Eva Billstedt

Public and patient involvement (PPI) is increasingly emphasized in health and autism research, yet involvement is often organized around individual research projects. Less is known about the practical and organizational processes involved in developing recurring PPI structures across clinical and academic settings. This paper describes and critically reflects on the establishment, implementation, and first-year experiences of two recurring PPI structures in western Sweden: a Patient Panel linked to an adult autism psychiatry service and a Neurodevelopmental Disorders (NDD) Advisory Board based at the University of Gothenburg. The two structures followed different implementation pathways. The Patient Panel was initially anchored to an ongoing research programme and involved autistic adults receiving psychiatric care, whereas the NDD Advisory Board was established from the outset as a broader forum bringing together researchers and representatives of patient and user organizations. First-year activities included review of research materials, ethical and methodological reflection, intervention development, discussion of research findings and clinical service development, and input into broader neurodevelopmental research questions. Contributor input resulted in identifiable changes to research procedures and intervention content, although involvement remained predominantly advisory and final decision-making authority remained with researchers, project leads, or clinical management. Implementation highlighted the importance of institutional context, organizational support, preparation, accessibility, compensation, and mechanisms for follow-up. Establishing the clinically embedded Patient Panel required iterative development of procedures concerning recruitment, data protection, compensation, and organizational responsibilities, whereas the university-based Advisory Board was administratively more straightforward to establish. Across both structures, governance, systematic documentation and follow-up of recommendations, and shared decision-making remained underdeveloped. Considered in relation to AASPIRE principles, several participatory practices were established, while important gaps remained in governance, accessibility procedures, and involvement across research stages. These experiences demonstrate that recurring PPI activities can be established in both clinical and academic settings, while highlighting that their establishment should not be equated with long-term sustainability or institutionalization. Developing sustained PPI requires ongoing attention to organizational procedures, resources, accountability, accessibility, and the distribution of decision-making authority.

Purpose: To examine mortality and causes of death in a population-based cohort of adults with autism spectrum disorder (ASD), and to compare findings with a sample drawn from the general population. Methods: A population-based cohort of individuals ( N = 113) born 1962–1984 and diagnosed with ASD in childhood during the 1970’s and 1980’s was followed up through register between 2000 and 2023. Most individuals were diagnosed with co-occurring intellectual disability (ID). The group was compared to an age- and sex-matched group ( N = 1130) from the general population. Data for both groups were obtained from the National Cause of Death Register in Sweden. Kaplan-Meier survival analysis was used to calculate the survival distributions of the participants with ASD and the comparison group, and Cox proportional hazards regression to estimate Hazard ratios for mortality. Results: During the study period (2000–2023) 9.7% of the ASD group and 2.7% of the comparison group had died, p < .001. The ASD group had a higher risk of mortality than the comparison group (Hazard Ratio = 3.77, 95%CI = 1.89–7.52, p < .001). Mortality did not differ significantly between males and females in the ASD group. Significantly more individuals with severe ID had died compared to the rest of the cohort, X ² (1, N = 113) = 4.7, p < .05. Conclusion: Individuals with ASD and co-occurring ID may be at greater risk of death compared to the general population. Our findings emphasize the importance of monitoring and promoting health in individuals with autism, with special attention to individuals with co-occurring ID.

