James Cusack outlines some of the latest developments in autism research
Like all of us, autistic people are unique. Despite being one diagnosis, autism is not simply one thing but a spectrum of differences which mean each person has different strengths and challenges. Understanding these differences is key to ensuring that autistic people can thrive in life. That’s what research aims to achieve, but it requires a combination of approaches in order to make a difference to every autistic person.
Biology and development
Autism has a large genetic basis. That means that autism can be explained by biological differences driven by our genes. Researchers are now working to understand which genes drive the differences we see in autism. So far, we know that this is more complex in autism and there are already hundreds of genes which are connected to autism. There are cases where the differences we see in autism can be caused by one gene (known as a monogenic condition), but most commonly a person is likely to be diagnosed with autism when a combination (possibly hundreds) of genes act together to generate differences that mean a person meets the threshold for a diagnosis of autism. The fact that there are hundreds of genes implicated in autism explains why autistic people are so different from one another. Genetics and brain imaging research may eventually help us to understand how we can deliver personalised support for autistic people.
Biological research may also reconceptualise how we think about autism and other conditions. It can explain why autism is rarely diagnosed on its own. We know that most autistic people tend to have a co-occurring condition like ADHD, anxiety or epilepsy. Increasingly, through research, we are understanding why this overlap exists and it may in fact reshape how we diagnose these conditions and ensure that any support a person receives is more focussed around their strengths and difficulties.
Understanding real-world issues
In the real-world, it is more important than ever to understand the different needs of autistic people. In 2016, Autistica asked over 1,000 autistic people, relatives and carers for their top research questions. Understanding sensory processing and how to make environments better for autistic
people were two of their top ten concerns. Sensory processing differences can create stress in certain environments and they can stop autistic people going places or doing things they want to do. There is a lot of talk about creating autism-friendly environments at the moment but not a lot of evidence. We also know that every autistic person is different and, for that reason, we need to know which environments work for every autistic person.
To resolve these issues, Autistica is using citizen science – creating an online platform where autistic people, family members and carers can share how sensory processing affects their daily life. The hope is that by collecting large amounts of data we will learn about the types of different experiences that autistic people find challenging.
Many autistic people feel that research happens without them. This project aims to empower autistic people as co-creators. Autistic people will be involved at every stage and will act as authors in the final research papers.
The research team will work with organisations and policy makers to improve the challenging environments identified in the project. This will change environments to suit autistic people’s needs and preferences and educate those who know little about autism. In the end, the aim is to make schools, workplaces and leisure facilities more accessible for autistic people, and educate the public about their needs.
Employment that works for autistic people
For more than 20 years, there has been a lot of talk about the potential of autistic people in the workplace. Yet, in that time we’ve barely moved the needle on employment figures for autistic people – who continue to be denied opportunities to work despite the fact that the overwhelming majority of people would like the opportunity to do so. To move past this issue, we need evidence that tells us how to give autistic people access to meaningful employment or activities. Discover Autism Research and Employment (DARE) was set up to gather that much needed evidence base. By creating this evidence we have the best chance of ensuring that more autistic people can gain access to meaningful employment (currently only 16 per cent of autistic adults are in full-time employment).
Thanks to this research we now know that 87 per cent of autistic adults would benefit from adjustments being made, but over half of autistic people felt unable to request these adjustments. Only two per cent of employees reported being approached by their employer about the need for any reasonable adjustment.
Information was also collected on the types of adjustments that autistic people would like. The types of adjustment that autistic people requested fell in to three classes: management and job role (for example, more explicit instructions), physical environment and equipment (for example, noise-cancelling headphones) and social and cultural practice (for example, training staff on neurodiversity and specific needs).
From biological research through to real-world research, it is clear that autistic people all bring unique strengths and challenges. Research can help us build a world in which it is possible for all autistic people to live a long, healthy and happy life. To do this we must ensure that research serves everyone and that we respect and listen to the different needs and view that autistic people and their family have.
About the author
Dr James Cusack is Director of Science for UK autism research charity Autistica.