Autism awareness: ableism, language and misconceptions
World Autism Awareness Week this year starts today, Monday, 29 March and runs through to Sunday, 4 April. It is a global campaign to promote awareness, understanding and acceptance of autism. Emily Lees, an autistic Speech and Language Therapist at Inscape House School, will help us understand autism and pro-neurodiversity approaches better.
What is ableism?
Ableism is discrimination in favour of able-bodied people or people who have disabilities. Ableism can take many forms: assumptions, stereotypes, attitudes and practices. It can also often be unintentional. Misused or outdated terminology can be inappropriate and hurtful. In society, language progresses and shapes attitudes.
Language and viewing autism through a different lens
Historically, society has focused on what needs to be changed within the autistic person, telling them how they should act in social situations, what's appropriate and inappropriate behaviour. These terms are frequently used in autism documentation, guidelines and recommendations, and are written mainly by neurotypical people.
Examples of negative language:
"X has a narrow range of interests" - according to who? What's considered narrow? How many interests are narrow - two, three, five? How do you categorise an 'interest' versus something you like or don't like? What's wrong with being passionate about things you like? Is this exclusive to autistic children, or is it universal to most children (and adults)?
"X is unable to communicate feelings effectively" - according to whose standards? In what contexts? Every situation? what if the child has communicated their feelings just fine and advocated for themselves, but it's the listener who doesn't like how it was said? Was the listener genuinely harmed, or is it just different styles of communication?
"X can engage in conversation but generally about favoured activities" - who doesn't prefer to talk about their favoured activities? Who wants to talk about things they aren't interested in? And again, what's wrong with being passionate about something you like? If a child has gone out their way to tell someone about their interests, why aren't we celebrating that?
Autism levels – 1, 2 3… mild, low, high, severe?
Levels and categories can be problematic as a person's needs can fluctuate frequently. E.g. one day, a person might be 1 / mild, tomorrow they might be 3/ severe. Autism can't be described on a low/high distinction, as it is not linear. There are so many skills that autism affects, and one phrase cannot summarise them all. Also, to reduce people down into a number and category is dehumanising.
It's easy to make assumptions about what's deemed good or bad behaviour. The behaviours labelled as 'challenging' can actually be adaptive and functional. They could be a way to communicate unmet needs, e.g. pain, requesting, overstimulation, boredom.
Everyone needs attention. When children/adults don't get their needs met and are emotionally dysregulated, they compensate in all ways. Dismissing behaviour as 'attention-seeking is a way to opt-out of thinking why the behaviour is happening and assigns judgement. These behaviours should always be taken seriously and never ignored.
An outdated term. A person's needs are not 'special'. Disabled people need access to the same things as non-disabled people, e.g. food, clothing. Use "disabled", "disabilities", "disability"…
"Person with autism? Autistic person?"
Terminology varies among the autism community, but the general consensus is that autistic advocates prefer "autistic person" (identity-first language) rather than "person with autism" (person-first language). Identity-first makes it clear that autism is part of that person's identity, it's a vital part of who they are, and they are proud of being autistic. But, if in doubt, just ask.