Study to explore benefits of music therapy for ASD

Dr Daphne Rickson from Victoria University’s New Zealand School of Music

A Victoria University of Wellington academic has been awarded nearly $100,000 in funding to research the effectiveness of music therapy for children with Autism Spectrum Disorder (ASD).

The New Zealand IHC Foundation funded-project, led by Dr Daphne Rickson from Victoria’s New Zealand School of Music, explores the potential of music therapy for 10 New Zealand children with ASD.

Dr Rickson says there is a need in New Zealand and internationally for studies that provide hard evidence about the impact music therapy can have on the development of a child’s interpersonal communication skills. These skills include attention, imitation, initiation, turn-taking and/or emotional expression.

“We know that music therapy is beneficial for children with ASD, but the nature of the therapy makes it difficult to provide evidence of this. By working alongside music therapists, we will develop a strong set of data that includes written reports and video, which can be further analysed to determine how effective music therapy can be,” says Dr Rickson.

“The most important part of this research is that we want more children with autism to receive music therapy. This research project will provide more evidence to argue the case for its place in the treatment of children with ASD.”

Read more about the project on Victoria University’s website here.

The IHC Foundation has also funded the NZSM’s ACTIVE MUSIC research project which you can read about here.

Gene researchers seek causes of rare disorders

Families may be closer to discovering the genetic causes of intellectual disabilities affecting their children thanks to a University of Auckland research project being funded by the IHC Foundation.

A research team, led by Professor Russell Snell, Dr Jessie Jacobsen and Associate Professor Klaus Lehnert, of the School of Biological Sciences, is using the latest genome sequencing technology to look for a genetic diagnosis for children with undiagnosed, rare neurodevelopment disorders.

Twenty families from throughout New Zealand are participating in the two-year pilot study to discover the genes responsible for disorders that can’t be explained through standard tests. The IHC Foundation is meeting the $147,000 cost of collecting and reading the DNA.

“Sequencing is reading the DNA that is in all of our cells,” Russell says. “The great advantage of the new method is that you are reading all the pieces of DNA in one step. The magic is taking all of these small pieces and comparing them to a standard.”

A genome is the complete set of genetic instructions or genes contained in each cell. In humans, each genome contains all of the information needed to allow us to grow and develop.

“We get the DNA from either blood samples or saliva samples. We collect DNA from the parents, where available, along with the affected individuals,” he says.

The participants with intellectual disabilities are mainly children.

Only the individuals will have Whole Genome Screening, which looks at the complete set of DNA at a single time. “In the parents we sequence all the exome – the protein-coding regions. It’s approximately half the cost of sequencing the genome,” Russell says.

The exome in humans is about 1 percent of the total genome, but is thought to harbour about 85 percent of DNA variations that cause disease.

“The rationale behind that is that we expect to see variations in affected individuals. Some of the variations might be in the protein coding, but some of them might exist elsewhere.

“If we had more money we would sequence the whole genome in all individuals, but this group of cases will tell us how successful this more limited approach is,” he says. “For the current work the funding has come from the IHC Foundation, which is extremely generous. We are always looking for more funding as we have vastly more requests than we can support.”

The direct cost of sequencing is now as low as an overnight stay in hospital, but it’s not yet part of a routine approach to treatment. Russell says the aim is to build a case for making genome screening part of routine clinical practice for undiagnosed conditions and conditions likely to be inherited.

“Traditional gene-screening approaches, where you only select one gene at a time for analysis, are appropriate only for well-known conditions.

“The majority of conditions are rare and cannot be identified through this slow and expensive process. This leaves the patients and their families without a way to assess the risk of future pregnancies and can lead them on lengthy and costly diagnostic odysseys,”he says.

“Fundamentally, understanding the genetic basis of a condition is a very important first step towards the identification or development of a treatment.”

He says that a diagnosis can often help focus treatments.

Being able to put a name to a condition and to be able to describe causation can give families comfort and remove the worry that some environmental factor has caused a condition.

“Some families are interested in having more children, and finding a cause can mean they can make choices about having more children.

“We are working hand in hand with clinical geneticists across the country and we are building the evidence for the routine application of these technologies. Our hope is that as soon as a child presents with a developmental condition, the first port of call is that they will have their DNA sequenced if they choose.

“All the variations that we discover in our research lab are re-checked by the formal diagnostics laboratory and the results, if the patient or parents would like them back, are delivered through the formal genetics service,” Russell says.

The team believes that the new, cost-efficient genome-wide sequencing can dramatically increase the rate of genetic diagnoses in rare conditions.

In the course of this research project, the team is expecting to find the gene mutations responsible for neuro-developmental disorders in more than 10 of the 20 participating families. Russell says they can make that prediction based on past experience.

