Hazel McHaffie

autism

Mental health awareness

You’d have to be an ostrich to miss all the attention given to mental health of late. It’s Depression Awareness Week this at this very moment. Heartening to see; we can all do with better understanding and sympathy.

Since Inside of Me came out, my own working days have been much taken up with fathoming the extent of provision for adolescents grappling with psychiatric ailments and issues. I had absolutely no concept of the number (hundreds in Britain) of centres and units and teams devoted to this vulnerable group. Impressive. And all this is going on largely unsung and unremarked.

Naturally I did a stack of research before and during the writing of Inside of Me, but now it’s published I’m exploring different aspects of the topics and finding them fascinating. Not only increases my own awareness but all helps when I’m being interviewed or fielding questions at book events.

There’s been plenty of exposure in the media too.  The A Word, on BBC1, is currently unravelling the effect on the Hughes family of young Joe’s autism. It’s still ongoing so I won’t say too much about it meantime. But, knowing a number of people on the spectrum personally, I’m particularly interested in the reactions and behaviours of his parents struggling to accept the situation and deal with the comments and criticisms and insensitivities of other people, what it’s doing to the whole family.

BBC1's The A Word drama

Born on a Blue DayI’ve also been reading a book written by a young man who has synaesthesia as well as Asperger’s: Born on a Blue Day by Daniel Tammet. ‘I just did not seem to fit in anywhere, as though I had been born into the wrong world. The sense of never feeling quite comfortable and secure, of always being somewhat apart and separate, weighed heavily on me.‘ Not surprisingly Daniel craves order, security and predictability; but in many ways his life is outstandingly vibrant and uniquely different.

Numbers are never far from his thoughts no matter where he is or what he’s doing, but he sees them as shapes, colours and textures. Calendars delight him – all those numbers and patterns in one place. On the other hand social interaction is problematic, but if a person reminds him of a number he feels more comfortable around them.

Daniel also has savant syndrome for which he has become a minor celebrity. He can perform extraordinary mathematical calculations and memory feats in his head – outdoing sophisticated computers! He can learn to speak a foreign language fluently from scratch in a week – eat your heart out teens sitting exams this term!

Daniel Tammet was born in 1979 on a Wednesday. ‘Wednesdays are blue, like the number nine or the sound of loud voices arguing.’ Remarkably for the times, both his parents understood his needs and patiently provided a secure and encouraging environment for him, indulged his obsessions and believed in him. What’s more, in spite of the extra care their firstborn required, they went on to have a further three boys and five girls, who, by their noisy and continuous presence, forced Daniel to gradually develop interpersonal social skills. Nevertheless, he would be completely thrown by small distractions – squeaking shoes, inexplicable reactions, noisy breathing, would lose him a game of chess which he would otherwise easily win.

By the time Daniel was 13 he had eight siblings. By the time he was 19 he was ready to leave home and go abroad on VSO work. By the time he was 22 he was ready to live with his partner, Neil. By the time he was 25 he was ready to recite 22,514 digits of pi without error in public for 5 hours and 9 minutes thereby setting a new British and European record. So remarkable has his life been that he became the subject of a one-hour documentary, Brainman, filmed in Britain, the USA and Iceland in 2004. A year later he was confident enough to travel abroad unaccompanied, stay in unfamiliar hotels, stroll down unknown busy streets, and be interviewed for TV in the USA. He attributes much of his prowess to the constant unwavering love and support of his family, especially his parents. But reading his book you get an inkling of his own determination to overcome the odds.

Born on a Blue Day gives a compelling glimpse into a unique mind and life. Precisely and carefully written. Sometimes stilted. Sometimes meandering through detailed descriptions, sometimes diffidently explaining the differentness of Daniel’s thinking. Always gently enquiring, shy and grateful. Much like the Daniel Tammet who comes across in the film.

Brainman

 

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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Neuroscientist or novelist

You’ve probably heard of Lisa Genova. She’s a neuroscientist by background but now also a fantastic novelist.

Her debut novel, Still Alice a fascinating insight into the mind of a young professor with Alzheimer’s – became a sensation and was made into an Academy Award-winning film in 2014. I gave it a four star rating when I reviewed it on my blog and when I chose it for discussion at a Readers’ Day. A brilliant and perceptive book.

Less well known is Genova’s second book, Left Neglected, which I also reviewed on this blog some time ago while I was ill. I loved this one too and it resonated with my own experiences of identity and disability. It’s insightful and lyrical and thought-provoking.

Genova novelsSo I just had to buy her other novels: Love Anthony and Inside the O’Briens. I’ve now read both of them but come to different conclusions about them. This week I want to talk about Love Anthony.

It tells the story of two women: Olivia and Beth. Both have disintegrating family lives; both are left without husbands; both adopt new careers.

