One in a hundred people in the UK has autism
It is a lifelong developmental disability that affects how you communicate with and relate to other people, and how you make sense of the world around you. Autism is a highly diverse ‘spectrum condition’, which means that although all autistic people will have difficulties with their social and communication skills, some will be perfectly able to live successful, independent lives, whilst others – particularly those with severe learning disabilities, complex neurological issues or mental health problems – may need a lifetime of support.
Very few autistic people manifest superhuman mathematical, musical or artistic skills
One in four children born with autism will never learn to speak, 79% will have at least one
mental health problem and only 15% will work full-time as adults. Data released in 2016 shows that many will never reach their 40th birthday, with epilepsy and suicide among the major killers. The high care costs of severely autistic people and low rates of employment make autism the most costly disability in the developed world, with the UK alone spending over £32 billion a year. Despite this, only £4m is spent on research – that’s £6.60 a year per affected person.
But there are many reasons to be hopeful
Research is finding new answers to these challenges. Advances in our understanding of autism, new technologies and the latest discoveries in neuroscience mean that we can start to offer autistic people the chance of longer, happier and healthier lives. Research is the key. My charity Autistica is the biggest independent funder of autism research in Europe. We focus on the issues which autistic people and their families tell us matter most to them. Children with autism are most commonly diagnosed around the age of four or five, often years after their parents first raise concerns. Parents regularly cite that moment of diagnosis as a real crisis point; they expect that now they finally have confirmation of their child’s autism, they can access the support they need, but often all that’s offered is a single leaflet. It may be years before a family gets specialist help, meaning that they and their child continue to struggle. That’s why Autistica is funding new trials of family therapies which can be offered on the NHS as soon as a child is diagnosed, intervening early to improve outcomes for the whole family.
Because autism was erroneously seen for decades as a childhood disorder, very little research to date has looked at autism in adulthood or old age. We know far less than we should about how autism changes through life; whether it makes you more or less prone to diseases of ageing like heart disease, dementia or Parkinson’s and how coping strategies and needs may change. There are hundreds of thousands of autistic adults, many of whom are undiagnosed, and we are failing to support them properly. The Autistica Research Centre for Ageing with Autism in Newcastle is investing in new studies and inspiring similar efforts globally.
Most crucially , we focus on mental health in autism, the number one concern for autistic adults and families. Because neurological and psychological problems are so common and can be so lethal in this group, and because they often seem to be biologically different to the same problems in the wider population, we are making huge new funding commitments to understand how to prevent, detect and treat conditions like epilepsy, depression and anxiety.
So, why is this research important?
The ultimate aim for Autistica and the incredible scientists we support is that autistic individuals are given the right support at the right time, so their unique talents can shine.
These talents can be wide-ranging and employers like Microsoft, SAP and HP are already starting to recognise the benefit of employing autistic people. For those who are intellectually gifted, careers in the finance and tech sectors can prove an excellent fit. The unique way the autistic brain works means manipulating large datasets, finding patterns and staying focused on a specific task can be effortless and rewarding for autistic people. For individuals who may have difficulties in such intellectually demanding roles, that same attention to detail and focus can prove valuable to employers looking for staff to perform repetitive jobs that ‘neurotypical’ employees may find tiresome – on a production line for example. Many social enterprises are springing up across the UK where autistic employees are the driving force. We want to see all employers appreciating the advantages of employing autistic people and understanding that with small adaptations tailored to the individual, both company and employee can achieve amazing things.
Autism’s place in the world has turned a corner in recent years
It will take collaboration between science, healthcare, government, the corporate world
and wider society before real changes are seen in the lives of autistic people. For research, this is a golden age of opportunity and we’re hopeful we can make major steps towards giving autistic people the long, healthy, happy lives they deserve. We always need more support so if you or your company would like to get involved, visit www.autistica.org.uk
Jon Spiers completed an MA in Linguistics at St John’s College, Cambridge and worked for Cancer Research UK before becoming the CEO of Autistica.