“There are some conditions where intervening early with a therapy can prevent longer-term damage.” Already the team has been able to identify two cases where early intervention has proved to be beneficial. “If the conditions were recognised from birth, the benefit of treatment could have been even greater,” he says.

“As a group we are quite good at identifying causal DNA variants now, and at least as efficient as the best groups in the world. This is because we are a research group. We spend more time on each case than a diagnostic laboratory can currently. However, with the experience being gained through our work and internationally, the process is becoming increasingly efficient.”

Williams Syndrome Association camp is a lifeline

IHC Web Specialist Mao Vaireka had a special reason to attend a two-day camp over Easter for people who have Williams Syndrome.

Mao’s daughter Tatiana, now aged 12, was diagnosed with this rare, non-hereditary genetic condition when she was a year old. The syndrome affects only one in 10,000 births. This compares with Down Syndrome which, according to United States statistics, affects one in 690 births.

Mao and his partner Kylie, with Tatiana and her young sister Lania aged five have been attending the camps, held every two years at different parts of the country, since Tatiana was three years old.

The camps are sponsored by the New Zealand Williams Syndrome Association and some funding for this year’s event was donated by the IHC Foundation.

This year Mao and his family travelled to Brightwater, near Nelson, to join 30 other families for what Mao describes as a lifeline of support.

“We get to share our experiences about Tatiana’s schooling and life stages with families who have younger children. We also learn a lot from the families who have teenagers with the syndrome, which is a great help for Tatiana,” says Mao.

“It’s also helpful to share our experience with families of younger children who are newly diagnosed, so they can see that they are not alone,” says Mao.

Mao says that children with Williams Syndrome can have developmental delays in walking and talking and a calcium allergy that affects their nutrition intake. In more severe cases there can be heart problems.

At the camp there was plenty of expert advice to hand. Noted Williams Syndrome expert Dr Antonio Chasouris, author of Williams Syndrome, A Handbook for Parents and Professionals, who is based in Invercargill, presented his latest research.

“It was really great for us all that he made himself so accessible to families over the two days,” says Mao.

An occupational therapist helped parents identify characteristics around developmental delays and explained therapies to improve coordination. There was a transition session for teenagers moving into adult life, a music workshop and shared meals.

Siblings weren’t forgotten, with a confidence-building course for them, and volleyball and outdoor activities for all.

“If it wasn’t for the camp, we wouldn’t know there were other families in New Zealand to share our experiences with. It would be overwhelming.

“Getting together like this helps Tatiana and our family understand her condition and learn how to cope. There’s endless information about Williams Syndrome on the web, but there’s nothing like spending time with families in the same boat as ourselves,” says Mao.

For further information: www.williams-syndrome.org.nz

New play-based therapy explored for Kiwi kids

Victoria University researchers are offering a new play-based autism therapy to help the development of pre-school children.

For the first time in New Zealand, the team will offer a therapy developed in the United States, called the Early Start Denver Model (ESDM). IHC Foundation has contributed $42,600 towards the cost.

Project leader Dr Larah van der Meer and PhD researcher Hannah Waddington say the international clinical trials of the ESDM model of family-based preschool therapy are showing very positive results for children – including improved intelligence scores, greater improvement in cognitive and language abilities and fewer autistic symptoms. In some cases it led to a change in diagnosis.

Researchers (from left) Hannah Waddington, Larah van der Meer and Jessica Tupou.

The Victoria University team will include four trained therapists to work with the children and their families to develop language and communication, social interaction, imitation, cognition and daily living skills. Initially the project will recruit eight to 10 children and their parents.

One of the team members will be PhD student Jessica Tupou, who will not only offer the ESDM therapy but conduct research into its impact. She will also be working with a number of early childhood education providers in the Hutt Valley and training teachers in the therapy.

The team is now looking for Wellington region families to participate in the early-intervention therapy and associated research. See the brochure.

For more information see http://www.victoria.ac.nz/news/victorious/2017/autumn-2017/fun-and-games

Jolt Dance – Move Tutor Training Scheme

The Move Tutor Training Scheme has been running for four years and the IHC Foundation has been delighted to support this innovative programme since it began.

Move provides a pathway for people with disabilities to become leaders in dance disability. The programme supports trainees to confidently plan and lead a 45 minute class by
challenging them to make independent decisions and be creative.

Recently Move has extended the classes to include sessions with mainstream teachers, dancers, aides and coordinators.

Integrating the sessions into the Move scheme allowed the trainees to work alongside mainstream teachers, dancers, aides and coordinators. In turn the participants from the mainstream were able to engage and learn in a diverse environment.

The integration of Move into the mainstream community challenges perspectives about disability and has promoted the growth of dance in the disability community.

Open studio brings museum to life

A group of artists has taken up residence in the foyer of Te Manawa museum in Palmerston North to share their creativity with each other and with visitors and tourists alike.

