The Problem with Autism

Last year, at the age of forty-eight, I discovered that I have autism. While it explains some of the difficulties I’ve had in life relating to people, especially my father, and my low tolerance for sensory overload, I have struggled to accept the label: autistic.

I’ve have had many labels slapped on me throughout my life: shy, too quiet, boring, too sensitive, clumsy, too serious, prude... I took these labels as criticisms, personal insults, variations of the complaint I heard so often: ‘why can’t you try harder to be normal?’ They cut me up for years, but eventually I learnt to brush them off, recognising them to be what they really are: signs of the bully’s own insecurities and envy at my strength to be my own person. After all, labels are always derogatory, aren’t they? Slapped on us by those who wish to belittle us and cut us down.

But now, I had a label that implied all these previous labels were correct and that I was in fact defective. This label was supposedly not a criticism or personal insult (though I have heard it used it as such), but a medical disorder, something that needed curing.

I struggle to understand how my basic way of being can be a disorder. How can I have a disorder when I have no symptoms? I do not suffer from autism. It does not cause me pain and discomfort unlike other chronic conditions I have – autism does not affect me at all.

The only time I notice I have this so-called disorder is when I am around other people and I become aware that they feel uncomfortable with my social awkwardness, intensity, incoherent blabbering and wild gesturing or my sometimes unexplained quietness. How can a disorder affect those around the afflicted, but not affect the one who actually has the disorder? Doesn’t that imply that it isn’t a disorder at all, but rather a condition of intolerance? Like gluten? Gluten isn’t a problem on its own, only to those who cannot tolerate it.

To be frank, I find it offensive that what I see as my unique quirkiness and the source of my greatest gifts, creativity and unconventional thinking, should be labelled a disorder, a defect, even a disability.

At the same time, I understand that there are many who are severely limited by autism and do need support and care, and they are offended by people like me (even though I am autistic myself) who don’t believe that autism is a real disorder. This is my problem with autism. The label, the word itself is misleading and confusing. It’s too generalised, too vague.

So what is autism?

According to Autism New Zealand autism ‘is not a single condition but a cluster of underlying neurological differences that are present in varying combinations’. To put it differently, the term autism is an umbrella term for many individual conditions that affect neurological processes. It’s a collective term, in the same way that eye disease is a collective term used to describe any and all conditions that affect the eye or heart disease for the heart. This is what makes the term so problematic.

We don’t say that people who wear glasses for reading are blind, in the same way we don’t treat people who have heart murmurs as if they are disabled. And yet, this is exactly what people do with autism. Mention autism and people immediately think Rain Man.

People talk about autism being a spectrum, but this too is misleading. This is because the spectrum of neurological function (such as social awareness, executive function, information processing and neuro-motor functioning) which is measured to determine the presence and severity of autism is the same for everyone, including ‘normal’ people. Everyone is on the spectrum! Every single person has some degree of what makes up autism.

Autism is further defined as ‘a set of neuro- and socio-behaviours that deviate from the socially-accepted/norm’. Read that again: behaviours that deviate from the accepted norm. Not behaviours that cause a person to self-harm or hurt others or prevent them from living a normal life or from looking after themselves. Behaviours that are simply considered not normal.

Diagnostic bias

What exactly is normal anyway? And who decides what is and is not normal? I’m assuming ‘normal’ is determined by self-proclaimed ‘normal’ people, the so-called neuro-typicals, right? So my ‘disorder’ is based purely on the opinion of those in the neuro- and socio- majority, the ruling class of modern Western society. I’m sorry, but that doesn’t sit well with me. It feels less like a diagnostic measure and more like a system designed to discriminate and oppress – a violation of basic human rights. Wasn’t it only a few decades ago that a self-proclaimed master race set about creating a list of criteria to determine the desirables from the undesirables?

There are also many other types of neuro- and socio-behaviours that deviate from the socially-accepted/norm: narcissism, sociopathy, psychopathy; yet somehow society seems more accepting of these as normal variations of human behaviour than autism. Perhaps it’s because it is socially-acceptable to lock away or even execute those who act out their narcissistic, sociopathic or psychopathic tendencies.

Maybe I’m being pedantic and overly-dramatic, but I struggle to understand how finding it difficult to maintain eye contact or excessive gesturing in public is a disorder yet cross-dressing or being in love with someone of the same sex is a natural and acceptable expression of gender identity and sexual orientation. How can one form of natural human behaviour be a disorder while the other is considered normal? (At least now anyway – it wasn’t long ago when any deviation from being straight was considered a disorder. Note: I’m not anti-LGBTQ+ – I actually identify as demisexual myself – I merely used that example to make my point.)

