Good nights Canterbury - and better days

University of Canterbury researchers have taken a major step forward in treating sleep problems in children with Autism Spectrum Disorder and have now extended the project to include children with rare genetic neurodevelopmental disorders.

A high proportion of these children have difficulty with bedtime routines, problems settling to sleep, waking at night and waking too early.

"This is harmful to the child’s development in many areas of life and adds to the stress experienced by parents and siblings," says Associate Professor Laurie McLay, a principal investigator in the Good Nights Canterbury Autism and Sleep Project.

She says sleep problems can be related to a number of factors, including sleep/wake schedules, sleep hygiene, and other aspects of the sleep environment.

“There is often some kind of circadian component – some aspect of the sleep/wake cycle that will need to be adjusted.” The circadian rhythm is a 24-hour internal clock that cycles between sleepiness and alertness. “We start by looking at circadian components then we look at sleep hygiene (factors in the bedroom environment and bedtime routine) and other environmental factors that might be maintaining the sleep problem,” Laurie says.

"Our research has now shown that there is a range of strategies therapists can recommend to parents and children that are highly effective in helping children with ASD get a good night’s sleep, but they need to be tailored to each child. It is the individualisation that makes the big difference.”

Funded by the Health Research Council and the IHC Foundation, the project involved 41 families with a child aged 3 to 15 years who had received a clinical diagnosis of ASD and had at least one severe sleep problem. Two-thirds of the children were boys. The families came from throughout New Zealand, with those outside Christchurch taking part by email, phone and Zoom/Skype.

A sleep diary kept by parents, complemented by videos of parent-child interaction and a range of standardised questionnaires, helped researchers understand the child and their sleep problem.

Researchers analysed the child’s sleep/wake schedules, sleep hygiene, and environmental factors, including the interactions between the parents and child, that might have contributed to the sleep problem to create an individualised sleep treatment.

The study found that the severity of the sleep problem was reduced for the majority of the children. The benefits of treatment were maintained at both short-term and long-term follow-up (at 4–6 weeks and again at 12–14 weeks after treatment). As yet unpublished results also show that the improvement in the children’s sleep also let to reductions in their ASD symptoms and their behaviour and to some improvements in parents’ wellbeing.

The team is continuing its research and welcomes enquiries from parents interested in participating. Contact Laurie McLay or Karyn France.

The research has been published in the Journal of Autism and Developmental Disorders

Listen to the Radio New Zealand interview

Instruments of the World unite

Participants in an Arts Integrated performing arts programme this year plunged headlong into a world tour of musical instruments.

The Instruments of the World project started as part of the group’s class work. Tutor Sam Corry introduced a Latin American guioro and an African mbira to the class and before long participants started bringing in instruments of all kinds. The project grew with students researching the origins of their instruments – from Scottish bagpipes and Latin American maracas to the Hawaiian ukulele – and then they presented their findings, which were filmed by tutor Fiona McKenzie.

The project grew from looking at instruments to researching, playing and then presenting to the camera.

Arts Integrated is a performing arts course for young adults in Christchurch, with a special focus on enabling and inspiring those living with disability. It covers spoken word, acting, poetry, mime, dance and music and is largely student driven, responding to ideas generated by the group.

It has been providing programmes for people with disabilities since 2013, supporting up to 24 students at any one time to experience performance skills, partially funded by Hagley Community College. 

The IHC Foundation has supported Arts Integrated with funding towards the costs of employing an assistant tutor.

Jolt Dance school raises the bar

It’s not just the bodies that move in the Jolt Dance programme for primary school children. The dance company is shifting people’s thinking about who can dance and who can teach.

The integrated dance company is running a programme in Christchurch primary schools taught by Jolt Move trainees, all of whom have disabilities.

Jolt Diversity Dance Project is a new initiative as part of its Move Tutor Training Scheme. The project offers dance sessions for Years 3–7 students in mainstream primary schools. Up to 35 students are taught exclusively by the Jolt Move trainees in each session.

Jolt Artistic Director Lyn Cotton says the project was piloted in Christchurch primary schools last year and was a success with teachers reporting that the visits had a big impact on their students. The pilot was funded by the IHC Foundation in 2017 and the programme received further funding this year.

“It won't be the math strategies or how to paragraph that stand out for the children this year. It will be most definitely this experience,” said teacher Mandy O’Sullivan after a session at Somerfield School last year. “Diversity Dance is about movement but I also believe that it is a movement – it is a mind-set shift that all of society should be exposed to. It starts with the children.”

