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The neurodiversity paradigm is reshaping how we understand, use language, interpret and undertake research, and support autistic people and those with related neurodevelopmental differences across the lifespan. Multi-disciplinary teams are seeking new ways to operationalise deficit focussed diagnostic criteria, to reflect the preferences of autistic people and the wider neurodiversity movement. In this chapter, we explore what the neurodiversity paradigm could mean in practice and how to reconcile the position that autism is a difference not a deficit and therefore individuals do not need to be “fixed” or “cured,” with the continued importance of timely diagnosis and the very real impact on participation, engagement, and wellbeing of autistic individuals and their families, within the environments of home, education, community, employment, and care. We present work underway to move from “single condition” pathways to neurodevelopmental pathways and new approaches which consider co-occurring conditions in a single process, involve autistic people as partners and value differences.

SummaryAdults with neurodevelopmental disorders frequently present to, but fit uneasily into, adult mental health services. We offer definitions of important terms related to neurodevelopmental disorders through unifying research data, medical and other viewpoints. This may improve understanding, clinical practice and development of neurodevelopmental disorder pathways within adult mental health services.

Visual supports are an important intervention for autistic individuals and others with neurodevelopmental differences. However, families often report limited access to visual supports and lack of information and confidence in their use at home. This pilot study aimed to evaluate the feasibility and effectiveness of a home-based visual supports intervention. Methods: 29 families with children (n = 20 males; mean age 6.59 years [Range 3.64–12.21 years SD 2.57]) receiving support for autism or related needs participated in the study. Parents engaged in an individualised assessment and intervention process through home visits, completing pre- and post-measures. Qualitative methods were used to explore the parents’ experiences of the intervention. Results: The intervention led to a statistically significant improvement in parent-reported quality of life (t28 = 3.09, p = 0.005) and parent-reported perception of autism-specific difficulties (t28 = 2.99, p = 0.006). Parents also reported improved access to resources and relevant information and increased confidence in using visual supports at home. The home visit model was strongly supported by the parents. Conclusion: The results provide initial evidence of the acceptability, practicality, and utility of the home-based visual supports intervention. These findings suggest that outreach into the family home may be a beneficial mechanism for delivering interventions related to visual supports. This study highlights the potential of home-based interventions to improve access to resources and information for families and the importance of visual supports in the home setting.

There is a variable standard of access to quality neurodevelopmental assessment and diagnosis. People may have negative experiences, encountering lengthy waiting times, and inconsistent practices. Practitioners need guidance on standards and practices for assessment and diagnosis matched to new ways of working. In this paper, we present a new pathway and recommendations for multidisciplinary neurodevelopmental assessment and diagnosis for children and young people (&lt, 19 years), developed by the Scottish Government funded National Autism Implementation Team (NAIT). Our research used the Medical Research Council guidance for the development of complex interventions and included several iterative stages. Stage 1: n = 44 stakeholders attended an event on developing new practices for diagnosis and assessment. Stage 2: a literature synthesis was completed by the research team of clinical guidelines and diagnosis and assessment tools. Stage 3: an event with n = 127 stakeholders included discussion and debate of the data from stages 1 and 2. Recommendations and a draft pathway were written. Stage 4: successive drafts of recommendations and the pathway documentation were circulated among an advisory group, including multidisciplinary clinical experts and people with lived experience, until the final pathway was agreed upon. The finalised pathway includes guidance on terminology, assessment, diagnosis, triage, time standards and engagement of people with lived experience. The new pathway has been adopted by the Scottish Government. The pathway and associated documentation are freely available online for use by others.

This study examined waiting times for diagnostic assessment of Autism Spectrum Disorder in 11 adult services, prior to and following the implementation of a 12 month change program. Methods to support change are reported and a multi-level modelling approach determined the effect of the change program on overall wait times. Results were statistically significant (b = - 0.25, t(136) = - 2.88, p = 0.005). The average time individuals waited for diagnosis across all services reduced from 149.4 days prior to the change program and 119.5 days after it, with an average reduction of 29.9 days overall. This innovative intervention provides a promising framework for service improvement to reduce the wait for diagnostic assessment of ASD in adults across the range of spectrum presentations.

The ‘autism diagnosis crisis’ and long waiting times for assessment are as yet unresolved, leading to undue stress and limiting access to effective support. There is therefore a significant need for evidence to support practitioners in the development of efficient services, delivering acceptable waiting times and effectively meeting guideline standards. This study reports statistically significant reductions in waiting times for autism diagnostic assessment following a children’s health service improvement programme. The average wait between referral and first appointment reduced from 14.2 to 10.4 weeks (t(21) = 4.3, p

Visual supports are recommended in autism spectrum disorder clinical guidelines. They can reduce anxiety, increase predictability, support communication and improve participation. They are implemented regularly in schools, but evidence about home visual supports is limited. This article reports results of a scoping literature review, alongside qualitative evaluation with parents and professionals. We report findings from 34 studies, identifying four categories of visual support and heterogeneity in participant characteristics, intervention methods, environments and outcome measures. Qualitative data from questionnaires (n = 101) and focus groups generated key themes about home visual supports, through thematic analysis: (1) Accessibility, (2) Participation-focussed (3) Individualisation, (4) Teaching Methods, (5) Consistency, and (6) Information and Training. We propose consensus with terminology and implications for practice and research.

