Autistic Adult Services Availability, Preferences, and User Experiences: Results From the Autism Spectrum Disorder in the European Union Survey.

There is very little knowledge regarding autistic adult services, practices, and delivery. The study objective was to improve understanding of current services and practices for autistic adults and opportunities for improvement as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Separate survey versions were created for autistic adults, carers of autistic adults, and professionals in adult services. 2,009 persons responded to the survey and 1,085 (54%) of them completed at least one of the services sections: 469 autistic adults (65% female; 55% <35 years old), 441 carers of autistic adults (27% female; 6% <35 years old), 175 professionals in adult services (76% female; 67% in non-medical services). Top choices by autistic adults, carers or professionals for services best suiting their current needs were: residential services: "help in own home" (adults, carers of high independent adults, professionals), "fulltime residential facility" (carers of low independent adults); employment services: "job mentors" (adults, carers of high independent adults, professionals), "Sheltered employment" (carers of low independent adults); education services: "support in regular education setting" (all groups); financial services: financial support in lieu of employment ("Supplementary income for persons unable to have full employment" for adults, "full pension" for carers of low independent adults) or to supplement employment earnings for carers of high independent adults and professionals; social services: "behavior training" (adults) and "life skills training" (carers and professionals). Waiting times for specific services were generally < 1 month or 1-3 months, except for residential services which could be up to 6 months; most professionals were uninformed of waiting times (>50% responded "don't know"). Five of seven residential services features recommended for autistic adults were experienced by <50% of adults. The knowledge of good local services models that work well for autistic adults was generally low across all services areas. The variation in services experiences and perceptions reported by autistic adults, carers, or professionals underscore the need to query all groups for a complete picture of community services availability and needs. The results showed areas for potential improvement in autistic adult services delivery in the EU to achieve recommended standards.

Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study.

LAY ABSTRACT: Professional guidance and support in response to first concerns appears to be an important predictor of the level of satisfaction with the detection process of autism in young children. In this study, we analyzed the views of 1342 family members, including 1278 parents, who completed an online survey form collecting information about their experience and satisfaction with the early detection of autism in their child. Specifically, we were interested in how specific experiences with the detection process relate to the satisfaction with it and whether we could identify important predictors of satisfaction. The detection process is an emotionally charged period for parents, often described as painful, chaotic, and lengthy. A better understanding of their experiences is important to take appropriate action to improve the detection process. In our sample, the level of satisfaction with the detection process varied greatly from one respondent to another. Among the different experiences we considered, whether or not respondents received professional guidance and support in response to first concerns explained most of this variation. We also found that difficulty finding information about detection services, lack of professional guidance and support in response to first concerns, having to find a diagnostic service on one's own, and longer delays between confirmation of concerns and first appointment with a specialist were experiences associated with a greater likelihood of being unsatisfied. The findings of this study highlight the importance of the parent-professional relationship in the detection process and have important practical implications for health administrations to improve the detection process.

Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals' Experiences.

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.

The link between attention deficit hyperactivity disorder (ADHD) symptoms and obesity-related traits: genetic and prenatal explanations.

Attention-deficit/hyperactivity disorder (ADHD) often co-occurs with obesity, however, the potential causality between the traits remains unclear. We examined both genetic and prenatal evidence for causality using Mendelian Randomisation (MR) and polygenic risk scores (PRS). We conducted bi-directional MR on ADHD liability and six obesity-related traits using summary statistics from the largest available meta-analyses of genome-wide association studies. We also examined the shared genetic aetiology between ADHD symptoms (inattention and hyperactivity) and body mass index (BMI) by PRS association analysis using longitudinal data from Northern Finland Birth Cohort 1986 (NFBC1986, n = 2984). Lastly, we examined the impact of the prenatal environment by association analysis of maternal pre-pregnancy BMI and offspring ADHD symptoms, adjusted for PRS of both traits, in NFBC1986 dataset. Through MR analyses, we found evidence for bidirectional causality between ADHD liability and obesity-related traits. PRS association analyses showed evidence for genetic overlap between ADHD symptoms and BMI. We found no evidence for a difference between inattention and hyperactivity symptoms, suggesting that neither symptom subtype is driving the association. We found evidence for association between maternal pre-pregnancy BMI and offspring ADHD symptoms after adjusting for both BMI and ADHD PRS (association p-value = 0.027 for inattention, p = 0.008 for hyperactivity). These results are consistent with the hypothesis that the co-occurrence between ADHD and obesity has both genetic and prenatal environmental origins.

Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project.

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.

Co-activation pattern alterations in autism spectrum disorder-A volume-wise hierarchical clustering fMRI study.

INTRODUCTION: There has been a growing effort to characterize the time-varying functional connectivity of resting state (RS) fMRI brain networks (RSNs). Although voxel-wise connectivity studies have examined different sliding window lengths, nonsequential volume-wise approaches have been less common. METHODS: Inspired by earlier co-activation pattern (CAP) studies, we applied hierarchical clustering (HC) to classify the image volumes of the RS-fMRI data on 28 adolescents with autism spectrum disorder (ASD) and their 27 typically developing (TD) controls. We compared the distribution of the ASD and TD groups' volumes in CAPs as well as their voxel-wise means. For simplification purposes, we conducted a group independent component analysis to extract 14 major RSNs. The RSNs' average z-scores enabled us to meaningfully regroup the RSNs and estimate the percentage of voxels within each RSN for which there was a significant group difference. These results were jointly interpreted to find global group-specific patterns. RESULTS: We found similar brain state proportions in 58 CAPs (clustering interval from 2 to 30). However, in many CAPs, the voxel-wise means differed significantly within a matrix of 14 RSNs. The rest-activated default mode-positive and default mode-negative brain state properties vary considerably in both groups over time. This division was seen clearly when the volumes were partitioned into two CAPs and then further examined along the HC dendrogram of the diversifying brain CAPs. The ASD group network activations followed a more heterogeneous distribution and some networks maintained higher baselines; throughout the brain deactivation state, the ASD participants had reduced deactivation in 12/14 networks. During default mode-negative CAPs, the ASD group showed simultaneous visual network and either dorsal attention or default mode network overactivation. CONCLUSION: Nonsequential volume gathering into CAPs and the comparison of voxel-wise signal changes provide a complementary perspective to connectivity and an alternative to sliding window analysis.

Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study.

Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.

Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives.

Early services for ASD need to canvas the opinions of both parents and professionals. These opinions are seldom compared in the same research study. This study aims to ascertain the views of families and professionals on early detection, diagnosis and intervention services for young children with ASD. An online survey compiled and analysed data from 2032 respondents across 14 European countries (60.9% were parents; 39.1% professionals). Using an ordinal scale from 1 to 7, parents' opinions were more negative (mean = 4.6; SD 2.2) compared to those of professionals (mean = 4.9; SD 1.5) when reporting satisfaction with services. The results suggest services should take into account child's age, delays in accessing services, and active stakeholders' participation when looking to improve services.

Correction to: Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives.

The original version of this article unfortunately contained a mistake in one of the co-author's family name. The correct name should be María Victoria Martín-Cilleros instead of María Victoria Cilleros-Martín.

Autism and the right to education in the EU: policy mapping and scoping review of Nordic countries Denmark, Finland, and Sweden.

Introduction: The universal right to education for people with disabilities has been highlighted by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies addressing the right to education and special education needs of autistic children in Denmark, Sweden, and Finland. Methods: A policy path analysis was carried out using a scoping review as an underlying framework for data gathering. Policy mapping was performed independently by both lead authors to increase reliability. Results and discussion: The values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities have been closely translated into the respective education systems of the countries under study, offering special education needs services and support in mainstream education with the aim of including as many children into mainstream education as possible. Even though the education systems are comparable, the approaches between the countries under study are slightly different. Denmark and Sweden have passed several policies specifically geared towards special education needs, while Finland incorporates this more in general education policy. Conclusion: All countries under study have incorporated the values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities in their respective education systems while emphasising the need to include as many children in the mainstream system as possible.

Brain response to facial expressions in adults with adolescent ADHD.

