‘I always just felt different’ – autism advocate Emily
Emily McPhillips-Sheridan, a 21-year-old student from Cavan, who recently appeared on Virgin Media’s ‘The Assembly Ireland’, has been volunteering with CAPS for the past two years.
An autism advocate spoke in front of the Oireachtas Education Committee last month, Emily was diagnosed with autism shortly before her 17th birthday.
In May of last year, one week after her 21st birthday, Emily’s cousin, Dylan McCahey from Monaghan, tragically drowned in Portugal, age 25.
“He was always encouraging me with the autism advocacy,” Emily says fondly.
A second year social care student in DKIT, Emily chose her course because she has “always liked helping people”, having grown up witnessing the care given to her elderly grandparents and to other family members with disabilities.
Before she started her studies in Dundalk, Emily had already completed a PLC course at Monaghan Institute.
As part of the course, Emily completed two placements, both at the Cavan Autism Centre. There she met Trina, who asked her to become a volunteer after seeing her passion for the autistic voice and for making a difference.
Emily has recently become the youngest board member of CAPS, and been named the charity’s Deputy Child Protection Liaison Officer.
“I don’t feel that stops me in any way,” Emily says of her age, describing the “honour” of representing her local autism charity.
“Within CAPS, every person is exactly as they are,” says Emily.
“Parents often have to fight for services,” she adds, reflecting on her own experience.
Growing up, Emily’s parents knew she was “different”. Attending assessments they would often be told her difficulties were down to her age and being an only child.
After starting primary school in 2008, Emily though began to “really struggle”, and was kept back in junior infants for not developing and engaging with her peers, something that would now be considered a “major sign”.
Struggles
Before her struggles became “really apparent”, Emily was already facing a number of developmental concerns. She was delayed crawling, walking and eating independently. She struggled going to primary school and making friends, as well as reacting to change and regulating emotionally.
When Emily started secondary those challenges bubbled to the surface even moreso and her mental health began to deteriorate.
“I just always felt different,” she tells the Celt.
After receiving a diagnosis of anxiety age 12, Emily feels she “should have” been given a full autism assessment but, after receiving a preliminary assessment, was told she was masking too much for a full autism diagnosis.
Often used by people who are neurodivergent, masking involves hiding traits such as stimming - a repetitive behaviour and coping mechanism that creates comfort.
Emily describes her experience of secondary school like being “thrown into the deep end”. She began having panic attacks, and became exhausted from masking on a almost daily basis.
“I was able to, I suppose, mask in primary school if I was struggling emotionally because I had cousins in the class,” she reflects, noting that she didn’t know what masking was before her diagnosis.
In secondary school, she didn’t have the same “safe haven” without members of her family close by.
At this stage, a psychologist suggested to Emily’s parents that they go down the autism assessment route once again.
Referred to Child and Adolescent Mental Health Services (CAMHS), after some COVID-19 related delays, Emily finally got her assessment in November 2020 and was diagnosed just before Christmas of that same year.
“I was so relieved because I was always told, ‘you’re wrong’ or ‘you’re not doing this right’,” she reflects.
“People say you don’t want a label but I was getting labelled before I even got the proper label,” explains Emily of her diagnosis.
Growing up, Emily feels her parents were not believed because she didn’t “fit the stereotype of autism” as she could talk, walk, read, write and communicate.
“I masked for years and years and probably still do,” says Emily.
She feels that the pressure facing young girls of trying to be perfect also increases the likelihood of masking.
“That stereotype in itself of the female experience contributes to the masking,” says Emily.
“You’re trying so hard to fit in. In secondary school, every teenage child is trying to fit in anyway,” she adds, noting that as an autistic person, you’re “analysing everyone”.
Emily advises any young people considering going for an autism assessment to “trust your gut” and “believe yourself”.
Seen and heard
“There really is such an array of like-minded people after your assessment and diagnosis,” she affirms.
“That has really helped me in the past four or five years.”
“CAPS is there,” she adds, sharing her admiration for the local charity founded in 2011 by the late Bernie Nelson.
“As an autistic person myself, volunteering with CAPS really warms my heart because I get to be around people who are also like me.”
The funding difficulties faced by CAPS providing essential support services to families of children with additional needs mirror that of autistic people not being heard when seeking a diagnosis, feels Emily.
“You generally feel like you’re battling against the system and then people within society don’t always understand,” she explains.
The autism advocate asks that people listen to autistic people and “try your best” to understand the autistic experience.
“There can be a lot learned from us,” says Emily.
“We’re different, we’re not less,” she adds.
“Autism is not something to be scared of.”
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