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Autism – a parent’s experience

The effects of autism can be a challenge for children and families. IMAGE/GETTY IMAGES

Eli Hill

“I want people to realise that autism doesn’t define someone, it’s the person that defines someone.”

As part of autism awareness month being held throughout April, Midweek talked to Maree, the parent of a teenage girl with Autism Spectrum Disorder.

Maree’s daughter was diagnosed with autism aged four and there have been challenges both for her daughter and the family that Maree wanted to share to help people gain a better understanding of the disorder.

Maree said that during primary school her daughter had come home on the bus to find that every girl in school had been invited to a party except for her.

“My lovely little girl came home one day and on the bus were all the girls from her classroom, they got off and hopped on the back of the trailer and all these girls on the trailer went down to someone’s house that was having a birthday party.”

Maree said that next thing she knew her daughter was scootering down the driveway wearing gumboots, a pink fluffy jacket and gold tights.

“She scoots down the drive and stands next to this house and listens to these girls having fun at this party and she doesn’t go in and she just hops back on her scooter and comes back and just cries and cries and cries.

“That broke my heart like you would not believe, that people could be so exclusive, as to not include her.”

Maree said people need to look beyond the disorder and see the person.

“I’m really wanting people to accept people for who they are. I tend to say to people when they meet my daughter for the first time – you have to love her.

“If you love someone or something it makes it a whole lot easier to deal with someone or something because it makes it a lot easier to deal with the behaviour because you see it as the behaviour and not that person.”

Another challenge, Maree said, was shifting primary schools after the family moved.

“Our daughter had all the support at her previous school with teacher aides and individual education plans and we turn up at this new school and it’s like ‘Nope, we don’t do special needs at this school. We treat all the kids the same.’

“With a kid that’s on the spectrum, they often have sensory issues and so a classroom can be quite maddening for someone who’s on that spectrum, so to be totally ignored of any of her needs was a real slap in the face and she didn’t have a good time at that school at all.”

Now at high school, Maree said her daughter is “flourishing.”

“I just can’t believe what a change a school can make to a child. They accept her for who she is, she’s really intelligent.

“You’ve just got to accept them for who they are. Some of us are bossy and some of us aren’t, that doesn’t mean you should exclude us, that’s just how we rock and roll.”

Maree’s advice for parents of kids on the autism spectrum is to take some time to process before searching for help.

“When our child was diagnosed you go through a whole grieving process because your child looks like a normal baby, but they do things a bit differently and then all of a sudden you’re on another track.

“Sit on it a bit and process it then go look for help. In Wairarapa we have Autism Wairarapa which is a great place to source information, they can point you to the services that are in the area and can listen to you.”

Among the services Maree recommends is Wairarapa DHB’s FOCUS service, which offers respite care and can help, put into organisations that provide psychologists to support people in the house.

Autism Wairarapa also have a support group for parents of autistic children to discuss what’s been going on, and to find out that there are other parents out there.

“A lot of parents will put themselves into isolation. They won’t want to take themselves out or their children out because they’ll be questioned or judged and that’s not okay.

“There’s nothing wrong with their child, they just dance to a different beat.”

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