Abstract
One way I think about life is that everyone is dealt a deck of cards when they are born. You mostly only hear this analogy in a negative way, like ‘playing the disability card’. But it can be a helpful, positive way of looking at life. Look at each skill or deficit a person has as being a separate card, and it becomes clear that the cards can interact with one another. For example, in the board game Monopoly you could get a chance card containing a fine. If you have sold property and therefore have the cash, the card will make a very small impact on you, but if you did not have the cash, you could be out of the game.
If you are working with autistic people you could make physical playing cards and ask them to put a strength or deficit on each card. This appraisal approach can be helpful for family members as well when introducing them to the idea of autism. Also, thinking this way can encourage people to work with the strengths, to improve the difficulties a person has.
Autism is often talked about just in terms of deficits and/or savant abilities. But this does not give a well-rounded picture of the humans being described. The autism community has expressed discomfort around discussing autism in this way. Personally, I agree that I have deficits that mark me out from non-autistic people, but I also have strengths that distinguish me. When thinking about anyone, including an autistic person, you have to look at the whole person. Because autistic traits can be seen in other humans, what makes you autistic is the particular collection of abilities and deficits you have, and the intensity to which you experience them.
Sometimes I feel that working with the wider autism world outside of academia is not a primary focus of researchers, and dissemination is sometimes just done to tick a box. This is a shame, because from each research study there can often be something learned and even if this is small, small things can make all the difference. When I work with professionals, I often suggest they try looking at the world through the lens of weak central coherence (Happé, 2005), because this is how many who are autistic will look at the world, that is, taking in the details first. To solve a problem or provide support to an autistic person you have to understand their unique perspective, thinking about their particular deck of cards. Research findings can help us do this, as long as, when we apply them, we listen to individual voices.
All autism researchers, including those who are not actually interacting with humans (e.g. those working with animal models), need to understand the impact of their work on autistic people. Many members of the autism community feel at odds with the research community, and some autistic people describe feeling like lab rats, or self-narrating zoo exhibits (Sinclair, 2005).
Two papers in this special issue on ‘Women and Girls on the Autism Spectrum’ consider strengths as well as difficulties of autistic people and seek to engage with their perspectives and needs (Kanfiszer, 2017; Webster and Garvis, 2016). As a result, they explore and communicate about often-neglected parts of autistic experience.
Kanfiszer (2017) talks about gender, reflecting the fact that many autistic people identify as non-binary, transgender or gender-fluid. In my experience, it is imperative that you ask individuals how they identify and how they would like to be described, including what pronouns they would like you to use. This seems obvious but in practice often does not happen, just as with asking people if they prefer not to make eye contact. Gender identity has been something that the autism community has been discussing for many years, yet still on many surveys and questionnaires given to autistic people, respondents can only identify as male or female. For people who think details first it may not feel comfortable ticking the male box if they identify as transgender. A simple work around is to make it clear that you are including people who identify as transgender by saying male (including transgender men) and female (including transgender women).
If we really want to make a positive change for autistic people and their families, we have to consider how we speak to members of the community and those around them, and how we speak about them. Recently, I joined a queue for the disabled toilet at a busy theatre – most of the time I manage with the usual toilets but I am visually impaired and can find it hard to navigate very busy areas. The person ahead of me said they would not mind if I went ahead of them as they just needed a gender-neutral toilet. This is an example of self-advocacy that some autistic people may find difficult. They may struggle not with their feelings around gender or other issues, but with communicating these to others and having them listen.
The same goes for using identity-first language (i.e. ‘autistic person’) versus person-first language (i.e. ‘person with autism’). Many, but not all, in the autism community have expressed their preference for identity-first language (Kenny et al., 2015). By contrast, I personally prefer person-first language, but I try not to use it in the public domain as it causes offence and can distract from whatever point I am trying to make.
Webster and Garvis (2016) suggest that success may look different in the eyes of an autistic woman compared to non-autistic women. When recruiting for their study they put out an open call for women who self-identified as successful, rather than stipulating what kind of success they were interested in. One of several factors that they identified as promoting success was having people around you whom believed in you. The authors remark that their participants did not see themselves as victims in spite of many experiencing adverse life experiences. To me this seems obvious, because I think in a weak central coherent way: rather than comparing an individual’s life with everyone else in their age group, socio-economic background, geographical location and so on, I see that they experienced a challenge, learnt to overcome it and carried on.
Something else worth highlighting is that Webster and Garvis (2016) cite Chamak et al.’s (2008) study, which found that autistic people listed emotional regulation and unusual information processing as their core difficulties, rather than the repetitive behaviour and social communication problems which are the scientific community’s agreed core autistic deficits. This is another example of researchers listening carefully to autistic people and as a result learning and expressing the diverse views of the autism community.
The studies of Kanfiszer (2017) and of Webster and Garvis (2016) both take a fresh approach resulting from their respect for the perspectives of autistic people. This means accepting that human experience is very diverse and that there is no one ideal way to be. As professionals I think when we work with people or design a study, it is important to ask the question ‘who’s ideal is it anyway?’ Surely everyone wants to be happy, but who says what that should look like?