1 week Ago
“The minute you label somebody, they can unconsciously take on the features of that label. It doesn’t matter how you present it to them. They will learn in the world what being autistic means.
” Those are the words of Dr Suzanne O’Sullivan, a consultant neurologist, who recently published a book entitled The Age of Diagnosis . It has attracted significant attention recently. The problem with her statement is it is back to front.
Those of us who are autistic don’t find out what it means at the moment of diagnosis, but from the moment of birth. We learn that we will face barriers that others don’t even see. Every rite of passage – from making a friend to finding a school to securing a job and everything in between – is a fight.
A fight for access. For understanding. For support.
A fight to simply be accepted for who you are. Last week, autism charity AsIAm published the “Same Chance Report 2025” in which it was found that 79pc of our community felt being autistic meant they were more likely to be punished in school. Further, 24pc of parents said they would have concerns if their non-autistic child attended class with an autistic student.
Read more It is a painful reality that masking our differences, another concept Dr O’Sullivan has been dismissive of, is often the only way to gain acceptance. Yet the more a person must mask, the more significant the impact on their mental health. Autistic people are driven to access a diagnosis because we require support to live in a world not built with us in mind.
In recent years, awareness of autism has grown substantially, with three in five of us now reporting that we know an autistic person. The growth of self-advocacy has led to a tectonic shift in how autism is understood and how the needs of our community are researched and supported. One in 20 children of school-going age now has an autism diagnosis, presenting us with an opportunity to provide the right support and accommodations from a young age and preventing the trauma, mental health crises and high rates of suicide that for too long have been norms within our community.
Dr Suzanne O’Sullivan Yet this World Autism Month, we find ourselves facing a level of misinformation that we have not seen in many years. We see the Trump administration vowing to reduce the prevalence of autism by executive order. We see harmful stereotypes and long-discredited theories being spread at pace on social media.
It has become all too easy to imply that autism is now over- diagnosed or that those of us who are diagnosed autistic accrue some form of advantage. With over one in four autistic children reporting that their school place is inappropriate, over half saying that their autism diagnosis has led to barriers accessing much-needed mental healthcare and 40pc of our community experiencing discrimination, all within the last 12 months, this simply does not check out. Dr O’Sullivan, like me, is not a specialist in the field of autism, and yet, concerningly, her title will attach great weight to her arguments.
Using language such as “medical disorder” or “neurodevelopmental problem” is deeply stigmatising, just as it is to suggest that autistic people require “treatment”. When you live in a society that fails to accommodate our different ways of communicating, thinking and processing the environment, diagnosis is a vital shield that supports self-understanding and enables us to find our tribe. It is difficult to uphold the argument that diagnosis is not helpful to our community when 99pc strongly support the right to access timely autism assessment.
Such an assessment, from an appropriately trained clinician, can have life-changing impacts for a child who constantly feels like they are growing up in a world not built for them, just as it can for the autistic adult who can access reasonable accommodations in the workplace for the first time. It would appear in some quarters that there is a desire for autistic people to conceal our differences and ‘get on with it’ I do agree with one point that Dr O’Sullivan raises. She has spoken about Ireland of the past – an Ireland in which autism was greatly under-diagnosed and in which autistic people were unsupported and socially excluded at best, and institutionalised, pathologised and inappropriately medicated at worst.
The voices of our community have led to greater understanding and better diagnosis of autism; they have also created a movement that demands not just awareness of autism but a rights-based approach to our community. Too often our discourse focuses on the demand for autism supports and services and not on why our public services and wider society remain so inaccessible to so many. Indeed, it would appear in some quarters that there is a desire for autistic people to conceal our differences and “get on with it”.
Securing an autism diagnosis often requires lengthy clinical assessment to identify differences and the level and types of support you will require in day-to-day life. Denying a diagnosis to a child who needs it does not mean they won’t need support at school. Refusing an autistic adult access to diagnosis does not increase their chances of securing employment.
It simply means more people going without the supports they need. It means the State facing greater costs and challenges due to long-term consequences of those unmet needs. Worst of all, it will mean we conceal and shame difference once more.
To paraphrase Maya Angelou, we will not and cannot go back to those days. We try to do our best until we know better, and then we do better. Let’s do better.
Adam Harris is founder and CEO of AsIAm.
