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.
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:
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