Book review – Kelli Sandman-Hurley – “The Adult Side of Dyslexia”

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I was attracted to request this NetGalley book because I’d just been thinking and writing about my editing clients with dyslexia, who are one group of writers who often use speech-to-text software (I wrote about this on my professional blog here), and also one of the books I’d been reading about race issues had mentioned how Black children are less likely to be diagnosed with dyslexia and more likely to be diagnosed with behavioural issues. I liked seeing the darker skin of the woman on the cover, allowing her to be one of many ethnicities rather than just a “standard” White. It is published this month, so I aimed to read it anyway, popping it into my NonFiction November challenge, but then when I started powering through the percentages on my Kindle I checked and realised it was also a Novella in November candidate!

Kelli Sandman-Hurley – “The Adult Side of Dyslexia”

(29 September 2021)

This short book has all it needs to pack a punch, give people visibility and recognition and put forward good solid action points for the future. Sandman-Hurley did a qualitative study, interviewing around 50 adults with dyslexia about their experiences in education and their lives and opinions now.

She recruited a wide range of respondents of all races and social classes, and reports their words directly in most of the text, drawing comparisons and making careful use of “most”, “many” and “some” as she goes (she’s also careful to ask them how they wish to be referred to, as dyslexics or people with dyslexia, and is careful to honour all their different experiences, although I did note she only seems to refer to people’s race when they were not White*; she does talk about particularly inequitable treatment given to Black and Latinx students in schools).

The stories are of course sad and painful, but she’s quick to draw lessons from them about advocacy, self-advocacy, teacher education and the importance of adult dyslexics providing role models and advocates for younger people coming along. She even includes call-out quotes that summarise the page they’re on (I’m not sure what this looks like in the print book; it showed up as paragraphs in bold in the middle of the pages on the Kindle ARC), presumably to allow a more smooth read for people with dyslexia accessing the book.

There’s a resource list in the back that includes books, websites and podcasts, including non-US ones. Sandman-Hurley is an adult literacy teacher and researcher and has written other books around dyslexia and this is an excellent, although based in the US school system, resource.

* Edited to add: in fairness to the author, I received this gracious reaction to my review from her via (public) Twitter: “Thank you for the review. I appreciate the point that I only referred to race when it wasn’t white. That was certainly an unconscious issue that I will address as I go forward.”

“The Adult Side of Dyslexia” was published on 18 November 2021. Thank you to Jessica Kingsley Publishers for making it available on NetGalley in return for an honest review.


I read this for Nonfiction November and it was also Book 10 in my Novellas in November reads

Book Review – Simon Barnes – “On the Marsh” #NonFicNov

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This was a book I actually finished at the weekend, so still during Nonfiction November, but didn’t get time to review, frustratingly. So now I’ve read or started everything I planned to read apart from “Homesick” – and at least “The Good Immigrant USA” will now ‘do’ for #DiverseDecember!

I’m also pleased that I’m almost caught up to being a year behind, after having slipped back horribly in getting through the books I bought the longest ago, and even when picking newer books off from time to time. It’s all good.

Simon Barnes – “On the Marsh: A Year Surrounded by Wilderness and Wet”

(02 October 2019, The Works, Penzance)

This book has contributions from Edmund Barnes and Cindy Lee Wright. Cindy is Barnes’ wife, she has done beautiful illustrations for the starts of each chapter, and Barnes also includes moving passages of appreciation for both her art and for her support of their family. Edmund – Eddie – is a young adult who has Down’s syndrome and has contributed both a his character to the book and his rather lovely poems scattered through it.

I did worry that I would find too many personal incursions into this book – not because I don’t like reading about people living with different conditions, but because I like my nature books to be about the nature. But here, the theme of Eddie’s life and the effect being on the marsh has on it, as he passes through a big year where he leaves school and starts college, learns more about nature and learns some potentially hard lessons about his beloved horse (don’t worry, though), is woven beautifully through the book, with promised excursions and repeated joys bringing a daily structure to the book which echoes the monthly and annual one. There is some polemic, and why the hell shouldn’t there be, about the odd unkind educator and the very existence of people with Down’s syndrome, but the main theme is carried through with aplomb.

