Editorial from the Lancet – download the original PDF here – it’s great! – http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(16)30831-5.pdf
http://www.thelancet.com Vol 387 June 18, 2016 2479
For more on Autistic Pride Day see http://www.aspiesforfreedom.com/autisticprideday.html
So much good in this. Well-done!
The annual Autistic Pride Day falls every June 18, with an ongoing theme of neurodiversity. The pride label is intended to encourage a celebration of autistic differences, rather than reinforcing stereotypical perceptions of autism as a disease. Autistic Pride Day educates people directly from the experiences of autistic people themselves, and celebrates autistic lives inclusive of wide variation, aiming also to progress a recognition of the achievements of autistic people. Society is still some way from understanding and accepting the range of autistic differences, and changing attitudes is a necessary step towards enabling autistic people to lead fulfilling lives without discrimination, and allowing them to participate in and contribute to all aspects of society.
Autism spectrum disorders (ASD) are a set of diverse neural development variables that are characterised most commonly by difficulty with social interactions and behavioural difficulties. It is a spectrum that manifests in a range of presentations, and is increasingly described by the autistic community, and by some clinicians and researchers, as a condition rather than a disorder. Prevalence is 1–1·5% of the population (one in 68 children in the USA, according to the US Centers for Disease Control and Prevention), and has previously been thought more common in men and boys, although current debates suggest that this might be an effect of basing diagnosis on behaviour, which varies between sexes. Diagnoses centred on behavioural issues can lack precision, as behaviour may be suppressed, camouflaged, and normalised by autistic people in order to fit in and avoid social stigma.
Autism is a relatively new diagnosis, becoming widely used only since the 1990s. In the fi fth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published in May, 2013, the diagnostic criteria were broadened as various diagnostic entities were pulled together, pre-school children were included, and prevalence subsequently increased considerably as a range of autistic traits were newly identified as part of the spectrum. Neurological research in the field remains difficult and sometimes controversial, and there is an ongoing lack of knowledge of the neurological bases for autism. Future understanding of causes, including genetic causes, will hopefully help to shape a more tailored approach to diagnosis and treatment management.
Neurodiversity encompasses the breadth of autistic characteristics; there are a wide variety of defining characteristics, and every person has a different experience of autistic life. A society that accepts neurodiversity requires cooperation and input from multiple stakeholders, including autistic people, neurologists and mental health professionals, parents, teachers, researchers, and employers.
Society needs to embrace neurodiversity in order to accept diff erences and variation, and to reduce stigma. Mental health professionals can provide interventions and support if there is an understanding of the details of autistic experience. Management can be complex, as people with autism are more likely to have comorbid mental health diagnoses and higher rates of suicidal ideation.
Approaches to intervention need to be highly personalised to suit each individual and to identify comorbidities correctly. Professionals also need to understand and accept neurodiversity—a lack of empathy could lead to a repeat of past approaches that forced people to conform to “normal” behaviour, which is neither eff ective nor acceptable.
An autism diagnosis most commonly takes place in the first 2 years of a child’s life—early detection brings more effective intervention. However, there is a need to improve detection and accommodation of autism in adulthood.
A diagnosis late in life can help people to understand why they feel they are diff erent to others, can help to understand accompanying mental health challenges, and may provide the beginning of a helpful clinical pathway—as well as providing clarity, it can be a signpost to relevant support.
Regarding treatment and societal support, external systems need to adapt to embrace variations in behaviour that include adults with late diagnoses. This shift is elusive: public perception still has some way to go to embrace diff erence.
There is no doubt that exciting times lie ahead for research into neurodiversity, which will inform future understanding of autistic life. Larger studies are needed, and with those, more precise tools and treatments will emerge. Concurrent priorities include listening to the autistic community, improving diagnosis and treatment options, off ering better support through all life stages, including school support, employment, adulthood, and breaking down the lingering stigma in public perception.
This is the real challenge: to achieve integration into society there is still a long way to go, and too many autistic people remain marginalised and badly stigmatised.