a bent over position, creating pressure on various parts of the body by pressing on furniture, seeming to avoid toileting and potty training, avoidance of eating in general or only eating certain foods.
Some additional behaviours include rocking, moaning, screaming, tapping or hitting on the body. In the past, when looked at from a mental health perspective, these behaviours were mistakenly seen as just part of the behavioural characteristics of “the autism”, but it is now understood that many of these behaviours are attempts to self-sooth to cope with pain and discomfort or to avoid experiences of pain and discomfort.
The traditional treatment of such problems usually involves efforts to manage behaviour, which might include sedative medications or behavioural management therapies, and the typical recommendation for the digestive issues is the use of laxatives and enemas.
However, the biomedical approach is an investigative one. It requires investigation of possible causes of the digestive problems and symptomatic behaviours. Sometimes supplements and medications are given when these kinds of behavioural symptoms are seen, in an effort to treat the underlying causes of the behaviours.
Some of these underlying causes include esophageal reflux (which can cause repetitive throat and chest tapping and avoidance of eating some foods), ulcers and swollen glands throughout the digestive tract (which can cause posturing for pain management as well as moaning, crying and screaming), slow bowel mobility or bathroom urgency (which can cause toileting accidents), among others.
Biomedical treatment utilises supplements and medications to bring about alleviation of symptoms and healing of the gut to facilitate improved health. Biomedical treatment focuses on seeing the whole person and their health status and not only the autism diagnosis.
The biomedical journey
The biomedical journey begins with testing for food allergies, and testing stool, urine and blood to identify various metabolic biomarkers or signs of malfunction or anomaly in the body. Those results then guide the next steps. The first step is removal of all allergens which cause inflammatory reactions in the body.
For us, removal of gluten and dairy resulted in a significant reduction in the number of days of constipation and experience of pain and discomfort. Removal of gluten and dairy also helped our son to become more attentive and to have a burst in his language development and social interest.
Over time, foods for which there is sensitivity and intolerance were also removed or rotated to achieve a further reduction in the inflammatory process. This meant removal and avoidance of eggs, nuts, soy and yeast. The addition of digestive enzymes to help break down food for easier digestion, to allow the gut to heal and to cover all bases in terms of exposure to allergenic foods also made a significant improvement. Pre and probiotics were also added to balance the gut flora to improve health and functioning of the bowel.
The relationship between gastrointestinal function and brain function is of major importance, so everything that goes into the body is worthy of consideration. And so, it is also essential to remove foods considered to be excito-toxic (chemicals which damage nerves by excessive stimulation until they are killed) like preservatives, additives, flavour enhancers like MSG, food dyes and artificial sweeteners.
Close observation of foods and reactions is a hallmark of this approach, so noticing that grape juice, apple juice, and bananas cause certain types of behaviours in our son led to the understanding about sensitivity to foods with phenols and salicylates. This brought a further improvement in bowel function, as well as improvements in focus and attention.
After making several changes at this initial level and still not yet reaching the best functioning of the gastrointestinal system, we had to go further with investigative surgery including endoscopy, colonoscopy and pill cam by a specialist in gastrointestinal disorders in children with autism. This investigation proved the presence of diagnosable conditions that the allergenic food avoidance was helping, but now specific medications to treat inflammation and improve bowel function were added.
But, biomedical treatment goes even further still. It considers the level of functioning of other systems in the body and their impact on brain function and so we added immune regulators like bovine colostrum and zinc and addressed metabolic anomalies, which result from a poorly functioning digestive system by introducing vitamins and minerals like Calcium, Vitamin A, Vitamin D3, Vitamin C, B Vitamins (B3, B5, B6, B12) which may not be absorbed and processed in the body due to inadequate digestion. All these additions further helped our son to develop and improve in his level of functioning.
Recent research has identified the gut as “the second brain”. Chemicals called neurotransmitters transfer information between nerves and throughout the brain and central nervous system and some important ones like serotonin which regulates sleep, appetite, memory, mental health, etc. are created in the digestive system and play an important role in the behavioural aspects of autism. A poorly functioning digestive system has implications for the production and function of neurotransmitters in the brain.
Although the focus here has been on my own experience with my son coping with digestive problems associated with autism, many parents cope with other health conditions mentioned earlier. In the biomedical approach, each individual child with autism requires a unique understanding of his/her biomedical profile, and the appropriate treatment protocol is developed for their unique issues.
It is a very specialised area of medical practice based on research and experiences of significant improvement and recovery of children, adolescents and adults with the disorder. Biomedical treatment for autism can be costly and parents have to weigh the financial costs against the cost of dealing with a loved one who is chronically ill across their lifetime.
Extensive consultations, thorough birth, developmental and medical histories, testing for all indicators of biochemical imbalance, and daily management and observation of all the dietary, nutritional, metabolic and detoxification issues generates the necessary information from which to proceed. In all this complexity, the parent is the manager who executes several aspects of the whole process.
Managing biomedical treatment of autism in Barbados is challenging. A privileged few are able to afford all that is required – daily supplements and medications, monthly reviews of changes or absence of changes in health status, annual Skype consultations and overseas visits to doctors. It can be overwhelming just to think about all that is needed each day to make it work, especially in a country where there are no biomedical specialists. However, for some on the autism spectrum with medical problems, biomedical treatment is one of the approaches which makes a future at school and integration into the wider society a possibility.
Biomedical treatment of autism is increasingly being seen in North America and the UK as an approach that in combination with other therapies contributes to significant improvement and even recovery in some children, especially with early intervention. In their effort to provide the best care for their child and to bring comfort to their suffering, some families here manage their child’s biomedical treatment independently, but under the guidance of internationally based medical doctors.
It is time for all families coping with autism to be able to access biomedical treatment for their loved ones if they so wish and for those managing this complex treatment approach on their own, to have some needed medical support. Spectrum Possibilities is seeking to facilitate access to safe biomedical treatment by qualified physicians for all Barbadians coping with autism and related disorders.
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