More on books – hard copies this time

by Seana Smith on Saturday, April 3rd, 2010

Hope readers are enjoying a bit of a break over Easter and a few delicious treats.  I’m posting early as I will be away with the family next week.

Here is another avenue for those wishing to avoid the huge postage costs involved in buying books from the USA or UK.  Have you heard of Footprint Books and did you know you can order direct from them and even visit their warehouse if you are in Sydney?

Footprint Books  is a book wholesaler which imports many ASD-related titles including the entire list from Jessica Kingsley Publishers.

www.footprint.com.au

You can browse their website to find their books, although it isn’t very user-friedly.  If you know of a book you’d like to get hold of then doing a search for it on their site is the easiest thing.

I guess this is similar to the situation with Book in Hand, the website isn’t great for browsing but good if you know what you want to buy.   Maybe it’s a best to browse on Amazon and then check with our local Aussie suppliers.

Also, buyers are welcome to visit the Footprint warehouse during business house Monday – Friday, it is in Warriewood on the northern beaches.  So lots of browsing opportunities if you can make that journey.  There’s nothing like picking a book up, flicking through and feeling its weight before you buy it…. love that, for all my love of the speed and price of e-books.

Footprint can also send you a opy of the latest Jessica Kingsley Publishers brochure, there is an amazing range of books and educational materials there, quite bamboozling in fact.  But worth getting to know and a must for the teachers in schools and all early intervention providers.

And just  quickie… here’s a blog written by the prolific writer and ASD mum, Valerie Foley:

http://jumpontherollercoaster.blogspot.com/

There’s a nice story there about Easter and also news that the song Valerie wrote, Through My Eyes,  has reached over 30,000 views on Youube.  Well done Valerie!   Go the Aussies!

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Book Review – The Complete Guide to Autism Treatments

by Benison O'Reilly on Tuesday, March 30th, 2010

I was recently given a copy of The Complete Guide to Autism Treatments (2007), by Sabrina Karen Freeman. Dr Freeman is a Canadian with a doctorate from Stanford University and a daughter on the autism spectrum.

My alarm bells tinkled when I noticed it was published by a company called SKF Books (Sabrina Karen Freeman?); that is, it appears self-published. That’s always a slightly worrying sign. Is it a book written by someone pushing an agenda?

Well, yes, Dr Freeman is pushing an agenda, but it’s not an agenda driven by self-gain. She is promoting science-based treatments for ASD and thus I thoroughly approve.  It’s a no-nonsense book, with a no-nonsense cover, which I suspect reflects the personality of its author. Dr Freeman calls it as she sees it.

In essence The Complete Guide to Autism Treatments is a longer and more comprehensive discussion of Chapters 4 (Early Intervention) and 6 (The Medical Maze) in the Australian Autism Handbook.  (This is not meant to be a criticism of the AAH—we always intended our book to be an introduction to the topic of ASDs rather than a definitive account!) If there are any parents out there who are interested in reading more about the science behind autism treatments they could do worse than buy this book.

Do I have any criticisms? Yes, the book is a little bit gung ho in its endorsement of intensive behavioural intervention—suggesting trials comparing it with other less-proven early intervention models would be unethical—but she’s right in her assertion that it is one of the few true evidence-based treatments for ASDs. And, though this is hardly the author’s fault, it was written in 2007 so some of the research has moved on from that time—an unavoidable downside of print publications.  (On that note, we are planning to publish a second, updated edition of the AAH in late 2011.)

Section One of the book is called: What Works and What Doesn’t? and is a therapy by therapy dissection of the various early intervention models, biomedical treatments, speech and language therapies and so-called ‘miscellaneous’ therapies (such as sensory integration, art and dolphin therapies). Dr Freeman looks at the evidence—or more commonly the lack of evidence—supporting these interventions.