This article reports on gender ratio, age of diagnosis and the duration of assessment procedures in autism spectrum disorder diagnosis in a national study which included all types of clinical services for children and adults. Findings are reported from a retrospective case note analysis undertaken with a representative sample of 150 Scottish children and adults recently diagnosed with autism spectrum disorder. The study reports key findings that the gender ratio in this consecutively referred cohort is lower than anticipated in some age groups and reduces with increasing age. The gender ratio in children, together with the significant difference in the mean age of referral and diagnosis for girls compared to boys, adds evidence of delayed recognition of autism spectrum disorder in younger girls. There was no significant difference in duration of assessment for males and females suggesting that delays in diagnosis of females occur prior to referral for assessment. Implications for practice and research are considered.

Aims To identify the main factors predicting delays in diagnosis for Autism Spectrum Disorder (ASD) at three stages in the diagnostic process: wait for first appointment; assessment duration, and total wait for diagnosis. Method Data were gathered from 150 case notes (80 child and 70 adult cases) from 16 diagnosing services across Scotland. Results Having more information pre-assessment was associated with a reduced duration of the diagnostic process for children. This relationship was partially mediated by a reduction in the number of contacts required for diagnosis. In adults, having more factors associated with ASD (increased risk) reduced the wait time from referral to first appointment, but increased the overall duration of the diagnostic process. The latter relationship was partially mediated by an increase in the number of contacts required for diagnosis. Conclusion Within children's services, increasing the amount of relevant information available pre-assessment is likely to reduce total duration of the assessment process by reducing number of contacts required. Having a high risk of ASD as an adult appears to result in being seen more quickly following referral, but also to increase the number of contacts needed and assessment duration. As a result, it increases and total duration overall.

Background There is a need for better evidence in relation to parent-focussed interventions for older children (over 7 years) and adults, which are recommended in clinical guidelines. Method We conducted a systematic review of studies published between 2006 and 2016 investigating wellbeing outcomes of ASD parent focussed interventions via a search of electronic databases including MEDLINE, PsychINFO, CINAHL and the Cochrane database. Results We screened 9605 titles, 57 full text articles and abstracts were read. Two were systematic reviews and 22 experimental intervention studies were included for review. Of these, five were Randomised Controlled Trials, three Controlled Trials and 14 Cohort studies. Interventions were Parent education and training (n = 12); Mindfulness or relaxation training (n = 6), Parent support groups (n = 2) and Multicomponent interventions (n = 2). Studies reported five wellbeing outcomes: quality of life, parent stress, self-efficacy, parenting style and satisfaction. Separate meta-analyses compared each outcome, to test and estimate the summary effect shared by studies reporting each intervention. Statistically significant outcomes were obtained for reducing parent stress via mindfulness training and for improving parent style and satisfaction, through parent education. Conclusions Analyses of a small number of studies indicate that parent focussed interventions could be effective in improving parent wellbeing, however further research is needed to determine optimal parent intervention models.

Background - There are few large scale studies about the nature and extent of the actual use of standardised assessments for Autism Spectrum Disorder diagnosis in clinical practice. This study compares and contrasts practice in diagnostic services for both adults and children.\ud \ud Method - We conducted an analysis of retrospective case notes from 150 cases (70 adult, 80 children) assessed for Autism Spectrum Disorder by 16 diagnostic services.\ud \ud Results - We found differences between adult and child services in staff training and use of standardised assessment during diagnosis. All child services had staff trained in and regularly using standardised assessments. Most adult services had staff trained in using instruments but only half used them regularly. Administration of standardised ASD assessments was ten times more likely in children than in adults (OR = 10.1; CI = 4.24, 24.0). Child services selected the ADOS as the standardised tool and adult services selected the DISCO, with very little overlap. Decisions to administer standardised tools were not based on case complexity but rather the same process was applied to all referrals within a service. The three recommended components of assessment (clinical history, clinical observation and contextual information) were included for the majority of cases, although clinical observation was more frequently used with children than with adults.\ud \ud Conclusions - Based on the findings, we suggest a need for a wider range of appropriate assessments for use with adults, particularly those with an intellectual disability and for further research into the reasons behind the choices clinicians make during the assessment process. For child services in Scotland, there is a need for more training in use of current diagnostic interviews. Clinicians did not vary tools used based on complexity, suggesting that this is a notion still to be clearly defined and operationalised in clinical decision making about the use of standardised assessments.

