by Guy Shahar
Published: 9th September, 2020
This is a very contentious question concerning all who are autistic or associated with autistic people. Autistic people tend to prefer to be called autistic, while those who work with them professionally tend to prefer to refer to them as people with autism. Why the discrepancy? Why is there so much passionate debate about a simple semantic preference? And how might we bring these different preferences together, or at least arrive at a better understanding between them?
I’ve had my own personal journey with this question which might be helpful to share.
When it first became clear that my son might be autistic, like many parents, I found myself talking about the possibility of him “having autism”. I wasn’t really sure why – I never asked myself the question. I think that by conceptually separating the child from the autism – by saying it was something that he had rather than something he was – it somehow felt more tentative; less real, and less of a statement of the essence of who he was.
This preference continued as we started finding therapies to support him. While he was really struggling at that time, we remained very hopeful that we would find ways to help him back to happiness and contentment. We were worried that a label of “autistic” would define him in others’ minds and perhaps in his own as somebody with limitations, and who would always be on the margins of society. This could become a limiting factor in his life, giving him and others preconceptions about what he might not be able to achieve. As we didn’t want to subject him to such limitations, especially when we could see so much potential within him, surely it made sense to avoid language that tied him so definitively to a condition that is associated with limits.
But later, as I came to better understand what had been going on in my thinking and what autism is all about, I started to question this. Why was I really worried about labelling him? Was it because the label was incorrect? Was it because a label might define him? Or because it might limit him in others’ or his own mind? Was it because I thought that autism was something undesirable that I wanted to distance him from? Let’s take each of these possibilities in turn.
The label wasn’t incorrect. That’s the easiest one to deal with, especially once he had his diagnosis.
Could the label define him? Well, it might, but only if a choice was made to do so. We have many labels in our lives – we might be male or female, white or black, Jewish or Muslim, gay or straight, athletic, large or small-framed, short-sighted, creative, colour blind, autistic and so on. None of them defines us unless disproportionate emphasis is given to it. And there’s no obvious reason to avoid any of them. Transforming Autism ran an awareness campaign some time ago called More Than A Label, stressing that each individual is more than the collection of labels they possess.
Could the label limit him in people’s minds? Again, only if a choice was made to do so. A full understanding of autism would not lead to any sense of limits, only appreciation of the different distribution of strengths and challenges. If others’ preconceptions do not extend to this, and as a result we become shy and tentative about the word “autistic”, then those preconceptions will be reinforced and strengthened. These preconceptions can only evolve if we freely use the word and in parallel, demonstrate the unique and valuable strengths.
Finally, was my reluctance to use the word because I thought of autism as something undesirable that I wanted to distance him from? At an extremely subtle level, I can now see that there was some truth to this. Saying that he “has autism” was a way of distinguishing him from the condition, as if they were separate and as if his autism was something that could somehow be overcome. It was based on an incorrect understanding of autism as something negative – an impairment that stopped him from being who he was; as opposed to being an integral part of who he was with many positive attributes. My avoidance of the word “autistic” was justified by a claim that I didn’t want to define him, but as we have seen, it need not have defined him any more than any of his other qualities did.
If there is any doubt about this, imagine how insulting it would be to refuse to call someone, say, a Latino man, insisting that he must be called a “man with a Latino background” so as not to define him by it. Or calling someone a “woman with Judaism” or “with lesbian tendencies”. These would immediately be sensed as an attempt to “rescue” them from being too closely associated with their attributes. In those areas where there is traditionally misunderstanding or prejudice, this awkward and self-conscious way of speaking would reveal an underlying discomfort, possibly even judgement of them. The same is the case with autism.
Given the overwhelmingly negative and incomplete narrative that still prevails around autism, it is understandable that parents who need to suddenly come to terms with the fact that their child may be autistic can be fearful of how this might affect their child’s life. They could easily view it initially in a negative light or want to hold out a hope that it may one day be “cured” and they they will then have their child but without the autism. But if we focus on evolving the narrative around autism in more positive and empowering ways (as described in our TED talk), then there will be no need to fear the label – it might even become something to be welcomed.
There is no need to wear it with any sort of pride and certainly not with any sense of superiority, but it would be good to see an end to the days when it is considered to be a mark of impairment or inferiority.