Dr. Mary Doherty:

First I want to talk about education. I could not agree more about changing how we talk about our autism classes, even the word "unit". The way we talk about autism influences how we think about it and that influences how we set up our services. Language is important. Autistic people are just othered within our society. That feeds into it. When we look back and think about other minoritised communities, and how society has changed, homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders, DSM, only 50 years ago. Look at how our attitudes have changed there. That is a really important point to bear in mind around language.

The special class that my son attends is absolutely wonderful. Only for that he would simply not be able to access education. He is very bright but he cannot manage the sensory environment of a mainstream class. It is incredibly important. We have been really lucky, even in primary school. He was really lucky to attend a wonderfully supportive primary school. Despite being refused access to an SNA on several occasions, his school was able to find ways to support him with access to an SNA. Only for that I am quite sure he would be at home out of school. I see the difference in my family in terms of how we approach autism. My son has grown up in a neurodiversity-affirmative paradigm. He is happy, healthy, content and confidently autistic. My older child grew up in that pathology paradigm years ago when we knew nothing else and has really suffered the mental health consequences of that. This is so important.

To get back to healthcare, health literacy within the autistic community needs to be address. We need to address it early with kids. I agree that it is absolutely shocking when we look at the physical health outcomes. We are used to thinking about mental health in association with autism. Why would cancer mortality be doubled? We looked at the process of accessing healthcare as an autistic person and have published our quantitative paper, the statistics from which are in my statement. We are working on the qualitative paper which is currently in review.

It takes the stories behind the numbers. We have used the data we have gathered to make a model of how access barriers impact on healthcare avoidance and adverse health outcomes. This is everything from difficulty using the phone, using public transport and perhaps not having somebody to bring an autistic person to a GP or hospital or to attend the waiting room environment, for example. The waiting room environment in an average GP surgery or hospital emergency department is very difficult. I am currently unwell and I am dealing with a chronic illness so I am very much experiencing the sharp end of healthcare inaccessibility and it is so difficult.

This comes back to understanding autistic people. If a receptionist, for example, or a triage nurse understands both autism and the difficulty an autistic person might have in a waiting room, and says it is fine for the person to wait outside to be called when it is his or her turn, that can make such a difference to autistic people. Perhaps it is about finding a quiet place for the person to wait. It is so very difficult.

There is difficulty accessing healthcare services but also a difficulty interacting with healthcare providers, whether that is communication difficulties or misunderstandings. Then, as I mentioned, there are prior negative experiences. That all leads into learned helplessness, where people feel it is just too difficult to try to access care and then avoid accessing care when needed. That leads, not surprisingly, to adverse health outcomes. Understanding that process very much gives an opportunity for improving the situation but, again, it all goes back to training and understanding.

On how we should address the need for services, I particularly like the Australian system. In the UK, autism was generally dealt with in specialist services. Currently, even in community mental health services, psychiatrists who might recognise that a patient is autistic are not in a position to make that diagnosis and have to refer the person to a specialist team where there may be a waiting list of three or four years. That is unsustainable. There is a move in the UK to address that and the enormous demand there is for diagnostic services. The Australian system is lovely because it is one where there is a multidisciplinary team. One member of the multidisciplinary team, from whatever professional background, can make a diagnosis in straightforward, standard cases. Only in complex presentations might the case then be referred on to a multidisciplinary team. That is a good model.

Many of my GP colleagues in Autistic Doctors International - GPs account for the biggest chunk of our members - feel that it should be a primary care diagnosis. If somebody has looked after a patient for many years and clearly recognises that he or she is autistic, why should there be a need to refer on to a service which has a four-year or, in certain areas of the UK, ten-year waiting list?

We have evidence in our work that the benefit of a GP recognising that a patient is autistic and making reasonable accommodations for that patient is very valuable, even if the patient does not have a formal diagnosis.

In our work we have split our data according to those who have a formal autism diagnosis, which is three quarters of our respondents, and those who do not. We found no difference between the two groups in respect of difficulty attending a GP, the barriers experience or the adverse outcomes. There is, therefore, a very significant proportion of the Irish autistic community which is just not able to access healthcare and is suffering adverse outcomes.