“Recovery” from the diagnosis of autism – and then?

Martina Barnevik Olsson,1,2 Joakim Westerlund,1,3 Sebastian Lundström,1 MaiBritt Giacobini,2,4 Elisabeth Fernell,1,5 Christopher Gillberg1 1Gillberg Neuropsychiatry Centre, Institution of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden; 2PRIMA Child and Adult Psychiatry, Stockholm, Sweden; 3Department of Psychology, Stockholm University, Stockholm, Sweden; 4Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden; 5Research and Development Centre, Skaraborg’s Hospital, Skövde, Sweden Background: The aim of this study was to follow up the 17 children, from a total group of 208 children with autism spectrum disorder (ASD), who “recovered from autism”. They had been clinically diagnosed with ASD at or under the age of 4 years. For 2 years thereafter they received intervention based on applied behavior analysis. These 17 children were all of average or borderline intellectual functioning. On the 2-year follow-up assessment, they no longer met criteria for ASD.Methods: At about 10 years of age they were targeted for a new follow-up. Parents were given a semistructured interview regarding the child’s daily functioning, school situation, and need of support, and were interviewed using the Vineland Adaptive Behavior Scales (VABS) and the Autism – Tics, Attention-deficit/hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) telephone interview.Results: The vast majority of the children had moderate-to-severe problems with attention/activity regulation, speech and language, behavior, and/or social interaction. A majority of the children had declined in their VABS scores. Most of the 14 children whose parents were A-TAC-interviewed had problems within many behavioral A-TAC domains, and four (29%) had symptom levels corresponding to a clinical diagnosis of ASD, AD/HD, or both. Another seven children (50%) had pronounced subthreshold indicators of ASD, AD/HD, or both.Conclusion: Children diagnosed at 2–4 years of age as suffering from ASD and who, after appropriate intervention for 2 years, no longer met diagnostic criteria for the disorder, clearly needed to be followed up longer. About 3–4 years later, they still had major problems diagnosable under the umbrella term of ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations). They continued to be in need of support, educationally, from a neurodevelopmental and a medical point of view. According to parent interview data, a substantial minority of these children again met diagnostic criteria for ASD. Keywords: autism spectrum disorder, autistic traits, AD/HD, A-TAC, Vineland, cur

Preschool to school in autism: neuropsychiatric problems 8 years after diagnosis at 3 years of age

The study presents neuropsychiatric profiles of children aged 11 with autism spectrum disorder, assessed before 4.5 years, and after interventions. The original group comprised a community sample of 208 children with ASD. Parents of 128 participated—34 with average intellectual function, 36 with borderline intellectual function and 58 with intellectual disability. They were interviewed using the Autism-Tics, AD/HD and other Comorbidities interview. Criteria for a clinical/subclinical proxy of ASD were met by 71, 89 and 95 %, respectively. Criteria for at least one of ASD, AD/HD, Learning disorder or Developmental Coordination Disorder were met by 82, 94 and 97 %. More than 90 % of children with a preschool diagnosis of ASD have remaining neuropsychiatric problems at 11, despite early intervention

Children with borderline intellectual functioning and autism spectrum disorder: developmental trajectories from 4 to 11 years of age

Martina Barnevik Olsson,1,2 Anette Holm,3 Joakim Westerlund,1,4 Åsa Lundholm Hedvall,1,3 Christopher Gillberg,1 Elisabeth Fernell1 1Gillberg Neuropsychiatry Centre, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg University, Gothenburg, 2PRIMA Child and Adult Psychiatry, 3Department of Psychology, Astrid Lindgren Children’s Hospital, 4Department of Psychology, Stockholm University, Stockholm, Sweden Background: Studies on autism have tended to focus either on those with intellectual disability (ie, those with intellectual quotient [IQ] under 70) or on the group that is referred to as “high-functioning”, that is, those with borderline, average or above average IQ. The literature on cognition and daily functioning in autism spectrum disorder combined specifically with borderline intellectual functioning (IQ 70–84) is limited.Methods: From a representative group of 208 preschool children diagnosed with autism spectrum disorder, those 50 children in the group with borderline intellectual functioning at ages 4.5–6.5 years were targeted for follow-up at a median age of 10 years. A new cognitive test was carried out in 30 children. Parents were interviewed with a semi-structured interview together with the Vineland Adaptive Behavior Scales (n=41) and the Autism-Tics, attention-deficit/hyperactivity disorder (AD/HD) and other comorbidities inventory (A-TAC) (n=36).Results: Most children of interviewed parents presented problems within several developmental areas. According to A-TAC and the clinical interview, there were high rates of attention deficits and difficulties with regulating activity level and impulsivity. Vineland Adaptive Behavior Scales composite scores showed that at school age, a majority of the children had declined since the previous assessment at ages between 4.5 and 6.5 years. Almost half the tested group had shifted in their IQ level, to below 70 or above 84.Conclusion: None of the children assessed was without developmental/neuropsychiatric problems at school-age follow-up. The results support the need for comprehensive follow-up of educational, medical and developmental/neuropsychiatric needs, including a retesting of cognitive functions. There is also a need for continuing parent/family follow-up and support. Keywords: AD/HD, A-TAC, autism spectrum disorder, borderline intellectual functioning, developmental disorders, Vinelan

