Open access article: https://www.preprints.org/manuscript/202406.0856/v1
Abstract
This study aimed to explore experiences of support after adulthood autism diagnosis.
In this mixed-methods survey study of 137 adults, we found that most common
formal supports received were counselling and mental health. Common unmet support
needs were sensory sensitivities and accessing other services. Cost, lack of
information, and fear of not being taken seriously were common barriers. Informal
support was mainly helpful for self-understanding and emotions toward diagnosis.
Qualitative findings included difficulties accessing formal support, need for practical
quality-of-life supports and support from autistic peers and online communities.
Based on these findings, future development of supportive interventions should
address unmet needs, improve access, and explore the integration of autistic peer
support and online support into formal services.
Citation: Huang, Y., Arnold, S.R.C., Foley, KR. et al. Experiences of Support
Following Autism Diagnosis in Adulthood. J Autism Dev Disord 54, 518–531 (2024).
https://doi.org/10.1007/s10803-022-05811-9
Οpen access article: (https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13806)
Abstract
After attention was drawn in the late 1960s to the poor reproducibility of psychiatric
diagnosis between clinicians, methods and procedures used to diagnose psychiatric
disorders were greatly improved. Sources of variance contributing to the poor
reliability of psychiatric diagnosis were identified that included: information variance
(how clinicians go about enquiring about symptoms), interpretation variance (how
clinicians weigh the observed symptomatology towards diagnostic formulations), and
criterion variance (how clinicians arrange symptom constellations to generate specific
diagnoses). To improve the reliability of diagnosis, progresses were made in two
major directions. First, diagnostic instruments were developed to standardize the way
symptoms are elicited, evaluated, and scored. These diagnostic interviews were either
highly structured for use in large-scale studies (e.g. the DIS), by lay interviewers
without a clinical background, and with a style of questioning that emphasized
adherence to the exact wording of probes, reliance on closed questions with simple
response formats (Yes/No) and recording respondents' answers without interviewer's
judgment contribution. By contrast, semi-structured interviews (e.g. the SADS) were
designed to be used by clinically trained interviewers and adopted a more flexible,
conversational style, using open-ended questions, utilizing all behavioral descriptions
generated in the interview, and developing scoring conventions that called upon the
clinical judgment of the interviewer. Second, diagnostic criteria and algorithms were
introduced in nosographies in 1980 for the DSM and soon after in ICD. Algorithm-
derived diagnoses could subsequently be tested for their validity using follow-up,
family history, treatment response studies, or other external criteria.
Citation: Fombonne, E. (2023), Editorial: Is autism overdiagnosed?. J Child Psychol
Psychiatr, 64: 711-714. https://doi.org/10.1111/jcpp.13806
Abstract
ESCAP firmly believes that there is an urgent need to apply widely endorsed clinical, scientific, and ethical standards to the care of children and adolescents with gender dysphoria. It is important to base decisions for possible medical transitions on a rigorous assessment of individual needs and their capacity to consent regarding the serious long-term consequences of these treatments. Long-term follow-up studies are urgently needed to better understand both the natural course of gender dysphoria in the absence of medical treatment and the consequences of medical transition. A clinical research framework with patient and public involvement should be established and promoted at the European level to facilitate relevant research. The standards of evidence-based medicine must ensure the best and safest possible care for each individual in this highly vulnerable group of children and adolescents. As such, ESCAP calls for healthcare providers not to promote experimental and unnecessarily invasive treatments with unproven psycho social effects and, therefore, to adhere to the "primum-nil nocere" (first, do no harm) principle. Finally, ESCAP insists that respect for all kinds of different views and attitudes is an essential part of an ongoing open professional debate that we wish to stimulate.
