THE current BBC drama The A Word has highlighted the difficulties families with a child living with autism face on a daily basis. One of the most common developmental disabilities in Northern Ireland, affecting 30,000 families, autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.
Statistics from July 2015 showed at least 1,300 children are waiting for a diagnosis here, with nearly 300 waiting more than 12 months for an appointment. While Health Minister Simon Hamilton has recently pledged an extra £2 million in an effort to speed diagnosis, many families are struggling with the daily demands of caring for a child with autism, often referred to as autism spectrum disorder (ASD).
A recent report by Professor Karola Dillenburger, director for the Centre for Behaviour Analysis at Queen's University Belfast, highlighted that early intervention based on applied behaviour analysis (ABA) is recognised internationally as best practice and can enhance the quality of life of people with autism.
ABA is a systematic way of observing someone's behaviour, identifying desirable changes in that behaviour and then using the most appropriate methods to make those changes.
Unfortunately ABA-based interventions are not available in the north's health service but one charity which uses it as a method for changing the patterns of behaviour of children with autism is PEAT (Parents' Education as Autism Therapists).
Toileting, fussy eating, sleeping, social interaction, challenging behaviour and preparing young adults for living independently by guiding them on cooking, money management and general housekeeping, are just some of the area in which PEAT offer practical support and training.
PEAT has four certified behaviour analysts working with 32 children and young people each week, between the ages of two and 24. Based in their own homes, programmes are individually tailored to the unique needs of the family to ensure the parents and carers are empowered in meeting the needs of their child in their daily life.
"The professionals are starting to acknowledge that ASD is diagnosed by the excess or absence of behaviour. Behavioural analysis is not a treatment for autism, it's a science of behaviour, which has show great results in individuals with ASD," says Nichola Booth, lead behaviour analyst for PEAT.
Despite a growing amount of referrals from clinical psychology, social work, children and adolescent mental health services and educational welfare services, PEAT, which has been in existence since 1997, has never received any government funding.
They do charge fees for their services, but these are heavily subsidised, making them accessible to all parents regardless of their socio-economic status.
Just some of the success stories Nichola celebrated with parents were a seven-year-old daughter pooing in the toilet for the first time, a child who had their first dental visit and a teenager becoming more mentally stable and not self-harming anymore.
"There many autism charities out there and they all have their place, but we are one of the few that actually provide practical behavioural support. We go into the family home, school or supermarket, if a parent is having issues taking a child shopping. What we try to do is workout why the behaviour is happening and then put an effective intervention in place – it could be the child is hypersensitive to noise and there are too many loud noises in a supermarket," explains Nichola.
One of the many families to benefit from PEAT is the McVerry family from Newry. Eithne McVerry helps care for her eight-year-old grandson Neil, who was diagnosed with ASD at the age of three.
"We had the idea that once you get a diagnosis that the floodgates are going to open and there is going to be lots of help there. It's just not like that," says Eithne.
Although they had a few initial visits to their home from the health board's autism support team to set in place visual schedules for Neil and were offered two general training courses, Eithne says they were then "left alone to cope".
It was through an internet search that Eithne discovered PEAT four years ago and through monthly visits, ABA has been used to help Neil's social interaction, academic work and food acceptance.
"Neil didn't know how to behave in a playground or play with other children. Going to the shops was a nightmare and going to a restaurant or cinema was impossible. By breaking everything into tiny steps we can do all of those things".
Two years ago Neil's diet was limited to bread, toast and potato waffles.
"Neil was so reluctant to try anything new. Then you fall into the trap of only presenting him with the food he's only going to eat and you stop trying new stuff," Eithne admits.
“It wasn’t fussiness – Neil was genuinely terrified of these new foods. We used the process of desensitisation, getting him initially to hold the food,” Nichola explains. This progressed to smelling, licking and then eating a tiny little bit of the new food and rewarding each effort by having his face painted as a fox.
After taking an hour to eat half a pea and longer to try his first piece of cheese, Neil's diet has now expanded to include carrots, ice cream, fruit and he recently even enjoyed a pizza party with his friends.
"He now eats carrots, peas, pizza, ice cream. It's still a work in progress but at least he tries things and his fear of food has been taken away," says his proud granny.
While Neil still has "his moments", especially due to unexpected changed to his routine, the difference now is that family know they need to look for the cause of his anxiety and then put in place measures to ensure Neil can cope.
"Everything we do with Neil is geared towards him being able to live as independent a life as he possibly can. What we've discovered is Neil is able to learn almost anything if we teach in the right way. Because it's backed with lots of scientific evidence it makes me feel confident in applying it to any area of Neil's life. It concerns me that people are not being given the opportunity of seeing if it might help them," adds Eithne.
Last year the family took part in PEAT's Autism in the Air project, where they pre-visited the George Best Belfast City Airport ahead of a family holiday to Spain, as well as watching specially produced videos filmed from the perspective of a child taking their first flight.
"He was totally comfortable at the airport because he knew what was going to happen. On holiday he was able to eat out at restaurants, enjoy playing at the pool and mix with the other children. You wouldn't have picked him out as being any different. A few years ago that would have seems impossible."
:: For further information on PEAT visit www.peatni.org or telephone 028 9032 4882.