The symptoms of ADHD tend to have continuity to adulthood even though the diagnostic criteria were no longer fulfilled. The aim of our study was to find out possible differences in BOLD signal in the face-processing network between adults with previous ADHD (pADHD, n = 23) and controls (n = 29) from the same birth cohort when viewing dynamic facial expressions. The brain imaging was performed using a General Electric Signa 1.5 Tesla HDX. Dynamic facial expression stimuli included happy and fearful expressions. The pADHD group demonstrated elevated activity in the left parietal area during fearful facial expression. The Network Based Statistics including multiple areas demonstrated higher functional connectivity in attention related network during visual exposure to happy faces in the pADHD group. Conclusions: We found differences in brain responses to facial emotional expressions in individuals with previous ADHD compared to control group in a number of brain regions including areas linked to processing of facial emotional expressions and attention. This might indicate that although these individuals no longer fulfill the ADHD diagnosis, they exhibit overactive network properties affecting facial processing.

Emotion recognition from the eye region in children with and without Autism Spectrum Disorder in Arab and Scandinavian countries.

BACKGROUND: Difficulties in facial emotion recognition (ER) skills are linked to autism spectrum disorder (ASD) in studies performed in Western and Eastern Asian countries. However, there is a paucity of research examining ER skills in Arab countries, where face-covering veils are more common than in Western countries. OBJECTIVE: Our aim was to examine basic ER and ER error patterns in Egyptian and Finnish children with and without ASD. METHOD: We employed the eye-submodule of the Frankfurt Test and Training of Facial Affect Recognition (FEFA) and the Autism Spectrum Screening Questionnaire (ASSQ). RESULTS: Arab children with ASD (n = 34, M age = 8.6 years, FSIQ = 96.7) recognized correctly fewer emotions than did Scandinavian children with ASD (n = 32, M age = 12.5 years, FSIQ = 102.8) and Arab typically developing (TD) children (n = 34, M age = 10.3 years, FSIQ = 123.4) in general and specifically on surprise, disgust and neutral scales as well as on a blended emotion scale. Scandinavian children with ASD demonstrated a lower ability to recognize emotions in general and specifically happiness than did Scandinavian TD children. There were no differences between Arab and Scandinavian (n = 28, M age = 13.9 years) TD children in ER accuracy. We found country specific differences in ER error patterns in happiness, sadness and anger: Arab children interpreted these emotions more often as another emotion (happiness = sadness, sadness = anger, anger = sadness and surprise), whereas Scandinavian children interpreted happiness and sadness as neutral expression and anger as disgust. Arab children with ASD labeled sadness and anger in their ER error patterns more negatively than did Arab TD children, but there were no differences between Scandinavian children with ASD and TD in ER error patterns. CONCLUSIONS: The differences between the Arab and Scandinavian children may reflect cultural differences in ER and ER error patterns.

Profiles of Contextual Risk at Birth and Adolescent Substance Use.

This study examined whether there are subgroups of families with distinct profiles of prenatal/birth contextual risk, and whether subgroup membership was differentially related to adolescent substance use. Data from the Northern Finland Birth Cohort 1986 were used. A five-class model provided the most meaningful solution. Large Family Size (7.72%) and Low Risk (69.69%) groups had the lowest levels of alcohol, cigarette, and illegal drug use. Similar high levels for each of the three substance-related outcomes were found for Parent Substance Misuse (11.20%), Maternal School Dropout (4.66%), and Socioeconomic Disadvantage (6.72%) groups. Maternal smoking and drinking while pregnant and paternal heavy alcohol use were found to be key prenatal risk factors that tended to cluster together and co-occur with other prenatal risk factors differently for different subgroups of youth.

How are social-emotional and behavioral competences and problems at age 1 year associated with infant motor development? A general population study.

Based on limitations in previous research evidence, we concluded that more research is needed for deeper understanding of how social-emotional and behavioral (SEB) outcomes among infant-toddler-aged children in the general population are associated with early motor development. In this study, we investigated associations between early competencies and problems, as measured by the Brief Infant-Toddler Social and Emotional Assessment (BITSEA), and the timing of achievement of the main gross and fine motor milestones usually attained during the first year of life in a general population context. The study sample consisted of 515 infants (mean age 12.9 [SD 0.9] months) and their parents (514 mothers, 434 fathers), who were recruited in child health centers in Northern Finland. The infants were divided into two groups, based on their BITSEA screen status, and motor milestone achievement ages were compared across BITSEA screen status No Concern and Of-Concern infants. An Of-Concern screen status on the maternal and paternal Competence scale and Autism spectrum disorder (ASD) item cluster was associated with later infant achievement ages for gross motor milestones. By contrast, infants who were screened to be in the Of-Concern range on the maternal Problem scale achieved gross motor milestones earlier than infants with the corresponding No Concern screen status. No significant associations were found between the paternal Problem scale screen status and infant motor development. In further analyses, the strongest associations were found between an Of-Concern screen status on the paternal Competence scale and ASD item cluster and infant motor development. The findings indicate that the inclusion of infant motor developmental information may assist early identification and the clinical interpretation of parental reports of early SEB problems. Clinical implications of the current findings are discussed in the paper.

