No abstract

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.

No abstract

Aims We aim to evaluate if the myelin pathology observed in epilepsy‐associated focal cortical dysplasia type 2B (FCD2B) and—histologically indistinguishable—cortical tubers of tuberous sclerosis complex (TSC) is primarily related to the underlying malformation or constitutes a secondary phenomenon due to the toxic microenvironment created by epileptic seizures. We also aim to investigate the possible beneficial effect of the mTOR pathway regulator everolimus on white matter pathology. Methods Primary mixed glial cell cultures derived from epilepsy surgery specimens of one TSC and seven FCD2B patients were grown on polycaprolactone fibre matrices and analysed using immunofluorescence and electron microscopy. Unaffected white matter from three age‐matched epilepsy patients with mild malformations of cortical development (mMCD) and one with FCD3D served as controls. Additionally, TSC2 knock‐out was performed using an oligodendroglial cell line. Myelination capacities of nanofibre grown cells in an inflammatory environment after mTOR‐inhibitor treatment with everolimus were further investigated. Results Reduced oligodendroglial turnover, directly related to a lower myelin content was found in the patients' primary cells. In our culture model of myelination dynamics, primary cells grown under ‘inflammatory condition’ showed decreased myelination, that was repaired by treatment with everolimus. Conclusions Results obtained in patient‐derived primary oligodendroglial and TSC2 knock‐out cells suggest that maturation of oligodendroglia and production of a proper myelin sheath seem to be impaired as a result of mTOR pathway disturbance. Hence, oligodendroglial pathology may reflect a more direct effect of the abnormal genetic programme rather than to be an inactive bystander of chronic epilepsy.

Objective: Serious games (SGs) are a promising means of fostering socio-emotional skills in children with autism spectrum conditions (ASC). However, alexithymia and emotional empathy have not yet been addressed adequately, and there is a lack of randomized controlled trials (RCT) to investigate skill maintenance and the transfer to functional behavior. Method: The manualized, parent-assisted SG Zirkus Empathico (ZE) was tested against an active control group, in a six-week multicenter RCT. Eighty-two children aged 5-10 years with ASC were assessed at baseline, post-treatment, and three-month follow-up. Parent-rated empathy and emotion recognition skills were defined as the primary outcomes. The secondary outcomes included measures of emotional awareness, emotion regulation, autism social symptomatology (Social Responsiveness Scale), and subjective therapy goals. Results: Training effects were observed after the intervention for empathy (d = 0.71) and emotion recognition (d = 0.50), but not at follow-up. Moderate effects on emotional awareness, emotion regulation, and autism social symptomatology were indicated by the short and mid-term assessments. Parents reported treatment goal attainment and positive training transfer. Conclusion: While a six-week training with ZE failed to induce lasting changes in empathy and emotion recognition, it may be effective for improving emotion regulation and mitigate alexithymia and general autism symptomatology.

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 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, &lt;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.

The causes of aggressive behavior in children with autism are poorly understood, which limits treatment options. Therefore, this study used behavioral testing and parent reports of 60 children with autism to investigate the interplay of emotion misinterpretation and hostile attribution bias in the prediction of different aggressive behaviors. Further, the additional impact of dysfunctional emotion regulation was examined. Path analyses indicated that hostile attribution bias increased verbal and covert aggression but not physical aggression and bullying. Dysfunctional emotion regulation had an additional impact on bullying, verbal aggression, and covert aggression. Emotion recognition was positively associated with hostile attribution bias. These findings provide a first insight into a complex interplay of socio-emotional variables; longitudinal studies are needed to examine causal relationships.