Despite a burgeoning of trainings and autism awareness initiatives, the truth is that the actual awareness of what autism is and⏤more importantly⏤feels like as a lived experience remains woefully low. The purpose of this blog isn’t to point the finger: I knew next-to-nothing about autism until I found out I was autistic, so I don’t expect other people to be any better. The problem? Autism training and research is so infrequently autistic-led, which means that all that is communicated about autism is what it looks like from the outside⏤and this is misleading and results in a bad type of knowing-about-autism. Below I have listed five things I think everyone ought to know about autism, in the hopes that this will be a small step in redressing what I see as a kind of programme of mis-information that currently presents itself as autism-awareness. So. Here we go.
- Autistic people generally don’t like person-first language; this means saying ‘person with autism’ instead of ‘autistic person’ (for me, autistic and autist are fine too). Using person-first language is generally held⏤by the neurotypical population⏤to be better because it sees the person as separate, and not defined, by the condition. Autistics see autism as part of who they are; it is fundamental⏤in most cases⏤to our identity, as it informs how we perceive, feel and are in the world. Consequently, most of us prefer identity-first language: we are autistic people.
- Autistic people have empathy. In fact, we sometimes have much higher levels of empathy than the average person⏤and this includes empathy with animals, which is why many of us are vegan. However, autistic empathy may look different to neurotypical empathy: we’re not touchy-feely people and may not make the ‘right noises’ to communicate the depth of what we feel. Know this, though: the double-empathy problem is a research finding which suggests that neurotypical people have as hard a time reading the emotions of autistics as autistics do them. Autistic lack of empathy is the biggest autism myth there is. It is not true. Let’s move on.
- Autism is not a spectrum. That is, it is not a linear spectrum where a person has more or less autism according to a sliding scale. Rather, autism is more like a ‘bag of things’ or attributes; all autistics are different and have different combinations of autistic attributes in different ways and to different extents. For example, although someone’s autism might be very obvious⏤they may tic or be non-verbal⏤they may have less trouble with sensory stimulation and getting overwhelmed than someone who looks less autistic to the untrained eye. This is problematic because obviously autistic people can be underestimated⏤and people who pass for normal don’t get the support and adjustments they need to be OK. Autistic people don’t like functioning labels (‘high’ and ‘low’) but prefer instead to talk about support needs⏤which are much more variable and take account of the fact that autism has a spiky profile, and this is key: if you don’t know what an autistic person needs in terms of support, ask; do not assume that if an autist can do one thing they can therefore do another. Never, ever, say, ‘you don’t look autistic’; although we know it’s well-meant it really invalidates the ways in which we struggle to get through the day.
- Any behavioural therapy for which the aim is to make an autistic person look more normal is harmful; specifically (you may come across this so please take note) ABA therapy is regarded by many autistic people as abuse. Many autistics have chronic PTSD for reasons. Support us as we are and let us be⏤different but equal.
- When an autistic person says they can’t do or stand something, please believe them. We are hyper-sensitive in multiple ways and we are not just making a fuss. We don’t need to be helped to tolerate things we find intolerable; making accommodations is finding another way⏤this is how you address accessibility. Questioning whether an autistic person really can’t do something is not empowering them⏤it is gaslighting.
I am really grateful that you have taken the time to read this post. This is how we raise awareness, one autistic blog at a time. Finally, I just want to add that a lot of what passes for ‘autism research’ is nonsense (although I’m not going to name names here) so stay alert people⏤and spread the word!
Dr Stephanie Aspin 