Reviews, Uncategorized

Non-fiction book review: Living on the Spectrum: Autism and Youth in Community by Elizabeth Fein

At the beginning of last month, I received an email from Elizabeth asking if I wanted a review copy of her book. She stated that there were some sections in it which looked at the connections between autism and fantasy literature, and thought I might find it interesting. (If you’re new here, hi, I’m autistic and write fantasy books.)[Also, please excuse the bird images, WordPress is being odd and not allowing me to use paragraphs, so I decided to cheat and break up the text this way.]
minimal-4093114_1920
Elizabeth Fein is Assistant Professor of Psychology at Duquesne University and a licensed psychologist in the state of Pennsylvania (as stated in her bio on the book’s back cover), and so actively works in the field. At first I was unsure of whether to take up her offer, not only because I find academic texts extremely hard to read, but also because I was afraid that the book would take a very medical approach to autism and possibly speak positively of a cure. However, after re-reading her pitch a few times, I decided that her approach sounded a lot more considerate of autistic people as actual people, rather than patients with something solely negative that needs to be removed.
minimal-4093114_1920
Here is the pitch she sent:
The book combines approaches from psychology and anthropology to look at how youth diagnosed with autism spectrum conditions reconcile controversies around autism as a disease vs. autism as an identity.  I spent several years doing research in places where people on the spectrum come together to work, play, live, love and learn. The book describes how youth on the spectrum are looking beyond medicine for narratives that make sense of their lives, re-telling their own stories through a shared mythology drawn from roleplaying games, anime, and other forms of speculative fiction.
minimal-4093114_1920
(The book delves into these things solely within America, as that’s where Elizabeth is based, and only briefly mentions other countries. It also mostly focuses on teenagers and young adults diagnosed with Asperger’s Syndrome.)
minimal-4093114_1920
The book starts with a very comprehensive introduction, which outlines how her research was carried out (lots and lots of field work, much of which was talking to autistic individuals and the people who work with them), where her personal interest in autism started (I found this part extremely heart-warming) and also a bit about the history of autism as a diagnosable condition – she mentions both Leo Kanner (who noted what is still sometimes called ‘classic’ autism; meaning individuals with high care needs who may be non-verbal) and Hans Asperger (who looked more at individuals who are often highly verbal and excel in topics they’re interested). She also mentions the controversy around Hans Asperger (which is highly Google-able), and notes how terminology around autism has changed over the years, and presently all variants of autism are diagnosed under one umbrella term of Autism Spectrum Condition/Disorder (some places prefer to say ‘condition’, others use ‘disorder’). When I was diagnosed early last year, it was under this umbrella term, though the psychologist I spoke to said the way my traits manifest are closest to what was previously called Asperger’s Syndrome.
minimal-4093114_1920
Elizabeth also notes that she uses both autistic person and person with autism to refer to individuals on the spectrum throughout the book, taking particular care to use the version the person she’s interviewing prefers. (Many people, like myself, prefer to say they’re autistic, however, there are some who like to say they have autism.) I actually liked this, as despite my own preference, I felt she was trying to be as inclusive as possible. Other notes she includes are that everyone interviewed has been given a different name in the book to protect their identity, and that as her research was done over a number of years, the way the participants referred to themselves in terms of gender may also have changed. There are many others, which all helped to put me at ease with the prospect of the topics the book talks about.
minimal-4093114_1920
Now, onto the main parts of the book:
minimal-4093114_1920
The first chapter looks at the idea of structured socialising, in this case through a live-action role-play camp specifically for autistic kids, and how having that structure can put people more at ease in social situations. Basically, the kids were given the ‘rules’ of the particular fantasy world and their characters, and interacted with those in mind. For me, the idea that having more structure makes socialising easier seemed kind of obvious, but then, as that’s how my brain responds best, I suppose it would. I also really enjoyed the journal/diary based style that parts of this chapter were written in – Elizabeth attended this camp and took a very active part in it.
minimal-4093114_1920
The book then moves on to looking at how autistic kids navigate school and followed a number of individuals and schools themselves. This section was particularly interesting for me, as because I was diagnosed as an adult, I attended mainstream schools without any assistance (I ‘coped’ by taking a lot of work home and getting my family to help), whereas theses kids were already diagnosed and trying to access the services they needed, which were often limited and difficult to get.  The difficulties in accessing suitable support for autistic people were highlighted strongly, which I appreciate. This isn’t often talked about.
minimal-4093114_1920
