Autism Spectrum elicits a number of images, particularly of a rainbow (a colour for each condition) or a scale (from severe to mild), with the latter being the general clinical use.
But does this work?
On the one hand, there are differences in functioning between different autistic people, with some having high functioning and others low functioning. I use functioning because that is the clinical use of the definition – the ability to function, or carry out nominal activities of living, within the general society and world.
But then we have another question – is this definition right? In other words, does it, firstly, accurately relate to variance within Autistic conditions, and secondly, respect the human experience having the Autistic condition? Does it fit actual differences and does it fit how life, learning, society and daily events play into how people function?
I argue it does not. And to explain that, we need to broaden to some other ideas – the idea of validity, of fluidity, of subjective interplay, of accommodation.
First with Validity. Validity is an old concept still used in different forms (and under PC names) today. A person is valid if they can carry out all the necessary functions to live an independent life without extensive social or clinical support. Traditionally invalids, or people who were not valid, were separated into mental institutions, until evidence of mismanagement and abuse emerged in the 1960s-1990s and many were shifted into a “community model”… until again it emerged in some societies that invalids were not receiving or could not access good support, or faced extra hardship caused by changes in the state of society such as rises in cost of living. Now in some societies there is a mixture of Institutional Care especially for the severely and permanently mentally ill who pose significant risks in societies (think schizophrenia management units, or forensic psychology sections for the criminally insane), and differing levels of Community Care.
The problem of validity is as a categorical definition. We are pretty much “pigeon-holing” people. The pigeon-hole concept, for those unfamiliar, is an image of a set of shelves with narrow openings to put things in, originally homing pigeons for sending messages, then for documents, letters, and other things – essentially a way of separating and organising groups of things. Categorical thinking emerges from Pigeon-Holing, whereby we divide a spread or continuous, fluid population of things (people, objects, situations etc) into discrete, bounded groups. If you’ve ever filled out a form whereby what boxes you tick determine if you get or not get something, and how much you get it, you’ve been subjected to categorical thinking. We use categorical thinking because it’s a simple way to decide how to divide resources or make decisions, and in general it works.
Except for boundary cases. A boundary case is anything that is right on the boundary, cusp, or limit of a range or grouping. Think of dividing a group of schoolchildren into tall kids and short kids, for a game, so all the kids of the same height can play together without disadvantage. Now throw in a middle height child. Which group do they go in without anyone (other or them) having a disadvantage? Validity fails on boundary cases because validity is a binary category – you are or are not valid. It doesn’t allow for “being part valid”. Yet many people with disabilities or being differently-abled face lives where in some situations they do not require support, and in others they do. Or, in fact, they need both and neither.
The spectrum while useful in a very general sense, fails at finer details of the different needs of individuals. Instead people are shoved into broad groups and given same labels whether or not these are suitable for them. Thus they are also subjected to treatments and expectations for the broad group and not respecting the fluid individual.
Fluidity is a counterpoint to categorical thinking. It acknowledges the variation in human conditions. Under fluidity, the blunt cleaver of Validity is replaced by the finer scalpels of detail, of looking at a person’s individual conditions but also how those conditions express uniquely in them. We are each not the same, and even in identical situations we are still not the same, because we have the ability to choose how we respond to our situation, and to our emotions and thoughts on a situation. This includes the capability to learn, and to grow, and thus adapt to one’s limits or transform one’s flaws. Such a concept which we really already know, that how we see ourselves and react to ourselves and our reactions, and how we create change in ourselves for good or bad, I call for lack of a better name subjective interplay. Everyone of us has self esteem, and those with limited self worth likely will not manage as well in life as others. Considerations and acts of support needs to include supporting the whole person, and that includes their worth.
Validity is still useful when a person is clearly a gibbering wreck and needs to be in care. But otherwise each person deserves to have their unique case examined, and what support needed is tailored to their situation including how they see and rationalise themselves and their siituation. Fluid understanding of the spectrum means dispensing with categories of functionality and seeing each person on the spectrum at where they are – and where they are in each moment, and where they will be tomorrow, and the next day and so on, as they change and as things like stress, emotions, life events, and how others treat them, influence how much they actually can cope and live at that time and how their conditions express. Or really, how they as a person express.
