Neurodiverse In A Neurotypical World

It’s hard to describe how it feels to live as a neurodiverse person in a world designed for neurotypical people. Take the small example of a shopping trip this week. The person operating the checkout scanned my items quickly. The belt which conveyed the groceries to where I stood packing began piling items up. They continued to build as the belt turned. It was too much. I couldn’t keep up; my arrangement of heavy goods, versus chilled, versus softer items was in disarray. Packets which had been facing a certain way were now the ‘wrong’ way round. On top of which the supermarket was busy, bright, and noisy. There was too much information to process. So why didn’t I ask the operator to slow down? Explain that I was overwhelmed and struggling?

Perhaps because I’ve spent much of my life masking. Presenting as I think society expects me to, whether at work or in leisure time. Making eye contact, hiding stimming behaviours, pretending to be comfortable in social situations. Perhaps also because I was raised in a society which expected children to behave a certain way. To keep quiet, and be good. To be ‘typical’, according to generalised definitions of the word. It’s not in my nature to complain, to ask for help, or to admit to feeling overwhelmed.

Assessment

The waiting list for autism assessment is a long one. Maybe three to four years. I was referred through my local mental health support team. Not in expectation that a diagnosis, or lack thereof, would change anything significant. More that it might help my understanding of how I work as an individual. None of us has a user manual, and we all operate in myriad different ways.

Taken in isolation, some of the indicators I presented with would also apply to other adults. But viewed in their entirety, and considered alongside personal history, they combined to build a picture of an autistic individual. Albeit a high functioning one, but one who sat a long way out on the scale of autism indicators.

Indicators

The assessment process included interviews, questionnaires, and input from someone who knows and understands me well. Evidence was collated from early childhood to the present day, and considered in detail a number of indicators. Note the indicators discussed below relate to my own experience, and are not applicable to all who sit on the autism scale.

Indicators include:

Discomfort in social situations, hidden by masking. A process through which an individual learns behaviours by observing others. Then attempts to replicate these in order to fit in. Examples include making eye contact – I struggle with this and sometimes do too much of as a means of trying to appear ‘normal’. Masking can also include mimicking body movements and even accents (subconsciously).

Masking cannot overcome difficulty in engaging in conversation outside one’s own – usually quite specific, and detailed – interests. Or the discomfort in having others in one’s personal space, and touching (such as shaking hands). Neither can it create a different sense of humour. I don’t laugh at things I either do not find amusing, or do not understand. Neutral facial features, and limited vocal inflection are also indicators. Words used in communicating are varied, but drawn from a somewhat formal vocabulary, apparent from childhood.

Movement – such as exaggerated gesticulations when speaking, and an inability to sit still. Leg or foot jiggling, finger tapping … which make noise and create movement, irritating me when others do them. Although I know I do them myself. And forgetting I’m holding things when I gesticulate, leading to spillages and breakages, and a perception from others that I’m clumsy. But I am clumsy. I fall and trip. I walk into things which I know are there. This is a common sign of autistic spectrum disorder. Caused, researchers believe, by an overlap in regions of the brain which process information and control motor skills.

Struggling to form friendships, and preferring one’s own company above trying to fit in with others. When relationships of any sort are formed, someone with autism may feel the attachment far more deeply than for neurotypical people. While outward expressions might be muted, internal emotions run deep. Emotions need an outlet, which can manifest in uncontrolled outbursts such as anger, upset, and (sometimes inappropriate) laughter.

Linked to friendship struggles is rejection sensitive dysphoria (RSD). Although RSD is not exclusively an autistic trait, those with autism can feel (perceived) rejection, criticism, or failure more intensely than others. An autistic individual may anticipate rejection, and will push people away rather than risk being hurt. If they feel someone important in their life has rejected them, the intense feelings can manifest both emotionally and physically. Underpinning the feelings is a desire to repair whatever it is that the autistic person assumes they have done wrong. They might not understand what this is, but will assume responsibility for repairing damage they believe they have caused within the relationship.

Neurodiverse In A Neurotypical World

We live in a world designed for neurotypical people. Divergence from the ‘norm’ continues to be regarded with some suspicion. Women, in particular, are likely to be diagnosed with autistic spectrum disorder later in life. This is partly because women are better at masking. This can arise because some early behavioural indicators of autism are frowned upon when demonstrated by girls. So they cover their behaviours and learn from others what is expected of them.

Being a high-functioning autistic adult means I can live independently. It doesn’t mean living in a neurotypical world is easy though. People make assumptions based on the fact that I present as an adult female. They expect me to behave in a certain way. But since diagnosis, and the greater self-understanding which that has brought, I feel less constrained to try to fit in.

I might not tell strangers when I am overwhelmed, but I am more confident in accepting who I am. And in taking extra steps to protect myself from the discomfort which comes with living with autism, particularly in relation to social situations and trying to understand other people’s behaviours.

Struggling to form lasting attachments can be a lonely path. But those I consider myself close to, I hold in deep affection. And my love of nature will always lift me, even when I feel most alone.

Finally

I’m conscious this post is about me, and my experience of living towards the far end of the high-functioning autistic spectrum. It’s not information which I share lightly, but I hope offers an insight into how life is, not just for me but for others who have this lifelong developmental disability. We’re human too, we just communicate and interact with the world differently to neurotypical people.

Early life experiences shape us all. For an undiagnosed autistic child, being expected to live in a society which isn’t particularly designed for them is extremely challenging. Routes to diagnosis are more available than they were years ago, but the process remains incredibly slow. Autistic spectrum disorder, in whatever form it takes, is a hidden disability. It needs to be taken more seriously, in terms of access to diagnosis and services, and management of the condition.

Further information:
Autism Awareness Day
Attachment
National Autistic Society
NHS Guidance