I have been asked to be an advisor to a new university and college network which is still in formation. The network is called "Equality, Diversity and Inclusion in Music Studies". They want me to consult on neurodivergence and disability, which I am happy to do. We had a preliminary discussion last week. I thought it would be interesting to share the notes I sent them after the discussion...
1. Neurodiversity vs. Neurodivergent
Neurodiversity acknowledges the range of brain types and functions and is a normal aspect of human variation. Like biodiversity, having a diverse range of neurotypes is seen as a good thing generally. The term neurodiversity was adopted by the autism community in the 1990s as a way of resisting the dominant medicalised view of their condition. By saying that autism is simply an example of neurodiversity, rather than a "disorder" or an "illness", they hope to overturn prejudice and advance a social model of disability.
Neurodivergent, on the other hand, refers to the brain difference itself. Here there is a clear distinction between neurotypical people, whose brains are 'wired' in a similar way, and neurodivergent people, whose brains are 'wired' differently. In the diagram below, neurotypical people show neurodiversity within the range of neurotypicality, but an autistic person is neurodivergent - in other words, outside that group.
Autism is real and the differences are profound. Probably the worst thing you can say to an autistic person is "we're all a little bit autistic". This denies their identity and undermines the real differences in neurodivergence. The category of "neurodivergent" also includes other conditions such as ADHD, dyslexia, and so on.
2. Person-first language vs. identity-first language
A substantial majority of autistic people prefer identity-first language, i.e. "autistic person" rather than "person with autism". See the survey of over 11,000 autistic people at https://autisticnotweird.com/2018survey/ However, the neurotypical world persists in using "person with autism" (see, for example, the BBC) and worse, correcting autistic people who use IFL. The IFL argument is that autism is a fundamental part of a person's identity from birth and in no way comparable to an illness. As a general rule it is best to ask people which form of address they prefer. When in doubt, use IFL for autistic people.
This is a hot debate in neurodivergent circles. To what extent is autism a disability? There is no doubt that it can be disabling, but the more obviously disabling aspects are usually the result of co-morbidities such as learning difficulties or delayed speech development, that are not common to all autistic people. So, the argument goes that autism itself is not a disability, but rather that society makes it so. In this 'social model' there is a difference between the disability of, for example, a person who uses a wheelchair, and an autistic person. However, not everybody agrees with this distinction and it is true to say that it is contested.
Dr Luke Beardon's formula: AUTISM + ENVIRONMENT = OUTCOME. This should be repeated again and again. Most adjustments that need to be made for autistic people are environmental. In fact, most of them are quite small and simple to achieve. However autistic people are often unable to articulate what the problem might be in a given environment, so this is something that needs to be worked on over time.
5. Check out...
Two very different videos.
First, Dr Jac den Houting of Macquarie University on "why everything you know about autism is wrong". https://www.youtube.com/watch?v=A1AUdaH-EPM&t=3s
Highly articulate and brilliantly presented.
Second, the late great Mel Baggs 'In My Language'. https://www.youtube.com/watch?v=JnylM1hI2jc
In some ways the opposite of Jac den Houting. Non-verbal. Amateur. Poorly filmed. And yet, this is one of the most powerful statements about autism I've seen and will be especially interesting to musical people since it treats sound highly artistically.