Timeand Space
“Takiwatanga” is the Maori word for autism and means “In his or her own time and space.”
The word and its meaning have a certain beauty that many find appealing. The extent to which so many respond so positively to the word, especially on social media, always tends to have my sceptical hackles rising so hard and high as to form the spines of a hedgehog all over my skin, only barbed. I understand the phrase, and think that it requires much elaboration and qualification for its true meaning to be made clear. To live in one’s own space and to act in one’s own time is not always beautiful and not always a blessing. That the phrase attracts so many words of praise suggests not only a shallow and easy response to a vaguely pleasant image, but a certain indolent romanticisation of autism. People like to feel happy, they don’t like to be challenged. Autism is a challenging condition in so many respects, both for those who are autistic and those whom autism confronts. Autism demands something of others. Not the least of the things that autism demands of others is understanding. And I would suggest here that it would be a step in the right direction to move away from the idea of a character, a condition, or a way of acting as either praiseworthy or blameworthy in themselves. The people who confer their ‘likes’ and ‘loves’ so gratuitously to the notion of living in one’s own time and space can have no idea of the challenges that this involves, and the loneliness that issues from struggles with social communication and social interaction. I do things in my own time, I work at my own pace. I seek always to carve out my own space, or have a home as a safe space to withdraw into in order to preserve myself in face of the challenges of the social world. I would ask those who respond warmly to the image of being in one’s own time and space to imagine a life lived at cross-purposes with others and at some remove from others. It can be a life of cruel isolation. Worse is when people see a person with autism’s tendency to work, live, and act alone and conclude that “s/he prefers to be alone.” Have you ever asked that person? People look at a consequence – withdrawal, isolation, self-directed activity – and draw a conclusion with respect to character and a condition which is false. I don’t ‘prefer to be alone’ at all, not as such; I tend to go it alone rather than deal with the stresses and tensions that arise through being at cross-purposes with others. Which is to say that I would prefer to be alone with myself and my interests and passions than alone with others with whom I have nothing in common.
I just wonder what the people who praise this phrase are thinking when they offer up their ‘likes’ and ‘loves’ so easily. Are they reassured that such a challenging condition has been cloaked in a warm word and meaning? Sanitised and sterilized? Rendered easy rather than difficult? Comforting instead of being discomforting?
That positive spin on things does seem to have been the intention of the word’s invention. I don’t dislike the word at all; I do dislike the ease with which so many succumb so easily to the comforting qualities of the word by way of reinterpretation. I am here to restore discomfort to the lives of those still in need of understanding.
The origin of the word "Takiwātanga" lies in the decision taken to expand the Maori language of New Zealand in order to describe mental health, addiction, and disability issues. "Takiwātanga" was one of a couple of hundred words and phrases that were coined to this end. Whilst the word is accurate, it also has a poetic quality which has the potential to mislead lead those who are always all too prone to misread things they don’t wish to deal with. The danger of putting spin and rosy glow on a difficult condition is that it invites people to overlook the difficulties and bask in the warm feelings of poetic expression.
One of those who helped devisethe new words is Keri Opai, a civil servant. He explained that the words were selected not merely to fill gaps in the Maori vocabulary, but to be non-judgemental. "In my experience, people with autism tend to have their own timing, spacing, pacing and life-rhythm, so I interpreted autism as 'takiwatanga', meaning 'his or her own time and space'."
So far, so good. I have no problem at all with this explanation of the meaning contained in the word. Opai consulted the Maori disabled community with the express intention of developing variants that differ from what he called the "sometimes condescending English terms." Again, I agree. But, leaving aside the separate issue of the Maori language, it’s the positive spin on the condition that concerns me. Opai sought to emphasise "gaining strength and ability. So the word for 'disabled' itself is 'whaikaha,' which means to "have strength or to be differently able."
I’m not cold to the idea. As a huge football fan, I can see how the footballers with the greatest abilities are those who always seem to find time and space on a crowded field. But this indicates a much higher level of ability, an ability that is exercised and demonstrated in a social and relational context, the ability to find time and space in contexts where those things tend to be scarce and stressed. A person with autism has a time and space that is autonomous of social contexts, potentially removing them from others and the world rather than putting into social contact and relation. “Autism is a social death sentence,” someone commented on the AS pages on social media. People should try to understand what he meant by that before offering a ‘love’ for the sentiment of living in one’s own time and space. It’s a mixed blessing.
