Transcript
Amy Pearson Autistic people do not lack empathy. Some autistic people might really struggle to understand the thoughts and feelings of other people, but we see that among the general population. What we do know is that autistic people and non-autistic people sometimes struggle to understand each other. And Damian Milton has explained this through something called the “double empathy problem,” which explains difficulties in communication between autistic and non-autistic people through showing that social communication is bidirectional.
So, when we communicate with others, we draw upon our own experiences, different contexts that we might have had, and all of that influences how we interpret what other people say. Because autistic people and non-autistic people have had differing experiences of the world growing up, it can sometimes mean that their communication is misaligned. So, it might make it difficult to understand each other and lead to breakdowns in communication. In addition, some autistic people experience something called alexithymia, which is a difficulty in understanding your own internal emotional states. And that can sometimes make it more difficult to recognise and understand the emotions and feelings of other people, whether that be interpretations coming from things they say, or interpreting their facial expressions [pause].
Autism is not a boy thing, it is not limited to boys or males, but historically, a lot of the research that had driven our understanding of autism has been conducted with young boys, so both Kanner and Asperger’s original sample had mostly male participants. And what this meant was that our idea of what autism looks like was based on a very limited sample of a presentation that we see in young males. Now, this doesn’t mean that all young autistic boys look the same, either. What we’re starting to realise, as research delves more into the presentation of autistic people, is that autistic people are incredibly varied, or heterogenous. So, they tend to differ from each other as much as they differ from neurotypical people.
One of the difficulties we have seen in recent years is that relying upon a particular presentation of autism has led to underdiagnosis across particular groups of people, so autistic women and girls and non-binary people, autistic Black people and other people of colour. And gradually, we’re starting to develop a better understanding of what autism looks like outside of young males [pause].
It is not possible to grow out of autism. Autism is a neurodevelopmental difference, which means that it is present from birth, and it is something that you will experience across the lifespan. We do know that autistic people sometimes differ across the lifespan in how they present their autistic characteristics. So, this might mean that when people are particularly young, they might appear more visibly autistic to outsiders, and as they get older and learn how to cope with their environment, they may appear less visibility autistic to people who are externally observing them.
We also know that many autistic people experience something called “masking,” and this is the suppression of aspects of identity and particular autistic traits or characteristics. And this can be to fit in within social situations, make friends and socially affiliate with others, but it can also be to avoid social stigma. Autistic people experience negative judgments from others because of beliefs about autism, and those myths and misconceptions that people hold. So, many autistic people try and suppress appearing autistic to others, so that they aren’t judged negatively and don’t have bad experiences with other people because of that.
What this means is that some autistic people may appear less visibility autistic, and some autistic people might vary in their presentation that makes them appear less visibility autistic to begin with. But we know that masking has a really negative effect on autistic people, and this is something we need to conduct much further research into in future in order to understand the impact of suppressing autistic characteristics on wellbeing and mental health [pause]. There isn’t a yes or no answer to this one, unfortunately. In some ways, we all have autistic characteristics, and this is because autistic characteristics are human characteristics. The traits that we associate with autism are seen across the population, whether someone is autistic or not, and there is no hard cut-off line for someone becoming autistic. Autism is diagnosed often via how we externally present to a clinician, or whether we meet particular diagnostic criteria, grounded in a behavioural assessment, a developmental assessment, understanding our lives and our backgrounds.
Now, what this means is that we can’t really say for sure, based on how we view people, whether they’re autistic of not. There’s no set right or wrong answer there. Sometimes we like to make sense of difference by trying to relate to people. So, when non-autistic people say, “Aren’t we all a little bit autistic?” what they often mean is, “I experience things that are similar to that, and I’m trying to find a way to relate to you.” However, this can minimise some of the struggles that some autistic people experience, making them feel like they can’t ask for reasonable adjustments, or that the difficulties they experience won’t be taken seriously if they ask for help. So, we need to carefully consider what we mean when we ask, “Are we all a little bit autistic?” We all experience differing characteristics, and we’re all human, but it is worth acknowledging that some people tend to find certain things more difficult than others, and it’s important that we find ways to support people without minimising some of the struggles that they face [pause].
The idea that the autism spectrum is linear is a complete misnomer, and goes against the idea of a spectrum. So, when original discussions around autism as a spectrum arose, there was very much a consensus among Psychologists that autistic people were very heterogeneous, that they differed from each other in many different ways, that some people had social difficulties that meant that they might not be interested in social communication with others, and some people were really socially interested. Others had particular sensory difficulties that others didn’t experience, and some people struggled with language, while others didn’t, which meant that we saw a huge amount of difference across autistic people.
So, the idea of the spectrum was meant to capture this difference, that autistic people could present in a range of different ways that would make them different from neurotypical people or non-autistic people, but also from each other. Now, as time went on, the narrowing down of our understanding of autism meant that we tended to split people into two different sections. People who we classified as high functioning, and these were autistic people who usually had spoken verbal language, autistic people who had lower support needs, so didn’t need as much help with their daily living, in comparison to autistic people who maybe had far more support needs and needed a lot of help with their daily living, and maybe didn’t use spoken language.
Now, functioning labels can be quite problematic, firstly, because they are quite offensive. So, if we call someone high or low functioning, it’s putting an assumption on their capabilities and their capacity to understand the world around them, but the second reason is that functioning labels aren’t very specific. They don’t tell us very much about a person and what they need. So, if we say that someone is low functioning, we assume that that might tell us about their needs, their communication skills, but it doesn’t tell us as much as we could gain by saying something like, “This person is non-speaking,” or, “They need a lot of help with their daily living.” And the same goes for people who have been historically classified as high functioning. These people might have really struggled with their mental health, might have experienced difficulties throughout their lives, and the assumption that we can judge how much support they need based on a label, is really unhelpful.
So, instead of conceptualising autism as a line, from low to high, we can think about autism as being characterised by what is called a “spiky profile.” So, all autistic people have differing strengths and difficulties across multiple domains, so, things like their language, executive function, sensory experience, and if we want to provide support for people that is really meaningful, we need to consider how those differ across an individual. So, think about that constellation of characteristics, rather than conceptualising people on a straight line.