In the decade and a bit that I’ve been
blogging on autism and classical myth a lot has changed from the ‘classical’
side, not least due to the rise in interest in classical reception, including,
how classics is received for and by children. I mentioned this side of things
a couple of postings back. Here I want to switch the focus to developments from
the other ‘side’ – not that there really are sides, hence the inverted commas.
I want to look at how perceptions of autism have moved on over the past decade.
Much of what I’ll look at predates this time, so it’s not that everything I
discuss is very recent – it’s more that voices that were once heard in a limited way are
increasingly being listened to.
The first of the three themes for the Our Mythical Childhood project – under whose
mythical and magical aegis I’m developing myth-themed activities for autistic children
- was Hope (followed by History; and next, starting soon, we’ll
turn to Nature). Hope was the focus
of our conference at Warsaw in 2017. In preparation for this event, I began thinking
about what ‘hope’ might mean in relation to autism, and whether a source of
hope might be something mythological. I'm current revisiting where I stand in relation to autism and hope.
Our title for the conference in 2017 (Our Mythical Hope in Children’s and Young Adults’ Culture... The (In)efficacy of Ancient Myths in Overcoming the Hardships of Life)
pointed to how Hope can help children deal with the “hardships of life.” Hope has often been seen as something especially needed where autistic
children are concerned, because their experiences of the “hardships of life”
might be felt to be especially acute. This sense of autism as involving
hardships is often expressed by those seeking to help autistic children – by parents
for instance and by teachers and therapists. In this regard, the list of an
autistic child is often seen as so painfully difficult, so beset with
hardships, that any hope for them is going to be slender. Jim Sinclair put this really well in
an address from as long ago as 1993. I find it a bit constricting to give
little terms for who people are – ‘the historian such-and-such’ etc. – but I
can see that it’s helpful to do this, though it does pin people down to one
specific field… I’d describe Jim, I suppose, as ‘the autism rights activist.’
In this
1993 address, Jim sets out how, on learning that their child is autistic, parents often respond with
grief - grief at the loss of all their hopes for the child, and regard the only
source of hope to be in a possible cure.
It’s from this address that I
take the ‘Mourn for us’ in the title of this posting. These sentiments bear comparison with those set out in the
introduction to a 2014 film about an autistic young woman (here’s me pinning
down another person… I hope adequately), Sue Rubin. When she was a child, Sue “did
not give her parents much hope. She hit herself. Pulled hair. Bit her own arms
and hands. She could not speak.”
I’m currently reading Ron Suskind’s Life,
Animated where he outlines his quest to be the best parent possible for his
autistic son. Here, too, Ron says a lot about hope: the hopes he had before Owen,
his son’s, diagnosis and the hopes for a future that might accommodate Owen.
Let me finish reading the book – then I’ll reference, and perhaps blog on –
this.
As
phrased in the literature on autism from diagnostic perspectives, for
professionals and parents, autistic children may well find life hard –significantly
harder than other children. They may well find it difficult, for example, to
know what to say or do in social situations, or to respond to the subtle cues
that other children learn more easily. It can be especially hard for an
autistic child to do the kind of things that are, or come to be, innate for
others, for instance how to initiate or maintain a conversation. Autistic
children may find it
harder than their peers to read body language or facial expressions, or any
form of non-verbal conversation. Interpreting things like tone of voice could prove
more difficult too than for other children. Also, developing any rapport with
others could be a challenge, let alone to develop friendships.
Autistic children might find it hard, too, to gauge what others are thinking or
feeling.
There is more. As often described, difficulties
with communication could be
compounded by difficulties over processing information. Autistic children might
find it hard to think beyond the present and they might well find it hard to
understand that the present can turn into the future. They might find it
difficult to understand the “bigger picture” in any given scenario, preferring
instead to focus on particular details. Autistic children also may
well find it hard to deal with changes in routine, preferring instead
set and repetitive patterns of behaviour. Added to this, they could experience
heightened sensory perceptions such an acute reaction to noise or smell.
These
difficulties were articulated in the “triad of impairments” identified by the pioneering British psychiatrist
(again I hope this summary is adequate!) Lorna Wing – as involving difficulties
and lack: difficulties in social and
emotional understanding, difficulties
in all aspects of communication, and a lack of flexibility in thinking and behaviour.
In the most recent edition of the
Diagnostic and
Statistical Manual of Mental Disorders (DSM–5), again
the focus is on what is difficult. Here, autism spectrum disorders are categorised
in terms of “communication problems,”
“difficulty relating to people,
things and events,” and “repetitive body movements or behaviors.”
Thus, the life of an autistic child
is often seen as one characterised by hardships. And, so, this group of
children might be considered to benefit especially from hope – to
enable them to develop empathy for instance, or to develop a theory of mind, or
to improve their central coherence, or to help them interact with their parents
or their peers, or to show that they are able to follow what someone is saying
to them.
However,
there is another way of looking at what it is to be autistic, and to have (a
chance of) hope. I plan in the next posting to I ask how far it should be the
role of someone working with autistic people to attempt to deal with the
supposed hardships of their lives. I’ll ask what it even means to think of
an autistic person’s life as a hard one.
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).
On the quest to cure autism, see Silbermam, Neurotribes: The Legacy of
Autism, 261–237.
Sue Rubin and Julianna Margulies, Autism
is a World, San Francisco: Kanopy
Streaming, 2014.
See, esp., Lorna Wing, “Autistic Spectrum Disorders,” British
Medical Journal 312.7027, 1996, 327–328, and also Wing’s classic study: The Autistic
Spectrum: A Guide for Parents and Professionals, London: Robinson 2002 (updated
edition – first edition: 1996).
