Autism Awareness

In 2007, a United Nations (UN) resolution agreed that 2 April would become the annual World Autism Awareness Day. The main purpose of the day is to celebrate the diversity and resilience of people with any form of autism, and to recognise organisations which work to promote awareness of autism.

A Brief History

The term autism was first used in 1908, by Swiss psychiatrist Eugen Bleuler, to describe a schizophrenic patient who had withdrawn into himself. Autism derives from the Greek ‘autos’, (self), combined with ‘ismos’ (state of being). This reflects the fact that people with autism can seem socially isolated, and lost in themselves.

In 1943, American psychiatrist Leo Kanner, published a paper on ‘infantile autism’. His research group comprised children who:

• displayed little need to interact socially,
• focussed more on objects than people,
• showed various repetitive behaviours,
• had language development delays, and
• did not react well to change.

Kanner’s work made medical history. However, a similar paper published in 1944 by Austrian paediatrician Hans Asperger received less attention. The children which Asperger reported on displayed characteristics including:

• advanced language skills,
• intense interest in/understanding of one or two subjects,
• difficulty engaging socially,
• preference for routine,
• an unusual gait and posture, and
• a tendency towards clumsiness.

When British psychiatrist Lorna Wing rediscovered the paper in 1981, and translated it into English, people finally took note. Asperger’s syndrome became the term used to describe children displaying characteristics observed by Hans Asperger.

Autism Today

Research continues. Areas of interest include factors which may increase the risk of autism, such as changes in particular genes. A parent carrying these gene changes, may pass them to a child even if the parent does not have autism. Environmental factors can also play a part, such as parents who are older at time of conception, gestational diabetes, and premature birth, or very low weight at birth.

The language used to describe conditions associated with autism has changed. The diagnosis of Asperger’s syndrome, for example, is no longer used officially. People who would previously have been classed as having Asperger’s now fall within the broader classification of having Autistic Spectrum Disorder.

Diagnostic Challenges

Referral for an autism assessment is usually through a GP, or a special needs team if a child is at school. Diagnosis involves detailed assessments with a specialist medical team. For adult diagnosis, the process usually includes someone who knew the adult well as a child.

More boys than girls tend to be diagnosed with autism. Ongoing studies explore factors which influence lack of childhood diagnosis in girls. Diagnostic processes are perhaps directed more towards identifying autism in boys than in girls, which may be a consequence of the history of more boys than girls being diagnosed.

Girls and women tend to be more capable of ‘masking’. By learning how they are expected to behave in certain situations (particularly social interactions), they can hide their actual reactions.

I was an adult when diagnosed with ‘high-functioning autistic disorder’. This is an informal term used to describe someone who can live independently, with little or no extra support. However, people still experience difficulty with social interaction and communication. They struggle to read cues and may find it difficult to make friends. Social situations can become so stressful that they shut down, and withdraw. 

People described as high-functioning are often very particular about routine and order. They may have repetitive and restrictive behaviours which can seem unusual. They tend to mask feelings and reactions, using what they have observed and learnt over the years about how to behave. Their facial expression and tone of voice often remain neutral and settled, hiding what they actually feel.

Understanding Autism

Although there is much still to learn about autism, there are some common areas to understand:

• social interaction with anyone, from family and friends to strangers, can be extremely tiring, requiring a lot of mental effort to put learned behaviours into practice. Down time from socialising is vital,
• structure is important, plans need to be set out well in advance to minimise anxiety,
• people may have difficulty reading others, and will automatically mimic behaviours (including accents) to try to fit in,
• they might not understand humour, or seem – to others – to have an unusual sense of humour,
• those on the spectrum can be seen as ‘intense’, struggling to converse unless the topic is something in which they have a deep interest,
• autistic people (children and adults) may meltdown in response to an overwhelming situation. This is not bad behaviour, it is a means of coping. They need time, support and space. Not judgement,
• people might react unexpectedly to sensory stimulations such as temperature, noises, light, touch, and smell,
• a diagnosis of any form of autism does not automatically mean reduced mental capacity,
• autism is a lifelong developmental disability which affects how people experience the world, and how they interact with others,
• autism is not a disease or illness, there is nothing to ‘cure’, and
• being on the spectrum means certain difficulties are shared, but each person’s experience of being autistic may also be very different to others.

Supporting Someone on the Autism Spectrum

This depends on a range of factors, but might include:

• using clear language to explain things,
• double checking what the person is expecting in a given situation,
• asking the person what they would like to happen,
• giving someone time to process information,
• allowing them to plan and structure their tasks and activities,
• sticking to routine or expected plans, and explaining clearly (with as much notice as possible) if and why things need to change,
• helping to keep the person’s belongings in the order they like them, not changing or repositioning things,
• understanding the increased need for down time, and recognising when someone needs space,
• avoiding unnecessary touch or infringement of personal space, and
• recognising situations in which someone may become overwhelmed, and identifying how to help them cope.

Autism is not something to fear. Having a diagnosis does not change who I am, neither does it change how I experience the world. However, it helps me to understand myself differently, and to be kinder to myself when I struggle.

Finally

In 2017, the Māori language expanded to include 200 words and phrases used to describe mental health, disability, and addiction issues. The term adopted for ‘autism’ is ‘takiwātanga’, meaning ‘their own time and space’.

We all have idiosyncrasies. Each of us may display unusual behaviours at times, marching to our inner beat. I particularly like this quote from Churchill, which reflects the wonderful diversity of life:

~Nature never draws a line without smudging it~