Real Mum Story: Living With Autism
What comes to your mind when you think about autism? Maybe a child with behavioural challenges? Developmental delays? Isolation?
Fiona Ferris, a 31-year-old mum to an eight-year-old girl, Katelynn; works full time, drives her own car and lives independently – and she’s autistic. She tells about her life with Autism Spectrum Disorder.
“She doesn’t look like she has autism,” I often hear people say. Clearly they are unaware that I am hypersensitive to sound. I can hear everything going on around me to a much more intense degree than anyone else.
But their reaction is quite common and I am not offended by it. Rather than being offended, I just wish society realised that autism doesn’t actually 'look' like anything. It is neuro-developmental, meaning the brain is wired differently to the neurotypical (non-autistic) person. As a result of this, the autistic individual will see, experience and understand the world around them quite differently.
READ MORE: What Is Autism Spectrum Disorder?
But different doesn’t equal less. Our operating systems just work a bit differently. Putting a Xbox game into a PlayStation won’t work, but that doesn’t mean it’s broken. However, forcing one game into a console that is not built to read it will ultimately damage both.
This is quite similar to the damage that can be done by forcing an autistic individual to fit into a world that’s not designed for them. Difference should not only be accepted, but also celebrated.
I work within a charity named AsIAm. And I’m lucky to work there.
The charity advocates on behalf of the autism community, in an effort to make Ireland a more inclusive place for everyone. While many people feel lucky in their employment in terms of having found a role they are interested in and enjoy, as an autistic person, my idea of luck goes beyond this.
85% of autistic individuals are long term unemployed, or under-employed in jobs that don’t allow them to demonstrate their skills and abilities. In a way, it is actually quite upsetting that I consider myself blessed to be a part of the 'lucky' ones. Only 15% or autistic individuals are employed full time based on their skills. Everyone should have access to suitable employment, and many autistic people have interests and skills in areas that, combined with ability to think 'outside the box,' could be invaluable to businesses.
READ MORE: How To Recognise The Signs Of Autism?
Working has not always been easy for me. While I have a strong work ethic and will apply myself entirely to any task at hand, the social and environmental factors of the workplace can be extremely challenging. Customer facing roles can be quite unpredictable, especially when 'reading' people does not come naturally. Even when I worked in a contact centre, thinking this would be ideal for me as I did not have to engage with people face to face, it still proved to be extremely challenging because I realised I found it even more difficult to process information from people over the phone due to auditory processing differences when I couldn’t see their faces or their lips moving.
I have been autistic my whole life, although not diagnosed until later. For some individuals it is much later. We are seeing an increase in adults who are pursuing a diagnosis, having identified with and related to characteristics associated with the autism spectrum. What this is indicative of is a rapid increase in awareness.
In Ireland, we have quickly become a nation that is very aware of autism. We celebrate autism awareness and promote others to be aware; however what we really should be doing is to promote understanding and acceptance.
READ MORE: Austism Spectrum Disorder: Conall's Story
For the month of April AsIAm created a challenge of '29 Days, 29 Actions’, highlighting some basic steps that everyone can take to be more inclusive and supporting of those with a diagnosis of autism. Autism isn't just for the month of April, and these steps can be put onto place all year round.
Although I have been autistic my whole life, I haven’t always been aware of it myself, nor did I always accept it. I knew I was different. I wasn’t entirely sure who I was growing up, or what I was interested in or good at.
It was not until January 2011 that I accepted autism into my life, when my daughter was diagnosed.
I remember phoning my parents to tell them. “She has autism,” was all I could say before I broke down. My dad too felt helpless. “I don’t know how to help from here,” he said as they live two hours away.
READ MORE: The Best Child Care Choice For A Child With ASD
But no-one knew how to help. I had to start and think 'autistically' to teach her in a way that she would learn. I had to quit my job, as she needed my full attention.
Katelynn did not speak, play or make eye contact. She would get extremely distressed in busy or noisy environments or around other children. But working intensely with her, she developed an amazing, strong and independent little personality. She loved Elmo, so we would practice a lot of play and interactions through Sesame Street characters. This was the door to her world.
When Katelynn got accepted in an Early Intervention preschool, I felt quite redundant. I had finally found something that I was not only interested in, but that I actually felt I was quite good at. It was time to do something for myself.
In 2012 I returned to third level education to study Early Years Education, and graduated with my Honours degree in 2015. I specialised in Autism, conducting my thesis research on visual supports. I gained the confidence to start speaking publicly about being autistic, which opened so many doors for me. I began teaching Special Needs Education at the Portobello Institute while managing an early years setting. I have spoken at conferences and seminars about my own research, and had the best opportunity of all which was to join the team at AsIAm.
READ MORE: First Autism Friendly Sensory Room Opens At Shannon Airport
I am currently working as the Early Years Training Programme Co-ordinator at AsIAm. I have researched and developed an Early Years Autism Training course which, with the support of highly esteemed professionals within Early Childhood Ireland and Mary Immaculate College, I am delivering nationwide to 450 early years educators.
Katelynn is now 8 years old, and in second class of a mainstream primary school. She is fully verbal and has charisma and personality to rival no other. She sees autism as something that is amazing, and makes her different in a good way.
“If we were all the same, the world would be soooo boring!” she always says. She is now advocating for autistic people in her own way, by talking about it through videos.
My life became so much better once I accepted autism into it. I feel that if society fully accepted autism, it would find itself becoming so much better too.
READ MORE: The Exciting New RTEjr Show About Autism Is Here
Do you have an experience with autism you would like to share? Tell us about it in the comments below.
To find out more about AsIAm, go to asiam.ie