 Specialised Driving Lessons for ASDby Seana Smith on Tuesday, April 20th, 2010It just so happened that Tom had been saying to me recently: “I can’t wait until I can learn to drive, Mum.” And I had been thinking: ”Whaaat!!??***” Panic !! Tom is only 13 years old, but time is speeding by and he is getting bigger and bigger just as fast. He goes to mainstream high school and he reckons he’s a pretty mainstream kind of guy. Tom loves watching Top Gear, so why wouldn’t he expect that he’ll be able to learn to drive at 16 or 17? Only…. his reactions really can be quite slow, he has a major language disorder and studying isn’t his thing, reading the road rules and understanding them will be a challenge.. and… and…. it’s very complicated. But it’s also simple in a way. Tom goes to mainstream school but he gets extra help. Tom will want to learn to drive. He’ll need extra help. And again I find myself so, so grateful to the families and professionals who are pushing things forward for our kids. Just as Tom was asking about learning to drive, I was sent an email mentioning: And then another email with a link to an ABC report on the service this unit is offering for learner drivers with Aspergers. http://www.abc.net.au/pm/content/2010/s2857542.htm Great… I think I should book him in now. Actually, that’s not really such a joke…. you know how long waiting lists can be. As with many things, I will try to delay Tom getting started with driving until he is older than his peers, but it’s marvellous to know that there may be some methods of driving instruction well suited to him. And if this is happening in Sydney, then hopefully it will be too all over the country. In time. Ah we parents need such patience alongside our pushiness, don’t we?
 Autism at Easter – good news weekby Benison O'Reilly on Tuesday, April 13th, 2010It’s the Easter holidays and in our household that means one thing—well two things, actually, Easter eggs and the Sydney Royal Easter Show. The first is easy enough to accommodate, but the second…hmm. If any of you have read the Australian Autism Handbook, you’ll know that Joe, despite having a few sensory issues, loves the Easter Show—the whole, noisy, smelly, crowded deal. As a result we have to go every year, rain or shine. In a development of sorts he asked to take a friend from school this year. I regarded this as a mixed blessing. It’s wonderful that the desire for friendship is there, but he lacks the social skills—the sharing, the reciprocal conversation—to really connect in a friend-like way. In the end I was unable to oblige anyway: all the kids we asked were either away or sick or otherwise engaged that day. Joe took the news badly. He cried in fact, and when my little boy is sad I am doubly so. I spoke to a few people about this, and the consensus is that his desire for friendship is ultimately a good thing. It is just my job to keep working with him, so eventually he does develop the skills to maintain a real connection with his peers. It will probably be based around IT and computer games, and with other kids on the spectrum, but that’s okay. When we made it to the show he‘d gotten over his disappointment, and was happy with his two show bags and four rides. It was a joy to witness his excited smile as he flashed by me on the roller coaster. It was less a joy to join him on a ride called the ‘Wild Raft’, which left me feeling nauseous for hours. The whole family is off to Hong Kong tomorrow for a week. I’ve decided Joe’s dad can take his son to Disneyland whilst I go shopping. Anyway, as we’re in holiday mode I’m not keen on the idea of dissecting any science, so I’m just going to mention a good news story which appeared in the media this week. It’s about Specilisterne, a Danish software company, where every worker on the payroll has an ASD. It was founded by a gentleman called Thorkill Sonne, who is the father of a boy with autism. Sonne was a keynote speaker at the Asia Pacific Autism Conference held in Sydney last August. Unfortunately I was manning the AAH stand and didn’t get a chance to hear him speak then, so I was very interested in this report from (American) ABC News. According to the report Sonne: ‘…means to change the nature of the way society views disability. Sonne believes that workers with high-functioning autism have different brain wiring that gives them an edge’. He lists good memory, a strong attention to detail, persistence and ability to follow instructions as skills that are important in software testing. It’s refreshing for a change to see someone looking at autistic traits as strengths, rather than disabilities. As I’ve mentioned before, Joe is a mini-IT guru in the making and if more companies do decide to follow Specilisterne’s lead his future employment opportunities could be bright. Maybe he’ll even pick up a few friends along the way, too.
