What is autism?

Autism is a spectrum disorder that affects different areas of perception and experience. Core features of autism are reflected in social interaction and communication, in circumscribed interests and repetitive behaviours, as well as in sensory perception.

 

Autistic traits have a strong genetic basis and are brought about by differences in brain development. On a worldwide average, 1 in 100 people is autistic. Autism assessment can happen at different stages of life – some people receive their diagnosis in early childhood, while others only find out they are autistic in late adulthood.

 

Typical signs and symptoms of autism are:

- delayed speech development

- delayed motor development or clumsiness

- difficulties understanding irony or metaphors

- difficulties interpreting other’s emotions and thoughts

- rituals or repetitive behaviours

- feeling uncomfortable with changes to routine

- hyper- or hypo-sensitivity to sound, touch, taste, smell or light 

 

Autistic traits can also bring about strengths, such as a detail-oriented work style. Every autistic person brings with them their own individual pattern of autistic features. This also means that autistic people differ in the amount and type of support they need.

 

 

 

You can find more information on autism on these pages (in German):
www.aspies.de
www.autismus.de
www.autismus-kultur.de

What is participatory autism research?

The quality of autism research should be assessed on the basis of its benefit for autistic people and their families. Research findings should not only be theoretically significant, they should also be of practical relevance to life with autism. 

 

The best way to reach this goal is to systematically involve autistic people, their families, and professionals who shape the everyday life of autistic people in all stages of research. For example, only if we consider individuals’ experiences of what it means to be “autistic”, as well as parental knowledge on the individual development of their autistic child(ren), we can really gain a better understanding of autism. To establish actual collaborations, it is necessary to develop environments, structures, and institutions that make it possible for people to participate.

Some examples of these are listed here:

  • In the association Autistica in the UK, autistic and non-autistic people decide on future research projects together.
  • The Centre for Research in Autism and Education at University College London has carried out participatory projects for several years. In 2013 they issued a report on the current landscape of autism research in the UK, comparing it to the needs and priorities of autistic people and their families. Recently they issued a starter pack for doing participatory research. 
  • In Germany, the Autismus-Forschungs-Kooperation (AFK) was founded more than 10 years ago. The AFK is an association of autistic people and (autistic and non-autistic) researchers at the Humboldt University of Berlin. It designs and carries out research focused on improving the everyday life of autistic people.
  • At the Max Planck Institute of Psychiatry in Munich the outpatient clinic and day clinic for disorders of social interaction regularly organise discussion meetings for patients focusing on autism research (find out about the next upcoming date here). 

By including all stakeholders – autistic people, their families, as well as e.g. psychologists, physicians, educators – we can generate the best possible conditions for developing autism research that is theoretically meaningful and practically relevant for autistic people and their surroundings. 

 

 

 

 

Last modified: 21/11/2018