“Every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence” - On World Autism Awareness Day 2020 (Hope-bearer 3)

Today is World Autism Awareness Day! This is a day when autistic people and non-autistic people alike seek to raise awareness abut autism, often in innovative ways - ways which seek to challenge prevailing views of autism as something tragic, or as beset with hardships. 

Today, during the current coronavirus situation, such public displays aren't possible. What I'm going to do with this posting is to say some things about what it is to be autistic. In it, I shall draw from key people who are playing a role in helping challenge, and change, perceptions about autism. 

The previous main posting on this blog looked at how autism is seen as beset with hardships. When someone is diagnosed as autistic, the response can be along the lines of : 'what a tragedy.' I followed this posting up with a response from one of the readers, Dani. I quoted, with Dani's permission, what she is currently experiencing, which chimes depressingly with what autistic people and those close to them have long been experiencing.

Being autistic can involve hardships, but that needn't be because of something inherent in autism. The hardships can come from the outside - from those for example who see autism as something in need of a treatment, or even a cure.  

As the autism activitist Jim Sinclair says in the 1993 address I quoted from in the previous posting, parents often experience grief when their child is diagnosed as autistic. But, as Sinclair also says: “Don’t mourn for us.” His address, to non-autistic people, asks for autism not to be regarded as something to be treated or cured. Rather, Jim Sinclair says, a person cannot be divested of autism:

Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism…Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence…It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with (emphasis in original?).[1]

Temple Grandin

A number of autistic people have expressed what it to be autistic in terms of inhabiting a world. Autism is a World is the title about Sue Rubin’s film for instance - the film I likewise mentioned in the previous posting. Autism can be difficult to understand by those who are not autistic – and the difficulty works the other way around as well. 

For autistic people, the ‘non-autistic’ or ‘neurotypical’ world can seem like an alien place – with rules and customs that it can takes an effort to understand. An autistic person might feel, like Temple Grandin, “an anthropologist on Mars,”[2] or, like Alis Rowe as an “observer” of a world that one can “study…but never be…part of.”[3] 

Alis Rowe

As Jim Sinclair put it indeed:

Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings.

There is Hope – a Hope for discovery and tolerance and understanding – for the possibility of fantastic journeys. To quote Jim Sinclair further:

Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.[4]

And to quote Sue Rubin: 

No matter how much social interaction one has, one will never be free of autism. The tendencies to be and act in certain ways may subside but I will always be autistic.” [5] 

Building on what Jim Sinclair writes, there is Hope! This is a Hope for discovery and for tolerance. This Hope works both ways. On the one hand, this Hope concerns a non-autistic person seeking to reach the world of an autistic person. Secondly, it concerns developing further ways for autistic people to engage with others: non-autistic other and also their autistic peers. 

But while there is a distinctive autistic way of being and of experience, a ‘world’ even, each world is distinctive. As the quotation - which might be traceable to the autism advocate Stephen Shore - goes: 

If you’ve met one person with autism, you’ve met one person with autism.[6]

And as Stuart Powell and Rita Jordan stress, in their advice for professionals working with autistic people, it is crucial to keep the focus on the individual person, and to retain a sense of how each person learns differently from anyone else: there cannot ever be a recipe which sets out how autistic education should be done. As a result, they stress, it is vital that practitioners should keep reflecting on their practice and the principles that underpin it, and it is crucial too they should reflect too both on their successes and failures as practitioners. They also stress something that might be especially challenging for a non-autistic person, namely that, while each person learns differently, there is, all the same, a distinctly autistic way of learning. 

As Jordan and Powell also say, this can be hard to grasp by those who do not share autistic ways of learning – I like putting it this way round, as it marks out a non-autistic person as the one who is deficient, rather than an autistic person.

Jordan and Powell emphasise that autism education should keep a focus not just on what autistic learners lack, but on autistic strengths and abilities. They stress that it is vital to set high expectations for each learner, while providing plenty of support as well. As they set out, one challenge is around enabling autistic people to pick up what others are able to do instinctively. Autistic practice should be supporting distinctively autistic ways of thinking and behaving, while finding ways for autistic people to operate in “the non-autistic world.”[7]

Coming next: “Autistic kids are not supposed to do that”

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[1] Jim Sinclair, “Don’t Mourn for Us,” Autism Network International (ANI) website: http://www.autreat.com/dont_mourn.html   (accessed July 21, 2019; originally published in Our Voice 1.3, 1993).

[2] See e.g. Oliver Sacks, An Anthropologist on Mars, London: Picador, 1995; Steve Silberman, Neurotribes: The Legacy of Autism and How to Think Smarter about People Who Think Differently, London: Allen and Unwin, 2015, 424-432; Temple Grandin and Richard Panek, The Autistic Brain: Thinking Across the Spectrum, Boston–New York: Houghton Mifflin Harcourt, 2013; Thomas G. West, Seeing What Others Cannot See: The Hidden Advantages of Visual Thinkers and Differently Wired Brains, Amherst: Prometheus, 2017, esp. 69–90.

[3] Rowe, Asperger’s and Me, Op. cit 117 R. Young, quoted in Alis Rowe’s Asperger’s and Me, 89 writes about “Planet Asperger…where everything seems the same as earth, but nothing actually is,” Asperger Syndrome Pocketbook. Hampshire Teachers; Pocketbooks, 8.

[4] Jim Sinclair, “Don’t Mourn for Us,” Autism Network International (ANI) website: http://www.autreat.com/dont_mourn.html   (accessed July 21, 2019; originally published in Our Voice 1.3, 1993).

[5] The State of the Art, “Autism is a World: Synopsis.” http://www.stateart.com/works.php?workId=27 (accessed March 16, 2020).

[6] See e.g. “Understanding Autism,” Autism Empowerment, online at https://www.autismempowerment.org/understanding-autism/  (accessed July 21, 2019).

[7] Stuart Powell and Rita Jordan, “Rationale for the Approach,” in Stuart Powell and Rita Jordan (ed.), Autism and Learning: A Guide to Good Practice, London: Routledge 2012 (first edn 1997), 1-12. The phrase “the non-autistic world” appears on page 1.