Autism: Making sense of it

Imagine communicating through a series of pictures, or struggling to communicate at all.

Shane Gilchrist delves into the world of autism.

It may be the school holidays but the von Ballmoos family is unlikely to travel far from their Kaikorai Valley home.

In the words of mum Lynlee, life is "very difficult".

Why? Both her sons have autism.

For Lynlee, husband Walter and their boys, Reagan (9) and Hayden (7), that diagnosis translates into no family holidays (or certainly none near water or other potential hazards), no collective outings to movies, no cafés or restaurants.

In fact, Lynlee says she has no social life.

Why? Well, her youngest is what she terms "a runner and a climber", a boy completely lacking any sense of danger.

Thus they can't visit others unless the premises are fenced - and it needs to be a high fence.

"As for holidays, we can't go camping or anywhere with lakes or rivers nearby. Because of the food situation, we never go out to restaurants. Hayden wouldn't sit at the table, for one, and he wouldn't eat the food."

That makes it tough, not only for the parents, but also for older brother Reagan who, having greatly benefited from a combination of parental effort, intensive therapy, early-intervention educational programmes and strong support at Wakari School, is now keen to share the world enjoyed by other 9-year-olds: he wants to go to the circus, the flicks, McDonald's for lunch ...

"We can't do that together," Lynlee says.

"Either my husband does one and the other person does something with the other child.

"I'll be honest with you. My husband and I have just started counselling, not because our marriage is breaking up but because we have very little time to ourselves. We were very strained.

"We've just started and are finding it really good. We have an hour where we just talk. It's about spending that quality time together."

Yet the von Ballmoos family are not alone.

According to Autism New Zealand figures, more than 40,000 people (that's one in 100) in this country have been diagnosed with an autism spectrum disorder (ASD).

The key symptoms of autism are, broadly: difficulties in relating to other people and situations; impairments in speech, language and communication; repetitive and self-stimulatory responses; and obsessive insistence on environmental sameness.

People with the disability can also have accompanying learning disabilities but, whatever their general level of intelligence, everyone with the condition shares a difficulty in making sense of the world.

As autism has differing degrees of severity and a variety of forms, ASD is often used to describe the whole range and includes the condition Asperger's syndrome.

People with Asperger's syndrome are of average or above-average intelligence and generally have fewer problems with language, often speaking fluently, though their words can sometimes sound formal or stilted.

In the von Ballmoos home, Hayden communicates through pictures.

His autism is severe; he is non-verbal.

To explain what he wants or describe how he feels, Hayden uses a book that sits, always, on a coffee table.

At this stage, there are three pages solely for his use: one is for food, another for activities, the other for outings.

"He'll have a picture of himself - 'Hayden wants' - and he will go through this book and take out what he wants and point to it: `Hayden wants . . . yoghurt'," Lynlee explains.

"That takes away all that frustration.

"Structure and routine is very important to these children. These kids are very visual. My house looks like what you'd term a 'compic' [a communication resource comprising some 1700 pictographs]. There are labels on everything in the house. Food is a big issue with a lot of these children because a lot of it is sensory (texture, taste).

"I've been fortunate in that both of mine have been good sleepers. I think I would have gone insane if they weren't."

Both boys attend Wakari School.

Reagan, who was first diagnosed with ASD aged about 3, requires little support.

A "social butterfly", he has become indistinguishable from his peers.

"With Reagan, the social thing was huge for us," Lynlee says. "It was one of the good things we worked on ... but Hayden is not aware. He doesn't talk; he doesn't know how to play, so we are teaching him. It is a long way off yet."

Hayden, who was diagnosed a few months before his third birthday ("We knew what to look for"), now acknowledges his schoolmates, but there was a time when he wouldn't even see other children in his world.

If someone was in front of him, they risked being walked over, Lynlee says.

Now children can talk to Hayden, albeit in clipped form, perhaps using one or two words.

"Instead of them saying, 'Hayden, come with me and play on this', they'll say 'Hayden, come'. And the fact he is looking and taking it in ... whether he goes along with it is another thing.

"Hayden has been taught through a 'compic' dictionary, which has every picture of everything in the English dictionary, with different categories. It has nouns, verbs, auxiliary verbs, gender, places, professions . . .