Olivia Donatelli’s dreams are shattered when her beautiful little boy Anthony fails to develop normally, fails to speak, fails to engage with her emotionally. Aged 3 he is diagnosed with autism. Aged 8 he is dead. The strain and toll wreck her marriage and deplete all her reserves and resources. She buries herself in remote Nantucket Island until, through her photography, she finds new direction and new answers.

Beth Ellis is the mother of three girls who has just discovered her husband’s infidelity. Struggling to find a new identity she turns to creative writing and begins to write a first person story about a boy with autism. Sitting in the same seat in the same library she feels she is somehow channelling a haunting voice.

Love AnthonyOh dear. I’m afraid this book didn’t live up to my expectations. Neither the writing nor the plot nor the characters are a patch on Still Alice. It doesn’t do for autism what Alice did for Alzheimer’s. And I really didn’t like or believe in the story Beth wrote – the narrative voice became tedious and improbable. So I was startled to read Genova’s own declaration: ‘With Still Alice and Left Neglected, I was a neuroscientist writing a novel. With Love Anthony, I became a novelist.’ Hmmm, is there a cautionary tale there for me?

Tune in next week for much better news about the other one, Inside the O’Briens.

 

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Life interrupted

Boy, what a sweltering July! Record-breaking stuff. The lawns are already brown but the flowers seem to be thriving …

LiliesA good time to be out and about ‘on holiday’ with the children rather than indoors trying to work. Water has featured rather a lot to keep everyone’s temperature under control …Cooling off in the seaanimals provided a happy distraction …Feeding goats by handand some daringly fast travel generated a welcome breeze …Go-kartingBeing in loco parentis to two of my grandchildren for a couple of weeks reminds me of how much effort goes into encouraging youngsters to be courteous, well-mannered and decent little people. We all want to be able to take them out into polite society and not be humiliated or embarrassed, don’t we? It’s not a big ask.

So what would you do if one of yours make rude gestures, or shouted obscenities at complete strangers in shops?  Or let out wild shrieks and blasphemy in a tranquil church? Or abused themselves in public places? What would you think of the parents if you were simply a witness to such behaviour?

No, I’m not describing life chez nous this past fortnight; my own personal experience of such things is limited to that of a passing stranger. But I’ve watched documentaries on the subject, and seen something of the horror for families dealing with compulsive swearing, shouting and antisocial behaviours. Somehow though, up to now my sympathy has been largely with the parents. I couldn’t imagine ever going anywhere with a child who screamed profanities or simply had to tap a door sixteen times, twenty-nine times a day. Or did antisocial things in public places.

My latest discovery, Life, Interrupted by James McConnel, is therefore, an instructive read, although I should probably add a caveat: it might offend the sensibilities of some. It tells the autobiographical story of award-winning composer, James, who started to twitch and sniff compulsively when he was six, and lived with increasing forceful and obsessive behaviours until he was eventually diagnosed with Tourette’s Syndrome at the age of thirty-two. (Hard to believe no one identified his problem earlier; his symptoms were classic.)

Now, I might as well confess from the outset, that I needed to hear this message for very personal reasons. I have a very low level of tolerance for perfectly ordinary nervous tics and repetitive actions – even harmless ones like squeaking shoes, sniffing, picking spots/nail/ears, flicking the pages of a book/end of a pen … I’m not proud of this failing; but it’s inbuilt and inherited, and it’s something I’ve had to live with all my long-legged life. The endless repetition drives me nutty inside; I’ve learned for the most part not to show my irritation on the outside – I think! And hope.

So I’m hugely admiring of the parents, nanny, teachers and fellow students, and girlfriends who managed to overlook the plethora of jerks, sounds and compulsive behaviours that James exhibits – the good and kindly ones at least. There are plenty of boys at his boarding school, similarly bound for Eton, who are merciless to the point of cruelty. And wherever he goes James himself harbours this deep sense that he doesn’t quite fit; he’s a ‘nearly person’. He repeatedly ‘fails’, adding each time to his growing sense of disappointment and rejection. He has no idea how to engage in normal social interchange with his peers; he simply can’t omit any of his rituals in order to get to a seminar on time; he finds it impossible to see past his obsession about the symmetry and rightness of words and numbers to answer exam questions.

Life, Interrupted, though, gave me a better sense of the stranglehold this condition has on the person himself, the premonitory urges he has to fight every single day, the aftermath and consequences of each outburst, the impotence he feels in the face of this compulsion.

James calls his nemesis ‘the Controller‘, and later ‘the Beast‘, and it’s small wonder that he seeks refuge from its pernicious influence in the two things that tame it: music and alcohol. The first soothes it, the second deadens it.

For him it’s more than the occasional shouted expletive or violent jerking; it’s a whole range of feelings which he must constantly fight against or appease:

‘I have this terrible urge to crush boxes of vibrating eggs, touch fridges, check under the bed for men in blue coats, check in lavatories for arse-pecking birds, smash glasses, count baked bean slogans, tap light switches, copy things people say, hold my breath until it hurts, jump off ski-lifts, smash teapots, jerk my leg, arm and neck, sniff almost everything, cough, make faces and grunt like a pig.’