They are part of NOA Open Studio, which opened towards the end of 2016 with funding from the IHC Foundation. It is one way in which the museum, art gallery and science centre is bringing the life of the community inside the building.

Chief Executive Andy Lowe says Te Manawa has a concept called ‘museum without boundaries’. “It’s about mixing it up and breaking down the barriers. We want to bring people who are often invisible and make them visible in our environment,” he says.

He says the IHC Foundation funding had “put wings on an idea” by enabling Te Manawa to really explore what it means to be inclusive.

NOA Arts Facilitator Aroha Lowe, his wife, has had a long involvement with outsider artists, with artists who have disabilities, with the elderly and with children. She says NOA is about sharing and inhabiting public space to create art together.

“The right of citizenship means that we can move through public spaces. We are part of things that go on. Te Manawa is funded by the ratepayer and anyone can come here, but some people have been under-represented,” she says.

“I was raised by my father who was disabled. He was seriously injured in a traffic accident when I was three – hit by a vehicle when he was walking across a crossing in Auckland. My mother had died of cancer just months before this. So, my father, post-coma, had to learn to talk and walk again.

“He was my hero, in that everyday, just-my-Dad kind of way, and I learned a great deal from him about bravery as he struggled through what was largely difficult terrain for a disabled father. We used to visit galleries, museums, shops etc before there were wheelchairs and other supports available,” she says.

“He would love Te Manawa. There are chairs just inside the door – wheelchairs available. The floor is level, the spaces accessible; the toilets too, of course. Staff are friendly and welcoming of those of us with disabilities.”

Artist and DJ Anaru Davis is a regular at NOA Open Studio, which operates from the foyer of Te Manawa museum in Palmerston North

Aroha says NOA stands for Notes Of Art. Noa is also a Māori word that can mean open, safe or free from restriction. “In Te Ao Māori, through powhiri, karanga, karakia and whaikorero, we use ritual to establish safety, to allow for each other’s difference and to find common ground,” she says.

The sessions are mixed ability and for all ages. “It’s about whoever is here on the day. People come in with clear ideas and it might be a very solitary experience. Other people come in and see who’s here and it might be a very organic thing,” she says. Also welcome are tourists, kids with their grandmas or caregivers, known and emerging artists, and visitors waiting for exhibition queues to clear.

Sailability sets sights on new jetty

When the north-westerly winds are blowing, the sailors from Sailability Wellington head for the shelter of Porirua harbour. No one wants to miss a day’s sailing.

Sailability Wellington, an organisation that makes it possible for people with disabilities to sail, now operates from three bases in Wellington – Seaview Marina, Evans Bay Yacht & Motor Boat Club and, for the past year, from the float plane jetty on Porirua harbour.

The organisation’s 62 volunteers support more than 200 sailors, but there are more than 80 on the waiting list. To meet demand, particularly in the Porirua-Kapiti region, Club Captain Don Manning is working hard to boost its capacity even further. He is fundraising to build a new jetty at Porirua, next to the Titahi Bay Boating Club, because the existing jetty can be used only at high tide. A new jetty will cost $150,000 and give them access to deeper water and longer sailing hours – and a calmer sailing option when the winds are too high for comfort on Wellington harbour. The jetty will also be available to local sailors.

“We would love to see it in for February next year because there is a Sea Scout jamboree being held on Porirua harbour.”

Don says that for the past 15 years his organisation has made it possible for sailors with disabilities to leave their limitations on shore. Once they get on board the emphasis is on what they can do – helming a yacht solo or taking part in a regatta. In an average year, each participant will get around 30 days of sailing. A number of sailors who volunteer with Sailability Wellington also have disabilities.

“Some people are scared of the water and we help them overcome it,” he says.

“When they sail solo for the first time, we have their parents and caregivers on the wharf and generally they cry. The mothers and grandmothers and fathers, who have all got tears in their eyes, are looking at us saying, ‘I am amazed that you would trust our son or daughter or granddaughter with an expensive boat’.”

The yachts are all modified for extra stability, with lead in the keel, but it makes them much heavier to handle than other yachts. In 2015 the IHC Foundation contributed $25,000 to purchase a sea crane and sling, buy a container to store boats, and cover engineering and other costs associated with the jetty project. In 2016 the Foundation granted another $25,000 to increase the number of volunteers and Club Captain hours.

Don says the Sailability Wellington Trust is bigger than the average yacht club. It owns 23 modified yachts, two safety boats, three shipping containers for storage, VHF radios and 100 life jackets – all funded by subscriptions, donations and fundraising.

IHC Foundation Chair Sir Roderick Deane says the Foundation is delighted to support the excellent work done by Sailability to enable people with intellectual disabilities to experience and enjoy sailing.