"Hayden is at the stage where he can do a six-word sentence. The progress he has made from one word to six is massive. He is now starting to really love the computer, which is a huge tool for these kids."

Lynlee and other concerned parents established the Otago Children's Autism Support Group in 2004.

An incorporated charitable trust, the group provides funding for parents to use an internationally recognised treatment known as ABA (applied behaviour analysis).

Using an intensive, one-on-one programme, therapists have worked with Hayden at home since he was first diagnosed with ASD.

Like Lynlee, Sharon Bain has a son, Luke (9), who has autism. And like Lynlee, Sharon is helping fellow parents.

Four years ago, she established the Otago branch of Autism New Zealand, which now supports more than 200 families in the region.

"I thought, 'this needs to be done'. I always think that the best advice you can get is from someone who has travelled the road before you. Doctors and all that can say all they like, but families need strategies to get through the day."

As well as organising meetings and talks for concerned parents and facilitating social networks for a small group of adults with autism, the Otago branch employs a support worker for 20 hours a week.

"That person will be there, whether it's for support at meetings or a chat, visiting people, schools - whatever people want.

"We have a wonderful resource library with more than $4000 of resources for families to upskill themselves or work on different things with children.

"Among the resources is a short video titled, In My Shoes. We've found that has been a huge success in educating school pupils about autism."

Sharon, who also works for Altogether Autism, a company which provides disability information and advice to families, believes early intervention is critical.

"It's all about getting children the help they need." Lynlee agrees.

Commenting on a recent Otago Daily Times article that highlighted a Dunedin-based company's move to upskill teachers, carers, GPs and other health professionals who deal with autistic people, she thought Innovative Learning's initiative "was very good, but a shame it's all going to America and Europe".

Innovative Learning, headed by chief executive and psychologist Dr Mike Reid, of Dunedin, will launch two new certificate programmes later this year.

The certificates are the result of a partnership between his company and Antioch University Santa Barbara and will also be distributed in the United Kingdom by Ludlow Street Healthcare.

The programmes, aimed at improving the care given to those diagnosed with ASD, offer a combination of online learning and practical community-based exercises, and will be available worldwide, although primarily aimed at the US and UK markets initially.

The first programme is to begin next month, and the company hopes to attract 1000-1500 students in the first year, doubling in two to three years.

"They say it's an epidemic, but we have an epidemic here," Lynlee laments.

"One in 100 children are diagnosed with autism in New Zealand ... The fact so many children are being diagnosed is just incredible. They say the diagnoses are up because there is so much awareness out there now."

Epidemic. It's a term that suggests some sort of outbreak or rapid rise.

To describe autism as such is misleading. Certainly, diagnoses of ASD have increased in recent years, but the data is largely based on referral rates for health services, rather than an actual number of children born with the condition.

Adrian Higgins, a Dunedin psychologist who has worked in special education since the early 1980s and has spent the past 10 years dealing with adults with autism, says there is a difference between "incidences" of autism (the rate at which people are born with the condition) and "prevalence" (the rate at which it is identified in the community).

"There has been a lot more diagnosis of autism because we have changed the diagnostic criteria," he says. That means it is difficult to effectively and accurately gauge any rise (or fall) in the number of those with the condition. Put simply, you're not comparing apples with apples.

"When I was working in early intervention, if you had already had a developmental condition like Down's syndrome, it specifically excluded you having autism. That definition got changed about 10 years ago," Dr Higgins says.

"It has proven to be problematic to compare different time periods as the studies have used different criteria, definitions, methodologies and populations.

"Early epidemiological studies used [Austrian psychiatrist Leo] Kanner's original criteria, which was very narrowly specified and typically quoted prevalence rates of four to five in 10,000 children.

"A 2004 joint study by the United States-based Centre for Disease Control and Prevention (CDC) and the American Academy of Pediatrics concluded that the figure of 1 in 166 children was an upper estimate.

"CDC certainly released information in 2007 on data collected over several sites in the US during 2000 and 2002 which showed that one in 150 8-year-old children had been identified as having an ASD. Their figure gives an indication of the number of children being identified with ASD."

The specialist services manager with the Dunedin Community Care Trust and vice-president of the New Zealand branch of the Australasian Society for the Study of Intellectual Disability, Mr Higgins questions whether diagnosis at birth for ASD or within one year of age is even possible.