Section Two is even more useful. It’s entitled How Do We Know What Works and What Doesn’t. If a parent applies the principles explained in this section, they will have the skills to examine the claims made about any new therapy they encounter, and be able to discern real science from ‘snake-oil’ (to use the author’s term).  Just as the catchphrase from the movie Jerry Maguire is ‘Show me the money!’; Dr Freeman’s is ‘Show me the data!’

The conclusion of the book has a great section called ‘Red flags for quackery’. I won’t list all the author’s points, but do especially like her observation that ‘glossy sell sheets and videos’ for a therapy are a quackery red flag. As she explains: ‘Generally scientists do not waste grant money on attempting to sell their research, and then take it prematurely out of the lab and into the population at large. Genuine scientists are the least likely to use marketing tools of persuasion.’

Anyway, if I’ve piqued your interest check it out (not sure if it’s available as a e-book, Seana). And don’t forget World Autism Awareness Day on April 2nd.

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Ten Things Every Child with Autism Wishes You Knew (or occasionally need to be reminded about)

by Benison O'Reilly on Sunday, January 10th, 2010

I have mentioned before that I go through stages when I steer clear of books about autism. Sometimes it’s because of work commitments (I have two other writing projects at present) and sometimes it’s just because I want to read for pleasure.

Anyway I’m on holidays right now and decided, as penance for all my partying and overindulgence in December, to forgo the trashy novel and tackle an autism book that has been sitting on my bedside table for months, staring at me in an accusatory fashion, as if saying, ‘You bought me. Why don’t you read me?’

I don’t know why I kept avoiding it — it’s such a slim volume, a ‘knock it over in a couple of hours’ book.  It is, as you may well have guessed, Ten Things Every Child with Autism Wishes You Knew (Future Horizons, 2005), by American author and ASD mum Ellen Notbohm.

Well, I’ve read it now and can give it the big thumbs up.

My only qualification is this:  it’s liberally sprinkled with anecdotes of success relating to Ms Notbohm’s own son, who I have to say comes across at very high functioning, and I imagine this might grate for some parents of children with more profound disabilities. (It even grated a bit with me – it’s impossible not to compare). I’m sure many of her son’s achievements came about as a consequence of Ms Notbohm’s wonderful committed parenting, but I’ve known equally committed parents who have not been fortunate enough to witness these outcomes.  I think the book would be stronger if she used anecdotes showcasing a greater range of children to illustrate her points.

However, it’s a minor quibble.  It’s a warm hearted book from a warm hearted ASD mum, who preaches acceptance and understanding. In my opinion the most important of her ten ‘things’ are these:

• *I am first and foremost a child. I have autism. I am not primarily ‘autistic’.
• *Please remember to distinguish between won’t ( I choose not to) and can’t ( I am not able to).
• *Please focus and build on what I can do rather than what I can’t do.
• *If you are a family member please love me unconditionally.

I wish more parents and educators would embrace Ellen Notbohm’s philosophies, focusing more on what children with ASD ‘can-do’ instead of ‘can’t-do’.  The latter approach is probably setting many young people up for self-esteem problems.

Not that I’m claiming perfection on this point; on the contrary the book was a timely wake-up call for me after I lost my cool with Joe for being too scared to go on most of the rides at the (very expensive) fun park we attended the other day. When he insisted on playing 18 holes of minigolf in the baking sun before we left I should have celebrated his interest in and perseverance at the game, rather than grumble on about being hot and tired.

So, if like me you’re bit of a jaded ASD parent, I’d recommend you get hold of a copy of Ten Things Every Child with Autism Wishes You Knew to remind yourself what it’s all about. I’m planning to stick a couple of inspirational quotes on my fridge when I get home.

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Look Me in the Eye

by Benison O'Reilly on Friday, October 30th, 2009

I’m a great devourer of books in general and books about ASD in particular, although I do go through times when I need a break from all things autism and during those periods read about anything but ASD.

