Using data from a large-scale epidemiological sample (generously shared with us by the Norwegian Institute of Public Health), we provide initial examples of how and why such a stepped care and ...personalised health approach could be applied to address both the core features of autism and co-occurring conditions. Focused research strategies at the government or institutional level should be prioritised with an emphasis on clinical practice that can increase the understanding of what interventions work, for whom, when, how, with what general outcomes, and at what cost. Governments and services should monitor access to provision to ensure that underserved groups, including those who are minimally verbal, girls and women, minority ethnic groups, from socially disadvantaged backgrounds, or with severe co-occurring conditions, have equitable access to appropriate services. Societies in every part of the world have a duty of care to all people with autism and those who care for them, and investment in research and services needs to be targeted wisely to help them to reach better life outcomes and propel the change that makes this possible. Because it is defined by the intersection of social communication and sensory, restricted, and repetitive behaviours and interests, autism is a relatively specific disorder.
Previous research suggests children diagnosed with autism spectrum disorder (ASD or "autism") born extremely and very preterm face substantially delayed development than their peers born full-term. ...Further, children born preterm are proposed to show a unique behavioral phenotype, which may overlap with characteristics of autism, making it difficult to disentangle their clinical presentation. To clarify the presentation of autism in children born preterm, this study examined differences in key indicators of child development (expressive language, receptive language, fine motor, and visual reception) and characteristics of autism (social affect and repetitive, restricted behaviors).
One fifty-eight children (136 full-term, twenty-two preterm) diagnosed with autism, aged 22-34 months, were identified prospectively using the Social Attention and Communication Surveillance tools during community-based, developmental surveillance checks in the second year of life. Those identified at "high likelihood" of an autism diagnosis were administered the Mullen Scales of Early Learning and the Autism Diagnostic Observation Schedule.
The children born preterm and full-term did not differ significantly in their fine motor, visual reception, expressive language, or receptive language skills. No significant differences in social affect and repetitive and restrictive behavior traits were found.
The findings of this study differs from previous research where children diagnosed with autism born very or extremely preterm were developmentally delayed and had greater autistic traits than their term-born peers. These null findings may relate to the large proportion of children born moderate to late preterm in this sample. This study was unique in its use of a community-based, prospectively identified sample of children diagnosed with autism at an early age. It may be that children in these groups differ from clinic- and hospital-based samples, that potential differences emerge later in development, or that within the autism spectrum, children born preterm and full-term develop similarly. It was concluded that within the current sample, at 2 years of age, children diagnosed with autism born preterm are similar to their peers born full-term. Thus, when clinicians identify characteristics of autism in children born preterm, it is important to refer the child for a diagnostic assessment for autism.
There has been a recent shift from person-first to identity-first language to describe autism. In this study, Australian adults who reported having a diagnosis of autism (
N
= 198) rated and ranked ...autism-terms for preference and offensiveness, and explained their choice in free-text. ‘Autistic’, ‘Person on the Autism Spectrum’, and ‘Autistic Person’ were rated most preferred and least offensive overall. Ranked-means showed ‘person on the autism spectrum’ was the most preferred term overall. Six qualitative themes reflected (1) autism as core to, or (2) part of one’s identity, (3) ‘spectrum’ reflecting diversity, (4) the rejection of stigmatising and (5) medicalised language, and (6) pragmatics. These findings highlight the importance of inclusive dialogue regarding individual language preference.
The addition of ‘clinically significant impairment’ (American Psychiatric Association, Diagnostic and statistical manual of mental disorders, Author, 2013) to the diagnostic criteria for autism in
...DSM-5
attempts to establish a threshold for the condition. However, the increased prominence of the neurodiversity paradigm and social model of disability runs counter to the idea that characteristics of autism are fundamentally impairing. Consequently, diagnostic criteria for autism are becoming misaligned with the contemporary views of ‘disorder’ and ‘disability’. In this commentary, we outline six clinical issues that arise from this misalignment during diagnostic assessment for autism, and the tension this creates in making diagnostic decisions. We conclude by considering ways the ‘clinically significant impairment’ criterion could be changed, and the implications this would have on clinical practice, and the concept of autism.
In a recent editorial, Mandy declared an autism mental health crisis and proposed six ideas for how this might be addressed, with which we agree. However, we propose that for these ideas (e.g. ...training for mental health professionals) to be implemented for psychologists, assumptions about best practice need to be assessed considering the evolving conceptualisation of autism. The formation and development of a therapeutic alliance between a psychologist and client has been established as an important ‘common factor’ that impacts the efficacy of therapy. If one considers the double empathy problem and views autism through a neurodiversity lens, the development of a therapeutic alliance between a psychologist and client of different neurotypes might require an alternative approach to standard practice. We propose that psychologists (if they are, for example, non-autistic and working with an autistic client), are at risk of misinterpreting their clients’ communication and needs. As such, we consider the notion of cultural competency, and how the profession of psychology can move forward to help psychologists work effectively with autistic clients, learning from autistic people, including autistic psychologists.
