Mr. Adam Harris:

Senator Higgins raised a number of points. I will address a few of her questions without repeating what Ms Kearns said, all of which I agree with. On adult diagnosis, there is a major urgency to resolve this issue. When considering autistic adults who do not have a diagnosis, generally speaking, they are people who the State has failed and often misdiagnosed or, indeed, are people who are members of other minority or disadvantaged groups, including women and the Traveller community. There is a significant burden on the State to recognise that and provide support. What I will say might be beyond the purview of this committee. A challenge faced in adult diagnosis is that the present diagnostic manual we all work from was written by neurotypical people and does not capture the full range of autistic experience. As a result, many autistic adults find it difficult to access the diagnosis they require.

On the point raised about healthcare, there exists a huge dichotomy which most people do not understand. The GP is the gatekeeper for diagnoses. When parents seek a diagnosis for their child, they typically go to their GP first to get a referral. That has led most people to presume that everybody who works in healthcare has advanced knowledge in autism. However, the experience of many autistic people is that most healthcare professionals have a basic understanding of autism. This is serious because it has led to autistic people, who tried to access health services when they were younger, encountering bad and traumatic experiences due to the sensory environment or how people communicated with them. An impact of that is if people are seriously ill later in life, they do not present for the care they need. It is therefore very serious.

It is sad, in this day and age, to learn of the experience of autistic adults who go to their GP to discuss an autism assessment or when they are unwell and they want it known that they are autistic so it can inform their care. The language still used in response to people, such as "it must be very mild" or "you don't look it at all" or "there is not a thing wrong with you", is hugely problematic. There are major barriers, and training can play a part in tackling that. The NHS has been rolling out a programme called the Oliver McGowan training programme in autism. That is something we need here for every healthcare professional. There is also a pathways piece. In the context of mental healthcare, it seems to nearly suit the system that there is no solution to this problem. When services are already at breaking point, the fact that autistic people cannot access them seems to be advantageous for the health system, and that is a problem.

On the cost of disability, in our pre-budget submission, we called for an increase of €20 a week in the disability allowance. We saw this really as a minimum increase when you look at the Covid payment, versus what disabled people, through no fault of their own, are asked to live on. The fact that there was only a €5 increase, considering inflation and so on, was insulting. There are significant additional costs to being autistic coming from things like executive functioning; people losing things or needing multiples of things; people often needing specialist equipment, clothing or furniture; the fact that many people have to pay for private therapies; and the fact that many autistic people have poorer health outcomes. These all lead to additional costs.

On the equality legislation, I am aware of a ruling by the Workplace Relations Commission against Bus Éireann relating to a child whose accessibility requirements were not met. It is a patchwork quilt and there are barriers to using the existing equality legislation. The level of support people need to make complaints is not understood. The advocacy service is not properly resourced, which is a problem. Another problem lies in the knowledge about autism of people, particularly in the Judiciary. A person might be lucky and encounter someone who understands or a person might encounter someone who does not understand at all.

On the issue of the dossier, one of the biggest problems in what has happened since the dossier issue arose has been what I can only describe as a wall of arrogance from the Departments concerned. There was an opportunity to step away from the technicalities and consider that at the end of the day, two Departments were using the Judiciary to actively prevent people from getting their rights. There has been no recognition of this or no apology. The behaviour of senior officials since then has only made matters worse. The big thing we need is a culture change. One way we can do that is to move to a model where there is somebody there as you go through your access to the service. As we heard from families and self-advocates today, as we interact with State services, we need somebody who is on our side and who is not telling us that he or she does not do that or that he or she cannot help us.