Left to my own devices I waltz through life at my own pace, to my own rhythm. I can be largely oblivious to the people around me or their activities as my thoughts dance. Read more
Some insist that autism is a disease, others are equally firm that it is not. Are there really two sides to this question?
What is a disease?
Everybody knows what a disease is, right? It can be an infection by some virus (like measles). It can be a genetic condition like Huntington’s Disease. It can be a parasitic infestation like scabies or tapeworm. It can be something where the cause is identifiable such as chickenpox, or where the mechanism remains unknown (Alzheimer’s). It could be trivially treatable or incurable.
Except that there are exceptions. We don’t usually refer to food poisoning as disease, nor head lice. Toxaemia and gastroenteritis are generally called conditions, not diseases; however influenza is invariably called a disease. Mange is, fleas aren’t.
The fact is that even in a medical context disease doesn’t have a clear, unambiguous definition. There’s no hard and fast rules for what is and what isn’t a disease: it largely comes down to habit of use.
In principle anything that is outside the norm–outside the majority of people–could be classed as a disease. In practice, it’s only those differences that are seen as having a negative or detrimental impact that get called diseases.
What is Autism?
Autism is a neurological difference that manifests in a number of ways primarily affecting the style and ease of social communication, and the range and depth of interests. It is also associated with differences in perception and sensory processing.
It is primarily genetic and is a lifelong condition. Autistic people typically achieve developmental milestones on a timescale that falls outside the typical range for non-autistic people.
At least 1 in 100 people are autistic. For a number of reasons there remains a bias towards diagnosing males, although the gender ratio is trending towards parity over time.
In an environment that provides appropriate supports for communication, sensory or other needs–an “autistic-friendly” environment–autistic people are able to function well.
You mean it is a disease?
There’s no technical reason why you can’t call autism a disease. It’s characterised by traits that fall outside what is typical for the majority of people.
But, at the same time, many autistic people don’t consider autism as negative. We don’t see the traits as having a detrimental effect on our lives. But even when aspects of autism are disabling, most still do not see autism itself in a bad light.
So it’s not a disease?
It ultimately comes down to perspective. There is a shift occurring among researchers and professionals towards the view of autism as difference rather than disorder. This is what many autistic people have been saying for years: we’re not broken or defective.
The important thing is that most autistic people see autism as a key part of ourselves. Without it we would not be who we are. Identifying with autism means that negative portrayals of autism are also negative portrayals of autistic people.
Referring to autism as a disease tells autistic people that you see it–and by implication us–negatively.
Don’t call it a disease
Calling autism a disease has harmful effects. It is stigmatising and causes autistic people to be seen as defective, damaged–even unclean. This fuels prejudice and discrimination against autistic people, causing real harm.
The language that is used in discussions of autism and autistic people matters a great deal. Historically autism has been described in terms that focus on perceived deficits and this has shaped the thinking around it. When everything is about what autistic people can’t do, the things we can do get ignored and we are simply seen as defective.
It’s well-recognised that when something is talked about using words that have negative associations, the thing being talked about becomes seen in a similarly negative light. When autism is portrayed as a tragedy, parents fear a child being diagnosed: this is not good for either parents or child.
Autism is not intrinsically good or bad, it’s a difference in the way the brain is wired. Avoiding negative language–not calling autism a disease–benefits autistic people and our families by shifting the conversation. Instead of pity and regret we can start thinking of autistic people as people with needs. We can talk about support and accommodations, improving autistic lives today.
Autistic, not with autism
Autism is central to autistic people’s day-to-day lives. It shapes how everything in the world is experienced, an experience different from that of non-autistic people. It’s impossible to conceive of life without autism because it’s simply there, shaping everything that goes through the brain.
Attempts to downplay the significance of autism, using linguistic tricks like “person with autism” that attempt to artificially separate the person from something we feel is intimately entwined in our being, strike a false note. It comes across as if the speaker feels autism is something to be hushed up. Something shameful or dirty, kept at arm’s length.
A matter of respect
Talk of autism as disease feels the same way to autistic people as person first language. It’s a judgement against us, a flag that signals a lack of acceptance. It says that the autistic person is viewed as being tainted, abnormal, defective. It feels like being on the receiving end of hate speech.
If you’re serious about respecting autistic people you must listen to us and our concerns. Stop pathologising autism and referring to autistic people as problems to be solved, a disease to be cured. Respect our differences. Respect us.
- Lai MC, Lombardo MV, Baron-Cohen S (2014). Autism. The Lancet;383:896-910. https://www.ncbi.nlm.nih.gov/pubmed/24074734?dopt=Abstract
- Baron-Cohen S (2017). Editorial Perspective: Neurodiversity – a revolutionary concept for autism and psychiatry. The Journal of Child Psychology and Psychiatry;58.6:744-747. https://onlinelibrary.wiley.com/doi/full/10.1111/jcpp.12703
You tune it out and turn away
You’re sure that it’ll keep a day
It really doesn’t seem that bad
Can’t let it spoil the plans you had
You could strike while the iron is hot
But nah, the problem’s soon forgot
There’s better ways to spend your time
Than worrying: you think it’s fine
You say you’d fix it if you could
Well, patch it up, not make it good
It’s hard to quash that nagging doubt
You’re not as skilled as you make out
Prevaricate as problems grow
You just sink deeper, act too slow
While all the time the waters rise
How could this come as a surprise?
The currents swirl, the waves they rip
You try to run but only trip
You left your head down in the sand
Too long. Let others make a stand
Relied on them to fight your wars
Then you’d emerge to take applause
They didn’t win, those stalwart few
Their ranks were missing folks like you