Until sign language was developed deaf people were considered cognitively and intellectually impaired. The early label for hearing impaired was ‘deaf and dumb’. We now know better, right? Yet, it’s only in the last thirty years or so that introversion has become accepted as a normal part of the personality spectrum. Thanks to Freud, introversion was seen as a disorder and people were actively encouraged or even forced to seek therapy to become extraverted. Freud believed introverts were mentally ill, emotionally stunted and narcissists!

What is considered normal, not only changes over time, but also differs from culture to culture. Some cultures value eye contact while others see it as rude. Some cultures admire bold outgoing behaviour, and others respect quiet reserved behaviour. In American TV shows the heroes are bold, extraverted, tough, macho, yet look at Asian TV shows and the heroes are quiet, reserved, intelligent and often possess mystical superpowers like synaesthesia, savant syndrome and… autism.

My point is that what is considered a disorder is very often a matter of opinion – and opinion is always biased.

Myths and misinformation

Many say the proof that autism is a real disorder is that it’s on the increase. Well, that’s a myth. Variations in human behaviour have been around since the dawn of time. It’s just that what is considered normal acceptable behaviour is different for every culture and has changed over the centuries. In the past deviations in behaviour were labelled differently and often attributed to influences like demon possession, madness, witchcraft or intoxication. Children with development problems were treated as simple-minded and institutionalised or sent to work houses. If they were lucky enough to be of wealthy families they were often locked away in an attic and kept out of sight, and even removed from family records to save their families from embarrassment and shame.

The world was also very different in the past and a lot more autism-friendly. It was quieter and life moved slowly, and there was a greater appreciation for the arts. Artists, poets, philosophers, composers and scientists were the celebrities of the day and admired for their creativity and insight, and their eccentricity was seen as endearing. The modern world is getting smaller, louder, fasters, brighter, more competitive – stress and sensory overload are an everyday burden. Is it really any wonder that neuro-atypicals are finding it harder and harder to cope and find a sense of belonging in a world that no longer wants them?

If we look at the apparent dramatic increase in autism in the last twenty years, it’s easy to see the reason behind the trend. These are children being born to Millennial and Gen Z parents – the two generations who generally lack basic life skills, have the poorest self-discipline and shortest attention spans in history and feel the most entitled. The increase in behavioural and development problems in children is not necessarily a sign that autism is on the increase, but more likely it’s a sign that today’s new parents are ill-equipped for parenthood.

It may also appear that there are more autistic children now than in the past, but let’s not forget that autism was first described in the 1940s and only became a commonplace term in the last thirty to forty years. It wasn’t a thing when I was a child, but that doesn’t mean it didn’t exist, it just didn’t have a name.

The truth is that autistic children of my generation and previous generations grew up unnoticed. We were not given special attention or had our specific needs supported. We weren’t helped and nurtured. We were simply expected to toe the line like everyone else. We were bullied and mocked by our peers for being different and punished by teachers and parents for misbehaving and acting out. We had our autism beaten out of us and out of self-preservation we quickly learnt to adapt or hide our behaviour to blend in and not draw attention to ourselves. Later as adults, people are often surprised to learn that we identify as autistic.

Autistic people are often seen as inferior and incapable, yet previous generations of autistic people prove it’s possible to grow out of autism. Considering how adept we actually are at doing this, it implies to me that we are in fact far more capable and adaptable than neuro-typicals, since they can’t seem to adapt to us. Perhaps then, it’s actually neuro-typicals who are defective and could learn something from us. After all while most of the neuro-typical world struggled with the isolation of lockdown, most of us neuro-atypicals were thriving in our natural state.

Embracing neuro-diversity

I believe we should dispense with the words autism and autistic altogether. They are often also used as a slur or convenient catchphrase to make demeaning remarks about anyone who doesn’t fit in with the crowd, like the word retard was used in the past. It’d like to see people be respectful and refer to the specific conditions that affect or limit a person such as sensory sensitivity, social anxiety, etc.

If we must use the words autism and autistic let’s reserve them only for children and those who are severely debilitated and require help and support. Neuro-atypical could be used for the rest of us who deviate from the norm. Neuro-diverse works too, but in reality everyone is neuro-diverse.

Neuro-diversity like gender diversity, sexual-orientation diversity, race diversity, personality diversity includes all of us – the majority and the minorities.

Diversity is the natural state of the world. Uniformity, conformity is a manmade construct and is the root of illness, disease and war in any system or society. Diversity is essential for our survival. It’s time to embrace neuro-diversity as the normal natural state it is.