Dr. Mary Doherty:

I thank the Cathaoirleach and the committee for inviting me to this meeting of the Joint Committee on Autism as a representative of Autistic Doctors International. I founded the organisation in 2019 with seven members. Today we number over 700 autistic doctors worldwide. The three most common specialties are general practice, psychiatry and anaesthesia.

Autistic doctors are a hidden minority in the medical workforce but we provide an autistic voice within healthcare, advocating for both our own members and autistic people more widely. We have worked closely with the royal colleges in the United Kingdom, particularly the Royal College of Psychiatrists, and also the British Medical Association and similar organisations, to improve recognition and acceptance of autism within healthcare settings and society more widely.

We give presentations and training workshops to a variety of medical and non-medical audiences on autism from a neurodiversity-affirmative perspective, and we are increasingly involved in the education and training of medical students, specialty trainees and doctors at all levels. We have delivered workshops at various events, including the International Conference on Physician Health. Later this month, I will deliver training to psychiatrists as part of the Royal College of Psychiatrists' national autism training programme, at both foundation and enhanced levels. Upcoming workshops for Health Education England will address the training needs of educational supervisors and autistic junior doctors.

We undertake research with the aim of improving the lives of autistic people. We have active collaborations with multiple academic institutions, including University College Dublin here in Ireland, as well as several universities in the United Kingdom and the United States. While this often centres around the needs and experiences of autistic doctors and medical students, we are also passionate about the healthcare needs of the wider autistic population. Our current projects include exploring barriers to accessing healthcare for autistic adults, several clinically-based projects and we have just developed a novel framework for meeting the needs of autistic people in healthcare, entitled Autistic SPACE, which is currently in press with the British Journal of Hospital Medicineand will be available shortly.

In the autistic community, autistic space refers to places and events where autistic needs are prioritised. We use the acronym SPACE to represent the shared needs of all autistic people in healthcare settings, although we anticipate this will be applicable more generally. SPACE stands for sensory needs, predictability, acceptance, communication and empathy.

My journey into the world of autism started with my son’s diagnosis, followed soon after by my own in 2013.

My involvement with autism advocacy began with AsIAm and the autism-friendly town project in Clonakilty. Tasked with delivering autism training for local healthcare practitioners, and wanting to base that training on the lived experience of autistic people, I began researching our healthcare experiences and outcomes. I was horrified at what I discovered. There is robust international evidence showing that life expectancy is reduced for autistic people, with a large population-based study from Sweden showing a mortality gap of over 30 years for autistic people with co-occurring intellectual disability and 16 years for those without. Leading causes of death were heart disease, suicide, cancer and epilepsy. Suicide rates overall are seven times the general population rate and up to 13 times for autistic women without intellectual disability. While this is shocking, even more surprising is the fact that mortality from cancer is doubled. For respiratory or endocrine disease, mortality is tripled. Autistic people are three times more likely to use emergency departments, three times more likely to be admitted to hospital and, most worryingly, twice as likely to die as inpatients following an emergency department presentation. We must ask why this is.

Our research on barriers to healthcare for autistic people found that 80% of autistic people reported difficulty visiting a general practitioner. The most frequent barrier was difficulty using the phone to make an appointment. Over half reported avoiding or delaying a needed GP appointment because they did not feel understood by medical practitioners. The research also showed an association between access barriers and self-reported adverse outcomes. Many autistic respondents reported untreated mental and physical health conditions, late presentations, the need for more extensive treatment or surgery and an inability to attend specialist referrals or screening services. Most worryingly, one third reported an inability to access care for potentially serious or life-threatening conditions. In practice, this translates to autistic people presenting to services with, for example, late-stage cancer, rather than at an earlier point when curative treatment might be possible. It is not difficult to see how this might contribute to excess mortality for autistic people. Therefore, it is imperative that we address the healthcare needs of the autistic population.

Outside of disability services, autistic people in Ireland are largely invisible in primary care and secondary care, in services for older people and in mental health services. Research shows that the prevalence of autism is stable across the lifespan, but where are our elderly autistic people? How many are struggling in residential care that is not adapted to their needs? Research shows that up to one in ten inpatients in mental health settings is likely to be autistic, and one in five attending outpatient mental health clinics. Yet, we are only at the stage of piloting an adult autism assessment pathway in our public health system. Education and training is the primary need. Appropriate education on autism must be embedded into the curriculum at undergraduate and postgraduate levels for all medical professionals as well as allied professions. This must take a neurodiversity-affirmative approach as this has the potential to optimise the outcomes for all autistic people.

Having been involved in autism education, training, and the development of services for several years, primarily in the UK and more recently in the United States, I am confident that we have a unique opportunity in Ireland to become a world leader in the provision of services for autistic people. There is a wealth of specialist knowledge in Ireland, including a growing network of neurodiversity-affirmative practitioners across varied fields such as psychiatry, general practice, psychology, occupational therapy and speech and language therapy, among others. However, for many autistic and otherwise neurodivergent practitioners, the ableist culture in medicine precludes disclosure. Changing this culture to be more inclusive and neurodiversity-affirmative will bring enormous benefits for autistic healthcare providers and autistic people alike.

I thank the committee for the opportunity to meet today. I look forward to further discussion on this vitally important aspect of service provision for the Irish autism community.