I am going to start this Autism-related post with a mental illness example. Bear with me, I promise I’m not conflating anything and I know that Autism and mental illness are not the same thing (you would be surprised how often people feel the need to point that out to me as if as an Autistic woman I am somehow letting the side down by having schizophrenia!). It’s just this example demonstrates the attitudes around deficits thinking quite neatly and in a different context to my usual one.
In 2012 I was living in a residential mental health service. There was a lovely young woman who saw me as a bit of a role model. She would politely knock on my door and ask if it was OK to ask me a question, which I would always respond to the best of my ability. One day she knocked on my door and told me she had just been diagnosed with schizophrenia. ‘What does it mean? she asked. ‘Will I have to stop doing anything? Can I work?’ Having met her very critical, judgey father and knowing how the mental health professions tend to treat quiet young women with schizophrenia I responded with ‘It doesn’t have to mean anything except what you decide. People with schizophrenia work and raise families and study and everything else. Life is often harder but don’t listen to people telling you what you can or can’t do. Only you know yourself.’
Deficits thinking, an assumption of incompetence: these things cross different groups. Autistic people get a lot of deficits talk, assumptions and negativity around our potential too. When I applied for two graduate public service jobs in 2006 – one of which I was successful in – a wide range of people gave me deficits thinking about the apparently preposterous idea that an Autistic person could work in Government administration. One friend who is Autistic even told me I shouldn’t bother applying for the jobs because they weren’t autism friendly. I think I responded with ‘Well I had better make them autism friendly then!’ These attitudes run so deep.
Deficits thinking and an assumption of incompetence can have the following impacts:
- There is a concept in disability advocacy and service provision called the Dignity of Risk which means respecting a person’s autonomy and self-determination to make choices for himself or herself. Deficits thinking and assumptions of incompetence can also result in controlling or paternalistic behaviour form services, family and carers. It is hard to build your independence when everything you do – decisions and choices about living your life – is controlled on your behalf without asking your wishes. This often happens to people who require more day-to-day support and / or do not speak but can happen in a variety of settings and to different degrees of magnitude.
- Deficits thinking and assumptions of incompetence vary in scale and scope. Autistic people who are living independently and working can still experience these unhelpful attitudes.
- The self fulfilling prophecy effect. This is when deficits thinking and an assumption that Autistic people are incapable of certain things means that Autistic kids and young people especially are often not challenged or stretched. For example if 16 year old Tracy wants to take driver education but her teacher and / or parents don’t want her to in case she is a careless driver or they believe the process of going for her licence will be too stressful, then she doesn’t get a chance to try. So when she doesn’t drive it may be assumed she was unable to rather than that the truth being that she didn’t have the opportunity to try.
- People can internalise the negative messaging around the capability and lack of confidence in themselves. This messaging come from all over the place – popular culture, in accessing disability or other services, or from friends, peers or family members. They think there is no point applying themselves to anything because they have no chance of succeeding. This is one of he worst kinds of self criticism and can effectively keep someone from achieving what they would like to.
I will finish with another example from the book of Jeanette.
I was not diagnosed with Autism until I was 20. I had lived out of home for three years at the time of my diagnosis and was residing in the Women’s Prison in Melbourne. For many years every decision was made for me. I was institutionalised. There was no dignity of risk but just counting days and months and years in a hellish world.
After five years of this I was living in supported accomodation for people with mental illness. There were fourteen of us in a crumbling mansion. There were staff there during the day. We were not allowed to drink alcohol in the house. We had to attend all the group meetings, we had to do gardening once a week. I was accepted to University while living in this accomodation, which was described as psychosocial rehabilitation. In order to be allowed to stay in my accommodation and study my uni course I had to make sure I could attend at least one meeting at the house. I had to provide receipts for my food. The social workers were much worse at maths than me and there were always arguments about my receipts where I tried to convince the staff I was not fraudulently claiming amounts – stressful and infuriating all at once. It was the only accommodation option I had. Poverty plus disability ad mental illness apparently means no choice where you live.
Flash forward a few years in the Jeanette narrative. I own my home, I work in a high level job. I willingly support so many other people. I am an author, pubic speaker, active social media commentator. Could you imagine somebody telling me that I can’t have a glass of wine when I get home from work? Could you imagine someone in authority over me saying my job, which I have loved almost every day since I started over ten years ago, was too difficult and stressful and force me to quit? Could you imagine if I applied to speak at a conference and the organisers told me it would be too stressful for me so they would decline my application? No. It would be foolish and quite insulting but I have been in each of those situations – and sadly many similar to those – in the past.
Just as it would be foolish to underestimate my capability, it is a terrible and unhelpful thing to assume others cannot achieve their goals, that they should be shielded from any challenge or difficulty despite them wanting to do it. We will never know our true capability ad potential until we experience it. Enough of this. Really, enough. It’s high time to see people’s potential and not focus on what others assume they can’t do,