There is an unfortunate case where policy, especially spending policy, is set to provide only in a categorical sense. In my country we have a “Supported Living Payment” which is effectively a generic invalid welfare wage. But as part of it one cannot work more than a given number of hours per week. Anyone determined (categorised) as able to, which we call “Work Ready”, is lumped into the valid group and then required to find full time work regardless of their unique situation. And so people without serious debilitation but unable to work full time or consistently work full time, but in need of financial or mental health support, cannot meet their needs and live in hardship – a position which long term worsens their mental health. There has been some changes which allow some invalids to work longer hours but at the cost they must now maintain those hours, and while people who leave the invalid category should be able to return if their situation reverts, many are simply banned because they have worked full time – the policy category states someone who has worked full time recently or now cannot be an invalid – because they are working full time. But that doesn’t consider the reality of their situation, what is best for them, and why they are doing this. But I have digressed (it’s a very concerning subject for me).
But any amount of changing our point of view, or giving respect to a person as a whole person and not something else, that is limited by accommodation. Accommodation is when others grant grace to a person to not fit their expectations, their prejudices, their beliefs about them and in this case about conditions they have. For the autistic spectrum, Accommodation means firstly that others, autistic and non-autistic alike, are understanding of the person and their situation, because without understanding there is no capacity to know what to accommodate. Then accommodation means to grant grace and allowances to the person where they are necessary, and after that when they are reasonable.
For example, a person with misophonia (experiencing debilitating pain in response to specific sounds), deserves accommodation as a necessity and will need it fairly constantly. A person who develops inflexible thinking patterns under stress, will need accommodation by necessity when under said stress because unless that inflexibility is overcome, avoiding negative consequences becomes harder. Necessary accommodations should always be provided. But as others give respect by giving accommodation so respect should be given back to them.
Beyond what is necessary, accommodation can be given but only where it is reasonable – there is being accommodating, and then there is not allowing a person to grow. It sounds unfair and painful, but when we are faced with challenges that prompts us to find better ways to take care of ourselves or navigate the strange world of meeting our needs through others. Though that is not the same as suffering from malicious or cruel actions of others, or from hardship created by unjust or unequal treatment from society. And people are human, they cannot accommodate every single thing all the time. There is a responsibility of give and take on the part of all people.
As well as being limiting in perspective, the Spectrum view does not consider how we can grow, and does not consider the actions of others and the consequences. A person’s “functioning” actually depends on how society labels them, and how others treat them, alongside any clinical diagnoses. A person may be viewed or policied as at the mild end of a spectrum, and be restricted in the support given to them, but because of their particular expressions of their conditions, they have difficulty with things in a way that their “category” does not consider. Additionally people around them put unfair expectations upon them, or incorrect views of their disability or differences, and this causes additional barriers that prevent more nominal living: The person has actual functioning lower than what they are labelled as, caused by how others treat them and and the lack of unique essential support. Likewise a person given good support and accommodation may grow to function better than expected and better than they may be labelled.
I have gone off topic and rather esoterically. This was meant to be about the Autism Spectrum, when I’ve talked about barriers created by how psychotherapy systems diagnose and classify us and how others treat us, and overcoming those barriers. So how does all this relate to Autism.
Again, as I said in a previous post, do not be quick to judge another as not autistic when they speak that they are. But likewise be careful in judgement of how able a person on the spectrum really is, and how that affects your behaviour towards them. We are not fixed points on a ruler – we move about on the spectrum as our day to day functioning changes, depending on on how autism is for us as an individual, those we live amongst and act with, and also our stress levels and the daily events.
Really, it’s about treating people like people and not like a label or something we believe.
And from my digressions, that applies beyond people to societies and policy.
After all, people are not diagnoses.