Background\ud \ud This paper reports on the development of child and adult Action Plans for Autism Spectrum Disorder to address the problem of delayed diagnosis and lengthy waiting times. Evidence used in the development of action plans was gathered from a sequential mixed methods study to further understand the reasons for the long waiting time and potential solutions. This is the first published investigation, from the perspective of diagnosing professional teams, of the reasons for delays, which also generates solutions.\ud \ud Methods\ud \ud Ninety five clinicians from 8 child and 8 adult services attended 16 focus groups to explore clinicians’ views on a) reducing the wait for diagnosis and b) providing a good quality diagnostic process with good adherence to clinical guidelines. During focus groups, quantitative data were fed back, used to frame discussions and facilitate solution focused action planning with each service. Sixteen local action plans were synthesised to create an ASD Action Plan for children and an ASD Action Plan for adults.\ud \ud Results\ud \ud Key solutions are proposed to support the reduction of the wait for diagnostic assessment, through reducing non-attendance rates, reducing inappropriate referrals, developing efficient working and communication and improving the effectiveness of care pathways. These are presented in actions plans for use by clinical teams.\ud \ud Conclusion\ud \ud The first step in addressing the clinical challenge of increased wait for diagnostic assessment of ASD is understanding the complex and multi-factorial reasons for delays. The action plans developed here through systematic enquiry and synthesis may provide clinical diagnostic teams with evidence based guidance on common challenges and solutions to guide future quality improvement programmes. Future research to evaluate whether using Action Plans leads to a reduction in waiting times would be of value.

Background:\ud This study explores the extent to which recommendations from the National Institute of Health and Care Excellence (NICE) 142 guidelines, section 9.2 (relating to identification, assessment and diagnosis) reflected existing routine clinical practice in Autism Spectrum Disorder (ASD) diagnosing services in Scotland; and whether there was a significant relation between routine practice which more closely reflected these recommendations and waiting times.\ud \ud Method:\ud A cross-sectional, retrospective case note analysis of recently diagnosed adults, in eight ASD services across Scotland.\ud \ud Results:\ud The study found that the existing practice of the participating services was consistent with 14 (maximum number) of the included recommendations in at least half of cases analysed (range 37–70 cases) and was not related to increased total waiting time for diagnosis.\ud \ud Conclusion:\ud The results, based only on the included recommendations, suggest that the section 9.2 recommendations can be integrated into clinical practice in Scotland with relative ease and that it is unlikely to have a negative impact on waiting times.

Children with high-functioning autism are widely reported to show deficits in both prosodic and pragmatic ability. New procedures for assessing both of these are now available and have been used in a study of 31 children with high-functioning autism and 72 controls. Some of the findings from a review of the literature on prosodic skills in individuals with autism are presented, and it is shown how these skills are addressed in a new prosodic assessment procedure, PEPS-C. A case study of a child with high-functioning autism shows how his prosodic skills can be evaluated on the prosody assessment procedure, and how his skills compare with those of controls. He is also assessed for pragmatic ability. Results of both assessments are considered together to show how, in the case of this child, specific prosodic skill-levels can affect pragmatic ability.

This study involved a qualitative analysis of speech errors in children with autism spectrum disorders (ASDs). Participants were 69 children aged 5-13 years; 30 had high functioning autism and 39 had Asperger syndrome. On a standardized test of articulation, the minority (12%) of participants presented with standard scores below the normal range, indicating a speech delay/disorder. Although all the other children had standard scores within the normal range, a sizeable proportion (33% of those with normal standard scores) presented with a small number of errors. Overall 41% of the group produced at least some speech errors. The speech of children with ASD was characterized by mainly developmental phonological processes (gliding, cluster reduction and final consonant deletion most frequently), but non-developmental error types (such as phoneme specific nasal emission and initial consonant deletion) were found both in children identified as performing below the normal range in the standardized speech test and in those who performed within the normal range. Non-developmental distortions occurred relatively frequently in the children with ASD and previous studies of adolescents and adults with ASDs shows similar errors, suggesting that they do not resolve over time. Whether or not speech disorders are related specifically to ASD, their presence adds an additional communication and social barrier and should be diagnosed and treated as early as possible in individual children.

Disordered expressive prosody is a widely reported characteristic of individuals with autism. Despite this, it has received little attention in the literature and the few studies that have addressed it have not described its relationship to other aspects of communication.To determine the nature and relationship of expressive and receptive language, phonology, pragmatics, and non-verbal ability in school-aged children with high-functioning autism and to determine how prosody relates to these abilities and which aspects of prosody are most affected.A total of 31 children with high-functioning autism and 72 typically developing children matched for verbal mental age completed a battery of speech, language, and non-verbal assessments and a procedure for assessing receptive and expressive prosody.Language skills varied, but the majority of children with high-functioning autism had deficits in at least one aspect of language with expressive language most severely impaired. All of the children with high-functioning autism had difficulty with at least one aspect of prosody and prosodic ability correlated highly with expressive and receptive language. The children with high-functioning autism showed significantly poorer prosodic skills than the control group, even after adjusting for verbal mental age.Investigating prosody and its relationship to language in autism is clinically important because expressive prosodic disorders add an additional social and communication barrier for these children and problems are often life-long even when other areas of language improve. Furthermore, a receptive prosodic impairment may have implications not only for understanding the many functions of prosody but also for general language comprehension.