Nem Kearns:

I will chime in on some of that and answer from our perspective. I agree that there are no public services for adults. As we have discussed, there are no diagnostic services and if you are diagnosed, there is nothing after that. There are cross-disability things that a formal diagnoses can help you access but there are no guarantees. These could be accommodations in the workplace, in third level education or possibly when applying for disability allowance or something like that. However, there are no autistic supports beyond residential and disempowering, that is, institutional care, and institutional residential support. There is nothing to support autistic people in their communities and help them to live their best lives. Neuro Pride Ireland is a national organisation but we are entirely unfunded and run by disabled volunteers who are all multiply neurodivergent. The majority of us are also disabled in other ways. While we have built a large community, it is the community which is providing support to the community. We host community spaces across a number of social media platforms where members can speak on an ongoing basis and form subcommunities or groups for neurodivergent professionals, for neurodivergence at third level education, and LGBTQ+ neurodivergent people, but those are the autistic and otherwise neurodivergent people supporting each other because there is nobody else to do so. Thriving Autistic posts diagnostic supports and counselling and their peer groups are a massive boon to the community. I really cannot emphasise enough how potentially life-saving it is. Our community members talk to us and to one another about the things that helped them and that is one thing that has come up a lot.

As far as I am aware, the Adult Autism Practice's prices are on the lower end. They are possibly the lowest I have heard of when it comes to private diagnosis for adults. The minimum cost per assessment is €850.

I want to highlight that, as has been mentioned before, most autistic people are neurodivergent in some other way. It is impossible to get an adult diagnosis and assessment for more than one neurodivergency. People have to find separate private providers. There is beginning to be some public provision and referral for ADHD diagnosis, which is great because ADHD is not taken seriously enough in my opinion and from my experience with supporting neurodivergent adults. It leads to lower life expectancy, higher rates of addiction, huge mental health problems and suicide if left unsupported. The majority of ADHD adults are unsupported and the majority of autistic people also have ADHD. I want to emphasise that. It is great to see that there is some public provision but if people are trying to get support, we are not just talking about them having to pay for one assessment; they then have to go and pay the same for another assessment for another neurodivergency. A significant barrier is that because of the issues with child diagnosis and the assessment of needs, many autistic parents are prioritising paying for their children and are unable to access a diagnosis for themselves. If they are able to save the money, they are putting it towards their children and trying to get them the support they need because they are parents, and also because it is so urgent that children get the support that they need as soon as possible. Those are other factors to keep in mind.

I want to touch briefly on Senator Black's question regarding disaggregated data. We believe it is absolutely crucial, along the lines recommended by the CRPD committee. We know there is inequality across the system and there are gaps in knowledge, skill and provision, but we will not be able to fix and address those and make the system more equal until we can measure what we are not seeing and where the work needs to be done. The collection of robust and disaggregated data is very much part of that.