Dr. ?ine Roddy:

I will address Deputy Tully's three points.

First, she mentioned the Indecon report and the different literature about the cost of disability. I am a trained health economist. I did a national survey based on 195 families in Ireland who had 222 autistic children. They completed a comprehensive survey about the economic cost for the families. In the papers I supplied there is a detailed breakdown of out-of-pocket expenditure for the families. That was over €9,449.60. There is a full breakdown of the different types of out-of-pocket expenditure of families. They vary from special living, diet and clothing costs and care and assistance the parents need for their autistic children, to a certain amount of respite care, which does not account for an awful lot of money. Parents do not have the money to pay for respite care. They are paying for different medical costs, interventions and speech and language therapy. Different private interventions are a huge aspect of that. Then there are travel costs and trying to do skills training programmes. That is part of the €28,000. The remainder of the €28,000 relates to lost income from parents having to take time off employment. For example, a child may need to take time out of school or have appointments, so there is a certain aspect of that. The rest of it is the informal care costs.

The figure of €28,000 is exceptionally high. It is the highest internationally in terms of out-of-pocket expenditure and overall in terms of the cost for families. I add with caution that one of the problems is that there is so little evidence or research on this that there have not been very detailed studies done in other countries to this level to calculate the cost. There are, therefore, methodological issues there in that if this were done in other countries and with the exact same survey, it would be interesting to see the findings. I imagine they would be lower, based on the existing evidence in this regard. It is an exceptionally high cost. It is a cost that has been studied, and there are the published papers with all the figures to back that up.

I applied to be involved in the national autism innovation strategy and was not invited to be involved in it. I am the only health economist in Ireland specialised in the economics of autism and I am recognised internationally for my research. I work with the LSE. There are only about three health economists in the world specialised in this area.

As for best practice and how we could be leaders, one of the key issues is about consensus. When I first mentioned the three policy approaches I spoke about a person-centred approach. Often, the more you go into autism research and being involved with autistic people and their lived experiences, the more you realise they all have very different preferences about the types of services and supports they would like. That is extremely important because there can be some interventions that autistic people actually find more traumatic than helpful. It is extremely important to point that out.

I mentioned two studies that are supported by the autistic community, the PACT study and the JASPER study, which are used in other countries. The latter is a parent-mediated speech and language therapy programme which has been shown to be beneficial to autistic children in the UK. It was designed there. It is being used in other countries. I suggest it in the context of looking at the enablers and barriers in an Irish context because I am very mindful of the strain and pressure parents are under. If one suggests to some parents a parent-mediated intervention programme, they might feel that it is too stressful to have the time to be involved in implementing it. It is something worth looking at with caution as to how the autistic community and families in Ireland would feel about it. Certainly, in the UK the national autism organisation, Autistica, which has people with lived experience of autism, supports it. The findings show benefits in the long term for autistic children. It is a low-resource intervention, and the literature and practice internationally for autism are moving more towards naturalistic types of supports and interventions rather than intensive supports with therapists. Again, different people have different perspectives on that, but that is the direction internationally, where the research shows there is the strongest evidence of improvement in outcomes and supports.

There is great potential for us to be leaders in this area and to invest in it, but the issue of consensus is massive in Ireland. There is huge variation among health professionals in the autistic community on the direction they would like to take us. It goes back to the national autism innovation strategy. The more stakeholders that are involved, and consensus in terms of investing in services and supports that are respectful to the autistic community, the better. I cannot emphasise that enough, but it is not always implemented in certain situations. If we do not have that as a base, it is very problematic later. If autistic people are availing of services and supports, they can find that more traumatic. That is something that is crucial and must be looked at further in terms of developing best practice and consensus.