A world alone?

Autism has established a defining presence in modern society. About one in every 88 children born each year in New Zealand is diagnosed with the disorder. Shey Pope-Mayell, a year 13 pupil at Wakatipu High School, sheds some light on the issue of living with autism.

Imagine a world alone - a world parallel to our own, similar in every physical sense, but deprived of the ''normal'' regimes the citizens of modern society have come to live by.

This world is seemingly sparse of emotion, understanding and even affection. This is the ''world'' your autistic child is likely trapped in, though they probably cannot express it themselves.

Though no official definition has been stated, autism has been generalised as a neurological impairment that can significantly hinder a person's ability to communicate and interact socially.

Autism has established a defining presence in modern society, around one in every 88 children born each year being diagnosed with the disorder.

No matter if you are a parent, uncle or aunt, friend or sibling (like myself) of an autistic child, that is a truly overwhelming statistic.

Especially considering how frightfully misunderstood and stigmatised autism has been since the name was coined in 1911.

Social disinterest, lack of empathy for others, lack of verbal communication, delayed toilet training, obsessions with routine - it is enough to drive anyone at least a little potty (pun intended).

Fear not! For these are stigmas upon which, throughout this self-help discourse, I will attempt to shed the much-needed light of understanding.


One of the most common emotions parents of recently diagnosed children contend with is denial.

Denial that their child (neurologically at least) will never be quite the same as their peers.

Denial that their child may never experience mainstream education.

But most heart-wrenchingly, denial that they as parents may never truly know their child.

Since Swiss psychiatrist Eugen Bleuler coined the term autism in the early 20th century, positively diagnosed children have been stereotyped derogatorily as Kanner's babies, meaning the autism symptoms present in children are supposedly caused by the coldness and aloofness of their mothers during early childhood.

With this kind of implication being directed at mothers, it is no wonder why people like yourself would want to deny the presence of autism in your baby and isolate yourselves in the kingdom of solitude and safety your family home becomes.

It is your sanctuary, away from the threatening and judgemental serpents of the outside world.

But do you really want to do that? Do you really think that is what your life should come to?

Well let me tell you, it should not!

And I speak from experience.

My eldest sister was diagnosed with a mild form of autism when she was 8 years old, and my parents never gave up.

Instead of introverting themselves in an attempt to be free from people's judgement, they set out on a restless road to understanding, which started by seeking out an autism specialist shortly after her diagnosis, in the belief early intervention was the key to giving their child the best chance at success.

They were right.

She recently graduated university with high honours and is preparing to study for a master's degree in applied sciences.

Regardless of whether your child's aptitudes are in academia, the arts or sport, if my family's story is anything to go by, early intervention is your best friend when raising an autistic child.

In support of this, New Zealand's leading autism research centre, Autism New Zealand, has established itself as the pre-eminent provider of services and support for people on the autism spectrum and those who support them, and has proven to be a great supporter of intervention as a tool for success.

So denial will not help with anything - not with moving forward with your life and certainly not with understanding of your child.

Respecting differences

It is the busy shopping season at your local shopping mall.

You and your child walk intently through the crowded shops going about your daily routine, when suddenly your child stops dead in his/her tracks, clamps their hands over their ears and starts to scream frantically.

You place your arms around them gently and speak reassurances in an attempt to comfort them, but to no avail.

The hordes of people stop and stare at you both with judgemental glares and looks of disapproval on their faces.

I want you to imagine the helplessness, the frustration, and the emotion that not the parent, but the child would be feeling.

Autistic children have been proven to have different neural pathways connecting different sections of their brains.

This can cause them to perceive certain stimuli like sounds, smells and even touch differently to us.

According to the worldwide influential organisation Autism Speaks, a staggering 25% of all autistic children worldwide are non-verbal.

However, just because they may be unable to verbally express themselves, it should never suggest they do not have an identical range of emotions to us.

They feel anger, they feel frustration and they feel sadness, just like you and me.

The key is to learn to identify this and to respect your child's particular differences, because after all, not all people, autistic or neurotypical, are alike.

The relationship between autistic children and their parents can lead siblings of that child to become jealous and feel alone as their high-maintenance sibling may be taking up all the parents' time and attention.

