Turning the Tide of Behaviourism
Please find below some thoughts from Romulus Campan, an adult with autism and a delegate at our recent conference. I had the pleasure of talking to Rom at the conference. I cannot remember the last time I met someone so open-minded, eager to take in new information in order to learn and not simply, as is so often the case for many, to strengthen already held views. It was an absolute honour to exchange ideas with him. Only with this kind of robust willingness to learn, to change, to question, to reflect in a genuine way on the research and lived experience, can our society provide the interventions, treatments, environments and understanding that will allow for the quality of life all people with autism deserve. Anita, Chair of Thinking Autism
“It would be literally impossible to express within the limited scope of an article, the intellectual and emotional richness I experienced by participating in this conference”
Turning the Tide of Behaviourism
A thankful participant’s notes on Thinking Autism’s 2019 International Conference on Autism and Comorbidities, London
When Thinking Autism kindly sent me an invitation to participate as a guest at their 2019 International Conference on Autism and Comorbidities, it felt like the unexpected answer to a faithless prayer, because at that time I was becoming increasingly aware of the significance of comorbidities in autism, from both studied research and a painfully-lived experience.
I was already starting to suspect that the co-existence of autism with often severe comorbidities such as epilepsy was actually a much more than random incidence of a diverse cluster of conditions, present at different levels of symptomatology, but present nevertheless with autism.
This new understanding of autism could lead to a movement away from the unfortunate behavioural model, towards a paradigm based on physiopathology, which could offer hope of treatments to millions affected worldwide by this condition.
I will not enter into the disastrous effects of autism’s apparent, earlier abandonment to behavioural sciences, resulting in the overanalytical pursuit of understanding autism from psychopathology’s rather restricted perspective, which seems to have failed to recognise the obvious interconnectedness of autism and other conditions, leaving them “at the gates” as only comorbidities. However, this failure has resulted in the questioning of the entire autism narrative by the whole community, from both the higher-dependency (low-functioning) end of the spectrum through parents and carers, but also from the lower-dependency (high-functioning) end, by autistics themselves. Now, whenever the social fabric receives ripples of newer life-embroideries, sociology makes its way to analyse the ripples in the individual and mass effects to the greater societal garment. But I shall return to this later.
As mentioned earlier, the honour of having been invited to such a prestigious event, albeit sadly ignored by the mainstream media, was somewhat counterbalanced by the dread of a public transportation and hotel accommodation nightmare to and in London. However, when I read the programme, my anxiety started to fade away, gradually giving way to a tremendous excitement.
Once we understand—and accept—that autism is much more than functionality labels, meltdowns and shutdowns, a gate opens to believe that for a diagnosis still thought of as immutable and lifelong, there is hope for treatments, maybe one day a cure.
I realised how timely the “early bird…” proverb became when due to my neuro-physical disabilities I arrived ahead of time to “catch” myself a suitable seating place, in a lecture hall which quickly filled to capacity, including parents and carers, autistic individuals, and both. On reading the conference programme, I initially felt some uneasiness about the contrast between the clearly complex scientific topics, the top-flight academic credentials and represented international medical institutions and organisations, and the lack of the usual predominance of behavioural scientists.
At the time, comorbidities with regard to autism were for me, mainly psychiatric conditions. But how glad I am to have learned about a whole new world of scientific efforts where for example “recent research has demonstrated that autism spectrum disorder is associated with several metabolic disorders, including disorders of redox, methylation, folate, purine, tetrahydrobiopterin, carnitine, amino acid and mitochondrial metabolism. The association with metabolic disorders is important as such disorders may be amenable to treatment if the disruption in the metabolic pathway is detected and understood. Although it is important to better understand the appropriate treatments that could theoretically improve function of these pathways, empirical evidence for such treatments is much more helpful in guiding clinical therapy. Studies have documented improvement in autism symptoms with many of these treatments in clinical studies which range from case reports to well-controlled randomized trials.” (Richard Frye MD PhD, Director of Autism Research at Arkansas Children’s Hospital, USA)
The rich list of the conference’s brilliant speakers further revealed that autism, far from being a purely behavioural disorder, may in fact have origins in the complex world of our DNA heritage, on molecular, cellular systemic levels.
