By Susan Dunne
Saturday 2 April was World Autism Awareness Day and we are now into the second ever World Autism Awareness Week.
During the week we can expect to see buildings lit up, Onesie Wednesdays (where people dress in onesies in aid of the National Autistic Society and to raise awareness) and sales of multi-coloured cakes to reflect the autism spectrum. There will be night walks for autism in London, bare foot fire walks in Leeds, fund raising activities and awareness events.
But underneath the balloons, the razzmatazz and the Micky Mouse onesies at work, what really are the issues facing people with autism? What actually do we need to be aware of and how can an awareness raising week lead to improved social care?
Often misunderstood
Autism is a complex condition covering a broad spectrum of abilities and challenges. Affecting an estimated 1 in 100 people, it is often misunderstood, falling between the two stools of learning disability and mental health, although confusingly, those with autism can be affected by both.
The Autism Act 2009 was a recognition that autism, in particular for adults, had received scant attention and poor services compared with those with other conditions. This legislation and the subsequent strategies that came out of it (Fulfilling and Rewarding Lives in 2010 and Think Autism in 2014) have gone some way towards helping address this imbalance.
But whilst much has been achieved in the past seven years there is still a long way to go. Below is a list of some of the urgent priorities facing people with autism which carers and health professionals working with people on the autism spectrum need to be aware of.
Improved healthcare
A recent shocking report from leading research charity, Autistica (Personal Tragedies, Public Crisis) revealed that people with autism have significantly higher levels of early mortality compared with the general population. This is particularly so for those with learning disabilities and epilepsy who were found to be up to 40 times more likely to die prematurely – many before their 40th birthday. The tragic death of autistic teenager Connor Sparrowhawk, who drowned during an epileptic seizure whilst in an NHS care unit, has drawn attention to poorer levels of care for people with learning disabilities but the scale of the link between autism, epilepsy and premature mortality is only just beginning to be realised.
More autism friendly places
There has been a steady increase in the number of institutions, services, shops and entertainment venues which recognise the need for more autism friendly spaces. In the past year we have seen the first autism friendly prison in the UK (HMP Felton) but there is still a long way to go to make every day locations accessible to those on the spectrum. Sensory difficulties and an inability to understand and relate to the world are key features of autism and can make the world seem a frightening and isolating place. For some this may lead to avoidance of essential services such as hospitals, increasing the possibility that autistic people may be missing out on getting their needs met and suffering from potential neglect
Better treatment across the lifespan
Little is known about autism in old age and a narrow diagnostic criteria which has focused on children with learning difficulties means that as people with autism age and become dependent on social care there may be little recognition of the specific needs of caring for older people. An awareness of how sensory input and social difficulties affect people on the spectrum could make a significant difference to how they are treated and in gaining more effective outcomes.
Improved autism diagnosis waiting times
National Institute for Health and Care Excellence (NICE) guidelines recommend that a referral for an autism assessment should be no more than three months after initial concerns are made. NAS figures reveal that the average waiting time is three and a half years for children and two years for adults after initial concerns are raised. For some the wait can literally run in to decades, preventing people from getting appropriate support. This can have a critical impact on a child’s school progress and on the mental well-being of the individual concerned.
Poor mental health and autism
The National Autistic Society (NAS) describes post-diagnostic support for adults as patchy and subject to regional variation. Lack of support for adults on the spectrum in particular means that many may experience additional mental health problems. Research suggests that up to 70% of autistic adults have at least one mental health problem, with 40% having more than one.
Dr Sarah Cassidy of Coventry University, who has studied suicidality in this group, said: “Three recent high quality studies have uncovered shockingly high rates of suicidal thoughts, behaviour and completed suicide in autistic adults. Our recent research showed that 66% of autistic adults had contemplated suicide in their lifetime. This was significantly higher than patients with psychoses, a high risk group in which suicide has been extensively covered.” (Personal Tragedies, Public Crisis, Autistica 2016).
Mate Crime
A study conducted by Wirral Autistic Society (now Autism Together) in 2015 found that 80% of respondents over the age of 16 reported being victims of mate crime – a figure significantly higher than that found by the NAS in 2014. The most vulnerable group was those aged 16-25 and abuse ranged from verbal to financial and sexual. As a condition which impacts on social communication, people with autism are particularly susceptible to abuse from so-called friends, as they are often unable to decipher the difference between stated intent and actual intent. Parents, carers and individuals reported that they did not know where to turn for support to combat this kind of crime.
Better employment opportunities
Just 15% of people with autism are in full time work but 79% on employment benefits say they would like to work, according to NAS figures. For those who are able, employment offers a route to independence, self-esteem and meaningful activity. Whilst some companies have recognised that autism can confer strengths which can be highly valuable in the workplace (attention to detail, focus and conscientiousness being just a few) and have made adjustments, many autistic people struggle with sensory and social overload in the workplace. Employers who are willing to make a few simple changes and concessions for people on the spectrum can create a win/win situation.
Lasting change
These are just some of the issues affecting autistic people on a daily basis. By raising awareness of these in World Autism Awareness Week and putting them firmly on the agenda of people who work with and for people with autism, let’s hope the impact extends beyond just this one week in April to make lasting and long-term changes.
Susan Dunne has Asperger syndrome and is the author of “A Pony in the Bedroom” about life with undiagnosed autism. She writes and talks widely on the subject and works with adults on the Spectrum.
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More talk no action, all the money spent on raising awareness, campaigning, awards, speeches blah blah, still most local authorities do absolutely nothing, didly squat, zilch as outlined in the Autism Act.
I agree Paul. Having experienced Mate Crime NOTHING WAS DONE by the Police. The perpetrators didn’t even get a telling off. Disgusting. My son was dragged about by his ankles, had his clothes torn and his glasses broken by a group of so-called teenage “friends”. I fear for him as he grows j to adulthood.
What seems most remarkable to me, because I encounter the issue so often in the work I do, is how few Child protection social workers have any understanding of Autism and its implications for families. I have come across parents with ASD being assessed using PAMS – which is a tool for learning disability – and when these assessments are presented in court, the parents lose their children as a result of their apparent failures in empathy, emotional warmth and suchlike; I have seen situations where parents and children who both suffer from ASD receive ‘support’ from entirely unqualified support staff and social workers – who have never attended an Autism awareness course and who have no understanding of the condition, and who torment rather than support, until likewise, the children are removed; I have seen whole families destroyed because behavioural issues that are finally diagnosed as ASD, are written up as attachment disorder, and by the time a diagnosis is completed, siblings have been adopted. But in autism awareness week, there is o mention of any of this!! Nor any outrage that the Autism Act does not protect families or children, only adults!!
As a professional I frequently find that children and young people with autism referred following report to the police of a sexual crime, fall into the difficulty of not being considered as a ‘reliable witness’. Often their autism is completely overlooked and by the time they enter my service the damage is already done. In assessing clients I am constantly shocked but not surprised by the complete lack of services that often will have created the vulnerability that provides the conditions for sexual predators to take advantage. I know we are in the midst of an awareness campaign but I worry that we still rely on shocking examples of failure in care to make a dent in our awareness.