Expectations
- The term high-functioning is used to describe people who are supposedly at the more intelligent end of the spectrum, more independent, more `normal`, maybe that they have more potential. However, calling somebody high-functioning can put a lot of pressure on them. It implies that they don’t struggle daily with aspects of autism, that yes, they are on the spectrum, but they have a much easier time of it than others – and what is this saying about people who can`t be called high-functioning? (this will be dealt with in the next article.)
- By calling somebody high-functioning the expectations the person has of themselves can be vastly altered. People may find it more difficult to deal with the issues they have because they believe they should not be having such problems. It almost implies that they are closer to being neuro-typical than other autistic people, thus making them demand more of themselves – trying to fit-in instead of being themselves.
- Other people can also have the same expectations: when somebody is viewed as high-functioning others are much less willing to accept some of the more difficult aspects of autism because they believe – wrongly – that autism doesn’t affect `high-functioning` people as much.
Help with services
- Because of the points listed above it can often be more difficult for people with `high-functioning` autism to get services; an example of this is somebody with `high-functioning` autism turning up by themselves for an appointment, conducting themselves eloquently and making a good impression, but the person they were talking to would have no idea of the time, energy and stress that this cost the autistic person before, during and after the event. Somebody with `high- functioning` autism might be able to stand up and talk to a room full of people, but be unable to get the bus by themselves. This can lead to all kinds of problems with the benefits agency, educational support, and service providers.
- The term `high-functioning` can not only distort how a person views their own autism, but how other people – even well-meaning people – view them, and their needs.
Divides the Autism Community
- Unfortunately terms like `high-functioning` can split the autism community in two. People classed as `high-functioning`, or as having Asperger`s Syndrome, may unintentionally appear arrogant, if they try to act as though they are not the same as autistic people. Or they can feel alienated, as if all services are aimed at people with more obvious needs than themselves – in reality autism and Asperger’s and `high` and `low` functioning are just points on a spectrum.
- And whether it is classed as `high` or `low` functioning, autistic people are still autistic.
In conclusion the label `high-functioning`, while it might not be intended as an insult, can cause problems due to its misleading nature; because it implies that the individual has a more mild form of autism it can create unfair levels of expectation, and also cause problems with service providers, and educational support. It may be used and meant in a completely harmless way, but looking at the distortion, and confusion it can cause, it is probably best to avoid the term, and just think of the person as having autism, or as autistic.
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Please note: In our second book we have chosen to use the term `high-functioning` when we are explaining that it is sometimes used in place of Asperger`s Syndrome. I have been thinking more about functioning labels though, which is why I have written these articles, Paddy-Joe