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
Tolerance and Teaching

Tolerance and Teaching

This world needs more tolerance.

It’s getting to the point where you can’t express an opinion without somebody immediately jumping on you and shouting you down.

I get that not everybody will agree with me. I don’t understand or know every nuance of every subject. Sometimes I make mistakes, or fail to express my meaning clearly. Sometimes it’s simply an opposing perspective.

But in this hair-trigger, offence-taking, call-out culture there is no place for uncertainty, mistakes, or a lack of clarity. One foot wrong in this social minefield and the dust won’t settle for days!

I get the anger, I really do. I see people repeat the same old misinformation again and again: whether it’s vaccines or immigration or any number of other subjects. It’s frustrating.

But if I were to attack everybody who says something I disagree with or find problematic, I would be doing neither side any favors. I see it this way: either a person is going to listen or they are not.

If they aren’t going to listen to my argument then however forcefully I make it I won’t reach them. If they might listen, then shouting and bullying them will only make them defensive and unwilling to listen any further.

I know that when I first started writing about autism I was on a steep learning curve. At first I was pretty ignorant, uninformed. I invested my time in learning as much as I could, interacting with people through their blogs.

In the early days my terminology was less than perfect; there was more I didn’t understand than I did. I dread to think of the reaction I would get today from some people I have seen on Twitter and elsewhere!

But luckily the people I interacted with were patient and forgiving. Tolerant of “newbie” mistakes. So my investment of time and effort in learning about autism was worth my while.

If I’d been bullied for things like person-first language (“person with autism”) or for innocently using problematic phrases that are common in colloquial speech, I think I’d have disengaged from the autism “community”.

I don’t know that I have contributed a whole lot myself, but I know for sure that I would know a heck of a lot less about myself and autism.

So, tolerance. Be forgiving of others’ mistakes. Try to help them understand better, give them a chance to learn and improve.

Some may say that it’s not their job to teach everyone they encounter. But if not, then whose job is it? Do you seriously think everybody will spend time learning as much as possible before they begin to interact publicly?

By putting myself out there in public spaces as autistic and trans I have made myself, intentionally or not, into a representative of those identities. I owe it to myself and everybody else who shares those identities to do what I can to increase people’s knowledge and understanding.

The best teachers are patient, compassionate, and understanding as well as knowledgeable. What use is knowledge that is not shared? What use is a message that nobody will listen to?

This post was originally posted on my personal Facebook wall.

Religion and Belief

Religion and Belief

I’m not a believer, nor a member of any religion. I never have been. My wife, on the other hand, is Catholic and has a strong belief in god. For her, belief is a source of strength: a firm anchor that she can rely on to remain fast in the face of an ever-changing world.

My mother felt similarly; she wasn’t religious in the sense of attending church or praying regularly but she maintained her strong faith. I was always puzzled by people’s belief in the divine. I have never felt any sense that there was some ubiquitous presence. There’s just me and the universe around me.

My natural curiosity has led me to speculate about religion and belief since I was a child. A particularly cynical child who could not imagine any benefit from subscribing to the archaic, male-dominated, hierarchical view of the world promoted by the Christian churches. I had–and still have–a consistent world-view that works for me with no obvious gaps into which I feel compelled to fit a divine entity.

However, as I have matured I have come to recognize that their beliefs do provide comfort to some people. Something to hold on to: as long as they maintain their grip they cannot become lost. It provides a sense of security, a safe haven. A sense of familiarity and unchanging stability that feels like home.

That is a feeling I can identify with, although my personal comfort derives from being in a predictable environment with well-established routines. In some ways this mirrors the trappings of religion with days being measured by regular masses and prayers, the familiar Sunday attendance at a church service. Echolalia substitutes for the recitation of the Rosary; stims rather than the sign of the cross. Subconscious ritual.

Understanding leads to acceptance. I can understand why their faith is so important to some people, I can see how it gives them strength and support. I accept them as they are.

What I cannot accept is intolerance. Whether it stems from religious teachings or the influence of others in society does not make a difference: intolerance is the opposite of acceptance. It’s hate instead of love. It destroys instead of supporting and nurturing. If your faith truly gives you strength, then be strong enough to love and accept those who are different from you.

Resisting Erasure

Resisting Erasure

There are some strong parallels between being autistic and being trans. Both derive from the way our brains are set up; both set us apart from the majority of people; both are largely misunderstood and even feared. And both have seen an increase in media coverage over recent years.

Celebrities including Susan Boyle, Daryl Hannah and Paddy Considine have publicly stated that they are on the autism spectrum. But coverage of autism has paled beside that devoted to transgender people: I wouldn’t be surprised if there have been more TV minutes and column inches solely about Caitlyn Jenner’s recent gender transition than there have ever been about autism.

The biggest difference is that autism is an invisible condition; there are no physical characteristics to identify somebody on the spectrum. Being transgender is all too visible, affecting one’s outward presentation. It’s perfectly suited for the show-and-tell of TV and photographic media: no need to burden the audience with detail, just give them before and after shots.

For both conditions the media is a mixed blessing. Increasing awareness is a good start but without detail, without providing a deep insight into the minds of those with either condition, there can be no understanding. Awareness alone doesn’t help us.

Such insights are elusive; they must build on a foundation of experiences that are familiar, laying course after course of analogy and asking the audience to incrementally build a picture of something that is foreign to them. No wonder the media so often takes the easy path of simply repeating the same old stereotypes.

But these stereotypes are often harmful, feeding prejudices and serving to portray us as broken, defective people. Autistic people are painted as emotionless and unsociable, unable to form or maintain relationships, objects of pity and ridicule who act in strange, frightening ways. Trans people are often shown as freaks, objects of revulsion indulging in a twisted sexual fantasy. We’re objectified, erased as people.

This is what we need to overcome to gain acceptance: we just want to be seen as people. We don’t want to be pitied or feared, laughed at or persecuted. But mainstream media continues to fail us by rarely if ever educating its audience. I don’t want tales of inspiration, I don’t want the shock-factor of graphic surgery. I want to see our everyday realities, our unexceptional — dare I say normal — existence as we simply live our lives. But who’s going to pitch a TV show about that?

I don’t know how best to raise understanding beyond awareness. I fear that our experiences are simply too far removed from those of the non-trans, non-autistic majority for them to ever gain more than an intellectual knowledge of our lives. How can they learn what it feels like to need to stim to regulate sensory input? How can we convey the strength and depth of the pain when your mind knows a reality of existence at odds with your physical body?

How else will we be accepted and not excluded, othered, erased?