A lot supports for autistic people are focused on children, says Bandon woman Evaleen Whelton, who has decided to organise Ireland’s first all-autistic conference
WE have our own language, and our own culture and we need to be listened to and not changed.
That’s the message from Evaleen Whelton from Bandon who, on February 24th, will host the country’s first all-autistic conference in Cork.
The 42-year-old was diagnosed with the condition five years ago when her daughter Maddy was aged one and she describes it as a ‘light bulb moment.’
Growing up she said she always just ‘felt a little different,’ and her official diagnosis came as a huge relief.
Her motivation to organise the conference is for others like her to be understood – not fixed – and to change people’s perception of autism.
‘There are enough of us here, we’ve got a lot to say and we need to be listened to. We’re excluded from a lot of research and reports so it’s time to open the conversation and move away from this “pretend inclusion” which is basically depriving us of our human rights,’ said drama teacher Evaleen.
‘The narrative around autism is largely controlled by national charities and professionals.
‘Autistic people themselves are excluded from the conversations and decision making process on a local and national level. I’m organising AUsome Conference to give us a much needed platform to be heard. To start a much needed conversation,’ she explained.
A lot of the autism conversation she feels centres on children – and not adults.
‘And there’s this myth that boys are more prone to the condition which isn’t true. Up until now it was a diagnosis ratio of 4:1 in favour of boys. Females are often either misdiagnosed as having OCD or being bipolar, or are undiagnosed entirely. But it’s not about labelling ourselves, just finding out who we are,’ she says.
Recalling her struggles growing up she remembers that in primary school that ‘horrible feeling of being the last one to be picked for sports and being left out all the time and drifting in and out of friendships.’
‘Secondary school was all about trying to fit in; it all became a bit much and my focus was on that and not academic work,’ she said.
After school she studied arts in UCC but later dropped out, and returned to study commerce at the age of 23.
During this time and until her diagnosis she learned tricks to disguise her condition – a behaviour commonly known as masking.
‘I basically played a role every day which isn’t good for you and that’s something I probably only stopped doing last summer.’
Evaleen said her natural behaviour would be to communicate directly, but instead she’d have just gone along and agreed with whatever was said to her in an effort to avoid possible ridicule.
She also has sensory issues which she now deals with by having dimmed lights in her home and her TV volume at a certain level.
‘My home suits me. For example I don’t like interruptions and couldn’t have a radio on in the background while I worked.’
Again, that’s the point she wants the conference to get across: that changes need to be made to prevent autistic people being excluded.
‘It’s about making small changes in schools, in colleges and in the workplace. It’s about realising how we couldn’t work in open plan offices as we couldn’t filter out sounds. It’s about communication issues and avoiding slang and jokes as we take in information very differently and it’s about removing barriers at interview level where we’d find something like making eye contact very uncomfortable.’
She said innovations such as Clonakilty being accredited as the country’s first Autism Friendly Town as wonderful in building awareness.
‘This should be everywhere,’ she said.
She also praised businesses who have autism friendly shopping hours but said: ‘What about every other hour in the week? That’s like putting a ramp up for a wheelchair user for one hour and then deciding that’s enough.’
Evaleen is encouraging everyone from parents, therapists, teachers, SNAs and of course autistic people themselves to come along to the conference.
‘We’re expecting a crowd of over 300 people including autistic adults from the UK and even the US – this is a huge thing, autistic people doing things for themselves.’
Speakers include Adam Harris of AsIAm (brother of health minister Simon) and the conference, in the Rochestown Park Hotel from 9am to 5pm, will also feature an art exhibition by nine autistic artists.