Seeing Beyond the Spectrum
“Being different is a gift, it makes me see things from outside the box” Greta Thunberg told BBC Radio 4 earlier this year1; the 16 year old climate change activist was talking about her diagnosis of Autism. Chances are that you will know someone that you would describe as being ‘on the spectrum’. Describing someone in such a way suggests that they demonstrate Autism spectrum characteristics or traits; whether or not it is acceptable to use the term is another matter.
Autism is a lifelong neurological developmental condition for which there is no cure; it is not a learning disability or a mental illness (but sometimes they co-exist). Autism derives from the Greek word autos meaning ‘self’. The terminology has changed over the years but is based on the research by psychiatrist, Leo Kanner and paediatrician, Hans Asperger in the 1940s2. Kanner in the USA coined the term 'early infantile autism' to describe what he saw as a childhood impairment and Asperger in Austria used the label 'autistic psychopathy' describing his patients as 'little professors'. In the 1980s Lorna Wing first used the terms Autism spectrum and Asperger syndrome (for those with above average intelligence). Historically, a diagnosis would be centred around a triad of impairments; social and emotional, language and communication, and flexibility of thought. However, these are now seen as negative, outdated and rigid diagnostic criteria’s. The underlining cause of Autism is still not fully understood and there have been many controversial theories over the years which I will not touch on (that would be an article in itself!).
In 2000 the first All-Party Parliamentary Group on Autism (APPGA) was set up in the UK to raise awareness of issues facing people on the spectrum. The charity National Autistic Society (NAS) identified a lack of support for autistic adults and in 2009 worked with Parliament to create ‘The Autism Act’3 with two aims: for the UK government to produce a regular strategy; and to implement statutory guidance. 10 years on 93% of councils in the UK have a designated member to lead the development of adult Autism services.
The Equality Act 2010 in UK protects people on the Autism spectrum. There is a legal obligation to make reasonable adjustments and not to treat them less favourably. However, not all policies reflect the changing attitudes towards Autism; ‘The Mental Health Act’4 in the UK still includes Autism as a specified mental disorder alongside conditions such as schizophrenia, depression and bipolar.
In 2013 the Diagnostic and Statistical Manual of Mental Disorders (DSM–5) in the USA updated their diagnostic criteria to a single Autism Spectrum diagnosis5 and removed Asperger syndrome and other ‘high/low functioning’ descriptors. The justification for the change was to embrace the concept of the spectrum and avoid rigid diagnostic subgroups. Yet more recently there has been a move towards the term neurodiversity6. Neurodiversity does not label a disability or syndrome but rather defines people as either neurotypical (most people in the UK) or neuroatypical (1 in 7 people in the UK). As well as Autism, people with conditions such as ADHD and dyslexia may consider themselves neuroatypical or
neurodivergent. By using the term neurodiversity there is a focus on the positive differences in varying neurological traits, rather than the limitations.
In 2014 the Trade Union Congress (TUC)7 created a document focusing on Autism in the workplace. The document addresses how the workplace can be difficult for Autistic people but also suggests how to create Autism-friendly workplaces. The TUC describe the ways in which neurotypical people do not speak in literal terms but often say things figuratively or metaphorically e.g. “spend a penny” instead of “going to the toilet”. It highlights the need to understand your co-workers differences much like that set out in existing diversity and inclusion policies.
Berlin based company ‘Auticon’ exclusively employ professionals on the Autism spectrum and they are an award-winning leading global technology employer. In 2019 they entered into the Canadian market by working with ‘Meticulon’, Canada's first technology company focused on employing people with Autism. This highlights how such business models can be successful both for Autistic employees and the companies they work for.
Within the insurance industry the possible implications for claims might be for Income Protection (IP) or Total Permanent Disability (TPD). It’s unlikely that autism, in isolation would be reason for incapacity and if the autism had an impact on their normal daily life then we would expect this to be picked up at the underwriting stage. In fact, our underwriting manual MIRA is currently under review with autism one of the topics being considered. We have seen claims for children’s TPD which are very difficult and emotive; the specifics of the claim should be discussed with a medical officer to determine whether it is certain that the child will never be able to function in society or sustain employment as an adult. It may be necessary to manage expectations by deferring such decisions until the neurodevelopmental, mental, and/or behavioural disorders are known and progress (or lack of) in school has been shown.
It looks like Autism will remain a topic of debate for some time; from the labels, diagnostic criteria, attitudes within society and research to understand the underlying cause. There is still work to be done on government policies and particularly the Mental Health Act. However, the stigma around the condition is reducing much like mental health and LGBT+ rights; perhaps the concept of neurodiversity will change how we view Autism in the future.
1 https://www.theguardian.com/commentisfree/2019/apr/23/greta-thunberg-autism 2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3117464/ 3 https://bit.ly/334oy0v 4 http://www.mhldcc.org.uk/contents/16-mental-health-act/a-introduction.aspx 5 https://blogs.scientificamerican.com/observationsicle/PIIS0140-6736(18)32461-9/fulltext 6 http://www.acas.org.uk/index.aspx?articleid=6676 7 https://www.tuc.org.uk/sites/default/files/Autism.pdf