Anyway, after a few months’ hiatus I have just finished reading Look Me in the Eye: My Life with Asperger’s by John Elder Robison (Bantam, 2007).  This book was published a while back, so forgive me if you’ve already read it and I’m a bit slow on the uptake, but I wanted to comment on how much I enjoyed it and how it helped me better understand my son, Joe.

Just after Joe was diagnosed, at age three, someone kind recommended I read Temple Grandin. I dutifully bought one of her books, but it was too early. I didn’t dare imagine my little blonde cherub as an adult with autism. That future seemed way too scary.  And while Temple Grandin is definitely a poster girl for autism success, she seemed at the time…well…a little humourless, and humour is a big part of our lives.

I really need to go and read her again now. Maybe she isn’t humourless at all. Maybe she is wonderfully droll, and I just failed to pick it up five years ago because nothing seemed very funny to me at the time. Now I have reached the stage of acceptance where I can imagine Joe as an adult and, if his present trajectory continues, hopefully working with computers.  We regularly drive past the Microsoft headquarters in Sydney and one day he told me he plans to work there when he grows up. Fingers crossed.

But back to Look Me in the Eye. It’s a wonderfully entertaining reading and definitely funny in parts. I loved reading about John Robison’s vivid imagination and tall story telling; the day, as a child, he realised that when someone made a comment you were expected to make a related comment back; why he finds it distracting to look people in the eye; that he often doesn’t even know when he’s fidgeting (Joe is a big fidgeter) and how his wife knows the right things to do to calm him down.  Lots of other things I’ve probably forgotten too.

However, it was the chapter called Becoming Normal that really caught my eye.  In that he talks of being, at the age of 16 years, before two game-show doors:  Door Number One, the ‘anxiety-filled, bright and disorderly world of people’, and Door Number Two, the comfortable world of machines and circuits. He chose Door Number One and has no regrets, even though he feels he has lost some of his savant skills as a consequence. Door Number One is the door we are gently edging Joe towards and I was pleased to have John Robison’s endorsement.

Of course my Joe isn’t John Elder Robison, but I do think he seems a little bit like him.  I heartily recommend Look Me in the Eye to other parents, particularly parents of children with Asperger’s, as an insight into the world of ASDs.  Books like this can only help our understanding.

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Challenging the child with ASD

by Benison O'Reilly on Wednesday, August 19th, 2009

It’s difficult to open a magazine or newspaper or turn on the TV these days without reading or seeing something about autism.  I have a subscription to Marie Claire magazine and the August issue contained an article about Rupert Isaacson, Kristin Neff and their son Rowan, who has autism. The family travelled across Mongolia on horseback, visiting shamans, in an effort to help Rowan.  The five-year old was apparently transformed by the experience:  his tantrums stopped, he became more sociable, and toilet trained for the first time. It’s a compelling story, one which was also featured on Nine’s Sixty Minutes and in the Sydney Morning Herald.

At first I was sceptical. Not another wacky ‘cure’ for autism, I thought. However, by the time I’d finished Kristin Neff’s article in Marie Claire, she’d swung me around.  Her conclusion:

Was Rowan cured of his autism? No. He is still autistic. But he’s now so functional that some people have trouble telling he is “on the spectrum”. Was it the shamans, or simply the effect of taking him to a radically new environment and pushing him to his limit? I honestly don’t know.

After reading their story I am not so surprised at Rowan’s transformation, even if not 100% convinced that shamanism played a role.

In essence, this is the approach we take with our son Joe. We (well, particularly my husband) involve him in everything. He plays soccer (not very well), goes camping and bowling and bushwalking, and does all the things a typical child would be expected to do, just with a bit of extra support.  Joe keeps improving, too, although we cannot definitely point to his lifestyle as the cause of this.

Sometimes there is the temptation not to challenge individuals with ASD:  to keep their lives on even keel and only do the things that they are already comfortable doing, but we need always to remember that limiting their life experiences may just limit them.

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