Are the current ways of looking at "Neurodivergence" broken?
Living with autism, ADHD, dyslexia and other neuro-developmental diagnostic labels can be extremely challenging. If that were not the case these diagnoses would never have been created in the first place. Obtaining such a diagnosis can initially be life changing and provide great relief as you realise that your difficulties are not your fault, and that you have some explanation as to why you struggle so much to do things that others seem to be able to do with minimal effort.
Post diagnosis, many people continue to feel lost and whilst the diagnosis tells you that there is a reason you struggle it does little to tell you why and what you need to do to make life easier. Much of what happens next leaves you needing external help and reliance on health professionals, pharmaceuticals and the hope that the world will change around you to better accommodate you. To many this will be extremely disempowering and will likely not yield fast results.
Understanding the Complexity of Autism
Autism is extremely heterogeneous and as yet no single pathological identifying characteristic of autism has been discovered that is either consistent across all autistic people or not also present in the non-autistic population. In fact, given that the same label is given to people with very different difficulties, the idea that there might be a single identifying characteristic is unrealistic. For example, Temple Grandin (thinking in pictures), Ido Kedar (sensory-motor difficulties), Donna Williams (information processing), and Daniel Tammet (synesthesia) all have the same label of autism, and therefore broadly similar symptoms, but the causes of these symptoms are very different.
Because of this, the diagnostic process relies heavily on check lists of symptoms and therefore has to focus on specific difficulties because it is those which are consistent in the autistic population. The focus is most specifically on Part A of the DSM which identifies issues with communication and social interaction. The medical model focuses on difficulties and their impact on everyday life to reach a diagnosis. Unfortunately the focus on this difficulty leads to the identification of autism having a very negative focus and portrayal and leads to much stereotyping.
The Rise of the Social Model
In recent years we have seen a rapid rise in a movement which is trying to move away from the medical language used around autism, ADHD, dyslexia etc. It is extremely popular on social media and has provided belonging and acceptance to people who have felt alone and possibly even broken their whole lives.
One of the main objectives of the social model is to move away form the negative diagnostic language of the medical diagnosis, focusing on people simply being different rather than having a condition. In order to create a less pathological dialogue the tendency has been to focus on traits instead but this is causing a lot of confusion as these traits are neither consistent across the whole autistic population nor are they completely absent form the non-autistic population. In fact, often the only difference in traits between the autistic population and the non autistic population is a matter of degree and impact on everyday live - leading to the misunderstanding that ‘everyone is little bit autistic’.
Confusion and Misappropriation of Labels
What we are now seeing is a cherry picking of either the social model or the medical model despite that fact that the two models have completely opposing views on on what autism is and how it should be perceived and accommodated. For example, because various autistic authors have managed to identify issues that underpin their difficulties, there is now a menu of causes of autistic symptoms that people can identify with and use to explain their difficulties. Things like processing issues, sensory issues, and issues with attention and focus. Or alternatively, there is a lot written about ‘Asperger Girls’ so a women diagnosed with autism then believes that what is written about Asperger Girls must also apply to her. A common misconception is that if you are an autistic female then you must have put a lot of effort into learning to mimic social interaction in order to fit in. This is true for some, but by no means all. Confusingly, some males put a lot of effort into learning social interaction, so this isn’t even a trait that separates autistic females from males.
All this is leading to confusion and misappropriation of labels in an attempt to explain difficulties.
Alternatively, people treat autism as something that isn’t heterogeneous and make the assumption that everyone’s autism is like theirs. They ‘identify’ with being autistic and then attribute certain behaviours and/or difficulties to their autism. A common thing that people say is ‘My autism makes me XYZ’.
This just compounds the confusion!
Is it Time for a New Paradigm?
Fundamentally what we are seeing is the grouping together of a very broad and diverse group of people who despite a diagnostic label and similar struggles in life in fact have very little in common with one another. There is often not enough commonality to group them all together without oversimplifying the real difficulties, strengths and needs of the individual. This is why people with similar ‘autisms’ tend to group together and why they find it difficult to understand people with different autisms to themselves.
Surely there has to be a better way of thinking about all this?
Currently, the diagnostic process is used to identify who needs protection and support to manage everyday life, education, and work. You need a diagnosis in order to access certain services. If this is removed, the impact on the most vulnerable in society will be severe.
However when we look at autism or other neuro-developmental conditions, we are looking for a diagnostic process that is trying to identify whether an individual fits a predefined criteria. There are two possible outcomes; autistic or non-autistic. What is underneath that positive or negative diagnosis is not explored, it is also reducing that complex individual (all individuals are complex) to just two categories - or four categories if combinations of two possible diagnoses (eg autism and ADHD) are considered at the same time.
A New Way Forward
So what if instead of trying to fit people into predefined categories we instead explore individuals without predefined outcomes? If we can better understand WHY an individual struggles with social interaction instead of simply THAT they struggle we can begin to explore effective strategies that empower that individual. If we can understand also why certain strengths exist we can also use that within the strategies to help that individual develop and grow.
What if, instead of categorising people into diagnoses, we could identify a set of underlying issues such as processing issues, sensory issues, focus issues, and others and explain how these combine to create the unique pattern of weaknesses, difficulties and strengths of an individual? Would this help?
Well there is an immediate issue: people no longer get categorised into autism/not-autism and or ADHD/not-ADHD. Instead, there are no hard boundaries. But the boundaries between autism/not-autism and ADHD/not-ADHD are not clear cut and over the years there has been an element of ‘threshold creep’ which lowers the threshold of difficulties experienced in everyday life in order to get a diagnosis.
However, this is perhaps not such a big problem as it would seem.
It is already the case that a diagnosis is based on the severity of difficulties and this approach would not change that. The difference is that instead of just describing difficulties, there is an understanding of WHY these difficulties are occurring. This means that those who do not meet the threshold for a diagnosis can still receive practical advice on how they can make life easier for themselves and perhaps receive some mentoring to facilitate that.
Aspiedent is part way towards developing such a new paradigm with the ‘Integrative Cognitive Profiling Framework’, but this is very complex and time consuming to apply. We need a way of making it more accessible.
To this end, a new company, Minds in Depth, is exploring the use of a membership site to support and teach parent and carers to apply ideas from the Integrative Cognitive Profiling Framework to help their children. If this is successful, it can be adapted for other groups.