Now, once we understand—and accept—that autism is much more than functionality labels, meltdowns and shutdowns, a gate opens to believe that for a diagnosis still thought of as immutable and lifelong, there is hope for treatments, maybe one day a cure.
Speaking of treatments, Dr Adi Aran, MD, Director of Paediatric Neurology at Shaare Zedek Medical Center in Jerusalem, Israel, specialised in the diagnosis and treatment of Autism Spectrum Disorder (ASD) and related genetic disorders, focused his research on the endocannabinoid system involvement in ASD and related disorders and the evaluation of new therapies for the treatment of these disorders, being a pioneer in the research of medical cannabis in autism, a subject that is currently receiving public attention worldwide.
Dr Annabelle Manalo, PhD, a developmental biologist from Vanderbilt University in Nashville, Tennessee, USA, has revealed through her ‘Real life experience of medical cannabis treatment in autism’ presentation, that her newborn son suffered from a stroke and uncontrollable seizures, and how their journey towards recovery filled Annabelle with a passion and commitment to the cannabis industry, including an interest in specific cannabinoid therapeutic benefits to disease.
Dr Federico Balzola MD, Division of Gastroenterology, University of Turin, Italy, “is driving several clinical researches in Italy on the identification and treatment of the autistic enteropathy with dietetic and pharmacological approaches.” In his presentation ‘Autism and gastrointestinal symptoms’ Dr Balzola emphasised that “The major prevalence of gastrointestinal symptoms in patients with autism compared to healthy controls has been extensively proved, with a potential secondary impact on children’s behaviours.”
Dr Agnieszka Wroczyńska MD PhD, Medical University of Gdansk, Poland, presented ‘Evidence-based Medical Diagnostics in Autism: developing a clinical practice algorithm’. Her presentation focused “on identifying those underlying or comorbid medical conditions in autism, such as inborn errors of metabolism, epilepsy and subclinical epileptiform discharges; mitochondrial dysfunction, gastrointestinal disorders with high prevalence in autism such as celiac disease, reflux disorders and eosinophilic esophagitis; immune and allergic disorders, including mast cell activation disorders, autoimmune encephalitis, PANDAS/PANS and others.”
Dr Ben Marlow MD, Consultant Paediatrician MBiochem, specialised in Neurodisability, presented ‘Addressing autism comorbidities in the UK – experiences from inside the NHS’. From the dual perspective of a parent of a child with autism and a medical professional, Dr Marlow focused on “the obstacles and challenges in place within the NHS and the education system.”
It would be literally impossible to express within the limited scope of an article, the intellectual and emotional richness I experienced by participating in this conference, and therefore to write an account doing justice to all speakers and their absorbing presentations. I have done my humble best to show our readers that Autism has finally knocked at a door which could lead to a path of integrative research, attempting to unravel its complexity from causes to effects.
Looking around myself over the span of three fantastic days, I believe to have seen the real, although elusive face of Autism; from the dedicated, tired parent, going home with a notebook full of new hopes for our unique children; the autistic adults unsure if being unwilling to socialise with other participants is “cool” or not; guest speakers sitting as in their student days, listening to each other’s presentations seated amongst the participants for whose benefit they have travelled maybe thousands of miles; the team of organisers, parents themselves, arriving before and leaving after anyone else, heroically trying and succeeding to juggle practical and logistical considerations; while myself experiencing on a personal level the challenges of a late diagnosis within the confusing complexity of multiple comorbidities.
It was probably Dr Agnieszka Wroczyńska who expressed the greatest challenge autism research is facing: “The existing clinical guidelines for autism focus on behavioural interventions, and current interdisciplinary approach recommendations with regard to autism and comorbidities do not sufficiently address the medical needs of many persons with autism.” One only needs to venture on any social media platform attempting to discuss severe autism from a medical perspective, or the existential dichotomy faced by parents or carers of loved ones with severe autism, to face a backlash reminiscent of the medieval dark ages, an ignorance unashamed to call such brilliant research “quackery”.
