My Son’s Autism and Disability: Unintended Consequences of a Polarised Debate
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 profound autism and epilepsy.
The issue of the application of these disability models to autism has a bearing on the way autism is presented in the media and viewed by society, the response of medical professionals, the shaping of policy and the kind of research that is carried out. In other words, the way people perceive his disability will directly impact how he will be supported or not by professionals, and how his needs will be prioritised or not by our society.
This is not an academic treatise. My main and most pragmatic concern is the implications of the current modelling of disability for my son. I also have an interest in its effect on the immensely diverse and rapidly growing population who share his diagnosis of Autism Spectrum Disorder (ASD).
“The adoption of the social model by many influential advocacy groups has resulted in their dismissal of the concept of potential autism treatment or cure…
Yet for my son and many others, it is clear that the benefit of a cure or effective treatment would be immeasurably greater than any social support or adaptation.”
The social model
Although a number of different models of disability have been defined, debate in recent years has largely centred on the social and medical models. According to Wikipedia, the social model “…identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in making people with impairments…unable to participate fully in society.”
If you consider this definition in relation to many people with limited mobility, for example, it makes sense. Without societal adaptations, they may be unable to work, go shopping, drive a car, even leave their home. The provision of a wheelchair, ramps, stairlifts and adapted vehicles will remove barriers and enable them to be independent and productive members of society.
It gets rather more complicated if you apply the social model to autism, particularly because of the breadth of the autism spectrum and the enormous diversity of presentation.
Let’s first consider the minority of people with autism who would formerly have been given a diagnosis of Asperger Syndrome before it was subsumed under the ASD umbrella; those with low support requirements, who are able to communicate their needs, thoughts and ideas. Barriers to full participation in society may include difficulty finding employment and coping with sensory overload, among many other things.
Can barriers be removed?
Societal accommodations may well be helpful in removing some barriers. The job interview process can be made more equitable and less daunting if employers understand that different approaches may be necessary to determine the suitability of a person with autism. A well-structured work environment and the appointment of a mentor may enable some autistic employees to cope with workplace stresses. Staff training could help foster tolerance and acceptance of difference. Such accommodations, which can make the workplace accessible to some people with autism and may be cost-effective in the long run, could work in everyone’s interests.
“Despite my son’s obvious and pressing need for social support, the social model of disability offers no convincing answers.”
It’s not so easy to see how societal accommodations can go very far towards removing barriers caused by issues such as sensory processing difficulties, a part of the diagnostic criteria for ASD. Many people with autism suffer from sensory overload, especially in places where there is a lot of noise and activity. Recently introduced initiatives such as ‘Quiet Hours’ in supermarkets, sensory rooms in schools and ‘autism-friendly’ screenings at cinemas will benefit children and adults with sensory processing difficulties in those specific settings.
However, in the context of the multitude of sensory stimuli which surround us in our daily lives, such measures represent little more than a hypoallergenic band-aid.
For those susceptible to sensory overload, unless wholesale dismantling of numerous social structures were envisaged, there will continue to be problems in many other areas of everyday life, such as shopping centres, busy streets, public transport, restaurants, pubs, night clubs, parties, football matches, pop concerts, fireworks displays, to name a few. For some people with tactile defensiveness, even the physical intimacy of a loving relationship can be problematic.
Societal accommodations are by no means a panacea, but they can undoubtedly improve quality of life for many people with disabilities, including ASD. The social model of disability is not controversial – unless it excludes other frameworks that may be even more important to people like my son and many others.
What autism means for my son
My son is 20, has very high support needs, minimal speech, and his communication is limited to basic requests. His sensory processing difficulties are severe enough to have a significant impact upon his attention, focus and learning. He can’t hold a conversation, talk about past experiences, or tell me if he is in pain. He has little awareness of danger, and needs round-the-clock supervision.
Unless an effective medical treatment is found, he will never be able to keep himself safe or make any important decisions for himself, and will eventually require some form of closely supervised residential care for the rest of his life.
That is the stark reality of the impact of autism on my son.
Clearly, social support is absolutely vital for my son. Once we his parents are no longer able to care for him in our home, he will be completely reliant on social care. This hard fact fills me with the dread and fear which will be familiar to other parents of children with severe disabilities, who, like me, are kept awake at night by the unremitting question, “What will happen to my child when I’m gone?” And yet, despite my son’s obvious and pressing need for social support, the social model of disability offers no convincing answers.
The truth of the matter is that it is my son’s impairments which prevent him from participating fully in society, a fact upon which societal accommodations will have little bearing.
…the blanket application of the social model of disability to all manifestations of autism does not work. Furthermore, it is damaging to my son’s life chances, and those of thousands more.
