by Guy Shahar
Published: 28th July, 2023
Should we call autism a disability, or something else? Should we say that someone is “autistic” or that they “have autism”? Should we talk about “treating” autism, or does that suggest that there’s some impairment in the person being treated?
Questions like this are rife in the world of autism, and many people have very firm positions one way or the other on such questions. Moreover, they’re convinced that there’s only one correct way to use language, and it’s theirs, and that other ways reveal flawed thinking or wrong attitudes on the part of the person using it.
This can lead to divisions and factions, and can pit different groups against each other. Some language issues, for example, might pit the majority of autistic people against the majority of autism professionals (with minorities of each taking the other side). It can lead to people with similar intentions and aspirations thinking of each other as enemies because of the language they use.
Why is the language we use to talk about autism so controversial, and how can we build the bridges to enable tolerance, acceptance and ultimately partnership?
Conscious Use of Language
There are important differences between all of these various expressions.
As a charity, we don’t describe autism as a disability, as we know that there is huge potential in each autistic child, and when we see that potential achieved, it’s obvious that it wasn’t autism that was holding them back. An autistic child might be disabled due to their life circumstances or how they’ve been treated by others or the availability of the right sort of environment or support, but it’s not autism itself that is disabling them.
For similar reasons, we don’t talk about treating autism (as we don’t see autism as a problem to be treated), though we might occasionally talk about treating a child. Generally, though, we prefer to talk about support.
And we talk about people being autistic rather than having autism, for the reasons outlined in our separate article on that.
But it’s important to recognise that we don’t all use language very consciously. Even if we’re always (or most of the time) acutely aware of the language we use in one area of life, we may use language that causes offense to people more immersed in other areas of life.
This is not because we necessarily hold obnoxious views (though it might be); it’s more likely to be because we’re not aware of the implications of the language we’re using or the connotations it has for others. We don’t have lived experience of all areas of life or of all communities.
So, it’s perfectly possible that 2 people using apparently diametrically opposing language can actually be on the same page in terms of their intentions. The language can be aligned later, if that’s still necessary.
(It’s also possible for someone who naturally and unconsciously tunes into others’ language sensitivities to use language that is technically completely in line with our own feelings, while holding opposite attitudes)
All of this can help us to remember that the person using language that triggers us may well have the very best of intentions, and is simply not versed in why we prefer one set of words over another. This is far more forgivable and enables us to see them as a friend rather than someone assaulting us.
It can also be helpful to remember that people’s expressions are not always a reflection of their technical understanding about something, but reflect instead their wider life situation.
For example, a parent of a “low functioning” autistic child who is melting down all the time, refuses to eat and is falling further and further behind the expected milestones, is likely to feel differently about things than someone who has been fortunate enough to find support (still too rare!) that has turned things around for them. Perhaps the child also has other conditions. The parent is likely to consider their child disabled – not out of any disrespect or wish to limit the child’s prospects – and certainly not out of any derisive thoughts about other autistic people – but simply out of their personal experience of life.
They may also have been given the message that their struggles are not really very serious or that they are themselves in some way to blame for them. If they then hear someone saying that autism is not a disability, they’re likely to experience this as a further reinforcement of those negative messages, rather than a statement of positive affirmation about the child’s potential.
That is completely understandable, but may clash with the perspective of an autistic person, who may have experienced the word “disability” as an attempt to belittle and undermine them and suggest that they have no value or potential; or of a therapist, who has repeatedly seen the unique qualities and abilities of autistic people that are often unseen by others.
All of these perspectives make perfect sense from the point of view of the person experiencing them. It would be a shame if any of us allowed our defensiveness about our own perspectives to reduce our compassion for another person whose experience may lead them to view things in a different way.
For us as a charity, the idea of “low functioning” and “high functioning” have limited usefulness, as we have seen low-functioning children become unimaginably higher functioning through the right sort of support (including in my own family). It may be that children who initially present as low-functioning simply have a much greater degree of sensitivity in various areas (check our Articles section for several more articles about this) and require greater accommodations in order to feel safe and able to live comfortably, and do run the risk of being even more easily triggered. But ultimately, their inner potential is not diminished by this, and in some ways may even be enhanced through the additional perception and intuitive abilities that come with the sensitivity.
But for a parent struggling with an extremely difficult life, and who has not come across such transformations, or finds it difficult to believe they’re possible, the language they use is going to reflect their experience of life, and it’s our choice whether we condemn them for it and add to their feelings of being alone without anybody really understanding them, or whether we tune in to the reality of their struggles and treat them with kindness, regardless of whether their use of language fits with our own pre-conceptions (right or wrong).
Another reason why language may appear to divide us more than it actually does is due to the conceptual frameworks of the people using it.
Professionals in the autism world often like to use certain expressions, such as “someone with autism” to describe an autistic person. We’ve written an article on why we prefer to say people are “autistic”, but the professionals are not necessarily being disrespectful – it’s just how they’ve been trained to think and to express their very positive intentions. In their understanding, they’re actually being more respectful in the language they use, and when they discuss such things with their peers, this conception in re-inforced.
The same thing happens the other way round in the autistic community – to describe someone as “autistic” has certain much more positive connotations for them, and these conceptions are similarly re-inforced in conversations with each other.
It’s tempting to analyse the implications of each choice of expression, and to assume there are perhaps unconscious underlying attitudes that lead someone to use language that’s different from our own. In some cases, this may be revealing, but I’d suggest that in many more cases, differences in language are only superficial – manifesting mere cultural differences in ways of expression. Placing too much emphasis on these differences can conceal whether or not the hearts are aligned, which must be the most important thing.
It’s no secret that the charity, Transforming Autism, was inspired by my trip to Israel’s incredible Mifne Centre. I learnt so much there about understanding and having true respect for each autistic child (and actually each human being generally). This transformed our lives as a family, and was again of enormous benefit to me later on when I learnt that I was myself autistic.
We resonate so deeply with what they do in so many ways, and yet, the Mifne Centre doesn’t use language in the same way that we do. For example, they make the opposite choice to us for each of the 3 questions that opened this article. Judged superficially, this would suggest that we hold very different attitudes to autism, to the value of autistic people and much more. But I definitively know this not to be the case. It’s yet another example of the use of language based on people’s respective conceptual framework masking the underlying unity. We choose instead to focus on the commonality of our underlying goals and visions rather than the language used to express these.
It’s dangerous to assume we necessarily know what others’ attitudes are based on their use of language, or that only we (and people who think like us) understand the correct or most accurate way to express ourselves. We risk making enemies of people who are our natural friends and allies, based only on their conceptual framework and whether it matches ours. Demanding that it should seems unreasonable, and can only contribute to division and mutual suspicion.
A greater awareness of all of the above can help us to be more tolerant of others and why they might use words that we wouldn’t; to have compassion and understanding for them rather than treating them as foes; and to build bridges that can lead to a more cohesive world where we use our energies to support each other to build better lives, rather than to unnecessary fight and deplete each other’s energy, which is already in limited supply.
This has to be in all our interests.