This World Autism Month, let’s move from awareness to acceptance
ONE in 27 children of school-going age has an autism diagnosis, writes Adam Harris of the support organisation AsIAm. And while great strides have been made in terms of understanding, there is so much more we can do to help autistic children and their par
APRIL is World Autism Month and this April, I am proud to say that AsIAm is ten years old. I founded the organisation when I was a teenager, based on my own experiences growing up as an autistic person in Ireland. The country we live in today is very different to the one I was born into in the mid-’90s.
Back then, few people had heard of autism because most autistic people were not identified or supported.
Those who did receive a diagnosis were more often than not segregated in society – at school, in the workplace and the broader community. Public discourse on autism, though limited, almost never included the voices of autistic people and it almost always spoke about autistic people as if they were the problem instead of focusing on the major discrimination that they faced every day.
Today, one in 27 children of school-going age has an autism diagnosis. Thankfully, many of the adults who were once failed and overlooked growing up are today seeking out formal identification. The vast majority of autistic people attend mainstream school and we now live in a society in which, I believe, people genuinely do want to celebrate diversity and promote inclusion in every aspect of the community.
When I set up AsIAm, I wanted to put the voices of autistic people – and our families – at the heart of the conversation. I wanted to show that most of the barriers we experience, whether it is making friends or going to school, come from other people’s lack of understanding or as a result of living in a world that simply isn’t designed for autistic people.
Autistic people already do so much to accommodate and compromise themselves to conform to an inaccessible world. Often it is at far too high a cost to our mental health. We need to focus on eradicating barriers – not autistic people.
Over the past decade we at AsIAm have achieved much. We are now a national autistic-led movement that provides a broad range of supports to autistic people across Ireland.
We partner with businesses, organisations and communities across Ireland to remove barriers so that autistic people have the same chance. Yet we started from a very low base.
The fact that we live in a more open society is something we can and should all be proud of. Indeed, we are much more aware of autism as a society, than 30 years ago.
Yet as the old adage goes, ‘a little knowledge is a dangerous thing’. Our recent Same Chance Report included the latest Attitudes to Autism poll.
The message that comes through clearly is that as the barriers autistic people face are invisible – nobody ‘looks autistic’ – the awareness of the public doesn’t always align with understanding.
Parents within our community frequently report a sense of being judged when the world is just too overwhelming for their child, who may experience a meltdown. Indeed, the majority of the public – 64% – believe parents just need to be stricter if a child becomes frustrated or overwhelmed in public.
Many autistic people stim involuntarily in order to stay regulated throughout the day, and yet nearly half – 48% – would feel uncomfortable if they saw an adult pacing back and forth or rocking in a public place (something this author does daily to regulate).
Many day-to-day experiences are closed off to autistic people and families due to inaccessible sensory environments and unreasonable social expectations. More than half of the Irish public – 57% – believe that if you can’t sit still and stay quiet, then you shouldn’t attend the cinema or theatre.
Going to new places or trying new things can be extremely stressful and anxiety-inducing for our community.
Preparation is key, but the fact is if someone requires a detailed plan before accepting a social invitation, making this accommodation irritates 55% of people. I have no doubt that most people will make accommodations when they understand, and the impact small changes can have for autistic people cannot be underestimated. It is not just in the mundanity of day-today life but in terms of selfesteem, wellbeing and mental health. It’s also clear that the sort of changes we are talking about might be essential for autistic people but can be good for everyone. Indeed, the Irish public agree that clear communication, knowing what to expect and having an inclusive society is good for everyone.
Yet an overwhelming stigma persists. When people share their diagnosis with others, all too often they are met with wellintentioned but devastating statements such as ‘ah, but you don’t look it’, ‘it must be very mild’ or ‘sure there is nothing wrong with you’. Invalidating the day-to-day experiences that most people take for granted can be no less than exhausting for our community.
This World Autism Month, let’s take a step forward towards the Ireland of 2034, starting with moving beyond awareness towards true acceptance.
This means not just hearing autistic voices but taking the time to really listen to them. And it means accepting people ‘as they are’ every day.