THIS MONTH OF April is traditionally known as Autism “Awareness” or ‘Acceptance’ month.
But ‘acceptance’ is a word that no longer seems appropriate. It is an archaic view of our neurodivergent community, that they must seek acceptance from neurotypical people. Instead, society needs to ask itself: Do we truly understand and learn about neurodiversity? Are we inclusive?
Neurodiversity Ireland was founded by a group of neurodivergent parents of neurodivergent children, who wanted to challenge how Irish society views neurodivergence. We launched a national campaign called “Let Me Be Me” back in 2022, grounded in the belief that people should be allowed, and encouraged, to be their true, authentic selves.
When you say ‘autism’, most people still don’t really understand what it means, or have an understanding of the autistic experience. Neurodiversity Ireland wants to explain to people in the simplest of ways. Neurodiversity describes the differences in the way people’s brains work.
There’s no ‘correct’ way for the brain to work and instead, there is a wide range of ways that people perceive, interact with and respond to the world around them. These differences are to be embraced and encouraged, they are not deficits!
Neurodivergent children’s minds work differently than their neurotypical peers. They are often viewed by others as acting differently, but we want to question the emphasis that is placed on being ‘normal’ there is no “normal.” We need to stop judging people by this standard of ‘typicality.’ There’s a lot of stigma attached to a diagnosis — it is still considered to be something negative – even the word ‘diagnosis’ itself implies a problem or something that needs to be ‘fixed.’ We want society to understand that these children are not broken and they do not need to change. In fact, they should be celebrated for who they are.
Ireland has changed so much in the last 10 to 20 years. There is a greater understanding that diversity comes in many forms, in terms of race, ethnicity, nationality, religion and gender. People are generally much more open minded about sexuality, family types and marital status – Ireland is opening up. However, neurodivergent people still experience stigma every single day; because we still don’t fully understand, therefore we are not yet fully inclusive. In 2024, why should neurodivergent people have to ask others to accept them as they are?
Too often, we hear of the lived experience of neurodivergent children who are excluded from preschool right through to primary and beyond. Parents are told not to bother seeking places in their local schools, as many schools feel that they don’t have the support systems in place to fully accommodate the needs of neurodivergent children. This of course has a knock-on-effect. No access to a local school means little or no access to school activities, extra-curriculars, playgroups, meetups; all the things a child should take for granted.
Whilst we celebrate the strengths that come with neurodivergence such as creativity, humour and alternative perspectives, Neurodiversity Ireland also believes that there is a lack of societal understanding of the challenges that may be faced by children who are autistic, ADHD, OCD, have Tourettes, Tics or are otherwise neurodivergent.
These may include differences with communication, or emotional regulation, or with processing sensory information for example, and that coupled with a feeling that they are “doing things the wrong way” brings mental health struggles for very many neurodivergent children. We would like to shine a light on the challenges experienced by the neurodivergent population. We want to show everyone that they can be part of a system and a community that can appropriately support neurodivergent people to ensure they can fully participate in society.
There has always been a stigma attached to a child who doesn’t act, sound, speak, walk or ‘operate’ like any other kid. An autistic child’s preferred way of playing may look slightly different to what people think is ‘normal.’ They may not talk directly with you, or make eye contact with you, they may not make the same sounds as you, and they may find and express joy in different ways. Everyone is different. There is so much beauty in that, why try to fix it? It’s so important that we move away from the tradition of ‘fitting in,’ from striving to be that kid in a uniform who performs really well and who doesn’t stand out of line.
I am happy to stand out of line on behalf of these children and their families. As an organisation, Neurodiversity Ireland is trying to step up and create the types of community-based support that neurodivergent children need. Since we were established in March 2022, we have provided information and educational materials to schools to start the conversation with the youngest children about what it means to be ‘different.’ We have created videos and animations that have been a catalyst for a national storytelling competition; through any media such as art or writing, signalling that there are many modes of expression and types of communication.
We work to empower parents with the confidence to support their children, by arming them with knowledge and connecting them with experts. They really need real-life, practical information now, because the waiting lists are huge. We want to ensure that parents have the confidence to promote connection with their neurodivergent children, that will foster the basis for their fulsome participation in life, by in turn, encouraging those connections within their communities.
One of the main supports we have created is our sensory centre in South Dublin. Here, almost 90 children per week have access to a fully supported social outlet with their peers including OT-led interactive play groups. These kids are establishing connections with other children and with the group leaders. They are part of a community and have a space designed for their needs, where they belong.
Unfortunately, we do not yet have a permanent space for our support services, but we are fundraising and seeking support from the public to help us create a permanent home for children and families and embed them in the local community. We know we could make these wrap-around supports a reality in the morning, for so many more children, if we just had the resources and the space.
We see our centre as a pilot that could and should be rolled out across the country. We believe the HSE model doesn’t work and we know what we need to do to support children, so that they can participate in life like any other child. So, ask yourself, are you truly inclusive, are you willing to learn, to understand neurdiversity?
Nessa Hill is the Director of Neurodiversity Ireland (NI).
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