UK: Insights On Autism: Improving Our Awareness

Last Updated: 8 April 2016
Article by Karen Taylor

Most Read Contributor in UK, August 2017

Some of you reading this blog may already be hooked on the new BBC One drama, The A Word, which shows the reverberation felt across one seemingly perfect family when its youngest member, Joe, is diagnosed with autismi. Others may have seen it advertised and thought the subject matter didn't resonate or would be too uncomfortable to watch. Certainly that was my husband's initial reaction but watch it he did and we both found portrayal of this much misunderstood condition very enlightening. Not only does it provide some idea of how wide and varied the condition is, it also highlights that being given a diagnosis is not only life changing for the child, but also for the whole family. As it happens, next week, Saturday 2 April to Friday 8 April, is World Autism Awareness Weekii so I thought I'd use this week's blog to provide some facts, figure and insights on autism and contribute in a small way to raising awareness about the condition.

Estimates suggest that more than half a million people in England have autism, equivalent to more than one per cent of the population and similar to the number of people that have dementia. Autism is neither a learning disability nor a mental health problem, although mental health problems can be more common among people with autism, estimates suggest that one in three of adults with a learning disability also have autism.

If you are autistic, you are autistic for life, autism is not an 'illness' and cannot be 'cured'. Often people feel being autistic as a fundamental aspect of their identity. Autism is a developmental disability and affects the way a person communicates with, and relates to, other people and how they experience and make sense of the world around them. It covers a wide spectrum of different needs – making it essential that everyone is considered and treated as an individual.iii

The exact cause of autism is still being investigated. However, research suggests that a combination of factors – genetic and environmental – may account for differences in development. At present, there is no 'cure', however, there is a range of interventions to enable learning and development.

Autistic people see, hear and feel the world in a different way from other people. Everyday life for many people with autism can be confusing, frightening and lack meaning. People with autism can often find understanding and communicating with others particularly difficult, which can leave them feeling isolated, they may also experience some form of hypersensitivity or lack of sensitivity, for example to sound, touch, taste, smell, lights or colours.

People with Asperger syndrome, a form of autism, are of average or above average intelligence and have fewer problems with speech but may still have difficulties with understanding and processing language. Indeed, they can have different 'degrees' of learning disability, from being able to live fairly independently to requiring lifelong, specialist support. However, all people with autism learn and develop. With the right sort of support, all autistic people can be helped to live a more fulfilling life of their own choosing

Statistics show that more men and boys than women and girls have a diagnosis of autism. Various studies, together with anecdotal evidence suggest male to female ratios range from 2:1 to 16:1. While these statistics may suggest women and girls are less likely to develop autism, there is also a school of thought that 'higher-functioning' women and girls with autism have been underdiagnosed, compared to men and boys, on the basis that they may be better at masking their difficulties in order to fit in with their peers and have a more even profile of social skills in general. What is important is that all autistic people can benefit from a timely diagnosis and access to appropriate services and support.

The policy environment which support the statutory services for autism has improved measurably in the last seven years. In 2009, a National Audit Office (NAO) report, Supporting people with autism through adulthood made a range of recommendations aimed at achieving better outcomes for people with autism. Also in 2009, the National Autistic Society spearheaded a campaign to get the Government to recognise and support autistic people through an Autism Act in England. The Autism Act 2009 was the first ever disability-specific law in England and put a duty on the Government to produce a strategy for adults with autism. It also put a duty on the Government to produce statutory guidance for local councils and local health bodies on implementing the adult autism strategy by the end of 2010.

The Committee of Public Accounts report, in October 2009, recommended that the Government should incorporate the NAO's recommendations in its adult autism strategy Fulfilling and rewarding lives, was launched in March 2010, aimed at improving the lives of adults with autism. A subsequent NAO memorandum published in 2012 found that considerable progress had been made in the first two years of the strategy with 24 of the 56 commitments having been implemented. However, less progress had been made in some areas, such as improving access to social care assessments, personal budgets and diagnostic services, which are needed if adults with autism are to have to access services and support.iv

In 2013, the Government asked for feedback from adults with autism, parents, carers and professionals about how well the 2010 strategy had been implemented. Subsequently, a new strategy, Think Autismv, which sets out a programme of action the Department of Health and other government departments need to take to improve the lives of autistic people was published in April 2014. This builds on rather than replaces the 2010 Strategy. The Government also allocated £4.5 million towards the Autism Innovation Fund and the autism aware communities' programme.

Yet despite the strong government support, many of the public still lack awareness. Autistic people often do not 'look' disabled. Parents of autistic children often say that other people simply think their child is naughty, while adults find that they are often misunderstood and made fun of. This is why increasing awareness dramas like 'The A Word' and events associated with World Autism Week are so important.

I trust that in future that by being made more aware of autism, we will be better informed about the different forms and behaviours. Perhaps it might also galvanise us to support the World Autism week or even participate in one of the many events that are being organised, details of which can be found on the National Autism Society 



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