Many people with autism have health issues like allergies, asthma, eczema, gastrointestinal problems, seizure disorders, and others. There needs to be comprehensive medical support for the common medical conditions experienced by children and adults with autism and the medical issues faced should not be passed off as just part of having autism. This would mean addressing medical issues requiring current and updated gastrointestinal specialisation, seizure disorder expertise, a better understanding of neuroinflammatory illnesses, and establishing practice and policies on Environmental Medicine to address conditions like Multiple Chemical and Environmental Sensitivities, and the links to Chronic Inflammatory Response Syndrome, and other conditions.
Autism care needs to be on the medical school and nursing curriculum. Doctors should be required to have continuing medical education on the most current research and clinical practice on medical issues commonly seen with autism. For example, medical research in recent years has identified three critical issues that change the understanding of potential underlying medical issues in autism, from what it was in the past.
1) Identification of The Glymphatic System
The Glymphatic System is a recently identified lymphatic waste clearing system operating in the brain. Research has suggested that it may function differently in some children with autism. It was previously thought that the blood brain barrier protected children’s brains from toxic, viral, bacterial, fungal, and xenobiotic exposures. However, it is now understood that the blood brain barrier and glymphatic system interact, and a 2022 study in the journal Medicine found that “ . . . children with autism spectrum disorder present glymphatic system dysfunction . . . .”
2) The Brain Microbiome and the Gut-Brain Axis
The question of whether the brain has its own microbiome and the examination of the gut-brain axis and how the microbes and biochemistry of the gut affect brain function, has been examined in various studies. One such study is the Interconnection Between Microbiota-Gut-Brain-Axis and Autism Spectrum Disorder Comparing Therapeutic Options: A Scoping Review in the journal Microorganisms in 2023. Findings in studies like these suggest implications for gut health and autism. These studies point to the relationship between the state of the microbiome, the diet, exposure to ultra-processed foods, pesticides, nanoparticles of plastics and autism. So, issues like difficulty potty training commonly seen in children with autism, are not simply a behavioural choice, or a sensory resistance to using the toilet, as was previously thought. They are also a reflection of undiagnosed and untreated gastrointestinal disease, and this gastrointestinal disease is seen as affecting the functioning of the brain.
3) The Cell Danger Response
The cell danger response is a protective metabolic response to threat at the cellular level, that puts the body’s capacity to remain stabilised out of balance when activated by some trigger. This protective response is supposed to subside after a while. Recent research has identified that in some people with autism, the ‘cell danger response’ may remain activated and affect the capacity for energy production in the brain and redirect things away from healing and development. See Metabolic Features of the Cell Danger Response by Robert K Naviaux.
There is much more past and new research about potential underlying medical factors in autism, which suggest that many previously dismissed concerns must be revisited. This is urgently necessary, if there is going to be greater medical accuracy in assessment, treatment, and intervention for people with autism, regardless of age.
Cutting-edge functional genomics research has identified some of the unique individual characteristics that make some people susceptible to these medical issues and not others. Barbados is well placed with our new genomic analysis capabilities gained during the pandemic, for advancing local knowledge on personalised medicine. If utilised, individual vulnerabilities can be determined, and guidance given on what is best for an individual, rather than practising a “one-size-fits-all” approach for people with autism. We only need the will and care to do so.
Other health issues in autism care include the management of anxiety by a combination of cognitive behaviour therapy, diet, and medication, which is an integrated medical and psychological/psychiatric approach. Another issue of current relevance is the use of CBD oil and medical marijuana to address neuroinflammation, seizure disorders and anxiety. These products require prescriptions by medical professionals.
The need for specialised diets for those with autism as a nutrition and food security priority is yet another health issue. The Journal of Personalised Medicine recently published a study called Ratings of the Effectiveness of 13 Therapeutic Diets for Autism Spectrum Disorder: Results of a National Survey. It outlined special dietary options that benefit people with autism and support their improved functioning. There needs to be a priority to utilise organic, non-GMO, nutrient dense, healing, indigenous vegetables and fruit that support allergen free, anti-inflammatory, neuroprotective diets without exposure to pesticides and fungicides. Cassava, sweet potatoes and other ground provisions, greens and vegetables locally grown without pesticides and fungicides, would better serve the population of children and adults who require whole, clean foods for best health.
We have begun to look at food issues for child health relative to NCDs in terms of salt, sugar, fats, and more recently Ultra Processed Foods, but for children with autism, the food concerns expand to exposure to pesticides and fungicides, GMOs, excitotoxins and neurotoxins in foods through dyes, additives like MSG, preservatives, flavourings, etc. For people with autism, it is also important to consider food allergies, sensitivities, and intolerances, to reduce neuroinflammation. All issues that fall under ‘health’.