To “have strength” and “be differently able” sounds wonderful. So wonderful, in fact, as to lead neurotypical people at work, not to mention cash-strapped, short-staffed, institutions and authorities, feeling little need to be accommodating. The problem is that the society of others very rarely offers you the luxury of being able to go at your own time and space. Time and again I have been pressured into doing things I either can’t do or don’t want to do in order to meet certain goals and objectives, pushed to the brink of nervous exhaustion and breakdown and beyond.
I once tried to explain the difficulties of autism to someone and was met with a long explanation as to how autism is not a disability and that there are alternate ways of doing things. I remained silent, lest I have to tell, for the umpteenth time, my story of always having to find alternate ways of doing things in order to survive. I was given example after example of how others help the ‘alternately abled’ to achieve their goals. I noted the presumption of normal social connection, communication, and interaction to this alternate way of acting and being – these tend to be the very things lacking in the autistic person’s world. They have been lacking in mine. Instead of helpful others enabling me to achieve my goals and ambitions, I have in the main been confronted by ‘normal’ people doing ‘normal’ things the ‘normal’ way and not having the first idea as to what the source of my difficulties have been. They have usually put it down to my laziness, lack of confidence, bloody-mindedness, awkwardness, lack of application, contrariness. Precious few have seen how hard I had had to work just to achieve parity.
‘Where are these others?’ Iasked. I have spent a lifetime in search of these others. I am still searching. Since first referral and self-diagnosis, and then diagnosis, I have been consistently let down by people who were supposed to be helping me, people who have sapped my energy, wasted my time, and destroyed my hope. Those helpful others tend to be specialists in certain institutions doing a job, offering what little resources they have to spare. Vague statements to the effect that ‘we are all in this together, at one with our differences’ are easy, content-free, and cost nothing in terms of time, money, commitment, and action. I’m not finding those ‘others’ who willingly alter their behaviour in light of understanding just to help those with autism to realize and exercise their alternate abilities. And the problem with the general appeal of seemingly warm phrases is that it encourages those uncomprehending others to carry on offering little to nothing whilst thinking that they are sympathising. They are offering nothing but the same old obstacles.
The definition of "Takiwātanga" as "in his or her own time and space," is a good one, so long as it is used as the beginning of understanding and not the celebratory end that removes all the difficult issues out of the condition. Too many indulge in celebration in lieu of understanding, something ensures that views of being ‘differently’ and ‘alternately abled’ are translated simply as ‘abled,’ as in requiring no additional help.
To give an example, when I had to learn the same things at the same pace as others at school, I frequently fell behind and was subject to insult and abuse on account of being stupid. With a different way of processing information, I have a very different way learning. The more I was able to take control of my learning, the more self-directed learning became, the more I shot ahead of my peers. That may sound wonderful, a ‘different ability’ indeed. The problem is that in the practical social world, in the main, human beings are locked into actions, and demands that are generally structured and patterned the one way. The space for autonomy and self-direction is limited in the ‘real world,’ meaning that autistic tendencies to do your own thing your own way at your own pace in your own space put people with autism at a serious disadvantage. In other words, the qualities that sound good, even exotic, in a quote or a meme can be debilitating in practice.
Being beyond judgement means to be also beyond praise as well as blame, beyond facile celebrations of ‘difference’ as well as the all-too-common insults of ‘abnormality.’ People offer their praise so easily because it reassures them and because it costs them nothing in terms of changing their own behaviour. Such words are indeed cheap.
The term 'autism' is derived from the Greek word 'autos', meaning 'self’ and ‘self-directed,’ ‘directed from within.' It is little wonder that, in my work, I place such a strong emphasis on the inner motives and self-motivation, as against external directives and imperatives. You develop a certain self-reliance and resilience this way, which makes you strong and independent minded – autonomous. But since human beings are social beings who need others in social environments in order to be themselves, that self-directed tendency can be debilitating. Worse, difficulties in social intercourse can cause people with autism to withdraw and retreat further and further into their own world. Stay in that world for too long and it can be difficult to find your way back to those helpful others people claim to exist. Those others need to offer more than verbal celebrations of ‘the power of neurodiversity’ and actually proceed from a deeper understanding to alter social practices and institutions to ensure support in a kind, non-judgemental space. And by non-judgemental I mean a space that is entirely without political implications, as in pitting the neurodivergent against the neurotypical, raising one above the other, setting one apart from the other. Same but different, different but same. I’m less than keen on having my ‘different ability’ celebrated as a power, still less as a superpower in the right circumstances. When those circumstances are not available, as they tend not to be for most people with autism, you feel something less than able and powerful. Hence the appeal that people with autism make for help from others.
Over to those others.