Last year the programme ran for four weeks of each term, this year it has increased to seven weeks a term and the programme is in demand. The Move trainees lead a 45-minute dance session that encourages students to express their individual dance moves and to work with others. There is also a 15-minute discussion time when the students can ask the tutors questions about their lives and gain a deeper understanding of what it is like to live with a disability.

Before the sessions, schools are sent an information sheet introducing the Move trainees. Each school can then decide if they want to prepare questions and discuss issues around disability or to leave the students to experience the session spontaneously.

The aim of Diversity Dance Project is to encourage young students to think about disability and difference in a new way. The trainees lead the sessions independently and the dance activities encourage students to watch others and be confident in expressing their own unique ideas. The hope is that students will gain an understanding that everybody is valuable and deserves to feel like they belong.

Lyn says she is committed to career progression for the trainees as dance teachers. “There is a whole assumption around it – that they can only be assistants or volunteers. “I don’t believe that. I think the only thing that is holding people back is opportunity and time,” she says. Lyn started with five trainee tutors in 2013 and has boosted their numbers to seven. She is still working with the same core group. They start as assistants in the community classes run by Jolt, then progress to teaching part of these activities, then finally to plan their own classes. The Diversity Dance Project was the most recent progression.

“What I love about my work is that I continued to be amazed at what’s possible and to think where can we go next. I have got to work out the ways that bring out the best in my guys.”

Christchurch Symphony Orchestra violinist Sarah McCracken and Zac explore music and movement.

Sailors tackle the choppy waters of Tauranga Harbour

Up to 75 sailors with disabilities have now signed up to tackle the choppy waters of Tauranga Harbour with Sailability Tauranga.

The group was formed in 2016 by former Tauranga Yacht and Power Boat Club Commodore Peter Dallimore, now Chairman of the Sailablity Tauranga Charitable Trust. They now have a small fleet – Hansa class 303 boats – and 50 volunteers committed to giving people with disabilities the opportunity to sail.

Early in May 2018, the group held its first Sailors Award Ceremony. Sailors were awarded certificates for individual achievements, such as courage, perseverance, taking the helm, regular attendance and going solo.

“For some, just getting into a boat was a challenge, to steer a boat an even bigger achievement and to sail solo is a massive step forward. It gives us all a great sense of fulfilment and joy to see the beaming smiles of our sailors as they come back into the dock after an hour on the water,” Peter says.

Since Sailability Tauranga purchased its own sailing dinghies in late 2017, it has been able to offer group bookings to community organisations. Of its 75 registered sailors, half sail on a regular basis. They come from a variety of organisations, including IHC/IDEA Services, The Blind Foundation, The Stroke Foundation, Tauranga Special School, Geneva Health and many privately enrolled sailors. 

Rhonda Ritchie, the Club Captain, says the group sails on four days each month in summer and for two days a month in winter. Each session is an hour long. On top of that, it runs a separate programme for schools. It has recently engaged with three secondary school special education units. Trial sailing days have been held with the view to channelling the students either into its regular sailing programme or setting up regular schools sailing days. 

Expanding its sailing opportunities in the future depends on being able to recruit and train suitable volunteers to operate safely on Tauranga Harbour’s exposed and challenging environment. “We do not have any sheltered sailing areas so our current fleet is always accompanied by at least two patrol boats requiring two crew members each and we will have to add a further patrol boat as our numbers increase.”

Funding provided by the IHC Foundation has helped to provide safety equipment, including a RIB (rigid inflatable boat) and motors.

New approach to gene testing provides answers for families

A new approach to genetic testing funded by the IHC Foundation has provided diagnoses of rare genetic conditions for 11 New Zealand families so far, with more positive results expected from a pilot programme.

A research team, led by Professor Russell Snell, Dr Jessie Jacobsen and Associate Professor Klaus Lehnert at the University of Auckland, used the latest genome sequencing technology to look for a genetic diagnosis for children with undiagnosed, rare neurodevelopmental disorders.

Twenty families from throughout New Zealand participated in a two-year pilot study to discover the genes responsible for disorders that couldn’t be explained through standard tests. The team hoped to provide answers for at least 10 of the 20 families but the results are even more encouraging.

Of the 20 families, researchers discovered the gene or mutation responsible for the condition in 11 individuals. These results will now be confirmed by a diagnostic laboratory and clinicians will discuss treatment options and other implications with the families.

The results from a further seven families are still being analysed but Russell says he is optimistic that they will be able to provide a diagnosis for at least half of these families.

