Stories from the Spectrum: Helen Ellis

In this Stories from the Spectrum interview, we spoke to Helen Ellis.

Meet Helen Ellis, an autistic rugby fan.

Helen is the Disabled Supporters representative for her rugby club, Saracens, and meets every couple of months to help make the match day experience better for all fans. She talks to us about her love of rugby, the barriers that an autistic person who wants to watch sports may face, and gives her tips for attending a match.

When were you diagnosed as autistic?

I started identifying as autistic at 15 after a conversation with my mother, who was an outreach support teacher. I wasn’t actually diagnosed until I was 21. In fact, the ten year anniversary of my autism diagnosis was in February, which I find poetic as it’s the tenth anniversary of the Autism Act later this year!

What is being autistic like for you?

Communication can be hard at times. Things can become overwhelming and disorientating if I can’t understand what’s going on. When I’m anxious or upset, I can lose my words and become non-verbal, or find I’m making people angry because I’ve misunderstood a comment someone has made.

Sensory overloads are definitely the most difficult part for me. Trying to make people understand why I am in pain from something they are doing is really tough, especially when they are doing “normal” things, like whistling or using hand cream.

When and how did you get into rugby?

Saracens are my home team in Hertfordshire and I vaguely recall meeting some of the players when they visited my school, as my form teacher knew them. As I grew older, live sport became a lot harder for me to access. Even watching on television was difficult, as I struggled with the anxiety of not knowing how the match would end.

Attending a match seemed out of the question for years. I tried a couple of times with matches at Twickenham and Wembley when I was in my early 20s, with family and close friends, but I found the environment really difficult and the after effects of sensory overload often lasted long into the following day. After the Six Nations in 2016, I wanted to try again, as I was older and a bit wiser about managing my sensory triggers.

What barriers might an autistic person who wants to watch sport face?

Any form of live sport brings a level of anxiety, as you don’t know at the start of the match whether your team will win, if there will be any injuries, any yellow or red cards or any scuffles or fights between players! There is also the unpredictable nature of the crowd. Are you sat near people who will be gracious victors or losers, people who are in an out of their seats the whole match, people who are loud and boorish, or a family full of bored kids? On top of all those considerations, there is also the sensory aspect, like being crammed tightly into slightly-too-small seats, the smell of burgers, beer by the metric tonne, or random tannoy announcements encouraging fans to start singing and chanting. Even the referee’s whistle can be painful. I try to get an end-of-row seat so I can easily escape if it gets too much.

As with everything in autistic life, preparation is key! I have a specific set of things that I wear and take to matches, as they ease my anxiety levels by being familiar and trusted.