There’s polemic, too, about nature conservation, about keeping wild lands joined up, and a lot of musing on what ‘wilding’ and ‘rewilding’ are and what we should do to our land – Barnes makes the excellent point a couple of times that “our land” can be anything from a massive estate to a window box, but it all matters and it all involves decisions (we’re thinking of climbers and fruit trees to plant to offset our next-door neighbour’s huge extension, for instance). He mentions Isabella Tree’s book “Wilding” a couple of times, and visits the farm where it’s set, which is making me eager to pick that one up. But the joined-up nature of wild places is the most important thing for him:

It’s part of something that covers the nation: a vast and spreading web of places where the wild things are. And every strand depends, at least to an extent, on all the others; when you break a single strand you weaken the entire web. (p. 63)

We come off the marsh in fact to visit his neighbours and friends around and see how they manage their land and what they think of his. There’s quite a lot about the local nature reserve at Minsmere, which is lovely to read about. 

He’s got a nice turn of phrase – his horses turn into dragons on a frosty morning “I found I had exchanged them for a stable of dragons, three twin jets of smoke billowing over the three half-doors” (p. 73).

In one very exciting passage, he also reveals that his grandfather lived basically half a mile from where I live now! My next but one read has featured Peckham, too, so everything really is a web of knowing and places!

Barnes’ African sojourns also feel natural to relate here, talking about the lions he loves and the naturalists he’s spent time with and, notably, seeing migratory birds on the marsh that he has also seen on that other continent, thousands of miles away. As well as Cindy’s lovely animal illustrations, there is a pleasingly drawn map at the front. I learned a lot reading this book (are baby spoonbills really called ‘teaspoons’ by birders, though?), it’s the everyday small pleasures, recognising a birdsong, seeing a new creature, seeing the same creature again and again that really stuck with me when I finished this book.

 

Book review – Jennifer Niven – “Holding up the Universe” @jenniferniven #amreading

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A foray into YA today, an age group I’m not averse to, although I’m not keen on vampires and the like and keep it to the more real-life stuff. In the case of this book, I came to it via the prosopagnosia group I’m in, because one of the two central characters has proso (or face-blindness) just like me (read about my experiences with it here on my professional blog). I have to admit to a little trepidation, because would she get it right? Reader, she did: very, very right. And it was a good read it in its own right, too.

Jennifer Niven – “Holding up the Universe”

(13 March 2019)

A marvellous YA novel with its central characters a fat girl (who used to be America’s Fattest Teen, and has lost enough weight to be able to run and buy clothes at the mall but no more with no plans to lose more) and a boy with the best-described (OK, only) case of prosopagnosia I’ve seen in fiction.

Libby is going back to high school after a couple of years of hiding away and home-schooling, and Jack’s trying to keep an eye on his younger brothers, especially Dusty, who’s just started carrying a handbag around, although this is tricky when he has to constantly recalibrate who they are (he has it worse than me, knowing someone is his mum because it’s a woman in his house and he can extrapolate from there). Libby’s weight loss doesn’t win her a boyfriend, as some more conventional narratives would have it: working on herself and going back to school with her head held high give her friends, and if it’s a choice between losing weight and losing one of her dreams, well, you trust the author on this one. She’s her own authentic self, even when that brings her into the public eye – although the first spotlight on her is not exactly her fault.

The two teens meet when Jack does something disrespectful to Libby but with good motives, to prevent he from having someone more malevolent target her in a new craze (there is no animal cruelty (in fact the elderly cat makes it through to the end) or hazing, as some reviews have mentioned a shocking incident: it is shocking, but not gratuitous). They reach an understanding and start to fall in love with one another, in a nicely believable, supportive and respectful way (sometimes this seems a bit twee in YA books but then the young adults I know are pretty respectful and open-minded, so …).

But the best bits are the bits describing prosopagnosia. Niven has done her research (and thanks those who helped her) and it shows, but is put in naturally. There’s such a good explanation that I will try to remember and use myself:

“So you can see my face, but you can’t remember it.”

“Something like that. It’s not like faces are a blank. I see eyes, noses, mouths. I just can’t associated them with specific people. Not like how you, as in Libby, can take a mental snapshot of someone and store it away in your mind for next time. I take a snapshot, and it immediately goes in the trash. If it takes you one or two meetings to be able to remember someone, it can take me a hundred. Or never. It’s kind of like amnesia or like trying to tell everyone apart by their hands.”

She glances down at her hands and then at mind. “So when you turn away and then you turn back, you’re not sure who I am?”

“Intellectually, I get that it’s you. But i don’t believe it, if that makes sense. I have to convince myself all over again.” (p. 145)

Like the rest of us, he uses signifiers, the way someone walks, the shape of their nose, the colour of their hair, the sound of their voice, to identify them.

