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
Poetry

Wiped clean

There are times I look up and find the sky absent. The screen is off, no background to display. My hands immediately try to find the power button, encased in cardboard boxes filled with drippings of life. I suspect moisture is making the circuit trip up like a gangly teen with flapping shoelaces. But I can never bring myself to tear out the heart to have a look. Maybe I’m just too soft. Or maybe, there’s actually a part of me that enjoys the absence overhead.