Leading the conversation about autism

Autisme Ungdom (Autism Youth) is an organisation for autistic youth, as well as relatives and friends of autistic youth. The organisation works towards creating better conditions for youth with autism in Denmark.

Photographs: Johan Haslund / Lasse son Olsen / Private

Text: Michaela Medveďová / Sara R. Newell

At the organisation’s helm stands its chairperson - Silke Ena Svare, a 22-year-old woman who is autistic and has ADHD. “At Autism Ungdom, both the board and in the organisation, we're all autistic ourselves - this makes us unique,” explains Silke.

Struggle with getting diagnosed

Getting a formal diagnosis was a struggle for Silke. “I’ve always been an obviously autistic child, but because I did well in school, they didn’t see the need to check if I had a diagnosis. Eventually, my mental health got so bad I considered taking my own life at 14.”

Silke saw several specialists throughout her childhood. When she was three, specialists did not consider autism because she was a girl. At the age of 12, her doctor thought she was too smart to be autistic and sat too still to have ADHD. "I had to go through all of this, even though my autistic behaviour was well-described in my old records. My schools always knew that my senses were getting overloaded quickly and that I had to take breaks in silent rooms to get through the day, and I had difficulty socialising with other kids."

By age 16, she had discovered that she was autistic. "After that, I finally talked to a specialist who knew about autism, specifically autism in women. It took her only two conversations to diagnose me with autism." It took another doctor's visit when she was 20 for her also to be diagnosed with ADHD.

"The only time I came home with the right diagnosis was when I could tell the doctors what I thought and what they should be checking for. It's unfair - it should be the specialists who can see your needs and difficulties, and not the other way around."

Leading the conversation

After all these experiences, Silke later read a post on Facebook about someone aiming to make a youth organisation for autistic people. Her first thought was, "I should be a part of that". She started out by being responsible for Autisme Ungdoms economy. However, after the original chairperson wanted to take the organisation in a more political direction, a significant branch of Autisme Ungdom saw a more social way forward and asked Silke to be the new chairperson.

The organisation has three goals. Firstly, they'd like to create more autistic communities in society so young autistic people can meet others like them. Secondly, they want to share more knowledge about autism in society, especially from autistic youth's perspectives. "In Denmark, we've seen parents or psychiatrists defining how we see and define autism, and we'd like to see autistic people leading the conversation." And lastly, they're working to create political change and better opportunities for equal access to education and employment.

This focus is increasingly important as more and more people realise that they are autistic and searching to be formally diagnosed. "Demands from our society are getting higher. You need to achieve more and more to be successful, which creates a lot of stress for people. Autistic people have a harder time meeting these demands. Having a formal diagnosis is like an escape card, an explanation as to why they can't do all the things demanded of them." This, in combination with the improvement of knowledge about autism, and this knowledge being more accessible through social media, will hopefully ensure that people may recognise their own autistic behaviour.

Waiting lists for being examined by a psychiatrist are very long - currently 64 weeks on average. And before you can get onto a waiting list, you must first go through your general practitioner for a referral. "This a problem because when people finally reach out to their general practitioner, they often have reached a point where they have developed anxiety or other symptoms."

More resources, more knowledge

Silke also sees the organisation of the Danish welfare system as a problem since municipalities decide whether a person is eligible for support and assistance, and municipalities also finance this support and assistance. "We're seeing that many municipality social workers are not granting support because the Danish government is unwilling to finance or ensure enough resources are available. So we see a lot of children who aren't allowed to go to the right school and youth who can't get the guidance they need to get a job."

Silke sees a need for more resources and a clear separation between the authority that grants assistance and support and the authority that finances this assistance. "#enmillionstemmer made a legal proposal about centralising the power to grant assistance so that it was based on specialised knowledge. Right now, disability assistance is underfunded, and as many more people are being formally diagnosed, we need more resources and better knowledge in our psychiatry system. Many specialists haven't refreshed their knowledge in 15-20 years, and so much research has been done since then."

Silke sees that there has been a lot of pushback from the government and that other areas are being prioritised over disability issues. In Silke's view, this can result in an entire generation of youth being stressed and burned out before they are old enough to enter the workforce, robbing them of the opportunity to provide value for society. "Providing more resources needs to be seen as an investment instead of a huge bill. And the investment will pay itself back in two, five, or ten years. Suddenly people wouldn't be on welfare or sick leave. Instead, they would get better, work, and 'earn' back the money invested in them."

This creates a stark difference between how the private sector responds to these needs and how the public sector addresses them. "When I talk to the public sector, they recognise an issue. But it's costly for them to listen and help solve the issue. Private organisations, however, are very interested in making workspaces more autism-friendly. And they're acting on it quite fast too."

But in general, Silke sees an improvement in how much society wants to listen. When Autisme Ungdom began, she had to convince people she was worth talking to and that young autistic people could speak up for themselves. "Some didn't even think our organisation would last more than a year. But now a lot of people come to me for advice. That's quite nice. After I'm done being the chairperson for Autisme Ungdom, I hope to work in another organisation and continue to help autistic people in our society."

For more information about the organisation, or if you want to help and get involved, contact: www.autismeungdom.dk