The discourse of Autism as an illness is a common one. Frequently used phrases such as “suffers with Autism”, “lives with Autism” and “child has Autism” perpetuate this discourse, as parents of Autistic children and professionals who work with Autistic people strive for ‘political correctness’. What they often do not realise is that their language is helping contribute to the ongoing stigma their children and clients will experience throughout their lives.
The ‘Autism as tragedy’ discourse more closely resembles a vicious diatribe than any sort of helpful awareness effort.
This is something that has been playing on my mind for some time now, so I am going to attempt to join the conversation and present my evolving views as I am continuing to learn the impact words have on how Autistic people are viewed. There will be a few articles on this over the next few weeks, which I will present as a series. These articles are by no means intended to be any sort of authority on this topic- I am an allistic parent learning about how what I do (and don’t do) influences my childrens wellbeing. I am not trying to teach here, merely presenting my thoughts. I openly welcome discussion on these articles, as I am always seeking to learn more, and would value the thoughts, particularly of Autistic people, on this topic.
So, let’s start by looking at some definitions.
illness |ɪlnəs| noun,
a disease or period of sickness affecting the body or mind:
he died after a long illness | [ mass noun ] : I’ve never missed a day’s work through illness.
sickness |ˈsɪknəs| noun [ mass noun ]
1 the state of being ill: she was absent through sickness | [ as modifier ] : a sickness allowance.
• [ often with adj. or noun modifier ] a particular type of illness or disease: botulism causes fodder sickness of horses | [ count noun ] : a woman suffering an incurable sickness.
2 the feeling or fact of being affected with nausea or vomiting: she felt a wave of sickness wash over her | travel sickness.
ill |ɪl| adjective
1 suffering from an illness or disease or feeling unwell: he was taken ill with food poisoning | [ with submodifier ] : a terminally ill patient | (as plural nounthe ill) : a day centre for the mentally ill.
2 [ attrib. ] poor in quality: ill judgement dogs the unsuccessful.
• bad or harmful: she had a cup of the same wine and suffered no ill effects.
• not favourable or auspicious: I have had a run of ill luck | a bird of ill omen.
ill |ɪl| adverb
1 [ usu. in combination ] badly, wrongly, or imperfectly: the street is dominated by ill-lit shops | it ill becomes one so beautiful to be gloomy.
• unfavourably or inauspiciously: a look on her face which boded ill for anyone who crossed her path.
2 only with difficulty; hardly: she could ill afford the cost of new curtains.
ill |ɪl| noun (usu. ills)
a problem or misfortune: a lengthy work on the ills of society.
• [ mass noun ] evil or harm: how could I wish him ill?
ill at ease uncomfortable or embarrassed.
speak (or think) ill of say (or think) something critical about (someone).
ORIGIN Middle English (in the senses ‘wicked’, ‘malevolent’, ‘harmful’, and ‘difficult’): from Old Norse illr ‘evil, difficult’, of unknown origin.
I could be placing too much value on the issue of semantics here, but I do love words and investigating their origins. I don’t think it is coincidence that words we use now to describe Autistic peoples lives are so negative. It speaks to the idea of normality being valued and divergence being seen as negative, harmful and something to be critical of. The origin of the word ill, for example, coming in two different languages from having implications of evil or wickedness should give us pause before we use it in reference to a persons way of being.
And that is what Autism is- a way of being. There is an increasing body of research that tell us that Autism is a genetically based neurological divergence from the typical (here used informally to mean: what is expected because of the way the majority presents itself). This research now includes physical evidence by way of brain scans and other credible and reliable confirmation that Autism is not an illness.
There is of course a growing body of other research (a lot of it based on survey and anecdote) that says Autism is largely a behavioural problem caused by environmental factors. The rule of confirmation bias says that if you are already more inclined to believe something the evidence you need to confirm your belief is the one you will attend to. I am in the interesting position of having studied psychology, been a consumer of psychological services, and am a parent to Autistic children and so exposed to all sorts of suggestions of the appropriate ways to treat my kids. So the information I am processing is from a wide range of backgrounds and schools of thought. This does not make me immune to confirmation bias, but being aware that I am subject to it I hope helps me to be more critical of my thought processes.
I need to say here, too, that research- even good scientific research- has it limitations. For example, if research on Autism is only ever driven and funded by non Autistic people, all it will ever find out is what non Autistic people want to know and all it will ever confirm is what they think they understand.
The voices of Autistic people must be heard in the conversation about what Autism is because they are the ones who live it, experience it and know without a doubt what it is. I think the best article I’ve read about what Autism is was written by Nick Walker. You can find it on his blog Neurocosmopolitanism.
So, I come to the point where I’ve now spent years (about 6) thinking this through and am at a place where I can confidently say that despite having read lots of ideas from many perspectives in the conversation, and tried lots of the different recommended approaches to parenting Autistic children, I do not believe that Autism is an illness that causes suffering.
suffer |ˈsʌfə| verb [ with obj. ]
1 experience or be subjected to (something bad or unpleasant): he suffered intense pain | [ no obj. ] : he’d suffered a great deal since his arrest.
• [ no obj. ] (suffer from) be affected by or subject to (an illness or ailment): his daughter suffered from agoraphobia.
• [ no obj. ] become or appear worse in quality: his relationship with Anne did suffer.
• [ no obj. ] archaic undergo martyrdom or execution.
2 archaic tolerate: France will no longer suffer the existing government.
[ with obj. and infinitive ] allow (someone) to do something: my conscience would not suffer me to accept any more.
Yes, Autistic people do suffer. The are subject to all sorts of bad and unpleasant things. Discrimination. Infantilisation. Bullying. Ableism. These things are imposed on them not by their own Autism but by other peoples reactions to them being Autistic. The way their brain works is not something that is inherently bad, nor is it something separate from them that can be removed to leave behind a ‘better’ them. I can cause my children suffering by failing to support their needs adequately or appropriately, but Autism does not cause them to suffer.
This is where the history of the diagnosis of Autism, popular treatments for Autism and the way parents speak about their Autistic children all have a large role to play in the discourse around Autism. These are the ideas I will explore over the next few articles. I hope you will travel with me over the next few weeks and explore these ideas as I present what I am thinking. Please do leave a comment if what I am saying sparks a thought for you. And thanks for listening.