In the course of a presentation today I did something I have never done before – I spoke to a former ABA therapist. MY heart sank as she eagerly said ‘What do you think about ABA?’ For anyone who hasn’t come across it before, ABA or Applied Behaviour Analysis is an intervention used on autistic kids. It is essentially premised on making children ‘less autistic’ and uses a system of rewards and in many cases punishments to promote compliance. Almost every autistic advocate you will meet will say how damaging ABA is, doing things like forcing kids to make eye contact and coming from the premise that autistic reality is ‘wrong’ and in need of fixing. There is growing evidence as autistics who were subjected to ABA as kids grow older, that it causes trauma. ABA pretty much stands against everything I believe in and strive for. So being confronted with this enthusiastic young person was a little tricky to say the least! I was speaking with her before my presentation began and managed to explain my significant worries about ABA and the ethos driving it. She seemed very receptive to what I said. However throughout my talk she kept offering ‘pearls of wisdom’ based in her former career, which actually gave me a wonderful opportunity to talk about ideas of neurodiversity and the critical need for autistic people to have a positive autistic self-identity.
One thing the former ABA therapist said was that she used to do a lot of ‘work’ with cards showing emotions. I reflected that this is an approach to autism based very strongly in neurotypical experience and understanding. If you show me an emoticon, unless it is the happy, crying or angry face I have no idea what it means. Showing autistic kids pictures of cartoon faces displaying ‘emotions’ and expecting them to relate it their understanding of sadness or anger? That is never going to work! It’s like conducting an exam in a language the student is only vaguely aware of and doesn’t know any words of.
That exchange got me thinking about how a lack of understanding autistics’ experience of life and how we communicate can lead to some assumptions which not only make our own lives hard but also colour the attitudes toward autism in the wider world. There is a long-standing myth which persists that autistic people lack empathy and even the capacity for empathy. This was sold to us all as an evidence-based researched opinion….but I suspect the researcher in question was looking at the wrong things. An assumption about my capacity for empathy is something that happens relatively frequently: I will be talking to a person and I get a sense that I must be doing something ‘wrong’ and then after a while of conversation I realise the person I am speaking with is upset. When I know they are upset I immediately offer support and kindness and hope they feel better soon. The reason for my apparent lack of care was simply that I wasn’t picking up on their non-verbal cues. I c an only tell someone;’s non0-verbal cues if they are really noticeable. A neurotypical person might notice the person was upset a long time before me and thus they may seem to be more ‘caring‘ while I am seen as a ‘bit off.’ The difference between the neurotypical person and me is that I don’t notice or understand a number of communication cues that neurotypical people are more aware of: facial expressions and other non-verbal communication. I care just but I am not receiving the same information to alert me that the person is upset. Unless people understand that difference in the information that autistic people are receiving, it is maybe understandable why someone might think us uncaring. Once again, it is like the exam conducted in a language the student doesn’t speak.
Empathy is an odd thing because I have observed that while autistics aren’t always right in there with the caring response, when talking to a number of neurotypical people, I have experienced a complete lack of empathy for me and my autistic experience. I often get a response along the lines of ’your’e weird so I don’t really want to get involved in whatever issue you are having. Just go away and don’t bother me.’ So while I will be agonising as to whether i have been caring and respectful, a representative of the group who are thought to have the empathy thing down pat has just demonstrated the complete opposite! I suppose people choose whether or not to display empathy and not everyone is caring.
I find it easy too see things from a divergent viewpoint but I imagine that probably isn’t the case for people who have never seen life from a divergent perspective. It is really important for us divergent folks to advocate and represent, even if it is just to state that there are so many ways of expericening the world and the people in it and these are generally OK and perfectly valid.
And the former ABA therapist asked me to come back and do more work with the organisation I was speaking to which I was really happy about. There is that fine line of feeling the need to speak to people who are completely on the same page and it gets challenged quite often in my work. It was hard talking – and very hard talking civilly to someone who represented something so problematic but in fact I genuinely believe I changed some thinking today. It is so important for autistic people to be understood as a different culture with different ‘language’ and experience and not broken versions of their neurotypical peers in need of fixing. Our ‘language’ is as valid as any other ‘language’ and the more people know this the better the world will be for autistic people and those who work with us.