Following chapters talk about the different concepts of what autism is and whether the two main views of it can co-exist, and how individuals on the spectrum feel about them. One of the chapters is called ‘The Pathogen and the Package’. The pathogen part referring to the view that autism is a negative thing akin to a disease that is stopping someone from being the person they ought to be; whereas the package looks at autism as a different way of being that has positives and negatives, and that the idea of removing it (or curing) would change a person’s very being.
minimal-4093114_1920
This was the part that I was the most concerned about reading, and parts of it made me angry – not what Elizabeth herself was saying, as she deliberately maintained a very neutral discussion of the different views so as to fully explore them, but where she quoted speakers from talks she attended. She mentions the organisation Autism Speaks, fully explaining how it was formed and that one of the organisations that it’s made up of was previously called Cure Autism Now!. She notes how, because of the controversy of a cure, Autism Speaks removed finding a cure from their list of goals and also makes use of very careful language (which, as Elizabeth quoted so much of it, I interpreted as the organisation still being willing to spend money and resources on finding a cure while not directly saying that’s what they’re doing).
minimal-4093114_1920
There is a chapter where Elizabeth looks specifically at the idea of a cure and what people on the spectrum and their families think of the idea. This section was delightfully heavy in interviews with said people, and very much reflected the difference in opinion between autistic individuals and their family members. The trend seemed to be that the autistic people themselves viewed a cure as something that would stop them from being who they were, while their family members, who saw how much these kids struggled in the world, thought a cure may ease some of those struggles and thus might not be an inherently bad thing. Elizabeth speculated that this may also be because of the age difference and continuously evolving views on autism and neurodiversity as a whole. However, there were one or two autistic individuals who thought that maybe something like a cure would be useful, and I’m glad she included these too. 
minimal-4093114_1920
(My personal view is that my struggles are largely due to the fact that the world around me is not designed for people outside the norm; therefore, the problem is more with the environment rather than my brain. I’d hate not to have the insights and fascinations that come from being autistic. To my mind, non-autistic people miss a lot of things. Thus, I find the idea of a cure utterly repulsive.)
minimal-4093114_1920
The last chapter moves on again (or perhaps back) to looking at the use of fantasy in how autistic kids see themselves and their position in society. Again, this chapter made excellent use of interviews and quotes, and I identified with a lot of it. Many of the examples were of characters kids had made up based around their own behaviours. There were a lot of half-demon, half-human concepts, which I suppose reflect the things we struggle with and often feel we have to hold back versus the things we’re good at.
minimal-4093114_1920
Elizabeth ends with a conclusion, which summed up, says that autistic people should be allowed to carve out their own space in society and that perhaps current medical views and interventions might not be as effective as others involving more active settings (like role playing or going about town in a group to explore and learn how to do/interact with different people and things – something that I feel would have benefited me greatly, and probably still would).
minimal-4093114_1920
So, as you might notice by how long this post is, there’s an awful lot to consider about this book. As I mentioned at the beginning, I’m not very good at interpreting and understanding academic texts, and some of the sections were very heavy with that kind of writing, so my take on this book may well be very different to that of someone who is actually able to take in all of that rather than getting the general ‘gist’ of things. However, though I found parts difficult to get through or follow, the more narrative parts and interviews were very fun and fascinating to read. I think Elizabeth’s research was conducted in a very careful, considerate way with full respect for everyone involved (this is also confirmed at the end of her acknowledgements).
minimal-4093114_1920
Though I was worried about the segments surrounding ideas of autism as a disease and whether it needs a cure, the very fact that she was so thorough in every part of the discussion (everyone was given space for their voice to be heard) left me with little doubt that she is very much a person who cares about autistic people being allowed to be their own selves (and make their own choices). My one peeve about the book is that few individuals with more drastic care needs were included, however, the reasoning for this is clearly explained in the introduction, so I can’t complain too much. Still, it would have been nice to hear from individuals from all areas of the spectrum. I appreciated the voices from autistic adults as well as young people, though, as I feel that autistic adults are often forgotten about.
minimal-4093114_1920
I very much appreciate and respect the level of work that has gone into this book, and I’m more than grateful that she reached out to me about it. If you can happily read academic books or are open to the challenge, I would easily recommend this one. I hope it gets read and shared by as many people who work in the medical field as possible, plus many more (perhaps it should be a library staple).
minimal-4093114_1920
The book is published by New York University Press (www.nyupress.org), and I believe Amazon has it too.
Elizabeth book cover
Poetry

Doorways

I love to look across at my bookshelves.