As I ended my introduction with the societal ripples caused by new increments to the knowledge base of autism, I will conclude by observing that problems begin when sociology, instead of asking the right questions or proposing new, starts cutting and tearing into the complex infrastructure of the greater societal garment, creating and re-creating patterns, knowing basically nothing about the already existing patterns, or how the new structures would interact with unpredictable motions of the wider environment. Such was the case around 1990 when a sociologist attempted to recycle the concept of environmental biodiversity into the terra incognita of human neuro-physiology, ushering in “neurodiversity”, the questionable belief that autism, dyslexia, dyspraxia, dyscalculia, dysgraphia, Tourette’s etc, are “normal” evolutionary variations of the human brain, and that any associated difficulties are only caused by a rigid, unadapting society, easily solved by the “social model” of disability.
Finally, because I do not want to derail myself into discussing the “neurodiversity movement” which is increasingly becoming a dangerous plague to the autism narrative, allow me to return to what I believe to have been a genuine revelation of hope, the Thinking Autism’s 2019 International Conference on Autism and Comorbidities.
I must confess, when I was invited to participate, I had little to no knowledge about Thinking Autism. My scarce knowledge of some individuals associated with it was tainted by still fresh memories of failed social media attempts to win them “over” to the “neurodiversity” side, feeling sorry for some of them for failing to understand the one true representation of autism. Oh, and if I have forgotten to disclose my not exactly clean little secret, yes, less than a year ago I was one of those condescendingly trying to convince the likes of Thomas Clements, a prominent critic of the neurodiversity movement, of how wrong he was. You may have guessed by now that I didn’t succeed. But if you think that it was Thomas’ arguments alone which ultimately converted me, you’re wrong. The fact that he spoke with the experience of someone like me, diagnosed with Asperger’s, also lovingly caring for his severely autistic brother, sent me to do my homework, to find out the real-life stories behind the scientific arguments.
If I were to summarise an abstract of this article, I couldn’t do it better than by quoting the Vision of Thinking Autism:
“We envision a world in which disabling symptoms of autism are fully preventable and treatable on an individual basis.”
If anyone genuinely wishes to challenge Thinking Autism’s brilliant vision, I am more than happy to stand up to the challenge. Why?
Because their vision has become my vision.
The rich list of the conference’s brilliant speakers further revealed that autism, far from being a purely behavioural disorder, may in fact have origins in the complex world of our DNA heritage, on molecular, cellular systemic levels
We are getting it wrong and ignorance is hurtingA few weeks ago, I read some posts on an autism support group that upset me profoundly. Questions were being asked about how to stop a child with autism from withholding bowel movements. Comments were made about small...
Finding your kindness: Autism and COVID-19 I’m holding my son’s hand as we walk through the parking lot toward the grocery store. People give us looks. He’s 17 and they likely cannot understand why we’re holding hands. We’re used to this but the judgement seems to be...
The social and medical models of disability What could possibly motivate a busy parent like myself, with not enough hours in the day, to take time out to write about the social and medical models of disability? The incentive, a very powerful one, is my son, who has...
The impact of auditory processing issues in autism It is well understood that many on the autism spectrum experience challenges with processing a range of sensory information. This is wonderfully covered in previous Thinking Autism blogs ‘Misperceptions of ASD...
As a Chartered Psychologist, child development researcher and author in the autism/ASD field, I frequently meet misperceptions of neurodiversity in relation to programmes for autism and health recovery. Somehow or other the belief has developed that to offer such help to an individual on the autistic spectrum is to deny their neurodiversity. In this blog I suggest a new way of looking at this subject…
I hope that my journey in vision therapy will serve not only as a roadmap for people with mild autism to find their way out of the labyrinth of disability but as something that can provide clues to help those with more severe autism find their way to a life more fully lived.
When discussing autism—especially on the internet and in the media—there are way too many people who recklessly engage in false dichotomy. It’s a kind of extremism that gets us nowhere…I can say with 100% certainty that while I seek treatments for my child with autism, my acceptance of him is unconditional.
What is wrong with The Labour Party’s “Autism Neurodiversity Manifesto” and autism identity politics?
Recently in the UK, a “Neurodiversity Manifesto” has been shared by the Labour Party. It has five key principles, each of them lacking in nuance, unreflective of the lived experiences, and ignoring research data.