Stefanie Preissner on Autism: 'There are different types of brains, and the world is built for just one type'

This Autism Awareness Month, Stefanie Preissner speaks candidly to Jen Stevens about her diagnosis - and coping with an eating disorder

Stefanie Preissner: speaking candidly on her Autism diagnosis. Photograph: Moya Nolan

“I get asked a lot about if I'm angry at my mother or my teachers for not identifying it sooner. I struggled for a long time, and now that I know, am I annoyed that people didn't see it then?

“How could my mother have spotted it when the only representation that she'd ever seen of autism was nonverbal, non-speaking young boys, who had such high support needs that they couldn't communicate with other people?

“Now that we know, my mam has said, well, you were like a little professor, you just knew something about everything and you were really fascinated by things, which is a facet of autism. It was just not a thing that girls were diagnosed with at all.” 

This World Autism Month is Stefanie Preissner’s first since she was diagnosed as Autistic. Although it’s less than 12 months since that official diagnosis, it’s something that she had suspected for quite some time. But the portrayal of autism on TV, in movies and in the media held her back from finding out. Now she’s passionate about representation and seeing people like her on social media and on television.

“After diagnosis I found a tribe of people who are representing women with autism, and autism in young girls as well. That's so powerful because unless you can see it, you're not going to know. I met a girl at the live podcast recently, who read my book, listened to my interview, identified with what I was saying, went to the place that I went to for my diagnosis, and is also Autistic. She's 23. That girl's life has changed, because she understands herself a bit more.” 

Stefanie Preissner: seeking to change Autistic representation in Irish media. Photograph Moya Nolan

While Stefanie’s diagnosis wasn’t a shock, it did take a little bit of time to process it. Once she did, she realised that all of things that she has always celebrated about herself are because she’s Autistic.

“There was a little bit of hope that was taken away with the diagnosis. I did always know that there was something different about me, but I always felt that if I just found the right combination of words, if I did enough, I would be able to be like other people. Then, when I realised that it was the type of brain that I have, I lost a little bit of that hope. It's not about me not working hard enough, I'm just never really going to be able to do that. That was a bit sad.

“But also, all of my successes are also because I'm Autistic. You only really hear about the struggles. My ability to observe the world, write TV shows, write books and write articles about people are because I observe them and know them the way David Attenborough knows animals.” 

Stefanie is passionate about people getting diagnosed and all the good that that can bring to an Autistic person’s life. but is concerned that people still hold back finding out because of the stigma around autism.

“What does alarm me is people who say, "Why did you bother? I don't want to get my child assessed, because I don't want them to have the label.

“If you don't get diagnosed, you're still Autistic. The only thing that changes is your understanding of yourself, and your ability to access supports.

“I think not wanting to have your child diagnosed is like denying them an eye test, even though they're squinting because you don't want them to have glasses. That's so dangerous because it's so difficult to be autistic in a neurotypical world, everything is just slightly more difficult because it's not designed for us.” 

Stefanie Preissner: "God grant me the confidence, to slide into a stranger's DMs to tell them how to identify themselves." Photograph Moya Nolan

That fear around labelling continues after diagnosis and people can be quick to tell you what you should and shouldn’t call yourself.

“I've never met an Autistic person who wants to identify as a person with autism. They all want to identify as Autistic because it's the same as being Jewish or the same as being gay. You can't remove it from yourself. It's your identity.

“When I disclosed my diagnosis, I had a couple of people message me saying, you're so brave, but just let you know like you're not Autistic, you have autism, you are not that diagnosis, that is not who you are.

“God grant me the confidence, to slide into a stranger's DMs to tell them how to identify themselves. I would reply and explain that I do not have autism. This is not something I have, or can get rid of, I'm Autistic. Their comment is based on an underlying assumption, a very subtle one, that there's something wrong with autism, that you don't want me to be identified by this because it is bad, and I disagree. The best things about me are Autistic and I'm really proud to be Autistic because it explains me to the world.” 

Stefanie Preissner: "Generally, when adult women have an autism diagnosis, they're coming with so many other diagnoses." Photograph Moya Nolan

Something else that Stefanie has had to work through has been her eating disorder. She says it’s something she has lived with ever since she’s been in the public eye and she spoke to Ryan Tubridy on the Late Late Show in 2017 about her 11 stone weight loss.

“Yes, I didn't see it as a problem at that point. That appearance is why a lot of people message me about weight loss and I have to say ‘I've an eating disorder and I can't guide you because I’m still dealing with that’.

“I was obsessed with the numbers, tracking the calories, the arithmetic of food, counting steps. I like to count things, all very Autistic behaviour. But because of society's obsession with being in a smaller body and the praise that you get, and we begin to lose weight, it’s easier to hide. My periods stopped for three and a half years, I was very, very underweight. It's been going on since I've been in the public eye. I lost 14 stone and was really unwell.

“It is believed that around 20% of people with anorexia are also Autistic and like a lot of things for Autistic people the treatment of an eating disorder is difficult. We were trying to treat it with CBT but that doesn’t really work for the Autistic brain. It’s a tightrope because when you’re asking why someone’s not eating pasta you have to take the autism into account. Are you not eating pasta because you don’t like the texture or because you think it’s got too many calories? Once we know which it is we can work with that.

“When I started getting treatment and nothing was working it was really frustrating but once I was diagnosed everything could be seen in a different way. It’s good now because I have a team that communicate with each other and are genuinely interested and willing to work with each other and learn as we go along. But my point here is that autism, especially without diagnosis, can impact so many other elements.

“The problem then is that your problem with eating disorders and autism is that I can't forget that data. I will always know how many calories in an egg, always know how many. Sometimes the memory is very, very annoying.

“Generally, when adult women have an autism diagnosis, they're coming with so many other diagnoses. They might have ADHD, sensory processing disorder, anxiety, trauma, an eating disorder. Yes, you do have trauma because it's traumatizing to be Autistic and of course, you’re anxious because you can't control everything and the world's unknowable, uncontrollable wildness is horrendous, but now that we know that your brain is Autistic, we can like help you find ways to cope.” 

Stefanie Preissner: "I feel like Autism Awareness is over, we need to move towards Autism Acceptance". Photograph Moya Nolan

This World Autism Month is centred around Autistic people at work and Stefanie says that Autistic people face huge barriers for employment.

“Is it going to be more effort for an employer? Possibly. It might be easier to hire a neurotypical person, but is that fair? They might need to make minor accommodations but the things that we can bring to your company are profound.” She’s also not always convinced by the public efforts made by businesses when privately they aren’t following through.

“Sometimes I think it can be a little bit tokenistic. It's nice that Autistic people can shop in your store in a way that doesn't overwhelm them. It's very easy to turn the volume down but are you going to hire someone and accept that maybe their work won't be delivered as quickly as a neurotypical person. Is it all about profit or can you accept that giving someone a purpose and an opportunity to work and bring the brilliance of themselves to a workplace is also of value?

“I feel like Autism Awareness is over, we need to move towards Autism Acceptance. Acceptance doesn't look that like nodding your head. It looks like action. There is neurodiversity everywhere. There are different types of brains, and the world is built for just one type. That's not fair.

“We need to make universal accommodations that mean that we're not always singling out people because of their differences. Just put in a ramp, there doesn't need to be stairs. People with legs can use a ramp as well. We don't need to just isolate people because of their disability.” 

• "As the charity Ambassador for AsIAm this World Autism Month, I want to let you know that autistic people face barriers in life that most people don’t see. Barriers to education, employment, friendships and social activities. If you want to give autistic people the same chance as everyone else, donate to AsIAm.ie this autism month."