I don’t just see slabs of paper wrapped in pretty pictures,

or titles on spines acting as identities.

 

I see doorways.

 

I see vines of words reaching out to tangle around my arms and drag me in,

whether to another world entirely,

or to a part of my own brain that I’ve never greeted before.

 

Even after I close the book

once my ticket there is spent,

I know I can use it as a wedge to return to that place.

 

A place where I will always find a home

or a friendship,

a truth, a discovery

and sometimes

even family.

 

Poetry

A shelf of names

Is it an odd thing

to want to put my name on a shelf?

Pin it up amongst the other names

of other dreamers, ones who have been told many times,

probably even more times than me,

that their dreams aren’t worth following?

 

Is it an odd thing

to want to pour my mind out?

Use my blood as ink, staining the words

onto white sheets binding the dreams always to the world,

polishing until they are no longer

dreams, but real, solid books?

 

Perhaps it is.

And perhaps I’ll do it anyway.

Poetry

World Book Day

When opening to a page and getting lost within,

whether fiction, non-fiction, poetry, short stories sweet or grim,

remember that those words, before they were inked,

were the ideas, imagination and experiences

of those creators with whom you are now linked.

Uncategorized

I’m on Youtube!

So today I did something (kind of) impulsively – I made a video about books. I plan to make more, though I won’t have a specific upload schedule, it’ll be more of a ‘when I have time’ kind of thing, but this is the start to what will hopefully be an interesting Booktube channel.

As with all first videos, there are plenty of awkward moments, but it was fun to record and just talk book talk for a while. And yes, I say ‘fantastic’ a lot.

You can view it here.

Happy watching!

 

Uncategorized

Book haul! part two: Fiction and Non-fiction

As promised, here’s part two of my recent book haul! They cover quite a few genres and age ranges.

Fiction:

Dragon Rider: The Griffin’s Feather by Cornelia Funke – The last winged horses are on the brink of extinction. Three foals lie curled in their eggs in a sanctuary for threatened creatures, where a young dragon rider lives with his silver dragon. The foals are ill, and the pair volunteer to seek the only cure: a Griffin’s feather. But Griffins, with the heads of eagles and the bodies of lions, are a dragon’s fiercest enemy, and live far across the world in the sweltering jungle. A dangerous and exciting adventure begins …

Around the Universe in 10 -43 Second by Manu Breysse – Sareth is a Pharaoh on a lost planet at the far end of an arm of the Milky Way. While imposing a hard-line, despotic regime there, he is accidentally teleported to the centre of the galaxy. Lost, Sareth goes to take refuge in a city library to try to understand what is happening to him. But, just as he is about to discover the meaning of life, it disappears before his very eyes… Come discover Sareth and his companions on their insane quest to find the meaning of life! A quest against which the universe itself appears to put them on their guard with its space worms, galactic jellyfish, pan-dimensional creatures, humans… Accompanied by an alcoholic, his shrink and the latter’s daughter who is in the throes of adolescence, Sareth will confront the dangers of an absurd universe, which has no other purpose than to make life rare and precious!

Carnivalesque by Neil Jordan – To Andy and his parents, it looks like any other carnival: creaking ghost train, rusty rollercoaster and circus performers. But of course it isn’t. Drawn to the hall of mirrors, Andy enters and is hypnotised by the many selves staring back at him. Sometime later, one of those selves walks out rejoins his parents – leaving Andy trapped inside the glass, snatched from the tensions of his suburban home and transported to a world where the laws of gravity are meaningless and time performs acrobatic tricks. And now an identical stranger inhabits Andy’s life, unsettling his mother with a curious blankness, as mysterious events start unfolding in their Irish coastal town.

James and the Giant Peach by Roald Dahl – James Henry Trotter lives with two ghastly hags. Aunt Sponge is enormously fat with a face that looks boiled and Aunt Spiker is bony and screeching. He’s very lonely until one day something peculiar happens. At the end of the garden a peach starts to grow and GROW AND GROW. Inside that peach are seven very unusual insects – all waiting to take James on a magical adventure. But where will they go in their GIANT PEACH and what will happen to the horrible aunts if they stand in their way? There’s only one way to find out . . .

