Det er ikke kun inden for logopædien, at der er røre og nyheder i terminologien (læs evt. indlægget om DLD). Også autismeverdenen oplever, at den ‘gamle’ terminologi udsættes for forsøg på nytænkning. Termen neurodiversitet er et godt eksempel på netop det.
Simon Baron-Cohen (ham med bl.a. ‘the autism quotient‘) har skrevet en meget interessant artikel i Journal of child psychology and psychiatry. I artiklen spørger han bl.a.: “Should we continue to refer to autism as a ‘disease’ or ‘disorder’, or is the framework of ‘neurodiversity’ a more humane and accurate lens through which to view people with autism?”
Som argument for at tænke autisme mere som en neurodiversitet end som en sygdom eller forstyrrelse skriver han: “Evidence at the genetic, neural, behavioural and cognitive levels reveals people with autism show both differences, and signs of disability, but not disorder. Disability requires societal support, acceptance of difference and diversity, and societal “reasonable adjustment”, whilst disorder is usually taken to require cure or treatment.”
Baron-Cohen skriver om autisme, at det er kendetegnet ved en kæmpe heterogenitet gående fra individer med intet funktionelt sprog og store udviklingsforsinkelser til individer uden sproglige vanskeligheder og med normal eller god begavelse. Så man skulle jo synes, at det er svært at finde fællestræk? Hvad autister har til fælles – i modsætning til alders- og begavelsesmatchede individer uden autisme – er
- social communication difficulties
- difficulties with cognitive empathy or theory of mind
- difficulties adjusting to unexpected change
- a love of repetition or ‘need for sameness’
- unusually narrow interests
- sensory hyper- and hyposensitivities.
“Autism is also associated with cognitive strengths, notably in domains such as excellent attention to detail, excellent memory for detail and a strong drive to detect patterns (or ‘systemising’) (…).” Læs evt. indlægget om neurodivergente narhvaler.
Han har et ret fint citat fra en autist: “We are fresh water fish in salt water. Put us in fresh water and we are fine. Put us in salt water and we struggle to survive”.
Artiklen slutter med et forslag til terminologibrug:
- “‘Disorder’ should be used when there is nothing positive about the condition, or when despite trying different environmental modifications, the person is still unable to function.
- ‘Disease’ should be used when the biomedical mechanistic cause of a disorder becomes known, perhaps through medical testing or through scientific research.
- ‘Disability’ should be used when the person falls below an average level of functioning in one or more psychological or physical functions, and where the individual needs support or intervention.
- ‘Difference’ should be used when the person is simply atypical, for biological reasons, relative to a population norm, but where this difference does not necessarily affect functioning or well-being.
Using these definitions, we should remain open-minded that some forms of autism are properly thought of a disorder, and others not, given the heterogeneity that exists within this diagnostic category.”
Baron-Cohens forslag til terminologi passer ikke helt med tankerne inden for logopædien, synes jeg. For jeg håber da bestemt, at de mange børn, der i fremtiden vil få en DLD-diagnose (udviklingsmæssig sprogforstyrrelse) snarere har det, som han kalder en disability – med behov for støtte eller intervention – end en disorder – hvor individdet ikke ‘fungerer’, selvom man forsøger sig med ændringer i vedkommendes omgivelser.
Baron-Cohen S (2017): Editorial Perspective: Neurodiversity – a revolutionary concept for autism and psychiatry; Journal of Child Psychology and Psychiatry 58:6 (1469-7610)