And then look at what happens when Jack is asked to hand out test results to the class:

The class is looking at me as I look at them. There are four kids who are definite IDs. Three, I’m fairly sure I don’t know and am not supposed to know (but I’m not completely, totally sure). Eight are in the gray zone, better known as the danger zone. (p. 43)

It even has one scene where, panicked, Jack only sees blurred disks rather than faces with features – this has happened to me very rarely and is very uncomfortable. Libby gets it and announces to Jack who she is when she comes up to him (hooray for friends who do this!) and when he finally “comes out” about it, some friends laugh, some get it wrong, “I heard you went blind,” and some research it and arm themselves with the facts – pretty representative of real life, where it’s always better to tell people, I’ve found.

Libby is comfortable with who she is: “Why should what I weigh affect other people?” she asks (p. 310) but she’s worked hard on herself to get here and shows that’s something people can do. And she’s a powerful force for good in Jack’s life, but also seen as attractive in her own right. A good read and one I will be telling the proso groups all about!


Do feel free it you want to ask me anything about prosopagnosia in the comments!

Book review – Laura James – “Odd Girl Out” #netgalley #books #amreading

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Odd Girl Out Laura JamesAnother NetGalley read slipped into the middle of my Virago month and Books of Summer. Thank you to Pan Macmillan for making it available via NetGalley.

“Odd Girl Out” is the story of a woman diagnosed with autism in her adult years, who surprises people with this fact when they only know the externals of her life as a busy and successful journalist and PR. When she finally discloses her status, and the raft of careful work to build her environment to be as supportive of her condition as she can that entails so much hard work on her part, she finds her people and draws comfort from other, hidden, autistic women.

It’s a very open and honest book – as what get called ‘high-functioning’ people on the autistic spectrum often are, and this is both an advantage and a disadvantage, as the sections detailing her medical procedures and addiction clinic experiences can be a little too searing at times. James does make an interesting point about the idea of the ‘spectrum’ being just that (rather than a continuum) with different characteristics appearing in different people to different extents. Therefore, she can function in interviews but has some very specific needs around comfort and her bedroom, and this is normal – or it’s her normal, anyway.

The book also touches on the important fact, really just coming to light recently, that just because girls are less frequently diagnosed as autistic than boys, it doesn’t mean they are less frequently autistic. She teases out the idea that girls, socialised to be, well, socialised, use copying neurotypical behaviour as a very strong coping mechanism. This helps them to ‘pass’ more easily (maybe unless they have co-morbidities, as James does, with issues with hypermobility, GI problems, a very delicate skin and hyper-sensitivity to drugs – still, she exhibited all this yet her autism was missed for decades). This ‘passing’, however, is much more exhausting than simply living as a neurotypical, needing hypervigilance and leading to meltdowns (for her, more melt-inwardses) and exhaustion. She’s very powerful on the hard work of maintaining that surface for the outside world.

I found the portrait of James’ marriage incredibly sad in many ways. She has happened upon a man who, although he has his own battles with depression, loves spontaneity and adventure, something she isn’t bothered with (well, is actively bothered by, but not in that way).  He asks her at one point if she ever experiences joy, and the part where she explains – to us, but not to him (although obviously he will have read the book) – that when he puts his hand on her knee to comfort her, she has to bear it, rather than drawing comfort from it, is heart-breaking. However, when he’s asked what about her autism upsets him, he looks to her wearing of a uniform rather than dressing for others, presumably in an effort not to hurt her. Still, you never really know what goes on in someone’s marriage, and it’s clear that they have found a way to hold together – more power to them.

The book is ordered very oddly, jumping around between the present, recent past and older past, with childhood scenes to boot, and I found this quite confusing, as there were few anchors in the text to remind you where you were, or links to justify the jump. Of course, in a print book, it’s easier to flick back to check. But overall it’s a valuable and good read, especially for women living with autism and their husbands, wives, parents and children, as well as for the generally interested public who like writers such as Oliver Sacks. This adds greatly to the small literature on and by women with autism, falling somewhere between Temple Grandin and Donna Williams.

Book review – NeuroTribes

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November TBRJust one book today, mainly because I got this on NetGalley and you can save time by just putting a link in to your review when submitting feedback. And it’s the only one I’ve got outstanding at the moment, and just sometimes it’s good to be nice and tidy at the end of the month (my TBR is anything but. This will change).