Neonatal regulatory behavior problems are predicted by maternal early pregnancy overweight and obesity:findings from the prospective PREDO Study

Abstract Introduction: Maternal overweight/obesity and comorbid hypertensive disorders and gestational diabetes associate with neurodevelopmental delay in the offspring in childhood. We hypothesize that these maternal conditions associate also with the offspring regulatory behavior problems and impact on neurodevelopment via the offspring regulatory behavior. Methods: A number of 3117 women of the PREDO Study filled in a questionnaire on regulatory behavior problems at the child’s mean age of 16.9 days and 2116 of them a questionnaire on developmental milestones at the child’s mean age of 42.2 months. Data on maternal BMI and comorbid disorders come from the Finnish Medical Birth Register. Results: Offspring of overweight/obese mothers in comparison to normal weight mothers had higher levels of regulatory behavior problems and 22% (95% confidence interval 5–42%) higher odds of having problems on multiple domains of behavioral regulation at the mean age of 16.9 days. Offspring regulatory behavior problems partially mediated the association between maternal overweight/obesity and developmental milestones comprising communication, gross motor, fine motor, problem solving, and personal/social domains of development. Comorbid disorders did not associate with offspring regulatory behavior problems. Conclusion: Regulatory behavior problems of the offspring have prenatal origins and partially mediate the effects of maternal overweight/obesity on offspring neurodevelopment

Medical history of discordant twins and environmental etiologies of autism

The environmental contributions to autism spectrum disorder (ASD) and their informative content for diagnosing the condition are still largely unknown. The objective of this study was to investigate associations between early medical events and ASD, as well as autistic traits, in twins, to test the hypothesis of a cumulative environmental effect on ASD risk. A total of 80 monozygotic (MZ) twin pairs (including a rare sample of 13 twin pairs discordant for clinical ASD) and 46 dizygotic (DZ) twin pairs with varying autistic traits, were examined for intra-pair differences in early medical events (for example, obstetric and neonatal factors, first year infections). First, differences in early medical events were investigated using multisource medical records in pairs qualitatively discordant for ASD. The significant intra-pair differences identified were then tested in relation to autistic traits in the remaining sample of 100 pairs, applying generalized estimating equations analyses. Significant association of the intra-pair differences in the MZ pairs were found for the cumulative load of early medical events and clinical ASD (Z = - 2.85, P = 0.004) and autistic traits (ß = 78.18, P = 0.002), as well as infant dysregulation (feeding, sleeping abnormalities, excessive crying and worriedness), when controlling for intelligence quotient and attention deficit hyperactivity disorder comorbidity. The cumulative load of early medical events in general, and infant dysregulation in particular, may index children at risk of ASD owing to non-shared environmental contributions. In clinical practice, these findings may facilitate screening and early detection of ASD

Understanding the mental health of refugees: Trauma, stress, and the cultural context

At the end of 2016, there were a record-high 65.6 million people forcibly displaced according to the United Nations High Commissioner for Refugees (1). With 300,000 new people displaced in 2016, there were 20 people newly displaced every minute of 2016. Most refugees flee their homes with little time to prepare (2) and, in turn, frequently are ill-equipped with the financial, linguistic, and other resources needed to address the challenges of the journey that lies ahead. The nature of the pre-migration and flight experiences for refugees, which are frequently marked by fear, forced departure, and experiences of torture and trauma, distinguishes them from other voluntary migrants. Since 1975 approximately three million individuals have been resettled in the USA (approximately 2 million adults and 1 million children) (3); this represents a significant population to respond to clinically. Importantly, status as a forcibly displaced person seeking refuge is not in itself a psychiatric condition – refugee status is a sociopolitical phenomenon with common downstream psychosocial effects (4). As refugees resettle in third party countries, often after prolonged stays in refugee camps in a country or countries outside of their home, many experience mental health problems associated with past trauma, ongoing stress, or both. In order to effectively serve resettled refugee and migrant communities, mental health professionals including, researchers, clinicians, educators, and policy makers need to understand the impact of the refugee experience and cultural contexts on psychosocial functioning. This chapter will review the unique mental health challenges and culturally-responsive assessments and treatments targeting some of the world’s most vulnerable and resilient populations