"The median age at first diagnosis of autism in the CDC study was 52-56 months," he notes.

Though much attention has been focused on children with ASD, there is another group that is often overlooked, Mr Higgins says, pointing to those who are diagnosed with autism or Asperger's later in life.

The Dunedin Community Care Trust assists adults (those over 18) who have an intellectual disability and/or an autistic spectrum disorder "to live as independently as possible in community settings".

It currently supports about 143 people in Otago and Southland and specialises in helping people who have challenging behaviours.

"Twenty-seven of the people we support have a confirmed ASD diagnosis, eight of whom meet the criteria for autism and 19 who have a diagnosis of Asperger's. In addition, we support another six to eight people who have 'autistic tendencies' but have not had a formal diagnosis of ASD.

"Often they will come in with criminal offending histories and are referred to us. Off the top of my head, last time I counted we cared for 20 people, many of whom don't have intellectual disabilities.

"We support a small group of people who have the 'classic' autism - non-verbal, high support needs, very challenging behaviour."

Though Mr Higgins has been "intensively involved" with adults for the past nine years, he can still recall the moment he first encountered autism.

In 1982, on placement in a special class while at Christchurch Teachers College, he met a girl whose cry for help was made by way of a cricket bat to the back of his head.

"It was her way of communicating that I was not spending enough time with her. It was an early introduction to the notion that apparently challenging behaviour can have a communicative purpose."

Which brings us back to Lynlee.

The mum of two young boys knows there's plenty of work ahead, plenty more hours adding and combining pictures to that book on the coffee table.

She also knows a lack of understanding babysitters means nights out are likely to remain rare (and who wants to go out when you're exhausted?) Yet she remains upbeat.

If greater diagnosis begets greater awareness of the world in which some minds revolve, all the better.

"Our trust has often done presentations at ladies' Probus meetings, Rotary clubs. They are really keen to hear about it. They have heard about autism but don't know what it is.

"They'll say, 'look, I saw a kid at the supermarket and thought they were a naughty child'. Now they understand that maybe that child is autistic.

"Two years ago, if those situations happened, it would break my heart. Now I've got stronger and if I see someone giving me this look, I can say 'he's autistic'. And they'll say 'oh, OK' and scuttle off or understand why.

"I wasn't able to say that a couple of years ago."

Fact file

What is ASD?

Autism Spectrum Disorder (ASD) is a life-long developmental disability affecting social and communication skills.

As autism occurs in differing degrees of severity, the term Autism Spectrum Disorder is often used to describe the whole range. This term includes the condition Asperger's syndrome, which describes people at the higher end of the autism spectrum.

Who is affected?

It is estimated more than 40,000 people in New Zealand have been diagnosed with Autism Spectrum Disorders.

"Classic" autism affects four times as many boys as girls; Asperger's syndrome affects nine times as many boys.

Asperger's syndrome

People with Asperger's syndrome do not have the accompanying learning disabilities often associated with autism.

In fact, they are often of average or above average intelligence.

Many children with Asperger's syndrome attend mainstream schools.

What are the causes of ASD?

The exact cause or causes are unknown but research shows genetic factors are important.

It may also be associated with various conditions affecting the brain such as; maternal rubella, tuberous sclerosis and encephalitis.

Recognising the disorder

Features of the disorder can vary widely from one person to another.

For example, a child with an autism spectrum disorder may make eye contact, speak with perfect grammar or put an arm around another child who is crying.

Occasional behaviour such as this doesn't exclude an autism spectrum disorder; it's the overall pattern that's relevant.

All those affected have impairments in social interaction, social communication and imagination.

Repetitive behaviour patterns are a notable feature, as is a resistance to changes in routine.

Sensory issues

People with an ASD may have "sensory issues" where they can be either hyposensitive or hypersensitive to outside stimuli, such as particular sounds or smells.

Particular sensations may be very absorbing, others may be unbearably intense.

Special abilities

Some people with ASD will display talent for say, music, mathematics or technology.

Some have a remarkable memory for dates and things of particular interest.

What do I do?

If you suspect someone has ASD, have them referred for a specialist diagnosis and assessment as early as possible through a health professional.

Source: Sharon Bain/Autism New Zealand Inc.

For more information, visit www.autismnz.org.nz [2]