Ms Margaret Lennon:

The SOP document states that parents should be fully informed at all times. I would go further. We should be consulted much more because we are doing the work that is needed in our homes. We get professional guidance, usually privately. As the professional bodies have outlined, the waiting lists are, unfortunately, horrendous. I echo the Psychological Society of Ireland. The cost of not providing early and appropriate diagnosis and intervention will be catastrophic given the rising prevalence of autism globally. Early identification is paramount. Figures for Ireland compiled by the NCSE identify that one in 65 children in the education system has a diagnosis. No data are being collected by the HSE to determine the real figures. How can a service or an education be planned if the data are not available?

The position in Ireland is so urgent that childhood developmental checks should be changed to incorporate the modified checklist for autism in toddlers. This would allow the HSE to be informed of the numbers coming into the service, even prior to an assessment of need. The service could then plan for these numbers and the staff hiring requirement. We have almost 20,000 members in our group, the majority of whom have children with autism. They are coming in droves and keep coming. On average, we are adding approximately 400 members a month and nearly every person who applies for membership has a child with autism.

We would also like to mention dyspraxia. These disabilities are often not easily identifiable unless a professional diagnostic assessment is carried out. The knock-on effects for children of not being able to access supports at school or via home tuition could be disastrous for many of them. There are even parents who will claim for domiciliary care allowance, DCA, if the desktop assessment states their child does not have a disability. While DCA and carer's allowance do not require a diagnosis, professional reports are needed. From what the professional bodies have outlined here today, it is clear that a 90-minute assessment will not provide that.