More awareness needed for autism spectrum disorder

Sophie Middleton shares the swing seat with her brother, Harry. Photo/Stuart Munro

Six-year-old Sophie Middleton is full of energy.

"Look at me," she calls, sitting upside down on the couch. Later, she returns to the lounge carrying a mop and announcing her mum has been "very bad" so must do all the chores. A short time after that she enters the room and starts to blow into a harmonica with her nose.

To most people, Sophie, whose favourite activities include "running", "hopping", and "jumping", would simply come across as a bouncy, excitable child. In reality, her hyperactivity is a symptom of her Asperger's, a form of autism which many people still mistake for bad behaviour.

"She's very direct, she's quite blunt, and she's quite honest," Marton mother Ayesha Middleton said. "She doesn't mean to be rude. That's made it hard for her with friends. That's something we will address at some point."

Sophie's directness can make her a little unpopular with other girls her age - when a classmate brought a pink unicorn toy to class, Sophie bluntly announced her distaste for it.

In her eyes, pink is an inferior colour.

"It's horrible, and it's a stupid, old colour," she said. Blue, on the other hand is "the colour of a shark".

"Everything about it is really cool and I love it."

Sophie, was diagnosed only recently as being on the autism spectrum. Her 7-year-old brother, Harry, is at the opposite end of the spectrum and was diagnosed at 2 1/2 years old.

Ayesha and James Middleton sit in their Marton home with their children, Harry and Sophie. Photo/Stuart Munro

"He's considered severely autistic or he's considered low-functioning," said Mrs Middleton, who is the Autism NZ outreach coordinator for Whanganui and Rangitikei.

"Sophie is high functioning, or mildly autistic. None of those words are nice or anything that I agree with, but that's just the medical terminology."

Harry, who is mostly non-verbal, must be supervised at all times, except when he is locked in his bedroom at night.

"He doesn't often notice pain. He's got no fear of anything. We have locks on everything, he's locked in his room at night, which has been hard."

Their home has high fences surrounding it so Harry can't climb out and cross the road, and his bedroom window has a grille across it ever since he was spotted leaning his full weight against the pane of glass.

The difference between their abilities means Harry is entitled to a one to one teacher aide at school, while there is no funding to assist Sophie.

Her condition manifests itself in anxiety and phobias.

Harry is considered "classically autistic" while his sister, Sophie, is considered "mildly autistic". Photo/Stuart Munro

"She questions everything," Mrs Middleton said.

In the car, Sophie would be asking non-stop questions such as "have we got enough petrol" and "are your lights on".

For a long time, Sophie also wouldn't leave her bedroom until an adult came in to get her.

"She didn't come out her room, gosh, until after she was probably 4," Mrs Middleton said.

"We were the luckiest parents in the world."

It would turn into a problem if Sophie had been sick in her room, but wouldn't come out to tell anyone.

She also has a phobia of people vomiting, so "was in bits" and started "absolutely screaming" when she went to a party and another child threw up.

Sophie also doesn't like tight clothing, including socks.

Harry, who is under sensitive, loves to be cuddled and wrapped up.

Harry and Sophie Middleton share a hug. Photo/Stuart Munro

He is a visual thinker and likes to have things in pairs. He copes well with routine and repetition, Mrs Middleton said.

He is largely happy when in his own environment, but can get upset when things in the house are different. Sophie, on the other hand, becomes more hyperactive.

Mrs Middleton said there was a "genetic component" to her children being autistic.

Her husband, James Middleton, identified as being on the spectrum, and Mrs Middleton's brother did as well.

"We can see real clear on both sides and I suspect that's probably why we got a perfect storm and got Harry."

In New Zealand, approximately 40,000 people are diagnosed, which is roughly .89 per cent of the population.

"As we no longer lock children like Harry away, it's becoming more noticeable," Mrs Middleton said.

Despite this, she felt awareness of people with autism was lacking.

"I think that awareness isn't there at all, if I'm being 100 per cent honest."

Mrs Middleton knew of one 6-year-old boy with autism who had been stood down from school eight times in one year due to what was seen as bad behaviour. He has since moved to a different school.

"That happens all the time, that's not even an uncommon story. . . There's other families I know who think there should be a compulsory component to teachers training college around special education.

"I doubt there would be a teacher now who hasn't come across a child on the spectrum. These kids are getting left behind. These kids are the naughty ones - that's how the schools deal with it, as behaviour."

Mrs Middleton's goal is to help her children live full lives - she expects Harry will be able to move out at 18 like any other child.

"We're striving for his independence . . . how that will look will be interesting."

Mrs Middleton wanted to send a message to others who didn't know much about autism.

"I don't say it's a picnic. It's difficult. It's challenging. There probably should be more awareness and support for people on the spectrum. There's also not enough done for adults.

"I don't want pity, and I don't want people to feel sorry for us. I just want people to realise it is a challenge and we're doing the best we can."

What is an autism spectrum disorder?

It is a life-long developmental disability that affects social and communication skills. There are varying levels of severity and manifestations.

People on the spectrum may have difficulties interacting with others, communicating, developing creativity, and they may show repetitive behaviour patterns, have sensory issues, or display a talent for a particular topic or activity.