Ireland needed health systems to reflect the diversity of our society, Mr. Adam Harris CEO of AsIAm, told the Conference.
“Where the autistic community is concerned, we need to change attitudes and environments. If the world is designed by people who are not autistic, it is easy to see the barriers in everyday life for autistic people. They experience the world in a very different way and that is a very substantial proportion of our community experiencing the world through a very different lens,” he said in a powerful speech on the need for inclusion and the importance of designing systems that served everyone, with particular attention to neurodiversity.
We don’t talk about autism as a deficit. People who get an autism spectrum diagnosis have a mixed profile of abilities and differences. You can meet somebody who is an excellent communicator. Others may require varying levels of support.
Mr. Harris said people needed to access really good information around autism. “One of the challenges is when we talk about definition. It is difficult to find a shared definition which we all understand, People with autism communicate, think and experience the environment in a different way to people who are not autistic.
“We are trying to talk about accessible systems. Autism is an accessibility issue. People with autism don’t say ‘I have autism,’ they say., ‘I can’t access this or that organisation.’
“The huge challenge with the diversity of our community is that you need not only to get to know autism in totality, but the person in particular.
“The strengths of autistic individuals are that they are highly focussed, have expert knowledge, are reliable, honest, detail orientated, loyal and have a strong memory.
“Neurodivergence is an umbrella for people with autism, dyslexia, ADHD, and Tourette’s Syndrome and some people, have more than one of these.
“There are many reasons why autistic people may need access to healthcare, yet there are huge barriers to this in our community. People working in healthcare do not have training in autism, there are lack of autistic supports to help navigate the healthcare system, some people in the autistic community have problems with the telephone, so it is difficult for them to make appointments, using a telephone. There are huge challenges in all this.
“Many have a very restricted diet, and many have poor physical health.
“People with autism have to adapt ever day and small changes make a difference.
“We are seeing growing complexity in the field of autism. More people are being diagnosed with autism and it is challenging for the public service to respond to the needs of our community.
“We are developing a training programme so that everyone working in the HSE can access healthcare training, as everyone in the NHS can. We need to ensure that all medical people and academics have a baseline understanding of autism.”
He said the Autism Innovation Strategy published in August looked very specially at healthcare accessibility.
Mr. Harris said there continued to be an ambiguity in responding to autism. AsIAm, which was founded in 2014,was an autistic led Section 39 organisation.
He said there was no evidence of over diagnosis of autism in Ireland . “The National Council for Special Education has recently reported a prevalence rate of 1 in 20 in children of school going age or 5% of the population We can presume that 1 in 20 adults are also autistic and many adults are not diagnosed.”
Mr. Harris said for people with autism, visual support was very important to reduce anxiety. Predictability and visual support were important to reduce anxiety.
“Autistic people like to know what is expected of them, so write down the rules. Use visual aids if possible and give to them in advance.
“We need to normalise sensory supports. Autistic people don’t want to be patronised. They want to be accommodated.”
“AsIAm provides evidence-based advice, resources, and guidance that the autism community in Ireland can trust. Alongside this, we endeavour to make Irish society a more inclusive and accepting place, where Autistic people have the same chance. We are dedicated to transforming society, working for Autistic people and their families. Our work focuses on representing, connecting, coordinating and unifying the Autism community in Ireland. We empower and support Autistic people to reach their full potential, while simultaneously challenging society to be fully accepting and accessible to every Autistic person.
