Denmark: Telephone counselling for people with autism became important for the target group

Extended telephone counselling for people with autism in Denmark.

The telephone counselling and chat services provided by Landsforeningen Autisme were aimed at children, young people and adults with autism and their relatives. Counselling was available to anyone with autism and to people who needed help in matters relating to autism.

“We also received several calls from teachers and institutions who needed help with getting children to return to school,” says Mehdi Owliaie, Head of Department at the Danish National Autism Institute, which was responsible for the telephone counselling provided by Landsforeningen Autisme.

In Denmark, it is not permitted by law to register people according to disabilities, so there is no exact figure on how many people there are in Denmark with autism. According to a research paper published in 2018, there were just under 32,000 people with a diagnosis on the autism spectrum in Denmark in 2016. According to Landsforeningen Autisme, the true figure at present is closer to 45,000, which is due to some methodological differences and the fact that the newer figure applies a broader definition of autism diagnoses.

“There are also many people who haven’t been diagnosed,” says Owliaie.

Telephone counselling provided by Landsforeningen Autisme was active essentially from the beginning of the pandemic until the end of 2021. Counselling was free and those who called were able to remain anonymous.

There were five people in total answering the phone line, which was open on Mondays and Thursdays from 13:30 to 15:00, Tuesdays and Wednesdays from 08:30 to 09:00, and Tuesday evenings from 19:30 to 21:00. Anyone who preferred not to phone could also send a text message.

Right at the beginning of the pandemic, Landsforeningen Autisme received many questions from people with autism and their relatives who did not know how to deal with the new situation. Owliaie and his colleagues at Landsforeningen Autisme therefore felt it was necessary to do something for the target group.

“We initiated the activity with the help of volunteers even before we’d received funding, maybe two or three weeks after the pandemic started,” says Owliaie.

The purpose of the counselling service was to create a confidential space where callers could get advice, guidance and help with problems relating to autism – for example, challenges relating to well-being and loneliness, conflict management or education and work.

“Our expectation was that our professionals can help those people who phone in and tell us about the challenges they’re facing. We also have previous experience of phone lines and expected a high number of calls. It’s not rocket science,” says Owliaie.

According to Landsforeningen Autisme, loneliness is a major problem for young people with autism. Research shows that adults with autism are vulnerable in a number of areas. Compared to the rest of the population, they are far worse in terms of education, employment and the ability to live independently and to establish social relations. This can mean that people with autism become socially isolated at a level that they themselves perceive as being problematic – or that family members or professionals react to.

In the past, Landsforeningen Autisme has had phone lines that were operated with the help of volunteers (such as parents of children with autism), but for the telephone counselling service during the pandemic, Mehdi Owliaie and his colleagues wanted to have professionals answering the questions.

“These are people with many years of experience of working with autism, such as special needs teachers and counsellors,” says Owliaie.

The counselling team consisted of an engaged and competent team with experience in special needs education and autism. Landsforeningen Autisme also points out that even though there have been and are other phone lines where you can find help, it was important to be able to offer a phone line where those who answer the calls really do possess knowledge and experience of working with people with autism.

As everything happened at a rapid pace after the pandemic began, the working group did not have time to reflect in greater depth on theories on which to base the initiative.

“Our objective was to understand the people phoning in and give them advice to set up strategies to make their everyday lives easier.

Owliaie explains that they have worked according to the motto ‘meaning – mestring’ (Danish for mastering). This means that they first listened to the person, the challenges they were facing and how autism affected this, and the counsellors then helped to find practical solutions to the problem.

The foundation was provided by the practical knowledge already possessed by the experts.

“Although no one had experience of a situation like this,” emphasises Owliaie.

Mehdi Owliaie and his colleagues at Landsforeningen Autisme are all satisfied with the efforts.

“Professionalism, friendliness, interest and respect were the watchwords in our telephone counselling,” says Owliaie.

Those who phoned in for counselling were also grateful.

“When the phone line was closed at the end of 2021, many people said that something was missing from their lives, and many wished we had continued,” says Owliaie.

He gives an account of a woman who called the telephone counselling service and whom he was able to help in a difficult situation:

“The woman was agitated and in tears. She was going to a meeting with the rehabilitation team and was concerned that everything would go wrong. I gave her guidance on how she could attend the meeting without her anxiety gaining the upper hand. She called five days later and said the meeting had gone as it should, and that she hadn’t been worried at all. It could have had major consequences in her life if she hadn’t shown up.”

Landsforeningen Autisme's telephone counselling service received an average of eight calls a day.

“That confirmed that there is a huge need for an initiative like this among our members,” says Mehdi Owliaie.

Callers were anonymous and no detailed information was collected about who called or with what kind of problem. Because of this, it has also not been possible to perform any follow-up on a personal level – unless the people themselves called back (as in the example above).

In spring 2020, the project received DKK 490,000 from the Danish State to fund the phone line.

“I think that it was money well spent. We did a lot for the people who called us. It would be expensive if people with autism became completely isolated, and you then needed to involve a number of professionals,” says Mehdi Owliaie.

If you evaluate the finances of similar initiatives in the long term, Owliaie believes that it is worth investing in preventive and assistive activities before any problematic situations can escalate.

“It wasn’t that expensive for the State to provide the grant, compared with how expensive the care could have been without the telephone counselling,” says Owliaie.

And Landsforeningen Autisme wanted to avoid spending the money made available for the project on administrative tasks.

“We wanted the money to go to the professionals who can help people.”

According to Mehdi Owliaie from Landsforeningen Autisme, not much work is required to get started with similar activities in other Nordic countries.

“Over the past 21 years, I’ve done several autism-related projects in Denmark, and this was extremely simple. All you need is a telephone line, professionals who can answer the phone, a framework and a target audience,” confirms Owliaie.