New nationwide research project DAN PACT: Proclaims breakthrough for children with autism
The Lundbeck Foundation, the Tryg Foundation, and the Novo Nordisk Foundation have secured funding for the largest research project on children with autism in Denmark to date. The project is carried out by the child and adolescent psychiatric clinics and research departments in all five regions in Denmark, the Copenhagen Trial Unit and the Center for Autism.
For the first time, all the regional child and adolescent psychiatric departments have come together to test a new innovative support for families with children with autism. This is happening in the DAN-PACT research project, where researchers and therapists in child and adolescent psychiatry are testing a method that has proven successful in England. DAN-PACT has been prepared for 4 years and is now made possible with a total donation of DKK 33 million from the TrygFonden, the Lundbeck Foundation, the Novo Nordisk Foundation and the Simon Fougner Hartmann Family Foundation, which means that the project can start in autumn 2022.
About 2 percent of all children today receive a diagnosis of autism within the group of autism spectrum disorders. Children with autism often have problems communicating and difficulty understanding other people's thoughts and feelings. Also, autism may be associated with a lifelong need for support, an inability to support oneself, and an increased risk of anxiety, depression and loneliness.
-Many parents and their children are in a desperate situation when they receive the diagnosis, because there is a lack of support to the autistic child's development. With the promising results from England, we now hope to be able to increase the children's linguistic and social development and competences, says Niels Bilenberg, professor of Child and Adolescent Psychiatry, Odense and one of the initiators of the research project.
The results from England show that development in children with autism can be promoted measurably and noticeably, both in the short term and measured again 6 years later. This inspires the Danish researchers, and at the same time another of the initiators, professor of child and adolescent psychiatry Pia Jeppesen, Roskilde, emphasizes that the work with DAN-PACT will develop and strengthen our collaboration with parents in child and adolescent psychiatry.
The new intervention (PACT – Pediatric Autism Communication Therapy) is a video-supported collaboration with the parents to strengthen their interaction with the child. The program include 18 sessions across 12 months, where parents and therapist work together based on observations of home video recordings of play with the child. The parents develop strategies to achieve joint attention with the child and to respond sensitively to the child's initiatives in play and intimacy.
- Our goal with DAN-PACT is to document the effects of the intervention and gather new knowledge that can be used to create the best possible conditions for children with autism and their families, says Pia Jeppesen.
In DAN-PACT, the researchers will carry out a randomized experiment with 280 children between the ages of two and six years, all of whom have recently been diagnosed with autism. All the families receive the usual support, but half are also offered the PACT intervention.
Before starting and after the end of the PACT intervention, each child is tested for the severity of its autism. The children are videotaped in connection with a structured test situation, which are reviewed by independent experts from the Center for Autism. However, when the experts assess the severity of symptoms of autism, they are blinded to whether children have completed the PACT or were allocated to the control group. This design increases the credibility of the experiment and thus the possibility of determining whether children in the intervention group have developed more than children in the control group.
Promising results
The results from a randomized trial in England were extremely promising, with PACT strengthening the children's social and communicative skills compared to children in the control group. The research project in Denmark will test the effect of PACT on children aged two to six years who have recently been diagnosed with autism. At present, a pilot project with 15 families has been completed, and the results show high satisfaction among the participating families and their therapists.
- With the promising results from England, there are many indications that PACT can become an attractive treatment offer for many children with autism and their families. We hope that the research project can provide an evidence-based basis to build on in a Danish context, says Research Director Jan Egebjerg, Lundbeck Foundation.
For the benefit of many
With the funding from the Tryg Foundation, the Lundbeck Foundation, the Novo Nordisk Foundation and the Simon Fougner Hartmann Family Foundation, the large-scale research project can start in all five Danish administrative regions from autumn 2022. This is to the great delight of practitioners both in child and youth psychiatry and in the Center for Autism, an independent foundation that supports people with autism and their relatives with research, teaching and support:
– The funds pave the way for the Center for Autism to make an even bigger difference for children with autism and their families. DAN PACT can create decisive new knowledge for the benefit of practitioners, researchers and not least people with autism, says researcher Jens Christensen from the Center for Autism & Incita.
DAN-PACT is financed with DKK 33 million donated by the Lundbeck Foundation, the Tryg Foundation, the Novo Nordisk Foundation and the Simon Fougner Hartmann Family Foundation.
Autism and ASD
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With autism spectrum disorder (ASD), one has persistent and pronounced problems in starting and maintaining mutual social and communicative interaction to a degree that cannot be explained by one's age or intelligence level. In addition, one may have very limited interests or there may be repetitive and inflexible behaviors that may seem atypical.
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Previously, people talked about many different forms of autism, such as infantile autism, atypical autism or Asperger's syndrome. According to the newest WHO classification (ICD-11), you must move away from this division and simply talk about autism spectrum disorder.
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Autism diagnosis can be attained in all age groups. The number of autism diagnoses in Denmark is increasing and has been doubled from 2008 – 2018. Today, approximately 2 per cent of all children receive the diagnosis.
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Many autistics suffer from phobias, anxiety, sleep disturbances, tantrums or self-harming behavior. However, these symptoms do not come from the autism itself, but from problems adapting to their surroundings. If you make the environment more autism-friendly, the problems are reduced significantly.
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Some people with autism achieve great success, and when they do, it is often because of the autism, not in spite of the autism. For example, Elon Musk, Anthony Hopkins, Dan Akroyd, Daryl Hannah, David Byrne and Gretha Thunberg.