How does autism affect you?

To find out how this very heterogenous condition affects one person, I spoke with 27 year old Robyn Steward.

Robyn -   My autism affects me in a wide range of ways.  When I was younger, I had a lot of difficulties reading body language and reading people's intentions, and understanding other people's perspectives of particular situations.  That skill is called theory of mind and I had to work very hard to develop a kind of cognitive theory of mindset.  I'm able to think through situations by myself rather than it being intuitive.  I actually have to work quite hard at that.  I have some sensory perception differences to other people.  So, my hearing is hypersensitive when I'm under stress.  So for example, when I'm really anxious, I get pains, pulsing pains in my ears.  I have a lot of problems with knowing which emotions I was experiencing and then how to deal with them before they built up.  So, most people are able to regulate their emotions over a day and do things to level up the balance between their anxiety and frustration for example whereas that's something that somebody with an autistic spectrum might find quite difficult and actually have to be very conscious to deal with that. 

Also, when I was at school, I got bullied a lot because I was different and a lot of people in the autistic spectrum I suppose, they don't think about work politics.  And so, they'll often say exactly what they mean and there are sometimes when they may well behave in a way that other people might not understand.  So, like stimming for example which is short for self stimulating.  Diagnostically, you call that repetitive routine behaviour.  So, things like flapping, looking and that kind of thing, people on the autistic spectrum will sometimes do that for a wide range of reasons, but could be anxiety, could be stress, could be dealing with overstimulation.  I have to have a period of time during my day where I stim generally just before bed for 15 or 20 minutes just to keep me calm and a bit more regulated.

Hannah -   Is there any other kind of roles or any other ways that you manage your autism?

Robyn -   Yes, lots really.  So, I have Stanley who is a stress star.  He's not a ball because he's in a star shape and I use him more particularly when I'm going up and down an airplane.  The thing about autism is that it affects people.  Autism really is just a cluster of human behaviour taken to the extremes.  So, the way that somebody on autistic spectrum experiences the world is just an extreme version of what somebody without autism might experience. 

So, the things that I find difficult and the tools that I use probably, they are similar to a non-autistic person.  But I'm perhaps more likely to use them on a more regular basis, but also in a more conscious way perhaps.  So, coming up and down on an airplane, that might sound like a very, very routine thing.  For me, I'm not really worried about plane crashes because they're so rare.  They do happen, but they're quite rare.  It's more of the pain because I'm hypersensitive.  My brain will process the change in air pressure and I could get overwhelmed by the pain.  Obviously, when you get off the plane, then you have to dealing with all the lighting and the sounds, and navigating around somewhere that you may well not have been before.  Using Stanley would be kind of a preventative measure to make sure I don't get too overwhelmed. 

I use headphones a lot.  I have an iPhone and I listen to music a lot.  I find like Led Zeppelin for example, "When the Levee Breaks", something like that.  It's really good for going through tube stations.  I ask people maybe a lot more than other people would because I don't expect myself to necessarily know why somebody may or may not do something, so I don't ask.  I also am very conscious about the fabrics that I wear, that there are some fabrics and some textures that I can't cope with.

Hannah -   Thank you very much, Robyn and also, do you think that your autism affects - I mean, it sounds like you've got lots of different ways of managing it in its preventative way, but do you think it still affects your relationships with friends, family or maybe a boyfriend or...?

Robyn -   Yeah.  I mean, autism obviously affects social communication, social imagination, social interaction.  So obviously, it's going to have an impact on the relationships that you have with your friends and family. 

So, there are some people on the autistic spectrum for example who only have one friend and that that's all they can cope with.  There are other people who don't have any friends and that's their choice or people on the spectrum who are asexual equally.  There are people on the spectrum who have lots and lots of friends. 

I found that I was very lonely up until about the age of 21 or 22 when I moved to London.  I started off going to social groups for other people on the autistic spectrum.  I suppose that my friends, predominantly, they have some sort of autism connection, whether they've had a sibling who is on the autistic spectrum or whether they work in autism.

Hannah -   Thank you, Robyn.  You mentioned that you work in the musical area.  So, you're a musician I believe?

Robyn -   Yeah, that's right.

Hannah -   People traditionally think of people with autism spectrum disorders as being scientists like myself for example.  You're obviously creatively very good.  How does that work?  Do you see that there is some stigma attached to autism now and some preconceptions with the public?

Robyn -   Well actually, I'm terrible at maths.  So, the complete opposite to you, I'd make a terrible scientist I think.  I think there's a lot of misunderstandings around autism because Simon Baron-Cohen worked on this theory around systemising - how people on the autistic spectrum like systems.  Music is something that does involve lots of systems.  If you think about how scales are made up, that's a system.  That relies on a lot of maths.  What music offer to some people on the autistic spectrum like me, it's a simpler way of communicating because human beings can be very complicated and quite hard to communicate with.  But when you communicate with people through music, which takes a lot of the difficulties away.

Hannah -   Thank you, Robyn Steward, speaking about her experiences with autism.  Robyn is also a National Autistic Society Ambassador where she helps others with the condition.