Ms Gillian Kearns:

I will talk about some of the things raised by the Senator; I cannot talk about all of them. First, on diagnosis as an adult in Ireland, there is no public pathway or it is extremely limited to those who have some other condition. Let us just say there is no public pathway to diagnosis in Ireland for an adult. The vast majority of people who are diagnosed when adults have to pay privately, after years of struggle, years of being dismissed and years of being diagnosed or misdiagnosed with other conditions and of being treated for those conditions when it turns out that they did not have them. There is no public post-diagnostic support. If somebody receives a diagnosis there is nothing for that person. It is a case of: "There you go. Best of luck to you".

I received my diagnosis privately. It was extremely expensive. I had to pay for my child as well. I am extremely fortunate but I recognise my privilege in being able to do that. There is a vast swathe of people who are not able to afford it. There are thousands of undiagnosed adults in this country whose views and understandings are not being heard here today. The vast majority of us who are able to access the diagnosis recognise that. Self-identification is accepted within the autistic community because of the extreme difficulties in seeking a diagnosis.

The Senator mentioned co-diagnoses. There is a growing body of evidence, just in the last five years, of the prevalence of conditions such Ehlers-Danlos syndrome and hypermobility syndromes in the autistic community. Currently, there is no EDS specialist in Ireland, so that is a difficulty with receiving diagnosis. Similar problems occur with ADHD. There are no public pathways or very limited public pathways and then medical gatekeeping regarding medication. In terms of anxiety and mental health differences, there seems to be a perception that being autistic inherently means one has anxiety, and that is that. This happens in children's services as well. If the child receives a diagnosis of autism, the child will then struggle to access support for the anxiety because there appears to be an understanding that anxiety is an inherent part of autism. It is not. That is not what autism is but, yes, there is a predominance of mental health conditions, as Mr. Harris noted, especially anxiety, among autistic people.

Again, that ties in to being part of a world that is not set up for us in any way.

There seems to be no understanding in maternity services that autistic people can be parents. We are presenting today as part of a group. There are so many autistic parents who are not recognised at all in any service. There seems to be a belief that autistic people are incapable of being parents, which is obviously not true. There is no recognition, but that goes across the health service. I do not think it has been published, but Dr. Mary Doherty gave a talk to the Psychological Society of Ireland on her research into autistic people's difficulties accessing healthcare. I know Mr. Harris was asked this specific question so I will not go into too much detail but there are many barriers to autistic people accessing healthcare. A major one is how the vast majority of GP services do not offer online booking. Many autistic people, myself among them, really struggle with making phone calls. We have problems around executive functioning, so if someone who is trying unsuccessfully to get through to a GP over and over, it is very difficult to keep doing it.

We were asked about suggestions on inappropriate interventions. Our submission referred to the use of restraint and seclusion and included a guide from a group called the Alliance Against Seclusion and Restraint. It lists multiple methods and interventions that can be employed. We contend there should never be a situation where someone is put in an environment or put under pressure where it is necessary to escalate it to seclusion or restraint. The argument you will hear is that it is for their safety and so on, but autism is not about meltdowns and overwhelm. That is what happens to us but it is not inherently what autism is. That is a person in distress. It behoves services providers and the rest of us to look at the environment and to change the environment, not the individual.

I will forward information on from the Therapist Neurodiversity Collective to the committee. It offers many alternatives to the use of behaviours intervention and non-rights-based, non-person-centred care. An example from Ireland of people who are doing good post-diagnostic support, again privately, is Thriving Autistic. It offers counsellors and therapists, the vast majority of whom are neurodivergent. It was founded by someone who is neurodivergent themselves. That is an example of getting it right. I was very fortunate to be able to link in to a diagnostician who offered that as a follow-on service. Once I got my diagnosis, I was in a position to link in with that group about something I wanted to deal with. I spoke to it about employment because I did not need support around getting the diagnosis; I already knew, to be honest. That is an example of how to do it right and how to offer support in a way that is helpful, person-centred and neurodivergency affirmative.

Personal assistants are not available to people with an autism diagnosis at all unless they have a co-occurring diagnosis. That needs to be changed to a needs-based not diagnosis-based provision.