Autism, economics and realism
The number of people diagnosed with ASD has exploded over the past thirty years. A recent government report revealed that the autism rate among school age children in Northern Ireland had reached a staggering 1 in 34. There has been a sharp rise in demand for special needs education which has stretched the budgets of local authorities to breaking point. As young people age out of school, there will be similar pressures on adult support services and residential care. A 2014 report by the London School of Economics estimated the lifetime cost of supporting someone like my son, with ASD and high support needs, at £1.5 million. This is an eye-watering figure, especially when multiplied by the relentlessly rising number of similarly affected individuals.
My fear is that provision for my son will always be a hostage to the economic fortunes of our nation. When the chips are down, will my son’s needs, and those of his peers, be prioritised over myriad other competing interests? As much as I would like to believe that social welfare concerns will always trump economic considerations, and the vast sums of money required for high-quality lifetime care for my son will be found, I’m afraid my sense of realism is too strong.
The social model of disability does little to allay my fears for my son’s future, or to help me sleep at night.
Limitations and pitfalls of the social model
But even if, in some imaginary utopian world, a free-flowing cornucopia of social support and societal accommodations for my son were guaranteed, would that ensure the removal of barriers to his full participation in society, as framed by the social model of disability?
Clearly, it would not.
Sadly, however much support is available, however many accommodations are made, my son will never be able to participate in society in most of the ways his non-disabled peers are able to do. In the absence of a breakthrough treatment to address his actual disability, he will never have a chance of getting a job, being independent, developing close friendships, falling in love, getting married, having children or grandchildren; none of these timeless aspirations will be attainable for him.
The truth of the matter is that it is my son’s impairments which prevent him from participating fully in society, a fact upon which societal accommodations will have little bearing. In my view, the blanket application of the social model of disability to all manifestations of autism does not work. Furthermore, it is damaging to my son’s life chances, and those of thousands more.
“Clearly, if my son’s disability were cured or corrected, then all the barriers to his full participation in society would be completely removed…he may well have greater independence and freedom; for example, improved communication skills might enable him to exercisea greater degree of choice and control over his life.
If the medical model has the potential to improve, even transform the lives of people like my son, why then is it rejected by so many autism advocates and organisations?”
Unfortunately, the adoption of the social model by many influential advocacy groups has resulted in their dismissal of the concept of potential autism treatment or cure. Indeed, it is now the convention to place quotation marks around the word “cure” when applied to autism, to indicate that it is inappropriate or perhaps indelicate, and the term ‘curebie’ has been coined as a pejorative description of those who, like me, are in favour of finding one.
Yet for my son and many others, it is clear that the benefit of a cure or effective treatment would be immeasurably greater than any social support or adaptation.
The medical model
If the social model of disability offers no satisfactory solutions for my son and others like him, could the medical model provide an appropriate structure? At first sight, it would appear to do so. According to Wikipedia, “the medical model focuses on curing or managing illness or disability” and the aim is that the “disability will be diminished or corrected”.
Clearly, if my son’s disability were cured or corrected, then all the barriers to his full participation in society would be completely removed, and he would have no need for societal accommodations. If his disability were managed or diminished, he may well have greater independence and freedom; for example, improved communication skills might enable him to exercise a greater degree of choice and control over his life.
If the medical model has the potential to improve, even transform the lives of people like my son, why then is it rejected by so many autism advocates and organisations?
“Of course, people have every right to view their own autism as an identity, if they so wish. They have the right to consider that any perceived benefits of autism outweigh the negatives, in their own case. Should a treatment for autism be developed, they would have the right to reject it — for themselves.
However, they have no right to speak for my son…nor to oppose treatment or cure on his behalf.”
Autism as an identity
One answer lies in the recent trend to frame autism as an identity, akin to sexual orientation or ethnicity, rather than a neurodevelopmental disorder or disability. The term ‘neurodiversity’, generally used to denote a supposed natural, non-pathological brain difference, is sometimes used interchangeably with autism. Prominent researcher Simon Baron-Cohen has suggested that autism should be viewed as a normal variant, like homosexuality and left-handedness. National Autistic Society ambassador Chris Packham recently reacted with outrage on Twitter to a reference to autistic people as disabled, tweeting that it was “an abominable insult beyond any comprehension…”
If autism is viewed as an identity, rather than a disorder or disability, it follows that a medical approach would be considered inappropriate, even harmful.
Of course, people have every right to view their own autism as an identity, if they so wish. They have the right to consider that any perceived benefits of autism outweigh the negatives, in their own case. Should a treatment for autism be developed, they would have the right to reject it — for themselves.
However, they have no right to speak for my son, whose challenges are so very different from theirs, nor to oppose treatment or cure on his behalf.
By definition, those who advocate for the social model of disability and oppose research into autism treatments have the privilege of far more sophisticated communication skills than those possessed by my son and many others, whose need for medical solutions to their profound disabilities should not be denied simply because they are unable to speak up for themselves.
By the same token, those with good communication who would nevertheless opt for treatment to alleviate unwanted symptoms should not be ignored or dismissed because their standpoint does not support the framing of autism as an identity.
