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.]
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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.
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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.
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(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.)
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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.
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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.
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Now, onto the main parts of the book:
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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.
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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.
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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.
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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).
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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. 
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(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.)
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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.
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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).
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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).
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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.
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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).
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The book is published by New York University Press (www.nyupress.org), and I believe Amazon has it too.
Elizabeth book cover
Reviews

Book review: A Kind of Spark by Elle McNicoll

 

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I heard about A Kind of Spark a few weeks ago, as I’ve followed its publisher, Knights Of, since they first formed some years ago. Knights Of are an independent UK publisher looking to boost the voices of marginalised writers and artists, so it came as no surprise to me that they took on this book, which is an own voices by a neurodivergent author.

The story is about 11 year old Addie, who is autistic, and her campaign to get a memorial made for all the ‘witches’ trialled in her small village in Scotland in the 1600s. She can’t help but see the parallels between those who were accused of being a witch and herself – both she and they are seen as other by everyone around them, and she longs to right that.

Before I started this book, I thought it might feature Addie going around different sites and compiling facts about the witches to use for her case, but it’s actually more about how everyone in the village treats her, and her older sister who is also autistic, Keedie.

This made it a very difficult read for me, because the teacher Addie has is truly horrible to her – tearing up her work, humiliating her in front of the class, accusing her of copying, trying to tell her parents that she’s a problem and shouldn’t be in that school – and when I was in Primary School, in the infants class, I had a teacher who bullied me just like that and scared me so much that I got ill and couldn’t physically go in. So for a lot of those scenes, I was in tears trying to squash down my own memories. Added to that were much newer memories that came up in the scenes where Addie would talk to Keedie (who is also the twin of Nina, a neurotypical girl who clearly loves her sisters but doesn’t understand them the way they do each other).

Keedie is about 18, and in the first few months of university. She’s able to commute, so she comes home every night, but it’s clear that it’s taking a toll on her, especially when she tells Addie that she hasn’t told anyone there that she’s autistic and is constantly masking. I connected just as much with Keedie as with Addie because of this, as I masked so much while I was at college and then when I tried working. There’s a scene where Keedie can’t take it anymore and gets thrown into burnout, and it really resonated with me. Well, the whole book did, but these parts were the most intense.

I won’t give away any more of the story, but I will say that reading from Addie’s perspective (it’s written in first person present tense, so it’s a very close narrative style) completely echoed the sensory and social experiences and difficulties I have, along with what it’s like to get wrapped up in a special interest and the strong urge to right things that are clearly wrong. So, if you want to know what it’s like to be autistic, this is the book you should pick up. In fact, I encourage everyone to, as it contains many of the things I want others to be aware of while saying them in a more coherent way than I think I ever could.

I will say, though, that if you’re a neurodivergent person with similar traumatic experiences to mine, then to be gentle with yourself reading this. It’s hard. Things bubbled up in me that I thought I’d buried long ago. However, I spoke with the author, Elle, about it (she’s very active on Twitter and open to DM’s) and she said that she used a lot of her own experience for this, and it shows.

Also, on a side note, a lot of the people who worked on this book are neurodivergent too. I’m very hopeful that A Kind of Spark will be the start of a big change in the publishing industry, where opening doors to neurodiverse creators is the norm, not the exception.

Once again, please take a look at this book!

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The IW Story Festival and my anxiety

On Friday, I had the pleasure of giving a workshop on writing poetry about dragons at the Isle of Wight Story Festival.

However, as I have quite severe social anxiety and get easy overloaded by sensory stimuli – some of the more negative things about being autistic, I was dreading being at the festival and talking to people while I waited for my turn (I went a few hours early, as my partner’s brother was giving a talk on butterflies, which I’m really glad I attended as it was utterly brilliant, but also meant that I had two hours spare until my own workshop).

I ended up hiding in the green room, with other authors and illustrators in there with me, and though they were lovely to meet and listen to, I was so unsettled and not sure what to do that I didn’t feel comfortable enough to say much or eat my lunch until they all left. I also had to wear my ear defenders as the kids attending the festival were shouting excitedly and running around – not a bad thing, as it meant they were enjoying themselves, which is what the festival was all about, but the sound was a little too much for me to handle.

Still, I had a decent amount of kids attend my workshop and they all wrote some brilliant poetry. I wasn’t sure if they were enjoying it much, as it was a quieter workshop than some of the earlier ones, and was very much based on their own creativity, but when we finished, most of them came up to me and said they did. The parents did too, which was nice, and I was even asked to have my photo taken. I also did a giveaway of some of my books, so I was able to sign those, along with some of the bookmarks I had on hand.

Part of the workshop was making a group poem, where I asked the kids to write a single line of poetry, which I then wrote down and, while they were busy coming up with their own individual poems, I used those lines to craft a complete poem. We also voted on a title for it, too. So below is a photo of the completed group poem, made entirely of parts from the lines they gave me. (Apologies for my handwriting, it’s always terrible.)20200223_111600

I’m not sure if I’ll take part in the festival again, as being there has completely drained me (I expect for the next week, as it usually takes a while to recover from events like this), and it weighed so heavily on my mind during the few weeks before it that I couldn’t focus on any other work. But listening to the poems the kids wrote was a really wonderful moment, so I do feel greatly privileged to have had that opportunity.