Early childhood ‘medical’ intervention and lifelong intervention
It has been stated that there are plans within the education system to prioritise early screening and early intervention of children at the first sign of developmental anomalies. However, there is also a need for early screening within the health system. There are currently brain analysing technologies for diagnosing autism at very early ages to facilitate early access to intervention for the best outcomes. If we are going to transform special education, and focus on technological advancement, we also need to transform special needs health by utilising technology.
Early intervention must involve medical investigation when parents identify concerns like gastrointestinal problems. Prioritising early medical intervention can also assist with matters like record keeping from birth and across childhood, with stool, urine and blood test analysis, statistical analysis for potential correlations and contributing factors and tracking of health and development across time on more indicators, which include inflammatory and autoimmune markers, food, chemical and environmental allergies, and others.
So much of the focus on autism has been on the importance of early intervention that it may seem as if there is an endpoint when intervention, including medical intervention, is no longer possible or useful. This is not true. Intervention at any age has benefits for individuals with autism and this is supported by new understandings about brain plasticity (the capacity for the brain to change) across the lifespan.
Urgent need for autism research
Barbados needs a Multidisciplinary Autism Research and Support Centre at UWI Cave Hill. Such a centre could collect and publish quantitative data on local and regional incidence and prevalence. It could also facilitate qualitative research on caregivers’ lived experiences and the experiences of people with autism themselves, with respect and honour. This work should consider all the science with a view to contributing new understanding to the science from our own unique cultural realities and perspectives. The UWI is well placed to integrate medicine, psychology, education, sociology, social work, and other disciplines, which have overlapping themes that touch the autism experience in the Caribbean.
Such a centre based at the UWI could also facilitate student volunteers in the faculties of medicine, psychology, social work, and education to provide opportunities for training in work with people with autism of all ages. A centre like this could also provide opportunities for students to engage with young people with autism, as role models and mentors, expand the social sphere of people with autism and may create a pathway to integrate young people with autism into the wider society and prepare them for future success.
Autism is not just a difference characterised by different ways of thinking. It is for many a complex medical, social, emotional, psychological, and behavioural condition that needs actions for change from difficult life circumstances. People with autism are not only differently abled, many are also ill in different ways that have been overlooked as merely characteristics of autism and not indicators of metabolic and immune disorders. Autism’s complexity is that it represents an integration of social challenges with medical and psychological challenges. To ignore these other interacting concerns to only focus on the social and behavioural aspects and education, is to leave many with autism unsupported. This approach only focuses on those with the highest level of functioning and best health situations.
Criticism of the traditional medical model
Within the disabled community, there is discomfort with medicalising disability and treating disability as “not normal” instead of disability being seen as within the range of the human experience. This is a necessary part of disability advocacy and disabled identity. However, we cannot trade criticism of the traditional medical model of autism, for medical discrimination. We cannot allow the medical issues of people with autism to be ignored. Health issues like gastrointestinal disorders, that when addressed, can significantly improve the health, quality of life and functioning of people with autism. This criticism in the extreme can lead to neglecting the medical needs of persons with disabilities like autism.
Medical support and intervention may not be intended to “fix” a person, but to optimise their health, functioning and well-being. To ignore the importance of medical specialisation on the health issues that people with autism face, becomes another form of discrimination and exclusion. A kind of reverse ableism, that prioritises the needs of the highest functioning with autism and suppresses the issues of those with the least capacity for self-agency, when their underlying health issues remain untreated.
There is a new specialised biomedical and functional medicine practice of autism treatment that integrates the understanding of cultural and social difference with addressing underlying medical issues with dignity. An integrated health response will be reconciling these two perspectives on this complex disorder to facilitate real change for all persons with autism.
In some quarters, it is believed that autism is treatable. There are recorded cases and recognised research on autism ‘recovery’, or children losing their autism diagnosis. Research is ongoing worldwide to find solutions for those who need it and families who choose to pursue all modalities of support. An individual with self-agency can choose the range of challenges they address, but a parent advocating for a child with autism with co-occurring medical issues, may have a different perspective on the need for medical support.
Quite practically, according to new research on gastrointestinal disorders and autism, choosing to treat a gut disorder of a student with autism can have significant benefits for their capacity to pay attention in a classroom. If we are going to advance education in our response to autism, we also must advance medicine, health, and mental health, to facilitate the best educational experience.
About ten years ago, I was told by two prominent medical professionals that the medical issues related to autism in Barbados need a champion. No respected medical champion has stepped up to represent or address the issues, thus far. While we wait and time passes, health remains a missing piece of the puzzle of autism.
Deborah Thompson-Smith is the Executive Director of registered charity, Spectrum Possibilities.
