Saturday, 20 April 2013

Why We Need Autistic-only Groups

A furore erupted recently in a Facebook group for those on the spectrum, which turned extremely acrimonious. It began when an NT mother of an autistic child joined the group, looking for advice on how to best help her autistic child. Said advice was given, and proved very helpful. All fine so far… until more NT parents of autistics started joining, and after a bit some autistics expressed dissatisfaction with so many NTs joining what was meant to be an ‘autie-only’ group. The proverbial hit the fan, people took sides, and the debate became long, emotional and extremely tense and intense. I’m not in this particular group, but was alerted to it by some who are. One criticism that was frequently hurled, I understand, was that keeping NTs out was ‘discriminatory’.

This concept of ‘discrimination’ is one that needs looking at more closely however. There are basically two groups of ‘exclusionary’ groups. The first is that of what I will call ‘dominant groups’, ie the ones with the power. For these ‘dominant-only’ groups – or associations, or professions, etc – the purpose of exclusion is to maintain and perpetuate their ‘Power Over’, ie power over the lives of others not ‘like them’. It shores up the “-isms” of society (racism, sexism, classism, etc, etc), and so opening up such groups, associations, etc, to ‘others’, is an essential part of eliminating discrimination and inequality. It’s not that the ‘others’ desperately crave the company of the dominants, but that they want to either share the power and privileges more equally, or demolish them altogether. This is the context in which cries of ‘discrimination’ have been most frequently heard, and rightly so.

The other type of ‘exclusionary’ group is that of ‘minority’ groups (even if numerically, as in the case of women, they aren’t actually a minority) - the powerless, the excluded, the marginalised, the discriminated against. Like those of the dominant group, the result of their coming together is empowerment – but of themselves as themselves, not over others. ‘Power To’, not ‘Power Over’. It involves a lot of what in the early days of the feminist movement was called ‘consciousness-raising’, the “you mean you do that/have felt that/had that happen too? I thought I was the only one!” reaction. Connections are made, analyses of their situation shaped, agendas for change formulated, and eventually action is taken, and society begins – however glacially – to change. Exclusion is an important part of this process, or those personal truths will never be realised, analyses formed, etc, and the minority group’s perspective will continue to be overshadowed by the dominant people’s version of ‘reality’ - to the detriment of the minority. Discrimination is therefore a means of perpetuating privilege, that is practised by dominants, not minorities. Minority peoples, by definition, do not have the power to establish or enforce ‘discrimination’.

I am NOT saying there isn’t a place for some groups to be ‘mixed’, there most definitely is, provided the agenda is clear, and the ‘dominants’ are established allies. However, as well as needing minority-only groups for this consciousness-raising process to happen, there are certain delicate difficulties if all groups meant for ‘minorities’ to get together end up with ‘dominants’ in them. Firstly, there’s the simple issue of time and energy. On the one hand, we on the spectrum want NTs to listen to us, and frequently demand they do. We especially want NT parents of autistic children to listen to us, and are pleased when that happens. BUT – and it’s a big BUT – and I have to say this plainly – we are not here solely to act as unpaid counsellors, research assistants, child development experts, hand-holders, etc, to NTs, even those with autistic children. We certainly do want to help, we just don’t want to spend our whole time doing it (especially in groups which are meant to be for ‘us’). Our own lives are almost always fraught with difficulty, and need our constant attention. Moreover, there is a fine line between ‘feeling useful’ and ‘feeling used’. (Let me say here that I have been on the other side of this equation. Back in the 80s, I became involved in NZ’s anti-racism movement. Some of us Pakehas [white New Zealanders] at first asked the Maori activists lots of questions about racism, Maori history, culture, etc, etc. They answered patiently at first, then became increasingly terse. Finally, one Maori woman put it bluntly – “We’re not here to educate you, do your own research!”)

Secondly, we need ‘safe spaces’ – places where we can complain, bitch, moan, vent and even whinge about life, NTs, our difficulties, and how the world treats us. We need to be able to do this without worrying about NTs getting their feelings hurt, or getting defensive, or angry, or criticising us, or telling us how we should ‘fix’ our problems, or other negative reactions. We need to have space where we can ‘just be ourselves’, and not have to constantly explain why we feel this, what we mean by that, what this word or expression means, or to justify ourselves to anyone who hasn’t had the type of experiences or reactions or thoughts we’ve had. Somewhere we don’t have to censor ourselves, as we have to do so often in the ‘NT world’. We need somewhere that we can feel safe. It seems to me this should be a minimum requirement for any minority group - a starting point where its members can relax, share, vent, sympathise with others’ struggles, give each other advice, etc; and just generally be themselves. Minority groups (including auties) are sometimes wary of admitting this, in case it sounds like we want to be apart from the dominants solely so we can have ‘hate the dominant’ sessions, which is not really what is meant. It’s about ‘us’, not ‘them’.

In short, we need autistic-only groups so that when we come out of them and interact with NTs in whatever setting, we do so from a position of personal empowerment, and something like equality, and of knowing what we want and need. Is this really such a big ask?


  1. The dynamics of any closed group allowing members to be true to themselves and to each other is so subtly and yet radically changed when others are permitted entry or view. In fact to the very same extent as would inviting one's extended family into a hotel honeymoon suite after the banquet to observe the inaugural conjugal act sans clothes or any bedclothes for that matter either. Love becomes a performance - a joke. Intimacy becomes feigned and distracted. Willingness becomes fear and caution. Freedom becomes a dirty tangled web. Fascination transfers to interlopers. Focus is smudged. Beauty is left sundered beyond all recognition. Mechanics - going awkwardly through the motions of pretence of it all is left. And, as we all know, Autistics have done that for decades without it bringing a moment of real joy. Let us be who we really are together, and we will share the offspring of those moments with you later on. Please.

  2. Great clear writing Penni, exploring a difficult area. Well done.