Our Use of Language
The following was written by the staff at the One Stop Shop Aberdeen in collaboration with Triple A’s (www.triplea.uk.com) and Scottish Women’s Autism Network (www.swanscotland.org), and addresses why we use the language we do, and our usage of iconography.
Awareness vs Acceptance and Understanding
Research carried out recently on behalf of Inspiring Scotland showed that the great majority of the public in Scotland, as in the rest of the UK, up to 99%, is ‘aware’ of autism. That means most of us have heard of autism. There is a difference between being aware of something and understanding it, however.
Autism is stigmatised and widely misunderstood. Representation of autism in the media is often problematic, based on stereotypes. Mostly these stereotypes involve males. That autistic people may be girls, women, or trans or non-binary, is rarely acknowledged in these stereotypes.
Many autistic led organisations work for ‘autism acceptance’ rather than ‘autism awareness’. Acceptance of autism means acknowledging the autistic person as a whole autistic human being, not a “broken neurotypical person” and not a stereotype. It means those working with, supporting, employing, or raising autistic individuals can accept autism as a part of the natural diversity of human brain development rather than something to fear and work against.
They can be better equipped to address the sensory, social and emotional needs and the human rights, of autistic people rather than seek to ‘cure’, eliminate, or train them to be more ‘normal. Keep in mind, our lived experience is that we do not prevail despite being autistic, we often do so because we are autistic.
Identify First v Person First Language
Surveys carried out by a range of organisations have consistently shown that the majority of the autistic community prefer identity first language. This means using terminology that places autism at the core of who we are. All people have multiple identities - daughter, mother, teacher, CEO, engineer, friend, etc. etc. We generally don’t describe ourselves as ‘having Scottishness’, ’having maleness’ - we would say ‘I am a Scottish man’. In the same way, autistic people generally regard themselves as e.g. “I am autistic”, rather than “I have autism”.
Autism is a core part of how our brains work, it informs all of our experiences: how we see, hear, think, feel about the world and communicate. Autism is not the only thing that defines an autistic person, but all of our identities are manifested through the experience of being autistic.
Autism presents its own challenges to each autistic individual, but it also presents opportunities and strengths. Autistic people, like the rest of the population, experience challenges and difficulties and sometimes these are quite severe, but they also have abilities, sometimes to a very high degree, experience fun and joy, their own developmental milestones and achievements too.
Some autistic people may choose to use person first language, but in keeping with the preference for most autistic people, we use identity first language.
As we learn more and come to better understanding of the shared characteristics of autism across the spectrum, there is increasing discomfort with functioning labels. The term ‘support needs’ may be used instead – e.g., he has high support needs, they have low support needs, although that is also not without some issues.
- Support needs are fluid, from life-stages to day to day or even in the same day.
- The term low functioning is often wrongly associated with low intelligence. Many people with high support needs are very intelligent but need support for daily life.
- High functioning is often associated with high intelligence. Again, many autistic individuals with low support needs may not have the highest of IQs, but be able to navigate daily life relatively successfully while some of us with very high IQs may struggle in aspects of our daily lives and often unable to access support, even when we really do need it.
- Those with high support needs have often been considered unable to contribute to society and denied opportunities despite the fact they may well be capable.
It is important to note that perceived intelligence does not equate to either ability or human worth. Many people, autistic or not, may not perform well in traditional IQ tests but are not ‘lesser’ and may also have other assets.
Due to the nature of the way autism presents in each individual, the use of functioning labels is to be discouraged; terms relating to support needs is more helpful.
While the puzzle piece symbol is commonly associated with autism, it is important to remember that a large portion of the autistic community not only have trouble with the puzzle piece, but actually find it highly offensive.
Many autistic people may say things like “I am not a puzzle to be solved”, “I am not missing any pieces because I am autistic” etc.
Due to its history and current use by controversial organisations who attempt to “cure” or eliminate autism entirely, many autistic people find the use of the puzzle piece problematic.
Autistic led organisations tend use a wide variety of symbols instead, but the infinity logo either in gold for autism acceptance, or rainbow for neurodiversity, is often used. It’s important to ask for permission before ‘appropriating’ such iconography for events or informatics.
Models of Autism
The current definition of autism as a Mental Health Disorder under a medical model for the purposes of diagnosis is hugely problematic and underpins much of the prevailing detrimental attitudes to autism in every aspect of enquiry or service provision.
More helpfully in some respects, are the models of Disability that include the Social Model and the Human Rights Model, which exists because of the United Nations Convention on the Rights of Persons with Disabilities. It is worth exploring these as models through which to understand and approach autism.
While there are some aspects of autism that are to be valued and even celebrated, aspects of their autism, for many individuals, may be disabling. Some autistic people are uncomfortable at being considered ‘disabled’ but access to ‘reasonable adjustments’ at school and work, social security benefits etc., require acceptance of autism as a disability as defined in law under the Equality Act. Overarching all of this should be an acceptance of the basic principles of Human Rights as defined under UN legislation.