A researcher will usually be interested in one particular field, and in the field have a very specific area of expertise.
The field of autism research has grown enormously over the past 20 years due to growing awareness and number of people affected. It is a very varied field – there are lots of different research questions and topics around autism. Here are just a few:
Funding. Researchers need money to run their projects. This money is limited, especially in the current economic climate. Furthermore, the money available is often assigned to specific areas of research like genetics, or early intervention. However, this can mean that there are gaps in the research. For example, 70% of all funding in autism research goes to work on children. Only 30% is focused on adults, when the majority of the UK autism population is made up of adults. This gap means that we do not know enough about how autism affects adults and how to support them.
Every person with autism is different. This can make the results in research very confusing, because of the variety of people and how they respond to things. Changing the way we group people may help this, but how people are grouped is still an area of debate.
Journals prefer to publish exciting positive results rather than studies where the experiment didn't work. This means that when a new intervention or technique is being researched, the research tends to be overly positive, even if other labs are finding negative results on the same topic. This automatically skews the research, and it can take years for research to balance itself out.
Research takes a long time, and the reality is that people with autism, their parents and carers want answers sooner rather than later. There needs to be more conversation between researchers and stakeholders to ensure that the right research is being undertaken and that until then, stakeholders feel understood and supported.
One survey found that family members, practitioners and researchers had very similar research priorities:
Autistic adults had similar priorities:
Another study focusing more on medical research found that autistic adults felt research was most important in the following areas:
Parents felt that the following areas were most important: