As part of the autism acceptance month, I was invited to make a short presentation at the CLR James Library in Dalston, Hackney. Below are the preparatory notes I wrote for this short introduction to autism.
Being autistic is a different way to be human. An atypical way of experiencing and relating to the world. A different way to think and process information.
Being autistic is developmental, it is lifelong. It is not a mental illness though autistic people may have mental health issues such as anxiety and depression often brought on from the frustration of not being accepted.
'Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.' (Don't mourn for us; Jim Sinclair - 1993)
Autistics have spiky profiles, an unusual combination of abilities and challenges. Autistics can find some tasks easy and others difficult, and this may change depending not just on the task, but also on the environment, and recent experiences. You can imagine autistics as forming constellations (like stars).
Each autistic individual is different and will have different needs. Autistics are diverse in their autistic traits and their severity. Some have an unusually large vocabulary while others are non verbal. Some autistics work and have a family (but may still find it difficult to cope) while others need full-time support.
'Once you've met an autistic person, you've met one autistic person' (Lorna Wing)
Don’t believe the stereotypes.
Some autistics have deep empathy (even if expressing it can be difficult). Some are both trusting and trustworthy (white lies can be as abhorrent as any other lie). Some are conscientious and will persevere in difficult situations. Some are artistics. Some are experts. Some even have a sense of humour!
Some contribute to this society and many more would if we were better accepted.
People being unpredictable, social relationships may be hard. Autistics tend to lack an intuitive sense of what is appropriate to say and do in a social setting. Reading faces may not be intuitive either. Operating in groups or integrating a new group can be difficult as one has to figure out when to take turn in a conversation, accept some of it may be factually incorrect or boring, etc. It is also common for an autistic to have one or a few topics of special interest and be keen for most conversations to focus on these.
Sensory and information overload (which can result in pain), anxiety, difficulties communicating, etc. can cause great frustration leading to atypical behaviours, meltdows and shutdowns.
Processing the information coming in from the many senses all at once can be overwhelming. Also it is common for autistics to be over (hyper) and/or under (hypo) sensitive to some of their senses; and there are more than five, e.g., sight, hearing, taste, smell, touch, temperature, pain, kinaesthetic sense (proprioception), balance, etc.
So many senses are involved with food that eating and digesting often strongly affects autistics.
Autistics often tend to experience emotions more strongly, but may also appear not to have much emotional reaction or have difficulty moderating these emotions leading to outbursts.
Autistics might need to focus on listening, and therefore will avoid eye contact, which is often difficult and sometimes even painful, when concentrating.
Autistics might find subtle social conventions difficult, such as when people rely on implied conventions or do not say what they mean.
Autistics might be non-verbal and use Augmentative and Alternative Communication.
Autistics might find it difficult to deal with unpredictability, spontaneity and change, and require extensive planning and advance knowledge.
Also having to deal with many things at the same time may not be possible.
Stimming, calming repetitive movements or sounds that self-stimulate, and reducing stimuli helps with living. Autistic spaces where the environment and interactions are adapted to most autistic needs can be very calming places (however what is autism friendly for one autistic may be unhelpful to another). Meltdowns and/or shutdowns often happen when it is no longer possible to deal with the pain and/or stress being experienced.
As autism is an integral all-pervasive part of who autistics are – the way their brains and bodies work – many autistics are keen on the use of identity-first language and refer to themselves as 'autistics'.
Being called 'a person with autism' can be offensive as it implies that autistics should strive for a state when they are 'without autism'.
The medical model finds autism to be a professionally diagnosed condition (or even a disorder) that must ideally be cured and require interventions. A person is disabled and doctors offer to fix that person, to treat or cure the disability. Autism is defined as a neuro developmental disability characterised by impairments (DSM 5 / ICD 10):
Autism is legally recognised as a disability:
The social model considers that society must work to eliminate discrimination and accept us as we are in all our diversity. If someone has difficulties fitting in due to some impairments and/or differences, what is disabling is society not being inclusive. The aim is to remove all barriers, not just the physical ones, limiting life choices.
The world is made up of neurodiverse individuals: people with a variety of brains and minds, most are neurotypical and some are neurodivergent including autistics and everyone else whose brain is not typical (e.g., epileptic, dyslexic, etc.). Being neurodivergent is not intrinsically positive or negative.
The social model celebrates a neurodiverse world in which autistics (and others) are fully accepted with all their differences. It focuses on the positives, e.g., attention to details, factual, etc.
Everyone's identity should be respected. Autistic behaviours, which are likely atypical but not anti-social, should be respected and accommodated for. E.g., some care should be shown for autistic sensory needs and executive function difficulties, especially during interactions.
Challenge stigma and discrimination: 'As part of human diversity, autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception. [...] Autistic persons should be respected, accepted and valued in our societies, and this can only be achieved by respecting, protecting and fulfilling their basic rights and freedoms.' (Discrimination against autistic persons, the rule rather than the exception; UN rights experts - 2015)
Society must show equality, respect and full inclusion of neurodivergents.
Some related posts:
First published on 2016-04-15; last updated on 2016-07-05.