Persons with autism and persons with ADHD : the need to understand and improve services for families in Malta

Abstract

Persons diagnosed with autism, or Autism Spectrum Disorder (ASD) and/or Attention Deficit Hyperactivity Disorder (ADHD) are often reported to perform significantly low in overall wellbeing when compared to their neurotypical counterparts (van Heijst & Geurts, 2015; Meier et al., 2011). With active participation in society considered to be a key factor surrounding wellbeing (Askari et al., 2015), it comes as no surprise therefore that the reduced levels of involvement reported in areas such as social engagement, education, and leisure may be major contributors to this (Deserno et al, 2016). Over the years, Malta has made considerable shifts towards the recognition of certain rights when it comes to disability, although negative attitudes still exist, both from the general public, as well as professionals (Cardona, 2013). This study therefore sought to understand the experiences of those living with autism and/or ADHD in the local scenario, looking into how current support structures impact their livelihood. Using a mixed-method approach involving quantitative and qualitative data collection strategies, this study sought to highlight insider voices, attempting to ‘take stock’ of the status of the evidence base, listening to the voices of those concerned and their experiences with local services and within the wider local community as a whole, identifying any gaps in services or data along the way. The findings of this study indicate that locally, persons living with autism and/or ADHD, encounter challenges throughout their development from children into adulthood which considerably impact their performance and consequently their wellbeing. A number of areas for development were identified. The services surrounding the attainment of a diagnosis for instance, were found to be typically carried out professionally in the case of those flagged at early years, however, were severely lacking when it came to adults. Moreover, a vast majority (80%) of adult service user participants in the study had received their diagnosis during adulthood, exposing a local picture where diagnoses are not being made early enough, leading to individuals facing foundation schooling and critical years without the necessary support. Although services users who are being diagnosed as adults may have faced a different situation when they were of school age, since these conditions were less known and there was less awareness, nevertheless, caregivers are still reporting that there are instances where they know that there is a condition but find it hard to access a diagnosis as they are told to wait until the child is older. Support services and referrals for treatment offered following diagnosis were also found to be severely lacking, with 91% of service user respondents and 6 82% of caregiver participants not having received any services or information after receiving their diagnosis. Encouraging achievements within the educational and employment realm were observed, however areas for improvement still remain, with finding indicating this may be more so the case for those living with autism. Levels of dissatisfaction with services were reported across large numbers of participants with the highest ranked dissatisfaction expressed towards how well services were connected amongst each other, followed by access to services following diagnosis. Several lamented long waiting lists, lack of trained professionals and infrequency and inconsistency across public services provided. In addition to this, over 70% of participants reported being dissatisfied with the prospects for lifelong fulfilment, accompanied by concerns about services not catering for different age groups, particularly adolescence and even more so adulthood. These findings were also echoed in data gathered from service providers, who in the larger part, shared that there were waiting lists associated with the provision of their services – in some cases, of even more than 13 months. A review of the services provided amongst participating service providers also reflected the critical reduction in services available for adults when compared to younger ages. Amongst service providers, the largest challenge in offering services both for ASD and ADHD was lack of trained professionals. These include a range of services, such as occupational therapy, speech therapy, behaviour specialists, health and educational services as well as social services, amongst others. Over the years, valuable developments have been achieved when it comes to Malta catering for the needs of all of its citizens, including those living with ADHD or ASD. The views and experiences discussed in this study have brought several commendations for milestones reached and have also highlighted several others that still need to be worked as a society towards. Ultimately, awareness and understanding across the different strata and branches of society is at the base of making these developments possible. The study concludes with a list of recommendations proposed for the enhanced wellbeing of those living with these conditions and society at large. These include, amongst others, recommendations for policy, such as the creation of a one-stop shop for provision of services, the introduction of quiet rooms in places such as hospitals and schools, the incentivising of youngsters to undertake studies related to disability in order to enrich the local pool of professionals, and the involvement of diagnosed individuals in decision-making processes. Recommendations for further research are also laid out, such as investigating gender differences related to ASD and ADHD, where females are typically underdiagnosed, or further examining the findings of this study by looking into ASD and ADHD separately to bring more insight into, for instance, findings related to the educational and employment attainments for these groups