Steve Silberman – “NeuroTribes”

(October 2015 – from NetGalley – thank you to the publisher Penguin Group Avery and NetGalley)

This book now rather famously (as it won the Samuel Johnson prize for non-fiction between me acquiring it and this review) sets out the history of research on, attitudes to and treatment of autism (and what eventually became known as its spectrum). It starts off with a couple of descriptions of scientists from history who we would say now are “on the spectrum”, not in a move to retrospectively diagnose them but more importantly to highlight their huge contribution to the development of science, which would not have been possible without their distinctive personality traits, which is the central theme of this book.

Some of the historical sections on diagnosis and treatment would be distressing for people with autism in their immediate family to read and were on the edge of my tolerance: but it’s important for the author to set out the arguments around eugenics and around aversion therapy (the latter being practised until almost the present day), both of which were represented, of course, at the time as “science”, because we need to know and remember what has happened in the past.

The mix of history and modern stories of advocacy and empowerment make for an engaging read; it was good to come across “old friends” such as Temple Grandin, the subject of one of Oliver Sach’s books. I particularly liked the autism activists who arose and grouped together with the development of the World Wide Web and collaborate with others in the disability advocacy groups; less welcome was the in-fighting and one-upmanship amongst the various autism organisations, but this is typical of all  movements and again, needs recording.

The book makes a convincing argument for two main strands: one, that we don’t have an epidemic of autism, but a rise in diagnosis (a process which he pulls apart forensically and convincingly) and the other that there are huge benefits to neurodiversity, much as there are to biodiversity: different kinds of minds are needed for different situations, and we shouldn’t strive to make everyone uniform.

This book will suit … anyone interested in autism and Asperger’s Syndrome (with the caveat that some stories of the Nazis and of treatments meted out in the 20th century could be found distressing).

Book reviews – Welcome to Biscuit Land and Are We Nearly There Yet? plus four acquisitions

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Sept TBRWell, my TBR is not really looking like this any more, as I seem to have been all about acquiring books in September. More on that later: first I have reviews of two memoirs, both interesting and affecting in their different ways. I read both of these on my Kindle, as I decided to take it on my recent trip to Kingston and London, to escape having to carry too many books around (I solved this issue by almost immediately buying five books. Oh well). I had a couple of train journeys and some nights alone in my hotel, so got through quite a lot, and I’ve decided to share the index to my Kindle on my TBR posts in future, as it’s so easy to click-click-click then forget you have them!

Jessica Thom – “Welcome to Biscuit Land”

(Kindle e-book, no idea when I acquired it)

Jessica is the young woman with the neurological syndrome, Tourette’s, who people may recall meeting on Stephen Fry’s TV series about language and words. She blogs at Tourettes Hero, and this book shares a year in her life, I imagine drawn from earlier blog posts. As with the “Moonlight Blogger” book, the format does make it a little bit disjointed, with episodes from daily life interspersed with more general explanations, but it’s still very well worth reading.

Brave, honest, unflinching in her descriptions of how people behave towards her – good and bad – and of necessity using some swearing, etc. (not to say that Tourette’s is all about swearing, because it’s so much more, and less, than that, but there are swear words in there, so watch out if you’re easily offended), it’s a moving and anger-inducing yet also very funny book. You do get something of a feel for what it’s like to be Jess in her daily life (the “something” is not from a lack of good writing or explanation, but because it’s truly impossible to imagine what it could be like to get trapped in the world of tics but also draw immense joy in life and creativity from them) and she very usefully guides the reader through how she would like to be treated and things to look out for when interacting with someone with Tourette’s.

Although it is funny and life-affirming, it is also moving, and as Jess’ condition changes and deteriorates, it’s a testament to her hugely supportive friends and family and the NHS and those workplaces and officials that are understanding and caring.

Ben Hatch – “Are We Nearly There Yet?”

(Kindle e-book, no idea when I acquired it)

Hatch takes his family on a madcap, months-long driving tour of the UK, testing family-friendly hotels and attractions and trying to keep his young kids happy and his marriage together while compiling the guidebook they’ve been commissioned to write. But he has some health worries of his own, and then his dad receives a devastating diagnosis, and both sets of episodes, plus several involving their children are told in excruciating, harrowing detail.

While much of the travel stuff is amusing, especially when they visit Birmingham and stay in the Rotunda, the family stuff is so raw, like a cathartic therapeutic writing experience more than a professional narrative with the necessary amount of detachment. Don’t get me wrong – I feel for the author in his struggles with his identity within his family and facing up to an exceptionally difficult situation, but the harrowing medical details sit a bit uncomfortably with the warts-and-all but generally jolly travelling sections.

