Election 2024: Adult autism — Take steps to make us feel included in society
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Hiya, my name is Mike McGrath-Bryan. I am a features writer and digital journalist for the , among other pursuits; and as an adult, I was diagnosed with autism and ADHD.
As part of the 's election coverage, here is my message to the next Irish government, whoever they may be, on what I feel needs to be done to address the problems facing neurodivergent adults in Ireland.
In 2021, at the age of 33, I was formally diagnosed as autistic, ASD1, to be precise, the diagnosis formerly known as Asperger’s Syndrome. The following year, I was formally diagnosed with severe inattentive ADHD.
As an autistic adult, I’m among the thousands of people who have no access to specialised public care or assistance. Not because we've been callously denied it from the top, or anything, but because it simply does not exist — young autistic people that receive State support, and their families, are left abruptly on their own, as soon as they turn 18.
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It’s been left to a handful of already-oversubscribed non-profit initiatives, like RehabCare’s Aspect programme, as well as the work of neuroaffirmative practices like the Adult Autism Practice and platforms like ThrivingAutistic to fill the void — and despite the presence of access initiatives from these organisations, significant economic barriers remain in place for many, in terms of consultancy and assessment.
As an adult ADHDer, I’m among a substantial number of applicants for the Cork Adult-ADHD Tertiary Care Hub, or CATCH — the HSE's public adult ADHD care programme in Cork — that has 'not met criteria' for acceptance, with the programme directing me instead to ADHD Ireland, a community organisation that’s already dealing with its own influx of new inquiries.
I have, of course, sought details of the exact criteria, but these haven’t been forthcoming, with subsequent complaints to the HSE bearing no fruit, and further questions.
Adult neurodivergent people are battling a lifetime’s worth of unmet needs, due to the challenges we face trying to obtain formal assessments and diagnosis in later life. Even when we do reach these milestones, we’re confronted with numerous roadblocks, like the kind I’ve met in accessing services, either through the HSE or private practice.
Left to our own devices in the resulting vacuum, we’re largely tasked with advocating for ourselves and our peers in our workplaces, communities and wider discourse. We’ve had to seek out like minds, community groups, and sympathetic professionals in establishing a vocabulary to discuss and outline our own personal needs in a range of situations.
Our differences in relation, articulation and fostering connections have no doubt resulted in countless impacts on our lives, from our formative experiences, difficulties and hurts, to wider forms of non-inclusivity, like gossip, ridicule and social exclusion — and its consequences for a range of aspects of personal development.
We’re left to re-process lasting traumas and hurts in a new light, and reformulate our own understandings of both wider society, and our personal places in it — including failures by the system to date in neither being identified to begin with, nor receiving appropriate interventions at different stages of our lives.
Many of us are left wondering about who we are now, and the time and energy spent pursuing professional lives and career trajectories that might now no longer suit us — especially in a country and society where conventional relationships and social standing are still considerations in terms of hiring and promotion.
Seeking reasonable accommodations in the workplace, meanwhile, oftentimes means making cases on our own to human resources, union professionals, line managers and colleagues that may or may not fully understand our differences — and may be unfamiliar with the nature of individuals’ needs in terms of stress, workload and time-management.
Simply put, many of us were charged — some of us for decades — with negotiating a world that wasn't built with us in mind. It shouldn’t be difficult to see, then, how the current state of affairs leaves us at risk of further mental health difficulties and socioeconomic alienation.
It’s a complex matter, with a complex set of personal needs, societal considerations and requirements from institutions, and it’s not easy at the moment to think of a simple or repeatable mantra with which to reach and convince people that aren’t directly affected.
But the solutions should be obvious to anyone paying attention — and this is the core of my own message to the 34th Dáil.
Get the various arms of the State, including the HSE (or whatever succeeds it) up to speed with new developments in the field via consultation with the community; expand and ramp up delivery of specialised care via purpose-built programmes; supply medical practitioners with the necessary knowledge and tools to make referrals and help patients manage in the short-term.
Have the HSE and other State bodies mandate and provide general training, handy resources and identifiable points of action for other institutions and organisations, in order to familiarise them (and their constituent parts) with the lives and experiences of neurodivergent people, as well as possible needs and accommodations that may need to be addressed.
Recognise the role of media, arts and culture in the lives of neurodivergent people, and ensure that public broadcasters and private media ‘of record’ give the matter regular coverage and representation — in our own styles of expression and articulation — investing us as adults with our due agency in the conversation, as well as the ability to address and debunk common misgivings, ignorance, and misinformation.
And where individuals present with specific requirements, there should of course be provision of readily-available assistance, from wider availability of social workers, home help, and community services, to the building and oversight of adaptive housing made available on a social basis through local authorities, AHBs, or any proposed State building agency.
Because it’s not just about adapting to a seemingly sudden change in material needs.
It’s about the important business of fostering societal awareness and genuine acceptance, and making neurodivergent individuals feel part of a world that’s too often felt distant and sometimes even unknowable to us — whether we knew it at the time or not.