Is #Autism A Disease?

Is #Autism A Disease?

Autism Illness (1)

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.

References

  1. Boyd KMDisease, illness, sickness, health, healing and wholeness: exploring some elusive concepts. 
  2. Lai MC, Lombardo MV, Baron-Cohen S (2014). Autism. The Lancet;383:896-910. https://www.ncbi.nlm.nih.gov/pubmed/24074734?dopt=Abstract
  3. 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
Dancing To My Own Tune

Dancing To My Own Tune

Masks

Although it’s only recently I’ve been hearing the term masking — the first time I can remember was in conversation with my very dear friend Patricia — I didn’t need to have it explained.

Putting on the metaphorical mask, adopting that persona, playing that role…

Oh yes, I know what that’s all about. Metaphors might be intangible but they are real. My whole life was an attempt to do what people around me wanted. To be who they wanted and expected me to be. The perfect child, the model student, the star employee, the ideal spouse.

In any human social group there is pressure to fit in, to conform so that you are accepted as one of the group. Most people adapt their behaviour depending on where they are or who they’re with, but these aren’t masks: they’re fine-tuning. It’s like adjusting the volume on the TV but keeping it tuned to the same channel.

Masking isn’t like that. Masking is attempting to put on a whole new persona. It’s method acting where you become the part you’re playing. Your character is authored by the people around you, it’s not your own creation. You’re dancing to somebody else’s tune.

While it can be very convincing — some autistic people are talented professional actors — when you’re filtering every word, every gesture, every reaction through that mask it becomes exhausting. And you don’t get to exit stage left and nip backstage for a breather. You’re in character almost every waking moment.

One danger of adopting a character so completely is that you can lose touch with yourself. You become so accustomed to acting the part that you blur the boundaries between real and pretend as you strive to become the mask. It’s a long road back from that place.

Being something, someone, that you’re not carries a price. It causes mental stress as you work to suppress your instinctive behaviours and reactions in favour of the ones that allow you to fit in. The threats and fear that drive the process — fear of failure, of ridicule or abusive harm — are very real and cause harm in the medium to long term.

This driving force is powerful: it has to be to push us so hard and so far. And the result — fitting in, appearing to be like our peers — might sound like a reasonable goal. It’s the aim of interventions like ABA and other behaviourism-based therapies. But regardless of whether it’s driven by a practitioner or by peer pressure it can cause deep, lasting trauma.

I didn’t only grow up autistic (even if I wasn’t aware of the fact): I also grew up transgender. To me, the parallels with masking as an autistic person are very clear: I, an autistic female, was expected to appear to be a neurotypical male.

I can’t easily separate the two aspects of my being: my gender and my neurotype. The teasing and bullying I went through was because I didn’t act NT enough or male enough to match peer expectations. I tried. I watched people around me, studied them, tried to copy how they acted. Constructed my mask to hide behind.

Being autistic isn’t about the list of symptoms in DSM or ICD – that’s just the medical establishment’s way of drawing neat lines around a bunch of us and sticking a label on the resulting box.

Being autistic is how I experience the world and react to it. That might cause certain observable effects that get written down and turned into a diagnosis, but living it is something that can’t be captured in words because an autistic frame of reference is different from a neurotypical one.

Autistic people can often recognise each other. We pick up on signs and cues that exist below the level of conscious awareness: we feel that pull of recognition when we see ourselves reflected in others. Because we can relate to each other through shared experiences, our similar responses to situations, we often feel more comfortable and at ease in each other’s company.

Recognising my own reflection, seeing myself in others and having them see themselves in me, is very familiar to me from meeting other autistics. But it’s equally applicable to my gender.

For about as long as I can remember it was other girls and women I saw as mirrors of myself. I could never relate strongly to male peers: I was never able to see myself as belonging there.

Just as being autistic isn’t a list of symptoms from the diagnostic manual, so being a woman isn’t a list of attributes either. There are such things as gender roles and traits, but they are a consequence of gender, not its cause or essence.

I’m not autistic because I struggle in social situations or because I was echolalic and frustratingly literal as a child: that is inverting cause and effect. I am autistic whether or not the signs are visible to others. I’m just as autistic when I’m chatting to a colleague at work as when I dance and flap.

Likewise, I’m not a woman because I have breasts and hips, or because I cry over emotional movies, or because I wear dresses sometimes. Those don’t define my gender, they are simply an expression of it. I was just as female before my body started to develop, I’m just as female in jeans and tee-shirt toting a toolbox.

Neither my neurotype nor my gender are things I had any choice about: they’re just the way I am. Trying to force me to be something or someone I’m not — conversion therapy by any other name — doesn’t work and causes me harm. I can act out a role under duress with a certain degree of success, but it takes a toll on me.

Ultimately I had to take off the mask. The strain of performing constantly broke me. Not all the damage it did can ever be healed: there is some baggage I will always carry with me.

But my burden is small compared to what it used to be, my steps are light. And the tune I dance to is my own.