I was actually asked ’Do you live at home with your mummy’ when I was 39 years old. The question was asked by a person I would have hoped would know a little more about autistic adults and our varied experiences of the world. The person asking me that was an employee of a large autism support organisation during a conference I was attending as a speaker. It was certainly an odd sort of question but sadly not unique or even all that unusual. As an autistic person I am quite used to these kinds of questions. They come from a place of paternalism. Paternalism is experienced by people from all sorts of groups. It is insulting to have assumptions levelled at me that bear no relation to who I am or what I do. My main concern with this stuff is that it often betrays a power dynamic where the person making the statements thinks the other person is somehow less valuable or worthy of respect than them. I live in a world where everyone has equal value and worth and so find paternalist attitudes offensive beyond my own personal annoyance.
Paternalism often seems to come from the view that autistic people are eternal children. In fact the etymology of paternalism come from a word for father. A father – in traditional terms at least – is viewed as the head of the household. They make the rules, they are where other family members go for wisdom and advice. The father goes to work and makes money. Simply put the father has the power. This is precisely what I feel when I face paternalism – that I am disempowered and seen as unimportant. I feel like I am a child being parented.
Paternalism also encompasses things like controlling and ablesplaining. Statements like ‘Are you sure you want to buy that?’ Doing things to ‘fix’ elements of an autistic person’s life which are actually working OK and ‘helpful’ unsolicited translation of what an autistic person is saying to another person. These things are infuriating and frustrating.
Paternalism belittles our experience. I don’t know a single person who likes it. Acts of paternalism are like someone taking on an unwanted role of parent and wanting to help you by ‘looking after’ you when actually that isn’t something you need or have asked for! It is a form of invalidation – you are not seen as your adult self but as somebody’s child. I am yet to meet a human being who has expressed an interest or liking for being treated paternalistically.
To the person doing the paternalism they are often missing out on you being who you are – your skills and attitudes insight and wisdom.
Another sort of spin-off issue from paternalism is one that if anything I like even less – tokenism. Sadly I have been on my fair share of committees where it is clear that I am there so that the organisation can tick the box and say they have autistic representation. It is not the box-ticking which upsets me so much. Organisations knowing it is a good idea to have autistic representation is not necessarily a problem at all. My concern is when autistic people are on those committees and their ideas and wisdom and insight and perspective is ignored. Arrangements where autistic representatives have no say or when they say things are belittled or ignored – That is what I think tokenism is. It is really counterproductive. I think it is probably worse than having no autistic representation that having a token person on committee who is ignored and only has the role for the sake of ticking the box. It really isn’t that hard to include people’s views so it surprises me how often this still happens. If we are in a position of influence on a committee we need to be included and what we have to offer appreciated otherwise it is just a means of an organisation wanting to look better in the community. That is not something I condone and for the autistic people in those situations can cause a lot of stress and inner conflict.
Is there a solution to all at of this? Yes there is and it involves listening and respecting autistic people. Instead of assumptions of incompetence and unhelpful stereotypes, pease see us as equals – friends, colleagues, fellow travellers in the funny old world of ours. Don’t assume – ask and unpack and consider your attitudes if you have an issue in this area. If you approach another human being through a lens of thinking you are somehow more mature and ‘better’ than them you have almost certainly lost that person right away. Instead approach others with an open mind and empty your mind of preconceived notions or success or value or worth or maturity.