Stories from the Spectrum: Ellie Pinnington
In this Stories from the Spectrum interview, we spoke to Ellie and Mel.
During World Autism Awareness Week 2019, we’re interviewing five autistic people about how they experience the five things autistic people said they wanted the public to know about.
Meet Ellie, a 17-year-old autistic woman and singer from Southport. Ellie has complex needs, can sometimes take a long time to compose sentences, and uses echolalia to communicate. Ellie tells us, alongside her mum Mel, about how she experiences anxiety in social situations…
* Ellie’s answers are her exact responses to the questions, as written down by Ellie.
When were you diagnosed as autistic?
Ellie: Two and a half.
Mel: Supporting Ellie post diagnosis was easier as in the interim we faced nothing but recriminations from friends and family, telling me that I was an over-reactive mother even though I had another daughter who is not autistic and reacted differently to things than Ellie at the same age. Even a paediatrician told us we were imagining that Ellie had autistic traits, like blinking at bright lights and stopping speaking. The best response was that we let her watch too much television!
Can you give an example of a time when you experienced anxiety in a social situation?
Ellie: I didn’t want to go to the Southport Pantomime and see Cinderella.
What changes can people and venues make to be more autism-friendly?
Ellie: Being with dad. No people.
Mel: I think this differs for everyone and attitudes can certainly be improved. Ellie can be quite vocal and needs to run around to calm herself so it depends where we are. Going to church can be a no-no as certain members of the congregation can be judgmental, but our local shops are really great. They know Ellie, so if she buys things independently they will wait while she counts her money. Ellie is usually so comfortable in her own skin that she doesn’t really acknowledge other people and their reactions. Unless they are clearly very upset or pleased with her, they simply don’t seem to register.
What do you say if you feel anxious about not understanding or expecting people’s reactions to things?
Ellie: I want to go home.
Mel: When Ellie feels misunderstood she craves the security of familiar things, like her computer or her cat. She will say she wants to go home. If she’s at home, she will say that she wants to drive down the coastal road.
We’ve heard you enjoy musical theatre. What’s your favourite song to perform and why do you like to perform it?
Ellie: Super Trouper – Abba
Mel: Ellie’s singing lessons have helped with structure, responsibility and understanding expression and meaning in words. She can sometimes struggle to compose sentences and uses lots of echolalia. Before Ellie started her singing lessons, we didn’t realise that she has perfect pitch!
Does performing or taking your musical theatre exams ever make you feel anxious? What can people do to make taking exams a more autism-friendly environment?
Ellie: I’m not anxious. I’m 17.
Mel: Ellie’s National Autistic Society accredited school do lots of exam practise throughout the year so that exam conditions are less stressful. When Ellie takes a riding or singing exam we give the examiner as much information as we can about Ellie beforehand to make sure Ellie feels comfortable and can do her best.
What could the public do to create a society that works for autistic people?
