Ms Davida Hartman:

Good afternoon. I thank the committee for inviting me to attend today as a representative for The Adult Autism Practice. I am the clinical director of the practice, which I founded in mid-2020.

The core areas of work within The Adult Autism Practice are consultations relating to a possible autistic identity, autism assessments, or as we call them, collaborative identification, training and advocacy. We work within a neurodiversity affirmative paradigm, which means that being autistic is understood not as a disorder, but as a neurotype, which similar to other neurotypes has its own profile of strengths and challenges. It means that autistic ways of being are not pathologised, that autistic culture and identity are respected and celebrated, that we recognise and embody the value in diversity and disabled lives, and that the autistic voice is at the centre of everything we do.

We are a mixed team of more than 60 autistic, otherwise neurodivergent and neurotypical psychologists, support staff and one psychiatrist. Our assessments are collaborative and therapeutic and put the person as the rightful expert in their own experience. We have also designed our processes on universal design principles and, in particular, to suit autistic, neurology and communication preferences.

Several psychologists a month contact us about joining our team which, during a time of significant issues in relation to recruitment and staff retention within the HSE, shows a huge interest in working in new and progressive ways within supportive and kind teams. We provide training in our approach to HSE teams across the country and to all professional psychology training courses nationally. Members of our team, including me, have also written a best-selling adult autism assessment handbook, the first book on the subject ever published.

The practice has worked with roughly 3,500 adults since opening, of whom approximately 2,500 were based in Ireland. Roughly 70% of these were female identifying and they range in age from 18 to 75. The feedback on the approach we take has been overwhelmingly positive. However, it needs to be borne in mind that these are people who can not only afford to pay for a private assessment, although we work hard at keeping costs low, but can also navigate an online application process. The adults we have supported have ranged from doctors, nurses, artists, musicians, writers and university students to those who have struggled to hold down employment in environments that were hostile to their neurology. Most, although not all, of the people have experienced trauma in their lives and have navigated a range of services and many unhelpful misdiagnoses. Many of these people are multiply neurodivergent.

Currently in Ireland there is no pathway to publicly access an adult autism assessment, although a programme is currently being piloted. Being diagnosed late in life has serious and life-threatening implications for this minority group who experience high rates of self-harm, eating disorders, and death by suicide. A core issue as we see it is the potential siloing of adult autism assessments to only core assessment teams. Autistic people are within every service. The line “We don’t deal with autism”, so frequently doled out, is exceptionally unhelpful not only for autistic people who are sent from one waiting list to another, but for the services themselves who could potentially see a reduction in the need for their services if people were correctly identified. We have seen life-changing improvements for people who finally understand their neurology, are linked in with a community of people who understand them and can begin rebuilding their lives with hope around a correct understanding of themselves and, typically, their wider family.

This committee is all too aware of the enormous issue in relation to the backlog of autism assessments for children in this country. It is absolutely vital that we learn from these mistakes or we are going to run into the exact same issues in relation to adults. In that context, we propose that the autistic community needs to be at the centre of all service and policy decisions related to them, with a rights-based approach employed. There is an immediate need for accessible, neurodiversity-affirmative, publicly funded autism assessments. Assessment pathways need to be clear and easily accessible. For people already accessing public services, autistic identification should start in these teams, with all relevant professionals being trained in recognising the autistic experience and supporting people to explore this. Training needs to be provided to all health care and affiliated professionals, with training teams being autistic-led. Autism assessment needs to be a therapeutic, collaborative process, with adults being treated with respect throughout. Services and physical environments need to be universally accessible to all neurotypes. Staff and service managers need to actively and on an ongoing basis combat the rhetoric of deficit around the autistic experience at every level of the service. There needs to be active recruitment of autistic employees across public services. Post-identification support needs to be built in as a core part of assessment services. Finally, there is a need to create working environments where healthcare professionals can feel comfortable disclosing their own neurodivergence.

Ireland is currently world leading in relation to neurodiversity-affirmative knowledge and supports and there is a large network of connected professionals working within this paradigm here. The drafting of a national autism strategy is an important opportunity for this progressive mindset to be brought into Irish public services. I thank the committee for giving me the opportunity to speak today and I look forward to discussing this topic further.