young woman standing on a train

On 26 March, we launched year three of our Too Much Information campaign with a powerful film starring Saskia Lupin, a 21 year old autistic actor. We sat down with Saskia and asked her about her personal experiences of the anxiety that unexpected changes can cause – the aspect of autism we’re trying to tell the public about in the film.

How do unexpected changes make you feel?

"Unexpected changes make me feel anxious, they make me panic, they make me angry but overall I feel confused, like I can’t do anything. When an unexpected change happens, it begins with an internal struggle but then it transforms into something physical. I start pacing, fidgeting and I have an overwhelming feeling like I need to channel the emotion into someone or something."

Can you give an example of when this has been particularly difficult due to a public reaction?

"I was recently going on a camping trip with some friends to Cornwall. We had planned our journey, which involved travelling on some coaches and some trains and we’d booked to arrive at the campsite at a specific time in order to pitch our tent. Half way through the journey, I started to realise that we weren’t going to arrive at the specific time. I started to get really anxious and angry and even though I could tell people were staring, I was unable to calm myself down.

"The idea that things wouldn’t run to the same time we had planned, made me feel like everything was going to go wrong. Eventually, my close friend, who has a really calm voice was able to help. She knows how much I like to use my imagination to channel my anxiety so she turned everything into a fictional adventure, which really comforted me.

"I also had a similar situation on the underground recently. I was at London Victoria station and it was early in the morning so it was really busy. I was stuck in a crowd of people trying to get on the tube, I started to panic and hyperventilate. Everyone was so set on getting to their destination that I ended up having to lean up against a wall, trying so hard to breathe, until the crowds dispersed. It would have been really helpful at that point if someone could have spotted I was distraught and helped me find somewhere quiet."

When has the public done something to help?

"There have been times when members of the public have really helped and it’s given me reassurance to keep going. I have recently been served in the ticket office at my local station by a really kind man. When he saw how anxious I was about my upcoming journey, he took the time to write out a detailed plan of my route and run me through what I would need to do when I changed trains and alternative routes if something went wrong. I can’t explain how much that meant to me.

Does the anxiety around social change make you feel isolated?

"There have been days and weeks at a time where I haven’t wanted to go out because of the fear of what could go wrong. My parents are really helpful when it comes to encouraging me to push myself but even when I am out, you can still feel just as isolated because you feel different.

"It can be really easy to stay at home and in your comfort zone which can lead to isolation and I have had times where I feel like a waste of space because I feel like I can’t leave and do anything. But then, I also have times where I push myself to go out and I’m surrounded by a group of people and I feel more alone than ever because I feel different and it takes up a lot of energy trying to keep up with social cues.

"I’ll be trying so hard not to upset anyone, or not to get in a state in front of people and embarrass myself that sometimes that can be even harder! At one point in during my childhood, I moved to the countryside with my family, I remember feeling relieved that I was away from everything because I knew I wasn’t hurting anybody."

What do you wish the public knew more about autism?

"The main thing I wish the public took into account is that autism is a hidden condition. I hate it when people tell me ‘I don’t look autistic’. If the public had more of an understanding of autism, I think it would be much easier for them not to stare when they see someone acting in a way that isn’t familiar to them. That’s why I loved being part of this film and the TMI campaign: what it’s doing is so important.

"And finally, whilst every autistic person is different, for me, a simple ‘are you ok?’ goes a long way."

Thank you for being part of our Too Much Information campaign, Saskia - you’re amazing! 

Watch the film