Young children with autism in a multi-ethnic immigrant population
We meet Petra Linnsand, psychologist and PhD student at the GNC. Here she talks about her autism research.
First of all, I wonder if you could tell me a bit about yourself?
I work as a psychologist at the Specialist Centre for Children and Young People, Angered Local Hospital, and I am a PhD student at the Gillberg Centre. In my clinical work I meet young children (0-4 years) with suspected autism and/or other developmental neurological disorders. I work in a multi-professional team for assessment and intervention for preschool children in one of Gothenburg's most multi-ethnic and socio-economically disadvantaged areas. What is unique about our work is that we offer both assessment and intervention for young children with autism locally in the district in collaboration with child health care centres and preschools in particular. The interventions target both the core symptoms of autism (social communication and behavioural difficulties) and other co-occurring difficulties, such as problems with sleep and eating. We offer interventions based on the Early Start Denver Model (ESDM). ESDM is an evidence-based naturalistic model and several studies have shown positive results for young children with autism. ESDM is based on the typical child's development and focuses on the positive relationship between the child and the caregivers. Through play and shared activities, the child is encouraged to strengthen language, social and cognitive skills in everyday activities.
How did you become interested in research? What questions interest you?
I was already interested in research during my undergraduate training as a psychologist and had the hope of eventually combining research with clinical work. When I started working in Hjällbo in 2013, this became possible.
Previous research has shown that children of immigrant parents have an increased risk of autism, but that these families have less access to care. The hope of the newly formed Early Childhood Team was to reach more children with suspected autism by working locally with both assessment and intervention. My research is based on my clinical work and the research questions I am currently working on were raised during that work. For example, we saw that many children were diagnosed with autism, which made us want to study the prevalence of autism in the area we work and whether we could reach more children and their families with the new collaborative model.
You are a PhD student at GNC, what is your project about?
The title of my PhD project is "Young children with autism in a multi-ethnic immigrant population". The aim of the project was to investigate the prevalence of autism in young children in an immigrant population, studying risk factors and clinical characteristics of autism, including feeding problems.
Furthermore, we wanted to study whether preschool can be part of the early detection of autism. Previous research has shown that children of immigrant parents are diagnosed later, missing out on important interventions. We therefore wanted to investigate whether preschool can be a complement to health care in the work of early detection.
The fourth study will describe an intervention program based on ESDM strategies for young children with autism in the preschool setting. The preschool teachers use strategies based on the ESDM treatment model in their play and daily routines. We will also examine the usefulness of the intervention program in the preschool setting.
You have recently published two articles. What were the articles about and what were the main findings?
Several studies show an increased prevalence of developmental neurological difficulties, such as autism, in children in immigrant populations. In the first study, "A High Prevalence of Autism Spectrum Disorder in Preschool Children in an Immigrant, Multiethnic Population in Sweden: Challenges for Health Care," we examined the prevalence of autism in preschool children in one of Gothenburg's most multiethnic and immigrant-dense areas, and studied possible risk factors for autism. In the study area, the estimated minimum prevalence of autism was 3.66% for children aged 2-5 years. Multiple risk factors were observed, including both non-genetic and genetic factors. The paper specifically highlights the importance of developing new models to increase access to care for children with autism in areas with a high immigrant population.
In children with autism, other concurrent developmental neurological and medical problems, including feeding problems, are common. In the second study, "Feeding Problems Including Avoidant Restrictive Food Intake Disorder (ARFID) in Young Children With Autism Spectrum Disorder in a Multiethnic Population," we studied the prevalence of feeding problems in general and more specifically ARFID in young children with autism. We also studied the characteristics of feeding problems in children with ARFID, age of onset and possible prodromal symptoms of feeding problems. In the study group we observed a high prevalence of feeding problems (76%) and in 28% of the children the criteria for ARFID were met. Furthermore, children with ARFID had more severe and persistent problems, lower BMI at age of autism diagnosis, required more frequent dietary supplements for longer periods, and were more likely to continue to meet criteria for ARFID at follow-up. ARFID and other developmental neurological disorders overlap. Persistent regulatory problems (RPs), especially eating-related RPs, and unusual sensory responses, appear to be "red flags" for autism and concurrent feeding problems. The study also highlights the need for broad multidisciplinary assessments and treatments in children with suspected autism as well as in children with feeding difficulties.
What are you working on right now?
Right now I am working on my third and fourth study.
The third study is about preschool as a complementary setting for early detection of autism. Early detection of autism is important because it allows to start interventions, which among other things can have a positive impact on the core symptoms of autism and prevent secondary behavioural problems. Delayed diagnosis is more common in children of immigrants, and therefore they are more likely to miss out on early interventions. The third study aims to investigate preschool as a complementary setting for early detection of autism symptoms, and to evaluate the psychometric properties of an instrument for early detection of autism in the preschool setting.
In the fourth study, we will describe an intervention program based on ESDM strategies for young children with autism in preschools. Furthermore, we want to gain a better understanding of the usefulness of the intervention program in the preschool setting.
What aspects of your doctoral studies do you enjoy the most? What is the most difficult?
What is most exciting about doing research is being able to scientifically investigate the questions that arise in everyday clinical practice, e.g., what is the prevalence of autism in the area we work in, what are the feeding difficulties or what can we do to detect young children with autism earlier. The most difficult thing is to find a balance between clinical work and research. Both are very fun and you can't finish either one.
Have you encountered many obstacles so far?
I haven't encountered very many obstacles. I have a fantastic group of experienced clinicians and researchers around me who give me support and good advice. In addition, I have both practical and financial support from my workplace.
Was it your intention to do a PhD?
Doing a PhD is more fun than I imagined. Being able to seek answers to the questions that come up in my work is fantastic and having the opportunity to develop models to increase access for a vulnerable group of children and their parents is very satisfying.