Researchers were not able to provide a diagnosis for two families, but Jessie says the team has no plans to give up and will now look for more complex causes. She says they will look for things like deletions or duplications or more complex breaks in the chromosomal material.

“Sometimes I underestimate how brilliant it is to be able to provide a family with a diagnosis. Having an answer can be a real relief for the family,” she says. For families dealing with very rare conditions, it means they can connect with others elsewhere in the world for support and to share information. For others it will mean the end of a long ‘diagnostic odyssey’ to get an answer, or to know whether or not it is an inherited condition.

Russell says the team is achieving results with their streamlined sequencing process as good, if not better, than anywhere else in the world. “We are quite good at this. Most people use a simplified process that struggles to discover the very rare disorders.”

He says their process is more cost-effective than standard tests that screen gene by gene. The team sequences the whole genome of the affected individual but only 1 percent of the DNA (the exome) of the parents. Sequencing the exome – the protein-coding regions – is about half the cost of sequencing the genome. The exome is thought to harbour about 85 percent of DNA variations that cause disease. Their aim is to provide evidence to the Ministry of Health that this is the best clinical approach to genetic testing.

“It will simplify clinical genetics in the broader sense. If you do what we are doing you can replace all the clinical genetic tests with this single test – that is, sequence the genome and evaluate that. Because it’s simpler it will be more efficient and it will be cheaper in the long run. “It is of course hugely dependent on having biology experts with computer skills who can relate findings to the biology and we are very fortunate in having Klaus in our team.”

Former IHC Foundation Chair Sir Roderick Deane says the result of the research is great news. “I cannot tell you how pleased I am with the quality of this work and its outcomes. For parents to know what the problem is becomes hugely important to the families. “In the case of my wife Gillian and me, very many years ago, we did not know about our daughter Kristen having Rett syndrome until she was well into her teens. It was an agony not understanding.

“Some so-called specialists had the gall to tell us it was our ‘fault’ and others totally misled us with wrong diagnoses. In contrast, other medical people were marvellously supportive but did not know what the problem was. Then the specialist in the United States whom we saw wrote to us after we had returned to New Zealand and said she had just heard Andreas Rett talk at a conference and she immediately knew she had a patient with the syndrome. Even today, it moves me to think about it and what that information meant to us.”

Dr Juliet Taylor, Clinical Geneticist at Genetic Health Service New Zealand, says without this research many of the families would not have had access to the type of genetic testing that had the great chance of making a diagnosis. “The benefits of getting a diagnosis for these families are immense and include changes in medical management and/or reproductive options becoming available. Just as important, these families find out the reason why, and the benefit of this, for parents in particular, can never be discounted even many years after the birth of a child.”

The IHC Foundation funded the $147,000 cost of collecting and reading the DNA.

Gene researchers seek cause of rare disorders

When it started to rain there was standing room only

When it started to rain there was standing room only in the covered venues at InterACT 2017. But that was perfect.

It meant the workshops and classes at the annual disability arts festival at the Corbans Estate Arts Centre in Henderson were full of festival-goers wanting to have a go at the activities on offer.

In 2017, the IHC Foundation provided funding to Interacting Theatre to run InterACT2017 – a three-day festival showcasing performances, classes and workshops in Auckland. The Foundation has supported the festival since 2011.

The festival was held for the seventh year running in October-November. It attracted 4800 visitors over three days, there were 29 performances on the main stage, a wearable-arts parade each day and a display of artwork by more than 40 exhibitors.

Interacting Trust Chair Rod Wills said the wet weather on two days kept more festival -goers inside, who became the informal audiences for many of the workshops and drop-in sessions. Workshops were held in drumming, dance, clowning, hip-hop, looped recording music-making and masks. There were also drop-in sessions where participants could make comics and a poetry zine. Drop-in sessions included jewellery-making, face-painting and costuming.

Interacting community filmmaker Hank Snell made a documentary during the festival, assisted by festival participants.

Festival Director Paula Crimmens says the event is well-supported by special schools and disability providers. “It’s a great vibe. The atmosphere is terrific – it’s very affirming. When people ask, ‘Shall I perform?’ I say you will kick yourself if you don’t.”

Paula is now looking for performers to sign up for InterACT2018, which will be held at the same venue from 31 October to 2 November 2018. Email her on interactfest@gmail.com or phone 09 8495595.

For expressions of interest, go to www.tinyurl.com/interactfest18 

InterACT 2016 - Community showcase in sixth year

InterACT 2015 - Disability festival attracts crowds