Member Organisations
RESEARCH INTO AUTISM

Every field of autism research has its importance – in understanding how autism affects brain development, in developing new interventions, in understanding how many people are affected, in finding out how people’s brains work differently and therefore how we should tailor our support.

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:

  • Genetics
  • Brain structure
  • Early development
  • Causes
  • Number of people affected
  • Cognitive research

The challenges of research

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.

What do people want out of research?

Depending on who you ask, different people want different things out of autism research.

 

In two recent surveys, people were asked what topics they felt were most important for research.

One survey found that family members, practitioners and researchers had very similar research priorities:

  • What are the best ways to improve the life skills of autistic people?
  • How can public services best meet the needs of autistic people?
  • How do autistic people think and learn?

 

Autistic adults had similar priorities:

  • How can public services best meet the needs of autistic people?
  • What are the best ways to improve the life skills of autistic people?
  • What does the future hold for autistic adults?

 

Another study focusing more on medical research found that autistic adults felt research was most important in the following areas:

  • Earlier diagnosis
  • Improvements in adult diagnosis
  • Adult intervention

 

Parents felt that the following areas were most important:

  • Earlier interventions
  • Difficulties which go with autism
  • Causes of autism

It is clear that here autistic adults and parents differed in what they felt was important. It highlights the need for researchers and funding bodies to listen to all affected parties to ensure that the research answers the needs of all those affected.

Interested in joining the Autism Alliance?