Building a theoretical framework for autism spectrum disorders screening instruments in Europe.

BACKGROUND: This study addresses the need for a theoretical base to develop more effective early autism spectrum disorders (ASD) detection tools. The structure that underlies early ASD detection is explored by evaluating the opinions of experts on ASD screening tools currently used in Europe. METHOD: A process of face and content validity was performed. First, the best constructs were selected from the relevant tests: Checklist for Early Signs of Developmental Disorders (CESDD), Checklist for Autism in Toddlers (CHAT), Early Screening of Autistic Traits Questionnaire (ESAT), Modified Checklist for Autism in Toddlers (M-CHAT), Social Communication Questionnaire (SCQ) and Communication and Symbolic Behaviour Scales Developmental Profile (CSBS-DP). The diagnostic content validity model by Fehring (1986, 1994) was adapted to make the selection. Afterwards, the items, taken from these tests, were selected to fit into each construct, using the same methodology. RESULTS: Twelve of the 18 constructs were selected by the experts and 11 items were chosen from a total of 130, reduced to eight after eliminating tautologies. CONCLUSIONS: Mapping these constructs and items on to the DSM-5 diagnostic criteria for ASD indicated good face and content validity. Results of this research will contribute to efforts to improve early ASD screening instruments and identify the key behaviours that experts in ASD see as the most relevant for early detection.

Early adversity and brain response to faces in young adulthood.

Early stressors play a key role in shaping interindividual differences in vulnerability to various psychopathologies, which according to the diathesis-stress model might relate to the elevated glucocorticoid secretion and impaired responsiveness to stress. Furthermore, previous studies have shown that individuals exposed to early adversity have deficits in emotion processing from faces. This study aims to explore whether early adversities associate with brain response to faces and whether this association might associate with the regional variations in mRNA expression of the glucocorticoid receptor gene (NR3C1). A total of 104 individuals drawn from the Northern Finland Brith Cohort 1986 participated in a face-task functional magnetic resonance imaging (fMRI) study. A large independent dataset (IMAGEN, N = 1739) was utilized for reducing fMRI data-analytical space in the NFBC 1986 dataset. Early adversities were associated with deviant brain response to fearful faces (MANCOVA, P = 0.006) and with weaker performance in fearful facial expression recognition (P = 0.01). Glucocorticoid receptor gene expression (data from the Allen Human Brain Atlas) correlated with the degree of associations between early adversities and brain response to fearful faces (R2 = 0.25, P = 0.01) across different brain regions. Our results suggest that early adversities contribute to brain response to faces and that this association is mediated in part by the glucocorticoid system. Hum Brain Mapp 38:4470-4478, 2017. © 2017 Wiley Periodicals, Inc.

PARENTAL REPORTS OF EARLY SOCIOEMOTIONAL AND BEHAVIORAL PROBLEMS: DOES THE FATHER'S VIEW MAKE A DIFFERENCE?

Although both mothers and fathers are essential sources of information to address early socioemotional/behavioral (SEB) problems, there continues to be a dearth of studies considering both parental views. A sample of 208 toddlers (Mage = 19.3 months) was recruited through public child health centers. Both parents of 172 toddlers (76 boys, 96 girls) completed the Child Behavior Checklist (CBCL) 1-5 (T.M. Achenbach & L.A. Rescorla, 2000; Finnish translation by F. Almqvist, ). Correspondence (intraclass correlation coefficients; ICCs) between the maternal and paternal CBCL ratings was good (.64) for the Internalizing and excellent (.76) for the Externalizing and Total Problems scores whereas ICCs varied from .45 for the Withdrawn to .76 for the Sleep Problems and Aggressive Behavior syndrome scores. Regarding discrepancies, mothers consistently reported higher CBCL scale scores than did fathers. Most significant differences between the parental ratings were found on the Aggressive Behavior syndrome, Externalizing, and Total Problems scales. Interparental rating discrepancies increased with elevations in the corresponding CBCL scale scores. Positive correlations were found between maternal, but not paternal, parenting stress and interparental rating discrepancies on the CBCL. The observed differences between maternal and paternal ratings highlight the importance of gathering reports from both parents when assessing early SEB problems. The findings are more profoundly discussed in the article.

Different Risk Factors Between Disruptive Behavior Disorders and ADHD in Northern Finland Birth Cohort 1986.

OBJECTIVE: To examine different risk factors between disruptive behavior disorders (DBD) and ADHD or combined DBD and ADHD. METHOD: The study population was derived from the Northern Finland Birth Cohort 1986. Psychiatric diagnoses were defined from the Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime Version (K-SADS-PL) interview. The study sample was divided into four groups-people with DBD ( n = 44), with ADHD ( n = 91), with both ( n = 72), and without either ( n = 250)-to evaluate the different risk factors behind these disorders. RESULTS: After adjusting with possible confounding factors, female gender and paternal admittance to inpatient psychiatric care increased the odds that an adolescent was having DBD. Childhood hyperactivity symptoms increased the odds of having ADHD and childhood hyperactivity symptoms and scholastic impairment increased the odds of having both disorders. CONCLUSION: Our study indicates DBD and ADHD have clearly different risk factors, and the impact of the paternal factors on DBD should be noted more than has been before.

European studies on prevalence and risk of autism spectrum disorders according to immigrant status-a review.

BACKGROUND: Autism spectrum disorders (ASDs), once considered to be rare, are now reaching prevalence estimates of 1% and higher. Studies conducted in North America indicate large racial/ethnic disparities in the diagnosis of ASDs. Others show, that immigrant children have similar prevalence rates of ASDs as native children, although they are diagnosed later compared with native children. In relation to a EU funded network action, Enhancing the Scientific Study of Early Autism, it was considered important to review the literature on this subject. METHOD: A comprehensive literature search was undertaken for original articles reporting on prevalence and risk for ASD in Europe among immigrants and ethnic minorities and data across studies were compared. RESULTS: Seventeen studies conducted in Europe concerning immigrants and ethnic minorities were found. Fifteen studies suggest a higher prevalence rate of ASDs among children of immigrants in comparison to native children (RR = 1.02-1.74; OR = 0.6-10.5). One study revealed higher prevalence of autism (OR = 2.2; 95% CI 1.6-3.1) and lower prevalence of Asperger syndrome in immigrants (OR = 0.6; 95% CI 0.3-0.97). One study showed a lower prevalence of Asperger syndrome in immigrants (aOR = 0.1, 95% CI 0.01-0.5). The majority of those analyses involved immigrants from outside Europe, e.g. from Africa and South America. CONCLUSION: After analysing the results of studies conducted in Europe, it is unclear if higher prevalence estimates of ASDs among immigrants in this region reflect true differences, especially considering many potential confounding factors, e.g. genetic, biological, environmental and cultural. Considering the number of people migrating within Europe there is a substantial need to study further the prevalence of ASDs in immigrant groups.

Longitudinal Pathways from Cumulative Contextual Risk at Birth to School Functioning in Adolescence: Analysis of Mediation Effects and Gender Moderation.

Children and adolescents exposed to multiple contextual risks are more likely to have academic difficulties and externalizing behavior problems than those who experience fewer risks. This study used data from the Northern Finland Birth Cohort 1986 (a population-based study; N = 6961; 51 % female) to investigate (a) the impact of cumulative contextual risk at birth on adolescents' academic performance and misbehavior in school, (b) learning difficulties and/or externalizing behavior problems in childhood as intervening mechanisms in the association of cumulative contextual risk with functioning in adolescence, and (c) potential gender differences in the predictive associations of cumulative contextual risk at birth with functioning in childhood or adolescence. The results of the structural equation modeling analysis suggested that exposure to cumulative contextual risk at birth had negative associations with functioning 16 years later, and academic difficulties and externalizing behavior problems in childhood mediated some of the predictive relations. Gender, however, did not moderate any of the associations. Therefore, the findings of this study have implications for the prevention of learning and conduct problems in youth and future research on the impact of cumulative risk exposure.