Lay abstract
In a recent editorial, Mandy described an autism mental health crisis because autistic people are more likely to experience mental health concerns, yet they are less likely to get help. When autistic people do seek support, services tend not to be well matched to their needs. Alongside the six ideas Mandy suggested for addressing the mental health crisis, we think it is essential for psychologists to start changing the way they work to improve the person-environment fit for autistic clients. The relationship between a psychologist and their client influences the gains a client makes from engaging in therapy. The way psychologists are trained to build an effective working relationship with clients is based on neurotypical communication styles. The double empathy problem tells us that autistic clients relate to others differently to non-autistic clients, and so we propose that psychologists, especially when not autistic themselves, need to build the therapeutic relationship in a different way. We feel this is important, as the relationship between a psychologist and client is understood to be an important factor in how much the client can benefit from therapy. In this letter, we draw upon Bulluss’ call for cultural competency when working with autistic clients, and further insights from autistic psychologists, and propose that psychologists rethink some taken-for-granted aspects of practice to be better able to create a sense of interpersonal safety when working with autistic clients.
An autism diagnosis in adulthood can increase women’s self-compassion and inform appropriate supports. This study explored what helped and hindered autistic women when accessing an adulthood autism ...diagnosis in Australia. Ten autistic women diagnosed as adults within the past 5 years participated in a semi-structured interview about their experiences of accessing a diagnosis. Framework analysis was used to identify barriers and facilitators on person, provider and system levels. Person-level factors included women’s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers’ level of knowledge and skill in working with autistic women, as well as the women’s experience of being dismissed or misdiagnosed. Interactions between person- and provider-level factors highlighted that the diagnostic process is relational. System-level factors included the requirements of the diagnostic process (time, financial costs, and technology) and the nature of diagnostic criteria and assessment tools used. These factors provided the context in which person-level and provider-level factors operated. The experiences of participants highlight improvements that could be made to accessing an adulthood autism diagnosis for women in Australia, including provider knowledge of the heterogeneity of autism and the development of resources to help autistic women prepare for their diagnostic assessment.
Lay abstract
An autism diagnosis can have a big impact on women and make it possible to access support. This study explored women’s experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment.
Raising a child with an autism spectrum disorder (ASD) can be exhausting, which has the potential to impact on parental health and wellbeing. The current study investigated the influence of maternal ...fatigue and coping on the relationship between children’s problematic behaviours and maternal stress for 65 mothers of young children (aged 2–5 years) with ASDs. Results showed that maternal fatigue but not maladaptive coping mediated the relationship between problematic child behaviours and maternal stress. These findings suggest child behaviour difficulties may contribute to parental fatigue, which in turn may influence use of ineffective coping strategies and increased stress. The significance of fatigue on maternal wellbeing was highlighted as an important area for consideration in families of children with an ASD.
Raising a child with an Autism Spectrum Disorder (ASD) presents significant challenges for parents that potentially have a impact on their health and wellbeing. The current study examined the extent ...to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children with an ASD aged 2–5 years participated in the study. Compared with mothers of typically developing children, mothers of children with an ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction. The need for interventions to specifically target parental fatigue and its impact on families affected by ASDs both in the short and long term is clearly indicated.
There is growing interest in parent-delivered interventions (PDI) for children with autism. Treatment fidelity has been associated with child outcomes in PDI but little is known about what impacts ...fidelity. One factor not previously examined is parents’ resolution to the autism diagnosis which involves adjusting expectations about the child and sensitively responding to their cues, strengths and needs. Relatively little is known about resolution in the context of autism but there is evidence of an association between resolution and parent wellbeing.
The study adopted a mixed methods approach to examine whether there is an association between PDI fidelity and parent resolution to diagnosis, and whether resolution is associated with parent wellbeing. Parents of 31 preschool children diagnosed with autism who attended up to 12 Parent-delivered Early Start Denver Model (P-ESDM) coaching sessions participated in the study. A thematic analysis of parent interviews was also undertaken to identify themes raised by resolved and unresolved parents in interviews.
There was no difference in overall mean fidelity scores between resolved and unresolved parents. Those classified as resolved had lower depression scores and parenting stress scores than parents classified as unresolved. The qualitative analysis revealed that parents’ perceptions of their child’s progress and their hopes for the future appeared to distinguish resolved and unresolved parents.
Findings suggest that parent wellbeing and child progress may predict resolution which was not related to parent treatment fidelity in this study. Parent wellbeing and resolution status should be assessed at entry to PDI.
•The study 1. examined the association between parent resolution of a diagnosis in their child and their fidelity of parent delivered intervention•The study 2. described the response to their child’s diagnosis of parents considered to be resolved and unresolved•No differences in fidelity were found between parents classified as resolved and unresolved.•Parents classified as resolved reported significantly lower depression scores and lower parenting stress scores.•Child progress and parents’ hope for the future distinguished resolved and unresolved parents.•Parent wellbeing and resolution status should be assessed at entry to parent delivered intervention to provide targeted support to them.
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