As we move forward in our learning and understanding of autism, we move away from the deficit-based model of autism (and language! Deficits in Theory of Mind, deficits in empathy, deficits in social skills etc) and lean in towards understanding the critical differences in the autistic individuals brain that make them different, not less. The cool thing about autism, brain-wise, is that their brain is one of hyper-connectivity so they actually experience things such as senses and emotions much more intensely than a neurotypical (NT) individual.
More and more research is being done to understand the autistic perspective, and importantly, more research is being done involving the voices of autistic people and autistic researchers themselves. In his autobiographical book “Look Me in the Eye,” John Elder Robison, an autistic author, talks how about how his discomfort making direct eye contact was often interpreted as a sign that he was “no good,” a criminal, or a sociopath. In regard to empathy in particular, John shares a memorable incident during which his reaction to the tragic news of a boy being hit by a train was misinterpreted. He had smiled from relief that it wasn’t someone he knew who was killed, but his smile was interpreted by his mother and her friend as him thinking the tragedy was funny.
John’s first-hand narrative lends us an eye into the inner workings of the autistic mind, as well as the difficulties that it can cause when a neurotypical person casts their perspective over it. Dr Damian Milton, an autistic researcher, refers to this as the double empathy problem.
The double empathy problem describes a situation in which two sets of people have very different world experiences where they therefore struggle to empathise with each other.
What we understand about autistic individuals is that given their brains work differently to neurotypicals, they therefore too show empathy and affection in ways that are different to conventional gestures. For example, I was working with a client for months, focusing primarily on establishing therapy to be a safe space and for me to be a safe person. We played together, with my following his lead. His affection was conveyed not through words or eye contact, which is traditionally valued, but in showing up every session and allowing me in his personal space, offering me pieces to build his tower with. I hear some non-speaking individuals, or those who are situationally mute, never call their parents Mummy or Daddy – but this is not due to lack of love in the slightest. They have other ways of showing their parents they mean the world to them and it is important to value their ways of communication.
Autistic individuals are supported to go to therapy, to learn ‘social skills’, to fit in with their friends at school.
But why does the burden of learning skills fall simply on the shoulders of the neurodivergent?
Research has shown that by Crompton, Ropar, Evans-Williams,Flynn & Fletcher-Watson (2020) showed that autistic individuals DO have sufficient social skills… amongst themselves. In fact, their level of information transfer was on par with information transfer between neurotypicals, with information transfer declining steeply when different neurotypes were made to interact (NT and autistic). Given that the world is primarily neurotypical, autistics are disabled by their sensory environment as well as having the burden to constantly ‘translate’.
In therapy yesterday, we were discussing a session where a child was having difficulties at kinder, experiencing meltdowns and school refusal. His mother reported “My child just needs to feel understood, that’s all he needs.” This is where the system has fallen down. It is the need of EVERY child to feel heard, understood and respected, but the system is failing to hear and respect the needs of the neurodivergent children, simply because they communicate in ways outside of the norm.
The Bronfenbrenner model of ecological support shows that each individual is supported and influenced by their wider surroundings, such as their family, school and more broadly, their culture. We need to start influencing the shift in families, schools and the culture of the neurotypical individual to accept and understand diversity of communication and understanding. More education needs to be done to put the burden of information transfer back onto neurotypicals, to see and understand the different ways that an autistic person communicates feelings and friendship. The problem of empathy is bi-directional, but unfortunately we are only addressing this in a singular direction at this point. When we only address how to make autistics better information sharers with neurotypicals, we encourage them to mask their true autistic traits. Masking has been proven to lead to worse mental health outcomes, including a higher suicide risk.
What Can We Do
> If you’ve got an autistic child, support them to understand their diagnosis and share it with those in the classroom. Some of my favourite books are “My Brother Charlie” by Holly Robinson Peete and “Uniquely Wired” by Julia Cook.
> If you’ve got a neurotypical child, read books like the above! We need to start taking it upon ourselves to educate ourselves about the different minds that we will encounter on a daily basis, whether it be out and about, in the playground or at school. 1 in 58 children in Australia are autistic, which is almost 2% of the population. Chances are in your child’s grade level, they will come across someone who is autistic.
>Some people I know like writing their own books about their unique make up and all the ways in which they show they care and are a part of the class. I love reading The Everyday Autism Series for this perspective.
> Read autistic authors and listen to the autistic voice. Princess Aspien is well known for her TikToks and YouTube videos on autism education.
>If you see an autistic individual when out, support your child to ask questions about why they may move the body the way they do, or communicate in their way. “Some people use their words to express their happiness, that person uses interesting noises to express they’re happy when they’re out!”. If they’re with a carer, ask the carer if it’s okay to approach them and talk to them directly.
> Support schools and classrooms to encourage inclusion and talk about diversity in all its shapes and forms – processing and communication as well as the kinds of festivals we celebrate, countries we come from and our skin colour.
> Speak up about autism. The louder your voice is, the more people get to hear it, the more they understand and move away from deficit theory.