Emily Swiatek, an Autistic Woman who was one of the stars of the Channel 4 Documentary ‘Are You Autistic?’ , has kindly given some of her time to be interviewed by Autistic UK, about the programme, and some of her experiences! Emily also works as an employment training consultant for the National Autistic Society.
If you haven’t yet seen ‘Are You Autistic?’, you can watch it here
Ryan Hendry (Autistic UK); Firstly, thank you Emily for taking the time to answer our questions, I am sure you are very busy after the airing of last nights program! The program originally had a very different initial concept. But, with the involvement of Autistic people such as yourself, it seems as if there has been an entire change of thought, and the programme went in a completely different, and I have to say, much more positive direction. Would you be able to tell us, how did your involvement begin with the production, and how you felt you were able to help change the show’s production?
Emily Swiatek; I’ve been involved in the programme from the very early initial concept stages back in 2016, where I and a few other staff members from the National Autistic Society met with the team from Betty TV. I’ve worked on a few other TV shows, but this one felt different – fresher, more positive and from the start there was the desire to have a strong autistic voice and a lot of representation of autistic women.
TV shows often go through a number of different stages when they’re being made and the initial concept will look dramatically different to the end product -that was certainly the case for this show and it meant we ended up with something really great. I worked on the TV show predominantly in my own time, not work time, and gave as much feedback as I could on the things that I felt would help make the show a more positive experience for autistic people. I was disappointed when the initial launch of the show had the title that it originally did and I’m really glad that the production company and the channel listened to the feedback they received. Obviously, I was just one voice and I am so pleased that the Ambitious Youth Council also got involved and that their voices featured so strongly in the final show. I think it helped it become something even better than I’d dared imagine it could be right at the start.
Ryan; “Are You Autistic?” Also showcased Autistic Women, and very much put them in the centre of the stage for this show. With the old stereotypes of girls not being able to be Autistic, do you think this was an important step in breaking apart some of the old stereotypes and myths?
Emily; I think I this show is so important in breaking apart the old myths and stereotypes around autism. Obviously, there’s still a long way to go and a one hour show isn’t going to completely dismantled decades of built up ideas, but I think it’s a powerful step in the right direction. I can’t think of the last time that I saw so many autistic women so publicly celebrated and it’s a real credit to Betty TV that they listened and championed the idea that autistic women needed our profile raising in a major way. It’s really cool that the study showed this too -47,000 out of 87,000 potentially autistic responses were women.
One of the next steps will be making sure we move away from such a defined gender binary approach, as I think it’s really important that we start to have conversations about the issues trans people experience in accessing diagnosis. And although this wasn’t a totally white line up, I think it’s important to acknowledge that it was predominantly white and that we’ve still got a long way to go with making sure autistic people of colour are also given public platforms to discuss the issues they face due to prejudice and stereotypes.
Ryan; Appearing on National Television must have been a big challenge. You, and the others, all did an exceptional job in presenting the show. But was there anything that had to be changed behind the scenes in terms of how the show was filmed/produced, in order to allow you and the others to be at your best?
Emily; I really love doing TV and don’t find it all that stressful – it’s quite similar to my day job! I actually provided training for the whole production team at Betty TV before the show started filming as I thought it was really important that any autistic people who were involved had our needs met as well as could be. The team were superb – no ask was too big and they did a lot to accommodate us from sending out photos of the team in advance to asking a busy London pub to turn off their music and coffee machines so we didn’t have a melt down. They were consistently open to feedback on how our needs could be met and what they could do better to make sure the process was as stress free as possible for us.
Ryan; For anyone who watched “Are You Autistic?” And feel that they may indeed think “hey, that all makes sense to me now!”, and wish to obtain a diagnosis, what advice would you give to them?
Emily; I think my first piece of advice for people who are thinking about obtaining a diagnosis would be to stop, breathe and take a moment. It can feel really confusing and overwhelming when you first start looking into autism. After that, I’d suggest doing some research and start listing the traits of diagnosis that you relate to. You might want to ask friends, family or partners for their observations, although be aware that sometimes it can be hard for the people around us to say these things. Unfortunately, there are still a lot of stereotypes but that’s why asking people close to you to watch the show is a great opportunity to start to change those ideas.
Once you have your list, you can start pursuing a diagnosis. In the UK, we can go straight to our GPS and ask for a referral for a diagnosis. Sadly, as was mentioned on the show, waiting lists can be long and there’s not always the expert knowledge in diagnostic teams – this is why so many of us haven’t been diagnosed already. You may wish to peruse a private diagnosis if you have the means to do so and want a quicker process – I personally got diagnosed at the Lorna Wing centre and had an incredibly positive experience.
One of the most important things to know is that within the autistic community, we are very welcoming of people who self define as autistic because of the systemic issues people face in accessing diagnosis. The “official” diagnosis helps a lot of us have that peace of kind and self understanding that can be so essential for our wellbeing, but ultimately, it isn’t the diagnosis itself that makes us autistic. If you’re autistic, you’re autistic – it’s the way your brain is wired and that won’t change.
Ryan; Could you tell us, did you have a favourite moment during the production of the show? Perhaps a behind-the-scenes moment that made you realise “wow, what we’re doing here could be huge”?
Emily; I have a lot of favourite moments from working in the show, although I’ll be honest and say I never expected it to be as popular as it’s been! One of the highlights for me was that the show has bright some incredible autistic women into my life – there’s so much solidarity and encouragement to be found in connecting with people who understand the world like you, and that’s been a wonderful experience.
And the night of the show itself airing was wild – my Twitter was non-stop all night and the overwhelming majority of it was positive and encouraging. That’s the thing that makes me think that this show is actually something quite special and important.
Ryan; finally, is there anything you would like to add, that we perhaps haven’t asked about?
Emily; I think it can be hard sometimes when shows about autism are put out. It’s understandably a very emotional and triggering topic for many of us on the spectrum – from doctors who don’t believe us to experiences of bullying or ridicule, autistic people have often been through a lot. Sadly, there have been times where the medical profession has not helped with that and times where the media has continued to reinforce those narratives.
Change is slow and that can be extremely frustrating – one of them moments I was personally most disappointed with was when I referred to “having autism” instead of “being autistic” – a hangover from over 10 years of working in the autism profession and also perhaps a little bit of nerves (and it was flipping cold). The show for me was a net positive. Was it perfect? No, but then again, what is? Sometimes change has to come through working with those imperfect methods, by being the people to do some of the gentle challenging. That’s not to say that anger isn’t a valid and legitimate tactic, but i personally try to find the ways to work with people and bring the change about from within. It’s a slow process but I’m hopefully that ultimately, we will start to see a change in the world that means as autistic people we aren’t just known about but fully acknowledged and accepted as who we are.