Lady Cottington’s Pressed Fairy Book  by Terry Jones, illustrated by Brian Froud – This is a reproduction of the diary of Lady Angelica Cottington, which features pressed garden fairies. Or rather the psychic images of the fairies, who quickly turned it into a game, where they leapt between the closing pages in an effort to outdo each other to produce the most outrageous poses. The book claims to be the facsimile edition of the notebook of Lady Cottington who, it is said, took the infamous photograph of a group of fairies that was authenticated by Conan Doyle, but later discredited. She was determined to prove the existence of fairies and began to capture them between the pages of her notebook, in which she had previously pressed wild flowers. This is a record of the fairies she caught, and of the disruptive influence they had on her otherwise sheltered life.

The Museum’s Secret by Henry Chancellor – Welcome to the Scatterhorn Museum! But don’t get too excited – it’s a cold and dingy place, crammed full of tatty stuffed animals and junk. Nobody much wants to visit any more, and its days are surely numbered. But when Tom is sent to live here he soon finds there is more to this museum than meets the eye. The animals may be shabby and moth-eaten – but they possess an incredible secret. And when Tom discovers he can go right back to the time of their making, a hundred years earlier, he embarks on a journey full of unimaginable terrors… Join Tom in his breathtaking adventure in and out of time, from an Edwardian ice fair to the wastes of Mongolia, the jungles of India, and beyond…

The World’s Worst Children 2 by David Walliams – The brilliant follow-up to David Walliams’ bestseller The World’s Worst Children! Ten more stories about a brand new gang of hilariously horrible kids from everyone’s favourite children’s author, illustrated in glorious full colour by Tony Ross. If you thought you had read about the World’s Worst Children already, you’re in for a rather nasty shock. The beastly boys and gruesome girls in this book are even ruder, even more disgusting and WORSE than you could ever imagine!

Moonlocket by Peter Bunzl – It’s hard to escape the secrets from the past.
Storm clouds gather over Lily and Robert’s summer when criminal mastermind the Jack of Diamonds appears. For Jack is searching for the mysterious Moonlocket – but that’s not the only thing he wants. Suddenly, dark secrets from Robert’s past plunge him into danger. Jack is playing a cruel game that Robert is a part of. Now Lily and Malkin, the mechanical fox, must stay one step ahead before Jack plays his final, deadly card…

Non-fiction:

Weird Things Customers Say In Bookshops by Jen Campbell – ‘Can books conduct electricity?’ ‘My children are just climbing your bookshelves: that’s ok… isn’t it?’ A John Cleese Twitter question [‘What is your pet peeve?’], first sparked the “Weird Things Customers Say in Bookshops” blog, which grew over three years into one bookseller’s collection of ridiculous conversations on the shop floor. From ‘Did Beatrix Potter ever write a book about dinosaurs?’ to the hunt for a paperback which could forecast the next year’s weather; and from ‘I’ve forgotten my glasses, please read me the first chapter’ to’Excuse me… is this book edible?’ This full-length collection illustrated by the Brothers McLeod also includes top ‘Weird Things’ from bookshops around the world.

The View from Cheap Seats by Neil Gaiman – ‘Literature does not occur in a vacuum. It cannot be a monologue. It has to be a conversation.’ This collection will draw you in to exchanges on making good art and Syrian refugees, the power of a single word and playing the kazoo with Stephen King, writing about books, comics and the imagination of friends, being sad at the Oscars and telling lies for a living. Here Neil Gaiman opens our minds to the people he admires and the things he believes might just mean something – and welcomes us to the conversation too.

Nightwalking by Matthew Beaumont – In Nightwalking Matthew Beaumont recounts an alternative history of Londonpopulated by the poor, the mad, the lost, the vagrant and the noctambulant. He shines a light on the shadowy perambulations of poets, novelists and thinkers: Chaucer and Shakespeare; William Blake and his ecstatic peregrinations and the feverish ramblings of opium addict Thomas De Quincey; and, among the lamp-lit literary throng, the supreme nightwalker Charles Dickens. We discover how the nocturnal city has inspired some and served as a balm or narcotic to others.

So there you are, a breakdown of all the books I’ve gathered this month. Most of them I bought myself, but Carnivalesque and Around the Universe in 10 -43 Second I gained from giveaways – always a bonus!