By Carys Westcott VIJP

What do you think of when you hear the word ‘autism’?  Do you think that you could immediately identify an ‘autistic’ person by the way they talk or act? How much do you know about autism? 

This condition is one of many that affect a myriad of people in our society today and has particularly come to light in recent years as we hear of more and more people being diagnosed with it.  With around 1% of the UK’s population estimated to be autistic, a higher level of awareness of society’s role in understanding the condition better has been encouraged. This article briefly explores the subjective and objective aspects of autism and includes a short interview where I look through the lens of a carer living alongside autistic people.

Definition

autism /ˈɔːtɪz(ə)m/

noun

a neurodevelopmental condition of variable severity with lifelong effects that can be recognized from early childhood, chiefly characterised by difficulties with social interaction and communication and by restricted or repetitive patterns of thought and behaviour:

Having read this definition, what do you believe an autistic person to be like? And does it have positive or negative connotations?

I believe that having a ‘definition’ for such a condition is not at all helpful.  It immediately activates schemas (memory shortcuts) in our head that draw a picture for us of what an autistic person might look or be like.  It may even lead to us actively searching for these characteristics in autistic people we know when they may have none of them.  Society loves to ‘define’ something because it suggests that we as people know everything there is to know about it when, in reality, we’ve barely even scraped the surface.  We would far prefer to feign omniscience than to admit to the ambiguity that surrounds many such conditions, which is why qualitative research such as surveys and interviews are of paramount importance when furthering our knowledge on this condition.

Government prevalence surveys estimate that around 1% of the population is autistic, yet this statistic is ultimately futile: if it is believed that there can be a guess for the number of autistic people in the country, then why do we have the ‘autism spectrum’?  Everyone fits in somewhere on this subjective scale, meaning that the needs of all people vary wildly, with some categorised by having ‘additional needs’, and who are labelled as typically autistic.

Individuality

Another significant point to note is that autistic people are all individuals. When someone breaks their arm in a certain place, it is fair to assume that someone else who has broken their arm in this same place will experience pain in a similar area and have many of the same accompanying symptoms… Autism is quite the opposite.

It is a multi-layered condition which is very much not one size fits all.  Different autistic people have a myriad of different experiences and requirements, and it is not right to assume that, just because you have met one person on the spectrum, all other autistic people behave in the same way.  In fact, some people have other conditions so severe – ADHD, anxiety and depression to name a few – that it hasn’t even been considered that they might be autistic, and society perceives them in a different way as a result of this ignorance.

A few signs and symptoms

Although the autistic experience is mightily divergent between individuals, recurring features of someone with autism include:

• Sensory sensitivities: this is when an individual is particularly sensitive or reactive to an action or food. These range from avoiding physical contact to not being able to have butter on your bread. These can also include textural sensitivities whereby an individual will avoid certain food, avoid brushing their teeth or only wear certain loose-fitting clothing, as ‘their brains have difficulty organising and responding to information that comes through the senses’ (understood.org).
• Repetitive actions: Many autistic people will perform a movement over and over again when in a situation that they find boring, stressful or overwhelming.  For example, they might play with their hair or pick at a certain scab. This is known as ‘stimming’, or self-stimulating behaviours, and is a good indicator that an individual is not finding the environment they are in pleasant;  something to look out for if you are around an autistic friend.
• Struggle with empathy: Theory of Mind, defined according to the Cambridge English Dictionary, is the ability to understand that other people have thoughts, knowledge, and feelings that are not the same as yours. This explains the fact that, while autistic individuals are perfectly happy to offer sympathy to someone who is visibly distressed, they often find it difficult to read emotions and are subsequently regarded as being heartless or unfeeling, which is simply not true. Their brains are ‘wired differently’ which means that they are unable to read emotions, unlike their non-autistic counterparts. This is owing to the reduced connectivity in the brain, known as hyperconnectivity, which allows weakly connected regions to drift apart.

In order to provide a carer’s perspective on the integration of autism into our society,  following is an interview with a carer living alongside autistic people.  I spoke to my aunt Kathryn Emms who has two autistic children and very kindly agreed to answer some questions which I had to give us a further insight into what it is like to live with autistic individuals.

How useful is it to have this category as a label?

They, and we, now have a reason for understanding why they behaved and presented differently to neurotypical children. Reduction slowly in family stress.

Advantages and disadvantages of diagnoses:

Advantages –  getting educational help, correct schools, funding. Understanding from the rest of the world. Making our children realise their brains are wired differently from others. Children don’t feel stupid for having barriers to learning in comparison to peers.

Disadvantages – the children may wish as they are older to have not had a label at all; they may feel this choice has been removed from them by their parents. People may treat them/judge them differently.

What do you think it means to be diagnosed with autism?

It means you can attach reasons to feeling and behaving differently to others. It also means you can access the support you need in the community and from the government.

Would you say that being diagnosed with autism has been helpful in terms of other people’s understanding of your children as individuals?

Yes. The children are no longer labelled/judged as just ‘rude, naughty, defiant, undisciplined.’ No longer sanctioned in school for perceived behavioural problems.

Have there been any setbacks that you have experienced as a result of their diagnoses?

The children resist the idea of their diagnosis and not wanting to be ‘different’ by being autistic and considering it as a weakness.

What do you think the key gaps in our knowledge are in terms of autism and understanding the autistic person?

• Lack of acknowledgement of female diagnoses, along with media coverage and school training.
• Understanding that autism can manifest itself completely differently in males and females.
• To understand that when you meet one autistic person, you will not meet another the same.

What do you think mainstream schools could be doing to increase awareness of autism and what people who have been diagnosed might be going through?

Training teachers in mainstream schools is essential. Educating children as part of the national curriculum in neurodiversity. Training them to understand how an autistic person sees the world around them completely differently from a neurotypical person broken down into the categories of cognition and learning, sensory and physical, social communication and interaction and emotional and mental health.

Photo by Peter Burdon on Unsplash