Mothers share autism stories

Ignorance of autism and stigma are always issues for families.

Ignorance of autism and stigma are always issues for families.

IMPROVING THEIR LIVES: Koha Rangihuna (centre) with his siblings Allies and Shelley. Picture supplied

PUBLIC ignorance of autism and stigma are always issues for Nicky Grace to contend with as she raises two children in different places “on the autism spectrum”.

Her 14-year-old son is more seriously affected than her 11-year-old daughter. He has also been diagnosed with attention deficit hyperactivity disorder (ADHD) and oppositional defiant disorder.

The hallmarks of his conditions include intolerance of lights, noise and large crowds.

He has heightened senses, or what Nicky calls his ‘‘super senses’’.

He finds social interactions very difficult, and is perceived as a bully because of his loud and unpredictable behaviour.

In reality, he is often just feeling overwhelmed by the ‘‘busy’’ environment around him.

Nicky said her son was automatically judged out of ignorance.

“People fear what they don’t know, and assume he is just being naughty. But that is because autism is an invisible disability.

“He looks like your typical teenager and is expected to act as such."

Nicky said how he acts is his normal.

“I can’t change his behaviour — the only behaviour I can change is my own.”

She first became aware something was wrong when her son was two.

“He started rocking to music, lining up his toys and avoiding eye contact.

“There was something different about him. I thought he just had a little bit of ADHD”.

But her son’s behaviour intensified, and it was then that Professor John Werry, now retired but then the leading New Zealand expert in the field, diagnosed autism.

Nicky says autism is a spectrum that covers a wide range of behaviour. Every child is different. Her son is at one extreme while her daughter has another set of quirks, less obvious.

She admits her own knowledge of autism was poor when her son was diagnosed 11 years ago.

“I was in shock and denial because I didn’t know about these conditions” she said.

“I went home and looked them up. Years later I am still on a learning curve. I have gone with the advice that works for my whanau.

“He has a different way of thinking. That’s basically what it is”.

~


TESSA Rangihuna remembers her son screaming in a Gisborne shop and a man saying he would have physically disciplined him if that was his child.

Nobody understood that her son Koha hated loud noise, bright lights and public places.

Koha, now aged seven, was only two-and-a-half when he was diagnosed with autism.

He was born in Tititiki and it was there Tessa remembers an early childhood teacher having difficulty understanding her son.

Soon afterwards, a paediatrician was asking her questions such as whether Koha liked to sit in a corner and play by himself.

The doctor noticed Koha would not make eye contact with him.

“I realised what he was asking about,” said Tessa.

I kind of kicked myself for not realising what was going on with Koha,’’ said his schoolteacher mum

Visits to many specialists in Gisborne resulted in the diagnosis of autism.

“By then you could tell he was definitely very different from our other children,’’ said Tessa.

“He was obsessive with his train and didn’t like being cuddled. The simplest things like washing his hair, cutting his nails or getting him dressed for the day resulted in meltdowns”

Tessa says Koha will always be autistic but with many strategies in place to help him, he is able to cope with the many things that stress him out on a daily basis.

The Herald, Tessa and Koha met in Tirohia Gallery, where they were having an autism photography exhibition to highlight the struggles many families go through in order for their child to thrive in the world.

“The lack of information available to everybody about autism leads most people to believe our children are naughty, which is not the case”

Tessa said one advantage of caring for an autistic child is the way they see the world.

“It makes you slow down and see it through their eyes and to learn patience in abundance.

“I believe wholeheartedly they are here to teach us, enhance our lives and make us stop and realise what we have to be grateful for”.

“We love Koha and would not change him for the world.”

PUBLIC ignorance of autism and stigma are always issues for Nicky Grace to contend with as she raises two children in different places “on the autism spectrum”.

Her 14-year-old son is more seriously affected than her 11-year-old daughter. He has also been diagnosed with attention deficit hyperactivity disorder (ADHD) and oppositional defiant disorder.