Background: Longitudinal studies on cognitive, visuomotor, and adaptive function and their relation to outcomes in adults with the 22q11.2 deletion syndrome (22q11.2DS) are limited.Methods: This study involved 79 participants (43 females, 36 males) from an original cohort of 100 individuals (58 females, 42 males) with 22q11.2DS, assessed at ages 1–35 years between 1997 and 2006 (T1) and followed up in 2017–2022 (T2), when they were aged 18–50. Clinical, neuropsychological, and adaptive functioning assessments were performed.Results: At the group level, overall Full‐Scale Intelligence Quotient (FSIQ) remained stable; however, females displayed a significant decline in FSIQ and visuomotor integration (Beery VMI) from T1 to T2. At follow‐up, 19 of 56 (34%) participants had an uneven intelligence quotient (IQ) profile, with most (15/56; 27%) showing a higher Verbal Function Index (VFI) than Perceptual Function Index (PFI). At T1, 10 of 49 participants (20%) had this “uneven IQ profile,” defined as having a higher VFI than PFI (Verbal Comprehension Index [VCI] ≥15 IQ points higher than Perceptual Reasoning Index [PRI]), compared to 14 of 49 (29%) at T2. In the psychosis subgroup (n = 8), FSIQ and Verbal Intelligence Quotient (VIQ) showed significant decreases; however, the small sample size limits the validity of these findings. Severe to moderate adaptive function impairments, as measured by the Global Assessment of Functioning (GAF) scale, were observed at T2, with T1 FSIQ predicting GAF at T2.Conclusions: While group‐level intellectual functioning appeared stable, individual declines were noted. Long‐term follow‐up is essential for personalized support to mitigate severe psychiatric risks, including psychosis with declines in FSIQ, particularly VIQ, potentially indicating or resulting from psychosis in this population.

Aim: To study the diagnostic stability of developmental language disorders, other neurodevelopmental disorders and interventions received until age 6 years in children who screened positive for language delay, but not for autism, at age 2.5 years.Methods: In 2016, in Gothenburg, Sweden, 100 monolingual or multilingual children underwent language assessment at a mean age of 2.9 years. At age 6 years, 85 of these children underwent language assessment. A review of paediatric records was performed after the clinical assessment to obtain information about other neurodevelopmental disorders and interventions received.Results: At age 6 years, 74/85 (87%) of the children had persistent language disorders, and 20/85 (24%) had been diagnosed with at least one additional neurodevelopmental disorder. Five of them had autism. In general, families only attended half of the offered intervention sessions irrespective of intervention type and no difference between monolingual and multilingual families was found.Conclusions: The persistence of language disorder and the presence of later additional neurodevelopmental disorders highlight the importance of longitudinal and multidisciplinary monitoring of children with delayed language development. Further studies and analyses are warranted to investigate the reasons behind the poor attendance rate for interventions offered.

Introduction: Studies of cognitive functioning in patients with attention‐deficit/hyperactivity disorder (ADHD) have often used healthy comparison groups. The present study examines cognitive profiles, including general intellectual and executive functions, in a young adult psychiatric outpatient clientele with ADHD and evaluates whether their cognitive profiles can help differentiate them from patients with non‐ADHD‐associated psychiatric disorders.Methods: The study group comprised 141 young adult psychiatric patients (age range 18–25 years) of whom 78 had ADHD. Comprehensive neuropsychological assessment included the Wechsler Adult Intelligence Scale, 4th version and subtests from Delis–Kaplan Executive Function System. Clinical psychiatric assessments and diagnostic evaluation were performed.Results: The ADHD group (including all subtypes) had significantly lower verbal comprehension and full‐scale intelligence quotient than the non‐ADHD group. Tests measuring working memory or executive function did not separate those with and without ADHD.Conclusion: The results of our study suggest that, except for the need to establish overall cognitive performance level, the clinical implication of testing is small if the purpose is to “rule out” an ADHD diagnosis.

Purpose Autism Spectrum Disorder (ASD) occurs in 1-1.5% of the general population and possibly in up to 20% of psychiatric outpatients. Post Traumatic Stress Disorder (PTSD) occurs at some point in life in 4% of the general population and in 14–20% of psychiatric outpatients. Knowledge about how PTSD manifests in people with ASD is important in order for it to be correctly diagnosed and intervened for. Methods This study investigated the relationship between PTSD and autism among adult psychiatric outpatients (N = 90) of whom 63 had ASD or subthreshold ASD based on DSM-5 criteria. The study group was subjected to in-depth psychiatric assessments using validated instruments. Diagnosis of PTSD was made based on the Mini International Neuropsychiatric Interview (MINI). Results There was a trend towards PTSD being more common among participants with ASD compared to participants without ASD, although significant differences could not be shown in this small sample. 21% of the ASD group had current PTSD, compared to 4% of the study group without ASD. There were no differences between the groups regarding exposure to trauma. There was a trend towards a relationship between number of autism symptoms and hyperarousal symptoms in PTSD. Conversely, the PTSD symptom of irritability/outbursts of anger, was significantly associated with number of autism symptoms. Conclusions A subgroup of psychiatric outpatients with ASD also suffer from PTSD. Hyperarousal symptoms are possibly more prevalent in the presentation of PTSD in individuals/patients with ASD compared to those without ASD.

