National autism registry to put spotlight on ‘huge gap’ in services

Maria McGarry’s daughter Róisín was two years and five months old when she applied to her local health office to have the child assessed for apparent developmental problems.

It was to be another 17 months, in what she describes as a “soul-destroying process”, before she was told on the day of a third assessment that Róisín, the youngest of three children, had an autism spectrum disorder (ASD).

The next morning McGarry went to the assessment of need officer in Naas, Co Kildare to find out what would happen next. She was told Róisín would be referred to “the NDT”, which meant nothing to her until it was explained that this was the Network Disability Team, part of the new Progressing Disabilities policy that is being implemented around the country.

However, the immediate effect of the diagnosis made things worse, not better, as McGarry explains.

“When she was going through the assessment of need process, she had started speech therapy in the primary care public system. Literally the minute she was diagnosed with autism they wouldn’t see her any more – it was not just a speech delay.

“Then I was on a waiting list for NDT and was left with nothing, so I ended up bringing her privately for occupational therapy and speech therapy.”

All along, McGarry’s experience has been that she has had to “push and push” for social welfare entitlements and supports for Róisín, now aged five, and the current struggle is to find her an ASD school place. After two years in a “brilliant” ASD preschool, she is due to start primary school in September.

That is a “huge worry; there are just not enough ASD places”, says McGarry who is on carer’s leave from her nursing job in Tallaght hospital. The education authorities’ solution, she suggests, would be to see how she gets on in mainstream.

“But she is not able for it and I am not going to do that just to suit the education system and resources. My feeling is that if she has the support of an ASD class early on in her primary school life she will hopefully integrate into mainstream further on.”

This shortfall in education and health services for children with ASD is something a proposed national autism registry is intended to help highlight. The pilot phase is to be launched in McGarry’s home area of Kildare/west Wicklow at the end of this month.

It is a research-driven initiative led by Prof Louise Gallagher, professor of child and adolescent psychiatry at Trinity College Dublin, and Dr Geraldine Leader, director of the Irish Centre for Autism and Neurodevelopmental Research at NUI Galway. Similar registries for cancer (established by the State in 1991) and cystic fibrosis (set up in 2001 and independently run by an advocacy group) have been used to inform and shape services for those patient groups.

The systematic collection of data on the 1 per cent of children who have autism should mean that in the future there is no great surprise, for example, that X number of ASD primary and secondary school places are needed in any given area.

‘Huge gaps’

Currently there are “huge gaps” in the provision of services, says Gallagher, and “the scale of it has not been appropriately quantified”. The registry’s ongoing gathering of information would not only highlight the clinical, health and social needs of those affected but would be of huge benefit in the research of effectiveness of interventions and medical treatments, and the exploration of possible environmental factors that interact with genetic profiles in causing autism.

In her clinical work as a psychiatrist specialising in autism, Gallagher is always meeting parents of children with mental health problems. Her experience of the overstretched, inadequate services has been a big motivation to get this registry up and running.

“There isn’t the same pathway of care that there is for a typically developing child – no inpatient unit, no daycare programmes, no automatic access to therapies that are specific to autism to treat their co-morbid mental health problems,” she explains.

“We are running to stand still and I would worry that we are over-relying on medication rather than being able to give them the full suite of services.”

A diagnosis of autism should be getting you services but, in some cases, it is actually shutting you out of services, she points out. Yet a very high rate of mental health issues exists along with autism; there’s an increased risk of anxiety disorders, mood disorders and attention deficit disorders.

“These are all conditions for which there are treatments, but if you can’t access those treatments, they are no good to you.”

A lack of intervention compounds the situation “and suddenly you have people locked in their rooms for two years or being aggressive at home”. It is very hard for parents to say a child is hitting them.

“Sometimes people don’t come forward until it is too late and behaviours can be very entrenched. I see lots of kids who do get interventions and, I know, when you get the interventions, you can do okay – not perfect, but none of us turns out perfectly anyway. You can reach a greater potential than if you don’t get the intervention.”

Gallagher, who has been researching autism for the past 17 years, is very conscious of the need for professionals like her to raise awareness of what families affected by ASD are living with.

Untold stories

“Their stories are not getting told and we see this as an opportunity to tell that story – and communicate it to the people who matter: the policy makers, service providers and the broader community.”

Parents of children with autism are not out protesting because they are too busy at home looking after their children, she says.

Gallagher and Leader carried out an extensive consultation, funded by the international organisation Autism Speaks, with autism support groups on the setting up of the registry.

“We were keen that, whatever we developed, it would be of relevance to the autism community and that they would feel some kind of ownership over it. All too often things like this can evolve and be inclined to sit in silos.”

They have enough funds for the pilot in the Kildare/west Wicklow region, where there are an estimated 450 children aged two to 18 with an ASD diagnosis. She puts the costs of this first phase at about €60,000.

Believing the registry is urgently needed, the research team didn’t wait to see if they could secure State funds to start.

“We want to demonstrate feasibility and demonstrate that it is something of value to health services.”

They will have to raise another €300,000 to complete a further rollout in Dublin, Galway and Mayo, before implementing it nationally.

Gallagher reckons this can be done for about €1 million – a small sum, it could be argued, for much better informed spending on the needs of these children and better outcomes for what is a lifelong condition.

The autism registry “will be a good thing if it is used in the correct manner by the people who need to use it”, says Maria McGarry.

She hopes that if her daughter is on it in 10 years’ time, when she will be coming up to the age of 16, that something will have been done to streamline services and to enable her to live as independently as possible. Meanwhile, she knows her job as Róisín’s advocate is far from over.

“You get one thing sorted, tip along for another few years and then you have another battle on your hands.”

swayman@irishtimes.com