This is another compelling reason why early intervention is absolutely essential for helping autistic individuals become independent.

If not, the relationship between the parents and siblings may potentially be damaged, permanently.

A popular media example of a person disrespecting and taking advantage of an autistic person is the infamous film Rain Man.

The film portrays the story of Raymond, an autistic savant with aptitude for mathematics, and his opportunistic older brother Charlie, who, upon discovering his brother's talent, uses him as a card counter in Las Vegas casinos.

Now I know what you are thinking: Raymond was a grown man, not to mention a talented savant.

And while this is true, one must not forget that many autistic people see relationships (particularly those with family) as being based on trust, whereas you might perceive relationships as being based on circumstance.

With this in mind, Raymond was simply seen by his brother as a pawn for him to manoeuvre for his own gain, while Raymond, with his trusting nature, obliged.

Rain Man has become one of the most influential autism-themed films of all time.

However, many people associate autism with the very specific personality quirks Raymond had, and forget every child is an individual.

The stereotypical characteristics of Raymond could turn into a profound hindrance for your child.

Some people may see them as an easy target to be taken advantage of, and others may see your child as being of savant ability and have unrealistic expectations of them.

The media can also have very positive effects on people's understanding of autism, as seen in the documentary film The Horse Boy, which portrays the inspirational story of a father's journey towards healing his autistic son's hindering ailments like social isolation and tantruming.

I am sure it speaks personally to many parents who may be troubled by similar issues, which in my experience is a far more positive and helpful message to people who might not understand exactly what autistic families are going through.

Educational excellence

What about your youngster's success and wellbeing in the education system?

From my experiences of observing my autistic sister and her career in primary and secondary education, the words ''educational excellence'' have a far broader definition than I first thought, and apply specifically to the passions of the child.

Firstly, teachers must understand no two autistic children are the same, and specific learning methods must be designed to reflect the needs of the individual.

For example, many autistic students will learn and recall information if taught with visual stimulus such as flashcards rather than outdated techniques such as rote learning.

Secondly, autistic children generally learn best from one to one interaction rather than group work.

Unfortunately, modern methods of education are more suited to extroverted learners, who enjoy group education with three to four other peers.

Your child is probably suffering from social anxiety enough already, without their school system pouring salt in their wounds.

But as hopeless as it may seem to assert yourselves against the ideals of mainstream education, there are certain things you can do to take control.

Understanding is the key to success.

With this in mind; organising parent-teacher conferences to make their teacher understand why your child needs what they need in order to succeed would be an appropriate first step to take.

Helpful discussion topics may include how to increase productivity in classroom sessions, encouraging teachers to facilitate small group work involving only one or two other peers when assignments are set, and if necessary, informing teachers of when to allow a child to be excused from an activity.

One other option you might consider is removing your child from their current school and placing them in a new one, as

my parents did when my sister's private school was not meeting her preferences.

Especially considering that, after they did this and introduced her to a home-schooling programme, her test results increased drastically from an average of 2% to 60% in just one year.

However, I realise this prospect might not be possible for all, due to differing issues ranging from finance to locale and to family.

The third option is to seek help from outside the school system, which could be provided by the Children's Foundation For Autism, which is committed to seeing the education system and society fully accept and include people with autism.

Autism may not have a specific definition but, for better or worse, it depends entirely on how the people of society choose to interpret it.

Contrary to popular belief, it does not have to be stigmatic, ambiguous or abhorrent.

Unfortunately, however, the world is far from perfect, and that is why I have made it my mission in this guide to give parents the tools they need to educate both themselves and others about their children and exactly how to relate to them.

Add a Comment

Our journalists are your neighbours

We are the South's eyes and ears in crucial council meetings, at court hearings, on the sidelines of sporting events and on the frontline of breaking news.

As our region faces uncharted waters in the wake of a global pandemic, Otago Daily Times continues to bring you local stories that matter.

We employ local journalists and photographers to tell your stories, as other outlets cut local coverage in favour of stories told out of Auckland, Wellington and Christchurch.

You can help us continue to bring you local news you can trust by becoming a supporter.

Become a Supporter