Intelligence tests predict academic achievement in typically developed children, however if this is the case also in children with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) is not clear. This systematic review and meta-analysis examined if Wechsler intelligence scales predict academic achievement and/or grades in children, ages 6-16 years, with ADHD and/or ASD. We searched the databases PubMed, PsycINFO and Education Research Complete for studies published between 2000 and 2023. We used the Newcastle-Ottawa Scale to assess risk of bias. Narrative synthesis and meta-analysis were performed. Twelve studies (ADHD n = 1,834, ASD n = 176) were included in the review, and six samples (ADHD n = 1,112) of those were included in the meta-analyses. The results of the meta-analyses showed moderate overall weighted correlations between IQ and word reading, written language, and mathematics respectively. Similarly, the overall weighted correlations between processing speed and the aforementioned domains of academic achievement were moderate. Meta-analysis with additional Wechsler scales composite scores could not be conducted. In the narrative synthesis, Full Scale IQ was associated with academic achievement in both ADHD and ASD, and grades in ADHD. The limited number of ASD participants and the heterogeneity of the samples need to be considered when interpreting results. Generally, the results indicate that Wechsler scales are valuable in predicting academic achievement in children with ADHD or ASD. Motivation and other factors related with academic achievement need to be further explored in these groups.

This study investigated language ability in 6-year-old mono- and multilingual children who, at age 2;6 years, had screened positive for developmental language disorder (DLD). One hundred children (32 girls, 68 boys) were assessed at an average age of 2;9 years (T1) and 85 of them (30 girls, 55 boys) were reassessed at age 6;0 years (T2) using a standardised test battery. Of these, 68 (23 girls, 45 boys) met the criteria for DLD diagnosis; 28 of them were monolingual and 40 multilingual. Language profiles at T2 were analysed, as were the associations between DLD and a mono- or multilingual background as well as other measures collected at T1, including mean length of utterance (MLU), heredity and parental education. As expected, the results showed that the total group (including both mono- and multilingual children) scored below test norms for 6-year-olds on all language tests, except for receptive vocabulary, where the monolingual children scored in line with those norms. The multilingual group performed significantly less well than the monolingual one on language comprehension, receptive vocabulary, recalling sentences, word finding and story retelling; disparities regarding MLU and language comprehension were already evident at T1. Interestingly, MLU at T1 showed a moderate association with language comprehension at T2 in the total group. The monolingual children were more likely than the multilinguals to have heredity for DLD or reading and writing disorders. In conclusion, language difficulties identified through screening and assessment before age 3 years often persist at age 6 years.

The Working Memory Index (WMI) in the Wechsler Intelligence Scale for Children (WISC) has been suggested to be associated with ADHD symptoms. The relationship between WMI and ADHD symptoms in the general population is not clear. The study aimed to examine the association between working memory (WM) and behavioral regulation (BR), and hyperactivity/inattention (HI) in a general population sample of 7–8-year-olds, and whether general intellectual functioning is associated with BR and HI. The study also examined if those with low WMI also fulfill elevated ADHD criteria. The study group (N = 865) was assessed with the WISC (Fourth edition), the Behavior Rating Inventory of Executive Function, the Strengths and Difficulties Questionnaire, and the Five to Fifteen Questionnaire, and divided into three groups based on WM function, and in relation to BR and/or HI problems. The associations between WM and BR, and WM and HI, including intellectual functioning as covariate, were examined. WM deficits were found in 22%, but the majority of those had no BR or HI problems. Four percent in the study group had WM deficits combined with BR and/or HI problems, and in about one third of those inattentive ADHD criteria were fulfilled. WM and prosocial behavior were associated with BR and HI. WM deficits measured with WISC WMI in 7–8-year-olds do not always signal BR and/or HI problems.