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Autism is a lifelong complex neurodevelopmental condition that affects brain development and behaviour with significant consequences for everyday life. Despite its personal, familial, and societal impact, Europe-wide harmonised guidelines are still lacking for early detection, diagnosis, and intervention, leading to an overall unsatisfactory autistic person and carer journey.
Methods
The care pathway for autistic children and adolescents was analysed in Italy, Spain and the UK from the perspective of carers (using a survey aimed at caregivers of autistic children 0–18 years old), the autistic community, and professionals in order to identify major barriers (treatment gaps) preventing carers from receiving information, support, and timely screening/diagnosis and intervention.
Results
Across all three countries, analysis of the current care pathway showed: long waits from the time carers raised their first concerns about a child’s development and/or behaviour until screening and confirmed diagnosis; delayed or no access to intervention once a diagnosis was confirmed; limited information about autism and how to access early detection services; and deficient support for families throughout the journey.
Conclusions
These findings call for policy harmonisation in Europe to shorten long wait times for diagnosis and intervention and therefore, improve autistic people and their families’ journey experience and quality of life.
Autism and epilepsy often occur together. Epilepsy and other associated conditions have a substantial impact on the well-being of autistic people and their families, reduce quality of life, and increase premature mortality. Despite this, there is a lack of studies investigating the care pathway of autistic children with co-occurring epilepsy in Europe.
Methods
We analyzed the care pathway for autistic children with associated epilepsy in Italy, Spain, and the United Kingdom from the perspective of caregivers (using a survey aimed at caregivers of autistic children 0–18 years old), the autistic community, and professionals, in order to identify major barriers preventing caregivers and autistic children from receiving timely screening and treatment of possible co-occurring epilepsy.
Results
Across all three countries, an analysis of the current care pathway showed a lack of systematic screening of epilepsy in all autistic children, lack of treatment of co-occurring epilepsy, and inappropriate use of antiepileptic drugs. A major challenge is the lack of evidence-based harmonized guidelines for autism with co-occurring epilepsy in these countries.
Conclusions
Our findings show both heterogeneity and major gaps in the care pathway for autism with associated epilepsy and the great efforts that caregivers must make for timely screening, diagnosis, and adequate management of epilepsy in autistic children. We call for policy harmonization in Europe in order to improve the experiences and quality of life of autistic people and their families.
This final chapter brings the analysis together, highlighting the findings of the book once again. Authoritarian learning is not as vertical as widely considered in the literature, with Russia playing less of a role in the processes of learning than previously considered. Another key finding is that there are clear instances of dialogue in this type of learning. This points to – at the very least – a strong form of diffusion that provides for regular contact, dialogue and sharing of best practices for consolidation. A final key finding is the importance of post-Soviet regional organisations in providing learning opportunities and chances for sharing best practices. Therefore, these organisations are crucial for learning. The chapter ends by developing some policy recommendations for coping – and countering – the likely continuation and growth in the number of authoritarian regimes in the coming years.
Autism is a lifelong complex neurodevelopmental condition that affects brain development and behaviour with significant consequences for everyday life (WHO, 2018). Despite its personal, familial and societal impact, there is still a European-wide lack of harmonised guidelines about the support needed from early stages, the most sensitive time to gain positive future outcomes (Berajamo-Martin et al, 2019).
Objectives
The objectives were: 1. To analyse autistic children care pathway and patient/carer journey in three European countries: Italy, Spain and U.K. 2. To propose policy recommendations on how to improve this pathway.
Methods
To identify major barriers and treatment gaps, we conducted a rapid literature review of the care pathway in Europe and a survey aimed at parents or carers of autistic children ages 0 to 18 living in the three countries. The survey gathered information on screening, diagnosis, accessibility and support received before, during and after diagnosis. Members of the working group met to discuss results and propose policy recommendations.
Results
1. Current care pathway analysis showed the following treatment gaps: Long waiting time from first concerns until screening visit and confirmed diagnosis. Delayed or no access to intervention once diagnosis has been confirmed. Overall limited information about autism and how to access early detection services. Overall deficient support to families. 2. Please see Box 1 for our proposed policy recommendations.
Box 1. Policy recommendations
Conclusions
Our findings and recommendations will inform policy harmonisation in Europe to shorten long waiting times, diagnosis process and intervention, and therefore, improve autistic people and their families’ journey experience and quality of life.
The concluding Chapter 7 answers the research questions and provides a comparative analysis of unfolding low-carbon transitions in the three focal systems. It also inductively draws conclusions about cross-cutting topics with salient differences and similarities between the three systems, including: the roles of incumbent firms, governance style and politics, users, wider publics and civil society organisations, and exogenous ‘landscape’ developments and shocks. Chapter 7 ends by discussing future low-carbon transitions, articulating policy recommendations, and offering suggestions for future research.
The concluding chapter draws out the implications of our findings for scholars and policymakers. First, it identifies key patterns in our findings and proposes hypotheses for further research. Inductively, it suggests that the degree of Chinese policy coherence reflects whether coordinating mechanisms are deployed and effective, and whether powerful domestic interests align. It argues that our conceptualisation of the Chinese party-state does not necessarily mean that Chinese behaviour is unproblematic – but that it may emerge for reasons not anticipated by traditional models. And it emphasises the crucial importance of partner/recipient countries in shaping the outcomes of Chinese overseas engagements. Secondly, the chapter draws out recommendations for policymakers in China and elsewhere. We argue that responding to China’s rise as though it was a strategically guided monolith is clearly mistaken, requiring a more nuanced and sophisticated approach. We also urge Chinese policymakers to be more open about the limitations of Chinese governance and to attempt more decisive state reforms. In a final postscript, we offer some thoughts about what light the state transformation framework can shed on the COVID-19 pandemic.
The Conclusion retraces the argument foregrounded in the book. It reflects on recent events in border control cooperation between the EU and Morocco, and casts attention on future developments, especially in light of the COVID-19 pandemic. The chapter also identifies future research avenues and formulates policy recommendations for development and humanitarian practitioners.
In this concluding chapter, we delineate theoretical insights drawn from relevant comparisons among the case studies and suggest policy recommendations. Specifically, we reassess the three hypotheses, identify and map relevant patterns from the different case studies across several regions of the world, offer several policy recommendations based on these patterns, and draw some general conclusions. In addition to the observable patterns as related to type of borders, political and institutional arrangements, and political economy, in the perusal of the eleven case studies we identified two additional elements that further explain the reality of peaceful borders and illicit transnational flows: the geopolitical location of regions and subregions, as hubs for transnational illicit flows; and the legacy of civil and intermestic wars. In the last part of the chapter, we suggest several policy recommendations: (1) be aware of the normative dilemmas of human security; (2) increase cooperation and develop effective mechanisms of governance at all the possible levels; and (3) promote and prefer peace rather than war, but be aware of its potential unintended consequences.
Drawing on the empirical detail presented in the previous chapters, I bring together the theoretical and policy implications of this study in Chapter 5. In the first part of this chapter, I offer a brief summary of my research findings, and then develop some generalizations on the life-cycles of narratives. In the second section of this chapter, I develop guidelines that may assist practitioners in building effective narratives as vital instruments of public policy and diplomacy.
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