The lost generation: How a lack of identification of ADHD and autism fails millions of adults

Lead Research Organisation: University of Nottingham
Department Name: Sch of Psychology


Currently in the UK, it is estimated that over 2.5 million of neurodiverse adults have not received a diagnosis and therefore struggle to access care. The most common neurodevelopmental conditions, attention deficit hyperactivity disorder (ADHD) and autism (ASD), affect 5% and 1% of children and adults in the UK - on average one child per classroom. Nowadays, the understanding of autism and ADHD has greatly increase. However, a lot of adults and children have not received a diagnosis. Within the UK healthcare system, without a diagnosis, these patients cannot access the care they need. Having ADHD or autism often negatively impacts many aspects of life such as employment, relationship, or school. Studies have shown that adults with undiagnosed and untreated ASD/ADHD are more likely to have educational problems, mental health issues, depression and anxiety, are more likely to commit crimes and abuse substances, are more likely to divorce, be unemployed or commit suicide. These aspects are worse when ASD/ADHD is not diagnosed but can be reduced with early identification and effective support. Diagnosing ASD/ADHD as early as possible is of utmost importance in reducing some of these long terms risks for adults living with these conditions.
Recent governmental reports have highlighted the importance of having access to diagnosis and care for these conditions. In order to successfully address these priorities, it is important that research first identifies the costs of living with undiagnosed ASD/ADHD. Previous studies which have looked into the cost and impact of undiagnosed mental health on the individuals, society and economy have shown that the cost of not diagnosing and treating mental health issues was higher than the cost of running services for these issues. This led to the creation of a national NHS service (IAPT), a service helping adults with mental health issues.
No research to date has been done on the cost of undiagnosed ASD/ADHD. This new study will highlight the economic and societal cost of undiagnosed ASD/ADHD in order to give policy makers and healthcare providers the necessary information to justify funding appropriate services. Most specifically, the project will answer two questions:
1. What are the long-term risks and impacts (for instance: higher rate of divorce, substance abuse, unemployment) associated with undiagnosed ASD/ADHD?
2. What are the individual, societal and economic costs of these associated risks?
To answer these questions, first a literature review of published science articles will summarise the studies which looked into the risks associated with undiagnosed ASD/ADHD. Then I will conduct questionnaires and interviews with adults with ASD/ADHD to see whether the risks highlighted in the literature review reflect real life struggles. These two studies will create a comprehensive summary of the risks associated with undiagnosed ASD/ADHD. Once this summary is completed, an economic evaluation of the costs of these risks will be conducted with undiagnosed adults. In order to understand what these costs mean, they will be compared to three groups, one groups of adults diagnosed with ASD/ADHD in childhood, one group of adults diagnosed in childhood and one group of adults diagnosed in adulthood. This will allow us to establish the true cost of the impact of receiving a diagnosis as early as possible. A group of adults with ASD/ADHD will feedback on all the different tasks of this project to ensure it represents real-life experiences.
Many people argue that having conditions such as ASD/ADHD cost a lot more to society than neurotypical individuals (for example, extra support in class). However, this study argues that the cost of not identifying individuals with such difficulties, is likely to cost more in the long term (for example while extra support in class has a cost, school underachievement and unemployment will cost much more to an individual and society in the long run).


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