Mind the gap: What is missing in the autism research agenda?

Jim Simpson, an autistic author and activist in the US, tells a story of meeting a child with autism. The child was amazed to meet Jim. Having never heard of an adult who had autism, he had assumed that autistic children died before they grew up. This is a shocking anecdote that should give us pause for thought; because autistic children do grow into autistic adults. They develop, they change, they learn strategies to overcome some barriers, are faced with others; in short, they enter the complex adult world in which expectations are high and formal support is – especially right now – critically under-funded. Autistic humans, like non-autistic humans, typically spend a much higher proportion of their lives as adults than they do as children, but you would be forgiven for overlooking that fact based on the current research landscape.

A study of autism research within the UK noted that we lack a systematic process for co-ordinating the research that is commissioned. This means that research priorities are not decided strategically. Our ad-hoc approach has led to a bias towards biological research over research with a more practical focus, such as which interventions work and why, what support families need and the efficacy of support services generally.  

It has also led to what can only be described as a neglect of research into autistic adults. Within the UK, less than 30 per cent of research included individuals who were 18-plus and the research that focused exclusively on adults was less than 15 per cent. For the long term good of our autistic infants, these figures simply don’t add up. There is an enormous gap here in our knowledge and understanding of what happens to our autistic children as they grow up and move into the adult world. From the little research that is available, we do know that within the disabled population, autistic adults tend to suffer comparatively higher rates of social exclusion, unemployment and mental health issues, and are therefore among the most disadvantaged of an already disadvantaged group.

In the study mentioned above, the authors consulted with all stakeholders, including autistic individuals, family members, practitioners and researchers. All four groups agreed that a priority for research should be to gain a better understanding of how autistic people ‘think, learn and interpret the world around them’.

Outside the research world, we do have some data that helps us with this. It is nearly 30 years since the publication of the first autobiographical accounts from people diagnosed with autism and there is now a wealth of literature, in print and online, articulating the autistic experience.  Accounts from high-achieving autistic adults often describe childhoods featuring developmental delay, detachment from the social world and difficult behaviours more generally associated with the category ‘low-functioning.’ For example, Dr Wendy Lawson, successful autistic author and researcher, describes her early years:

Dr Wendy Lawson "As a small child, I was initially diagnosed with intellectual disability. I didn’t talk until I was four years old; I was obsessive, ritualistic and prone to tantrums. Had I been given an assessment then, I would have qualified for a diagnosis of classic autism. I’m writing this here because I know from personal and professional experience that the characteristics of ASD change over time."

These first-person insights teach us that the autism spectrum is complex and fluid; the adult potential of a child who appears severely autistic cannot be predicted by the behaviour we observe. This is an important learning point, and one which only an autistic adult can teach.  

Regarding autistic people as key stakeholders in the research agenda is, therefore, about more than inclusion, equality and ‘best practice’. It is about acknowledging that the research community’s understanding of the autism spectrum is imperfect and incomplete, because of the essential difference between the autistic and non-autistic experience. 

Bringing together an autism research agenda that focuses proportionately upon research into adults, and employing research approaches that seek to obtain ‘insider’ perspectives from a range of stakeholders, can only enrich the research landscape, and most importantly, the life opportunities for autistic children as they grow into adults.

Andrea MacLeod, Dr Karen Guldberg, Dr Lila Kossyvaki, Dr Despina Papoudi, Dr Kerstin Wittemeyer, Autism Centre for Education and Research (ACER)