Citation: Drobnič Radobuljac, M., Grošelj, U., Kaltiala, R., ESCAP Policy Division, ESCAP Board, Vermeiren, R., Crommen, S., Kotsis, K., Danese, A., Hoekstra, P. J., & Fegert, J. M. (2024). ESCAP statement on the care for children and adolescents with gender dysphoria: an urgent need for safeguarding clinical, scientific, and ethical standards. European child & adolescent psychiatry, 10.1007/s00787-024-02440-8. Advance online publication. https://doi.org/10.1007/s00787-024-02440-8
Open access article: https://www.sciencedirect.com/science/article/pii/S0001691823001142
Abstract
The current “autism spectrum” DSM 5 diagnostic criteria and autism standardized diagnostic
instruments promote considerable heterogeneity or clinical indecision and may be detrimental
to the advancement of fundamental research on autism mechanisms. To increase clinical
specificity and reorient research towards core autistic presentations, we propose new
diagnostic criteria for prototypical autism during the age of 2- to 5-years. We include autism
within other non-dominant, familiarly aggregated phenomena sharing asymmetrical
developmental bifurcations, such as twin pregnancy, left handedness, and breech
presentation/delivery. Following this model, nature, trajectory, and positive/negative signs
structure of autism would result from the polarized problem of whether or not language and
information is processed in a socially biased manner. Prototypical autism would follow a
canonical developmental trajectory by which a gradual decline in social bias in the processing
of incoming information, overtly beginning at the end of the first year, bifurcates into a
prototypical autistic presentation in the second half of the second year of life. This bifurcation
event is followed by a plateau, in which these atypicalities show maximal stringency and
distinctiveness, and then ultimately, in most cases, by partial normalization. During the
plateau period, the orientation towards, and processing of, information is considerably
modified, with an absence of bias for social information, contrasting with a high level of
interest in complex, unbiased information, independently of its social or non-social nature.
Integrating autism into asymmetrical developmental bifurcations would explain the absence
of deleterious neurological and genetic markers and the presence of familial transmission in
canonical autistic presentations.
Citation: Laurent Mottron, David Gagnon, Prototypical autism: New diagnostic criteria and
asymmetrical bifurcation model, Acta Psychologica, Volume 237, 2023, 103938, ISSN 0001-
6918, https://doi.org/10.1016/j.actpsy.2023.103938.
Open access article: https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.2610
Abstract
Autism diagnosis in adulthood has become increasingly common due to a range of factors including changes in awareness, diagnostic criteria, and professional practices. Past research identified a range of demographic and autism-related factors associated with autism diagnosis age in children. However, it is unclear whether these apply to autistic adults. This study aimed to examine predictors of autism diagnosis age in adults while controlling for current age and autistic traits. We used a cross-sectional sample of 657 adults aged 15–80 from three self and carer-report studies: the Australian Longitudinal Study of Autism in Adulthood (ALSAA), Study of Australian School-Leavers with Autism (SASLA) and Pathways, Predictors and Impact of Receiving an Autism Spectrum Diagnosis in Adulthood (Pathways). Using hierarchical multiplicative heteroscedastic regression, we found that older current age and higher self-reported autistic traits predicted older diagnosis age, and that female gender, lack of intellectual disability, language other than English, family history of autism, lifetime depression, and no obsessive–compulsive disorder predicted older diagnosis age beyond current age and autistic traits. The paradoxical relationship between high autistic traits and older diagnosis age requires further investigation. Based on these findings, we recommended strategies to improve autism recognition in women and people from non-English-speaking backgrounds. Future studies could extend the findings by examining the effects of childhood and adulthood socioeconomic status on adult diagnosis age.
Lay Summary
We studied the relationship between age at autism diagnosis and other characteristics in adults. We found that both older current age and higher autistic traits, female gender, language other than English, family history of autism, and history of depression were related to older age at diagnosis, while intellectual disability and history of obsessive–compulsive disorder were related to younger age at diagnosis. Our findings suggest more work is needed to help recognize autism in women and people from non-English-speaking backgrounds.
Citation: Yunhe Huang, Samuel R. C. Arnold, Kitty-Rose Foley, Lauren P. Lawson, Amanda L. Richdale, Julian N. Trollor (2021). Factors associated with age at autism diagnosis in a community sample of Australian adults. Autism Research, 14:12, 2677-2687.