Overmedication, incarceration and abuse
There is another possible reason for the rejection of the medical model of disability by many autism advocates, one with which I have much more sympathy; that treatments which are currently administered to people with autism can be ineffective, inappropriate, may have adverse side effects and only address superficial symptoms, not the underlying biology.
Antipsychotic medication is prescribed to both children and adults with autism and challenging behaviours, often with the aim of reducing aggression and self-injury through the tranquillising effect of the drugs. However, these drugs can have significant side effects, such as weight gain, potentially leading to diabetes, as well as seizures and respiratory infections among others.
There is growing concern that antipsychotics are being used inappropriately as a chemical restraint, without investigating and addressing the underlying causes of the behaviours. Indeed, in 2016 NHS England launched the STOMP initiative (Stopping over medication of people with a learning disability, autism or both) with the aim of ensuring that psychotropic medication is only given as a last resort.
“The framework created by advocacy groups in opposition to treatments and the medical model of autism may well have had an impact on research funding priorities…along with my son’s life chances, and those of many others like him.
…those who stand in the way of such endeavour are complicit in a breach of the human right to the highest attainable standard of health”
The medical model of disability is further undermined by the horrific track record of the euphemistically named Assessment and Treatment Units, in which children and adults with autism have been incarcerated, often hundreds of miles from their families, and subjected to a litany of abusive practices, such as solitary confinement, overmedication and violent restraint. At least 40 vulnerable people have died in these units since 2015. One young man, Connor Sparrowhawk, was left unsupervised in a bath, where he had an epileptic seizure and drowned, aged 18.
When such negligent and brutal practices are inflicted by the medical establishment and masquerade as ‘assessment and treatment’, it is little wonder that there is such widespread disillusionment with the medical approach to autism.
Autism research indicates autism may be treatable
Nonetheless, however egregious such malpractice undeniably is, it cannot justify the wholesale rejection of all medical research into autism.
In recent years, there have been a number of promising studies which strongly suggest that at least some forms of autism may be amenable to treatment. For example, in 2017, a small but ground-breaking clinical trial found that a 100-year-old drug called suramin had dramatic effects on core autism symptoms, with two non-verbal participants reported to have spoken the first sentence of their lives shortly after treatment. According to Professor Robert Naviaux, lead researcher, the main conclusions of the study were as follows:
“1) For many children, the symptoms of autism are not permanent and can be improved dramatically with the right treatment; 2) A treatable metabolic syndrome contributes to the core symptoms of autism and 3) A single treatment with low-dose suramin was safe and produced significant improvements in the core symptoms and metabolism associated with ASD.”
A drug called bumetanide has also been shown to ameliorate symptoms of ASD in a number of trials, and in another study, microbiota transfer therapy, a treatment targeting the gut microbiome, resulted in major long-term reduction in core autism symptoms.
However, despite their promising results, these studies have attracted little attention in the media, and funding for larger trials has been elusive. The 2017 suramin study was funded by private donations, and funding issues have meant that the second phase trials have not yet begun. The researchers who carried out the successful microbiota transfer therapy trial have had to resort to crowdfunding to finance a subsequent study. The first bumetanide studies were carried out in 2010, but ten years later, translation into clinical practice still seems a long way off.
In the intervening decade, my son’s childhood and teenage years have passed by, and he has entered adulthood, with no prospect of accessing any of these potentially life changing treatments.
While there may be a number of factors affecting the funding of the clinical trials, it is entirely reasonable to suppose that the framework created by advocacy groups in opposition to treatments and the medical model of autism may well have had an impact on research funding priorities…along with my son’s life chances, and those of many others like him.
If, as recent studies suggest, medical research is on the cusp of discovering treatments which could improve language, functioning and quality of life for people with autism, it might be contended that those who stand in the way of such endeavour are complicit in a breach of the human right to the highest attainable standard of health, as enshrined in the constitution of the World Health Organisation and in the Universal Declaration of Human Rights.
“It’s time to move away from the artificial dichotomy between the social and medical models, and instead draw on the benefits of both“
The way forward
Having considered both the social and medical models of disability, and the ways in which they are widely interpreted, I conclude that neither can independently address the complexity and heterogeneity of the autism spectrum. These models are not mutually exclusive, and given both the evolving research and the diversity of lived experience of hundreds of thousands of people, it is at once facile and doctrinaire to require that we should choose between them.
In Mahatma Gandhi’s famous words, the true measure of any society can be found in how it treats its most vulnerable members. All disabled people, including those with autism, should be enabled and empowered to achieve maximum quality of life, to which end as many societal barriers as possible must be removed, and a climate of tolerance, inclusion and support should be fostered.
At the same time, we should welcome advances in medical knowledge which could potentially lead to life changing improvements for many, and research into effective treatments should be actively encouraged and adequately funded. These positions are complementary rather than antagonistic.
It’s time to move away from the artificial dichotomy between the social and medical models, and instead draw on the benefits of both, in order to give people across the entire autism spectrum the opportunity to live full and rewarding lives.