James is an exceptionally gifted musician who studied flute, organ and composition at the Royal College of Music in London, but even here the Tourette’s threatened his success. Only when he was helped to understand his condition, to give it a medical name, and to make an informed choice on its management, did he start to take proper control of his life and career. Since then he has gone on to write hundreds of scores for the theatre, musicals, documentaries and dramas. What a triumph over adversity. His nemesis has become ‘the Brat‘, much more benign and less controlling.

A sobering read especially for an intolerant person like me.

This one (though non-fiction) joins the list that includes Mark Haddon’s The Curious Incident of the Dog in the Nighttime, Jodi Picoult’s House Rules (featuring protagonists with autism); Lisa Genova’s Still Alice (dementia); Ben Elton’s Inconceivable (infertility), etc. All easy enjoyable reads that have helped me develop that little bit of extra sensitivity, understanding and tolerance. Which as you know, is my own aim as a novelist.

Now, back to full time grandparenthood … It’s the turn of the older two children this time, and they start off with more normal temperatures.

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Jodi Picoult as ebook

As you know I have an ambivalent relationship with Jodi Picoult‘s books. House RulesBut I confess I had a bit of a revival of interest when I read House Rules (reviewed on this blog back in February). Super book about autism.

So, when I was deciding which books to sample on the Kindle – just to check whether I really really did want to leap into the twenty-first century – one of the first on my list was Sing you Home. I read it ages ago but it’s taken me till now to get around to posting my comments. Which probably says a lot about my rating of the book.

Sing you HomeThe story revolves around Zoe and Max Baxter whose marriage is on the rocks after a number of failed attempts to have a baby. (Yeah, yeah, I know. I do bang on about these issues.) Anyway, Zoe finds comfort in Vanessa whose work as a school counsellor overlaps with her own music therapy. They go on to ‘marry’ and decide they want children.

Zoe already has frozen embryos left over from her IVF with Max. Using them seems like a no-brainer. But Max is now a born-again religious zealot, vigorously opposed to same sex unions, and he fights Zoe’s claims through the courts.

OK, some of the issues are my territory but that doesn’t mean I’m bound to like books on these subjects. Indeed, I can be super critical of the way authors deal with medicine and ethics. So, what was my verdict on Sing you Home? Hmm.

It’s the usual Picoult formula:
Major social issues
Multiple voices speaking in the first person.
Lots of amateur psychology.
Big social issues.
A courtroom drama

It has one unique feature:
Accompanying songs, the lyrics of which were composed by Picoult herself. An interesting ‘gimmick’, entirely fitting with the story line about a music therapist who reaches troubled people through songs.

A few amusing/thoughtful quotes to make you smile/wonder:
Max on the effect of infertility on their marriage
‘Our sex life had become like Thanksgiving dinner with a dysfunctional family – something you have to show up for, even though you’re not really having a good time … want had become need and then obsession … There was no room in my marriage for me anymore, except as genetic material.’

Vanessa on society’s attitude to homosexuality
‘I remember my mother telling me that, when she was a little girl in Catholic school, the nuns used to hit her left hand every time she wrote with it. Nowadays, if a teacher did that, she’d probably be arrested for child abuse. The optimist in me wants to believe sexuality will eventually become like handwriting: there’s no right way and wrong way to do it. We’re all just wired differently.
It’s also worth noting that, when you meet someone, you never bother to ask if he’s right- or left-handed.
After all: Does it really matter to anyone other than the person holding the pen?’

Zoe’s on school canteen
‘It looks like every other school cafeteria I’ve ever seen – a life-size petri dish breeding social discontent, students sorting themselves into individual genuses: the Popular Kids, the Geeks, the Jocks, The Emos.’

Vanessa’s on court protocol
‘The clerk scrambles forward to make his announcement as Judge O’Neill strides off the bench, so that we all rise, too, like some magnetic after-effect of his anger.’

I liked:
The insights into what music therapy can achieve with the depressed, the dying, the dementing.
The sympathetic and empathetic principal female characters.

I disliked:
The stereotypical portrayal of bigoted right-wing Christianity.
The pseudo-psychology everybody seems to indulge in.
The occasional misuse of medical terms (or maybe it’s simply American shorthand).
The anomalies in the formatting that crept in during conversion.

So, a mixed bag. Not a patch on House Rules.

Oh, just before I go, if you’re weighed down by the stress of Christmas preparations, or feeling jaded by lack of daylight hours, or in anyway down in the dumps, I recommend you go to dovegreyreader‘s post for Saturday December 10. It’s called Security knitting alert …start casting on everyone and it’s sure to bring a smile to your face.

 

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