The hallmarks of his conditions include intolerance of lights, noise and large crowds.

He has heightened senses, or what Nicky calls his ‘‘super senses’’.

He finds social interactions very difficult, and is perceived as a bully because of his loud and unpredictable behaviour.

In reality, he is often just feeling overwhelmed by the ‘‘busy’’ environment around him.

Nicky said her son was automatically judged out of ignorance.

“People fear what they don’t know, and assume he is just being naughty. But that is because autism is an invisible disability.

“He looks like your typical teenager and is expected to act as such."

Nicky said how he acts is his normal.

“I can’t change his behaviour — the only behaviour I can change is my own.”

She first became aware something was wrong when her son was two.

“He started rocking to music, lining up his toys and avoiding eye contact.

“There was something different about him. I thought he just had a little bit of ADHD”.

But her son’s behaviour intensified, and it was then that Professor John Werry, now retired but then the leading New Zealand expert in the field, diagnosed autism.

Nicky says autism is a spectrum that covers a wide range of behaviour. Every child is different. Her son is at one extreme while her daughter has another set of quirks, less obvious.

She admits her own knowledge of autism was poor when her son was diagnosed 11 years ago.

“I was in shock and denial because I didn’t know about these conditions” she said.

“I went home and looked them up. Years later I am still on a learning curve. I have gone with the advice that works for my whanau.

“He has a different way of thinking. That’s basically what it is”.

~


TESSA Rangihuna remembers her son screaming in a Gisborne shop and a man saying he would have physically disciplined him if that was his child.

Nobody understood that her son Koha hated loud noise, bright lights and public places.

Koha, now aged seven, was only two-and-a-half when he was diagnosed with autism.

He was born in Tititiki and it was there Tessa remembers an early childhood teacher having difficulty understanding her son.

Soon afterwards, a paediatrician was asking her questions such as whether Koha liked to sit in a corner and play by himself.

The doctor noticed Koha would not make eye contact with him.

“I realised what he was asking about,” said Tessa.

I kind of kicked myself for not realising what was going on with Koha,’’ said his schoolteacher mum

Visits to many specialists in Gisborne resulted in the diagnosis of autism.

“By then you could tell he was definitely very different from our other children,’’ said Tessa.

“He was obsessive with his train and didn’t like being cuddled. The simplest things like washing his hair, cutting his nails or getting him dressed for the day resulted in meltdowns”

Tessa says Koha will always be autistic but with many strategies in place to help him, he is able to cope with the many things that stress him out on a daily basis.

The Herald, Tessa and Koha met in Tirohia Gallery, where they were having an autism photography exhibition to highlight the struggles many families go through in order for their child to thrive in the world.

“The lack of information available to everybody about autism leads most people to believe our children are naughty, which is not the case”

Tessa said one advantage of caring for an autistic child is the way they see the world.

“It makes you slow down and see it through their eyes and to learn patience in abundance.

“I believe wholeheartedly they are here to teach us, enhance our lives and make us stop and realise what we have to be grateful for”.

“We love Koha and would not change him for the world.”

Exhibition raised awareness

SEVEN Gisborne families hosted an exhibition telling the successes and struggles of supporting someone on the spectrum of autism during Autism Awareness Month in April.

The exhibition has ended but the Grace and Rangihuna familes have also chosen to tell their stories directly to the Herald.

Autism, or autism spectrum disorder, refers to a range of conditions characterised by challenges with social skills, repetitive behaviours, speech and non-verbal communication, as well as by unique strengths and differences.

There is not one autism but many types, caused by different combinations of genetic and environmental influences.

The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism.

Autism’s most obvious signs tend to appear in children aged between two and three.

In some cases, it can be diagnosed as early as 18 months.

Some developmental delays associated with autism can be identified and addressed even earlier.

“Classic” autism affects four times as many boys as girls. One person in 66 has an autism spectrum disorder. This includes people who have Asperger syndrome.

About 65,000 people in New Zealand have autism spectrum disorders.

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