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Thoughts on the past year

Hi everyone, as it’s that time of year when many people take a moment of reflection on the past year and think about the future, I thought I’d take a moment to do the same.

Last year was a mix of good and bad. On the personal side, I had a long bout of depression and autistic burnout, had frequent meltdowns and shutdowns, and suffered from intense imposter syndrome regarding my work. But I also learnt a lot about my neurology, began implementing coping strategies to reduce meltdowns and shutdowns (like using ear defenders, sunglasses and fidget toys to help with sensory overload and not doing too many tasks in one day) and celebrated a year and a half with my partner and, in November, actually moved in with him.

I also realised that I’ve achieved an awful lot with my writing, too:

  • I did my first edit of my YA sci-fi, Unsung.
  • I put together my short story collection, When The Bard Came Visiting, which comes out this February.
  • I re-edited my Half-Wizard Thordric trilogy to catch all the continuity errors that had slipped through.
  • I wrote a middle grade fantasy involving time travel.
  • I edited two poetry collections and submitted them to my publisher.
  • I did my first author visit at a school.
  • I did another edit on Unsung, and prepared a query and synopsis for submission to literary agents.
  • I put together a poetry pamphlet and a children’s poetry collection for submission to an independent press.
  • I wrote (and illustrated) a bespoke story that the client had won at a local school fair.

Writing it all down in a list like this gives it a lot of substance that I can’t ignore, because it wasn’t until I started writing this post that it fully hit me how much work I completed. When I think about how unmotivated I felt for most of the year, it’s incredible that I managed to do so much. I suppose it does make sense though, because no matter how hard writing can be, it’s the one thing I’ve always known I’ve wanted to do, and is the way in which I express myself best. I know a lot of the poetry I wrote released a lot of frustration and helped me to accept who I am, and writing fiction let me live an adventure I’d otherwise never know.

For this year, I haven’t made any strict resolutions. I simply intend to keep the same goals I always have: to keep writing, appreciate the small things and (this one is slightly newer) ask for help when I need it. I’m sure there will be times when I get distracted, overwhelmed and stubborn, but as long as it’s not too often, I know that’s all okay.

So, here’s to a new year full of self-care, appreciation for those who support us, and determination for whatever it is that we wish to achieve.

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My first author visit at a school

This may be a brief post as I’m so worn out I can barely stay awake, as my energy was taken up entirely by the day – and by the absurd levels of anxiety I’ve had for the past few weeks leading up to today – but it was a great experience and so I wanted to share a bit about it.

So, in partnership with the Isle of Wight Literary Festival Story Festival, which will take place in February 2020, I was invited to go into two schools and visit years 4-6. Lots of other children’s authors were invited to do the same, both local and from the mainland, and everyone I spoke to about it was very excited.

I was too, but as my anxiety runs riot with anything new that’s going on, and knowing my energy often gets spent very quickly when around people, I was terrified. To help ease some of that terror, I ended up scripting out what I wanted to do (even my introduction of who I am) and rehearsing it in my living room a few times until I was fairly confident that I wouldn’t forget any of the major points I wanted to make. I also made sure I had a copy of said script with me in case I lost my train of thought or my words decided to cease up.

I was very pleased with myself when neither of those actually happened, and I didn’t have to refer to my script once. And though I was nervous at the start of every class (I met with a total of five classes), as I got into what I was saying and my reading, my confidence came back. I also taught a mini workshop on where to get story ideas and how to progress them, and I was blown away by the level of creativity the students had, along with their enthusiasm.

I had a lot of fun, and the day really enforced the reason for why I write –  to share my stories and inspire people as other authors have inspired me.

Now, I may not be able to leave the house for a few days while I recover, but I have to say that all that anxiety and uncertainty was worth it, and I hope I get the chance to do it again next year.

Poetry

Splinters

The splinters of the branch slid into my fingers

as it snapped at the force of my hand as I tumbled into the tree.

Blood beaded down the bark and caught on the tip of a serrated leaf.

The red mirror showed

how little I’d changed

despite being shoved out of line, convinced my place was over here, not there.

My hair was ruffled, but still mine.

My clothes were covered in cobwebs and lichen, but still mine.

My eyes were wet and open, but still mine.

The blood dripped from the leaf and was instantly swallowed by the soil.

I stood up.

Poetry

It’s not always winter

I take the knife and carve away a slither.

The exposed skin reddens at the touch of cold air

and regrows its protective casing.

I try again, carving away another slice,

yet still the ice seeps in and forces retreat.

Moons change and the casing grows thin,

I cannot depend on it for support much longer.

The crushing air outside is still strong…but wait!

Is that a warm spot approaching in the distance?

I can last just a little longer. A fraction more.

I reach out

and it takes me with it.

The memory of warmth becomes real,

I shed my casing without worry.

Poetry

Flashbacks

It smelt like school this morning.

The first light of the first day of a new school year,

walking down the paved path, satchel in hand, wondering what the day would bring,

what misunderstandings would happen,

what scolding I’d earn for fidgeting or not doing my work

because I didn’t understand yet again.

The other kids, all so at ease, until I try to join in.

They lie to each other, say I’ve stolen this, hogged that,

and not let me play.

Not that I understood how to play, anyway.

But that’s not the point.

When the seasons turn

and give off their scent, that crisp to September air,

it fills my head with these visions

and all the textures, sounds and emotions

that go with them, and even after all these years

I can’t turn them off.