The high profile case of a man with Asperger’s Syndrome being charged with stealing light fittings has drawn attention to the autism spectrum.

Police are continuing to pursue the case against Arie Smith-Voorkamp despite his mental disability and the fact he has no criminal history.

This week the police also announced they would investigate the Sunday programme over the story.

Arie and about 40,000 other New Zealanders are wired differently and can be obsessive, talented and have special needs.

The strain on their families is huge and 14 years ago a teenage girl with severe behavioural problems was killed by her mother. Janine Albury-Thomson’s defence was that she was driven to desperation trying to get respite care for her autistic daughter Casey.

The case sparked an inquiry into the needs of New Zealanders with autism but little has changed, and many of the recommendations the inquiry made have remained just words on paper.

Now the Government is looking to cut spending on what services it does provide.

Children with autism are sometimes withdrawn, need very little sleep and can be ultra sensitive to noise, touch and light.

Without help, their lives and those of their families can become a living nightmare.

Albury-Thomson said she has to live for the rest of her life with what she did to Casey, who she strangled with a dressing gown belt. Albury-Thomson said Casey has spent the night chanting and, weary and stressed, she cracked.

“I got to the point where I couldn’t express how I felt because I was just so incredibly helpless, hopeless.”

The trial led to an inquiry which resulted six years later with a range of guidelines, such as how to diagnose and treat people with autism, how to help them communicate and how to support their families.

But Alison Molloy from Autism New Zealand says of the approximately 280 recommendations in the guidelines, only about 15 to 20% have actively been put in place.

“The practical realities are that there’s 40,000 people in this country that really don’t get the sorts of support that they should be having.”

Molloy said the lack of support comes down to cost.

And soon cost cutting may force the organisation to cut existing services, such as education for the parents of autistic children.

“Early intervention is actually critical… because parents know when their children are tiny that something is wrong, and they can’t kick into services unless there is a diagnosis,” Molloy said.

Daniel Martin’s mother Louise said her son requires “heaps of assistance”. Louise realised Daniel had autism when he was 10 months old but the official diagnosis took a further 20 months.

“We were told by the paediatrician that it’s in the protocol… they are not allowed to make an official diagnosis before the age of three years,” said Louise.

But experts say the earlier the diagnosis, the earlier the intervention, the better the outcome.

The stress puts a huge toll on relationships and statistics show that 80% of couples who have a child with autism split up.

“You can only do something that hard for so long before there is cracks… and in our case it was our marriage,” Louise said.

Molloy said it is an absolute tragedy when the marriage breaks up because that isolates both parents even further, rather than at least having each other.

She said parents principally need support and respite from people who are trained to understand and work with autism.

Louise said the thought of what will happen when Daniel grows older is scary.

Molloy said there’s “next to nothing” available for people with autism once they have left school.

At first, Rosamund Hill and Martin Wylie didn’t realise their son Claude was autistic.

“I was just concerned because he just didn’t start to speak,” Rosamund said.

She said it was a “huge shock” to be told Claude was autistic, particularly because he wasn’t diagnosed until he was two.

“You’ve had two years of what you think is a normal child.”

Martin said they had a little boy who was apparently developing normally, speaking, happy, interactive and with a personality of his own.

“That person no longer exists. It’s just as if he’s gone,” said Martin.

Rosamund said Claude’s natural inclination is to be totally alone but he needs to be taught that playing with other individuals and interacting with other people is fun and interesting and worth doing.

Martin, a businessman, and Rosamund a neurologist, have the determination, knowledge and wealth to access the best care and treatment for Claude.

“It makes a huge difference, I think if you’ve got money. It makes almost anything easier to deal with because you’ve got options,” Rosamund said.

Those options include behavioural therapies designed to help his verbal, reasoning and social skills and Martin estimates the cost over a five year period at about half a million dollars.

And like Louise, they are worried about their son’s future.

Molloy said apart from people with goodwill, systemically there are no services for adults with autism in this country.

“If you have got family or friends that’s fantastic, and if you haven’t you live on your own.”

Martin Wylie has joined the board of Autism New Zealand to look at options for supported communities.

“The demand is overwhelming. A large number of people in the community are desperate to find somewhere where their adult children can live,” said Martin.

Wylie said the numbers stack up and his plan would be to start with families who can afford it to demonstrate what can be done.

“Then I’d be looking to charitable, and frankly government financing, to roll this model out.”

But that seems unlikely when Government cuts may soon force Autism New Zealand to abandon existing services.

Molloy said the stock phrase is “there is no more money”.

The Ministry of Health has allocated $15 million to fund autism support for the next five years but just this week Autism New Zealand shut its Waikato branch, and laid off five workers, leaving 791 people affected by autism without support systems.

“If we get to the point where we say ‘sorry we can’t even provide information, let alone tangible services’, it’s a pretty poor state of affairs,” said Martin.

But while autism poses huge challenges, it can also bring rewards.

Rosamund said Claude has changed their lives, and those of many people he has come in contact with.

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