Alice-Mary Higgins (Independent) | Oireachtas source

I thank all the speakers. There are many points to follow up but I will try to deal with three or four. I will begin with the early part which is the question of diagnosis. I am particularly interested in comments the witnesses might have on adult diagnosis. The other part is co-diagnoses because the witnesses mentioned that there are frequencies. I know that Ehlers-Danlos syndrome, EDS, and ADHD often co-occur, but there are other co-occurring issues. What are the difficulties in accessing a diagnosis both for children, and we know that is a major obstacle, and for adults in later life? Also, with regard to diagnoses for co-occurring conditions, what are the difficulties or obstacles and what can be done about them? We are aware of the situation that happens across the health service whereby because the person has autism, when he or she is talking about another condition he or she is told that it is just part of having autism or being autistic. That has happened in respect of ADHD and in respect of depression. Perhaps the witnesses will comment on ensuring not just that the structure is in place in terms of access to diagnosis but that within the diagnostic system there is a recognition and a listening to the fact that people can have two or three different conditions on which they may need support.

Mr. Harris mentioned accessing health services in general. I believe the NHS has tried to improve how it is doing that with regard to people with autism accessing health services in general and being listened to and engaged with in terms of not just the mental health supports they might need but other aspects of the health service. I do not wish to put people on the spot but for people who have both had autism and then been parents there are things such as our maternity services. We have heard from groups who have appeared before the committee that there are also obstacles when one is accessing other parts of the health system. What could be improved in that?

I was very interested in the damage being done by inappropriate interventions, and it is something we have to examine seriously. In terms of interventions, what are the rights-based alternatives that are based on supporting the person rather than managing the person? How do we move towards that? Where are the areas and the best practice that we should be starting to invest in and to scale up in that regard?

I was struck when Ms Mullan mentioned the turnover of the professionals. There is the question of having secure terms and conditions and secure relationships, which is particularly important for people with autism. The relationship with the healthcare professional is important for everybody, but it is of particular importance that there would be consistency and that somebody who has a relationship can build it up. That has come up even with regard to why personal needs assistants can be important, because they are responding to the person's particular needs.

There are two more matters. One is the disability capacity review. Mr. Harris mentioned this and the funding for it. We know that there is a cost of disability report, which this committee has been pressing for as well. Do the witnesses think that the costs of disability for people may be invisible? In the case of people with a physical disability, some of the costs are more measurable, but what are the costs of disability in respect of people with autism? Augmented and alternative communication was mentioned. Is that something that needs to be resourced in terms of the disability capacity review? That almost was not on the table when the disability capacity review was first being done.

The committee is very passionate about pushing on the optional protocol so people can vindicate their rights. Do the witnesses have comments on the experience of using the other equality legislation that is in place, for example, equality legislation regarding discrimination or the public duty in equality and human rights? Has there been success in using any of those tools with regard to persons with autism?

There is a final matter. Some of the replies can be sent in writing as I know there is not a lot of time. How do we rebuild trust after the dossier issue? It is not just about the fact that it damages trust in a future database, but it also damages trust in terms of families seeking diagnoses for their children or for themselves. When we engaged with the Department's officials they talked about those individual cases. What we want to know is what they should be doing to rebuild trust overall in people's engagement with health professionals with regard to autism. What needs to change to send the signal that they have learned a lesson from that process?