I did read on, and I felt guilty when skipping the more detailed medical bits as well as guilty for reading these details of someone’s life – I really would recommend you not read this book if you’ve lost a family member recently or indeed have elderly parents, as it might be a bit close to home. It’s not a bad book as such, but it was too uncomfortable for me.

———-

Sept 2014 11I’ve had a bit of a book-buying splurge, as I was in the local charity shops with some LibraryThing friends at the weekend, where I found a Maeve Binchy I’ve not read or got (how so?) and a Noel Streatfeild autobiography I didn’t know about at all, so that’s exciting. I saw a book that I wanted to buy a friend for their birthday, so I popped back to one shop today and found that book had been sold (of course it had) but there were some more lovelies, including this interesting Virago crime novel by “Amanda Cross” (pseudonym for Carolyn Heilbrun, apparently), which is way down a series but not a series I’ve ever seen before. I also, while calling M to check whether my big “Forsyte Saga” omnibus included books 1-3 or 1-6 (it was the latter, so I put down the copy of 3-6 I’d grabbed), remembered to check the state of my “I have 2/3 of each of the trilogies” Robertson Davies issue and picked up “The Salterton Trilogy”, of which I only had one volume already. I haven’t read any Davies for years, although I did read most of him in a big chunk back in the 90s, so this is a nice addition to the shelves. And I have been doing a lot of weeding lately (including finally getting rid of some an ex-friend gave me which I won’t read again and don’t need for sentimental reasons any more) so there will be space on the shelves for these, honest!

Have you read any of these? What about the ones I’ve reviewed? What are you reading at the moment? Are you as behind with your reviewing as I am?

NICK VAN BLOSS – Busy Body: My Life With Tourette’s Syndrome

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Bought 24 Jun 2007 – Bookends

An excellent, uncompromising memoir of a life, as he puts it, “with Tourette’s rather than OF Tourette’s”. Van Bloss is extremely honest and lacks self pity. He tries to give a clear picture of exactly what it’s like to have Tourette’s, then weaves it into his life story. Not just another “misery memoir”; this guy can *write*, and I hope he has started to write fiction too, as he mentions at the end of the book.

I am going to register this on BookCrossing and offer it on a bookring, to share this remarkably clear, lucid and readable memoir.

CLARA CLAIBOURNE PARK – Exiting Nirvana: A Daughter’s Life With Autism (May read)

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Bought 19 Feb 2007 (Bookends)

Obviously annoyed by the I-can-cope-with-life memoirs of the higher functioning Aspergers people like Temple Grandin, Park details life with Jessy, her severely autistic and still-dependent daughter. This follows up on a book about Jessy’s childhood which I haven’t read, and adds in years of observation. But it just didn’t engage me much, although I will add it to my collection on this area.

DANIEL TAMMET – Born on a Blue Day

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Acquired via BookCrossing 26 Apr 2007 – on a bookring (destined for Linda but I was on the ring anyway so grabbed the book while it was with me!)

Hm. I finished this the other day but I’ve been wondering what to put down.

While I recognise his achievements and as another reader did, congratulate him on pushing himself to the limits, I found the language that was used to express Daniel’s words in the book seemed a bit over-simple and almost patronising. Don’t get me wrong – lots of ASD people do have very simplistic thought processes and explanations of them. But I don’t believe they would write a book in that way, having an understanding of the registers to use with speaking and more formal writing. I thought it seemed to pander to the “Curious Incident of the Dog in the Night Time” reader and I would have preferred to see some sections of direct thought like this and then some more formality and maturity in the writing. I am pretty sure he could write in this way, with reference to Temple Grandin, Sean Barron, Donna thingummy etc.

So, that was an annoyance to an extent – and then I have a block on Maths so I didn’t engage with those parts. I found it a fairly interesting read with some parts to recognise and celebrate, but I prefer the work of the other writers mentioned and, indeed, fictionalisations like “Speed of Dark”, which really put across the Aspie mind very powerfully.

And no disrespect to the author – I have a feeling this was in the editing.

TEMPLE GRANDIN / SEAN BARRON – Unwritten Rules of Social Relationships

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21 Jan 2007 – birthday present from Matthew

Written for people on the Autistic Spectrum, their families/teachers, and interested parties, this is a fascinating look at how Grandin (one of my all-time heroes) and Barron (whose autobiographical work I have also read) have coped in their very different ways with the obligations, catches and downfalls of human relationships. The sections of direct experience are linked smoothly by the editor (Veronica Zysk) and the whole is fascinating and very well done.

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