More on books – hard copies this timeby Seana Smith on Saturday, April 3rd, 2010Hope 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. 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!
Book Review – The Complete Guide to Autism Treatmentsby Benison O'Reilly on Tuesday, March 30th, 2010I 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. What’s next on your ASD bookshelf?by Seana Smith on Thursday, March 25th, 2010
 Kindle for iPhone app
What’s next on your ASD bookshelf? Read on for some suggestions on how to minimise your book buying bills, especially if you have an addictive Amazon habit. I’m taking my four children up to a resort in Queensland for a few days these holidays. My husband works overseas so I’m a mum alone – wish me luck. Anyway, my thoughts turn optimistically to wondering which books I might take to read. Trashy romance novels – yes! But I’ll also take a couple of the ASD books which are on my shelf. The first one has been there for a couple of months, it’s called” A Parent’s Guide to Asperger Syndrome and High Functioning Autism” written by a trio of heavy hitters in the USA, Sally Ozonoff, Geraldine Dawson and James McPartland. I’m interested to see how they write and what they say, will blog on this later. The second is actually not on my pine bookshelf but on my digital bookshelf, it was cheap and easy to get and I thought I’d share the steps. I’ve been wanting to read Rupert Isaacson’s “The Horse Boy” for ages, it sound really interesting and well written too. So, I had checked in bookshops and on Dymocks online and it costs around $35. A friend said she’d loan me hers but the weeks have rolled by…. So…. I have my trusty iPhone and one day I learned about the Kindle for iPhone app and downloaded it quick smart. A day or so later I was at the gym taking a lazy, leisurely stroll on the walking machine. I got out my iPhone and opened the Kindle app, then touched the “Get Book’ icon and typed in “The Horse Boy.” Up popped the book and I touched here and there to buy it. I didn’t even have to enter credit card details as they are already at Amazon, so I could use the 1-Click purchase. And, miraculously, right there on the treadmill, the book was sent to my iPhone. HOW DO THEY DO THAT???? I was gobsmacked, I would have fallen off the treadmill if I hadn’t been going so slowly. Cost of the Kindle version of the book? $6.50! Delivered instantaneously, saved on the cost of the petrol to get to a bookstore as well. Blimey. Do a search on the Kindle Store section of the Amazon website and you will find dozens and dozens of ASD books available, including lots of the classic must-reads.
For we Aussies, this is a great step ahead, much easier and cheaper access to books and information than has been available before. I’m not saying the iPhone is the best digital book reading device, it isn’t, iPads and Kindles will soon become more popular, I’m sure. But it’s a start. Nor are digital books perfect. You can’t loan them to your friends and you can’t sell them when you’ve read them. But at that price, I’m delighted nonetheless. Now then (Benison, are you reading?) it is actually NOT THAT HARD to work this all out. Your kids can help, especially some of the ASD kids. So, for the iPhone friendly, I say… get that Kindle app. So that’s my reading list for the holidays. I wonder if I will be able to wrestle the iPhone away from the kids long enough to get past Chapter 1?
 Fabulous Breast Care Nurses…by Lucy Blunt on Wednesday, March 24th, 2010Well, what a blast Jane and I had last week. I was invited to speak about the book at the 12th Breast Care Nurses Conference – an absolute honour (and an absolute hoot!!). There were 311 delegates (can you believe it??) of which 43 were McGrath Foundation nurses. They are the most lovely, dedicated people – we were blown away. I spoke to one wonderful nurse from Cooma, who had funded herself to be there ($500) and was only being paid for one of the two days of the conference – however felt that it was important to attend for her knowledge - and to keep up to date with her colleagues. Now that doesn’t happen in every profession does it?? So, I spoke about Talking to your Children about Cancer: The Book – and was delighted by the warmth and encouragement with which it was received. I do wish that Eloise had been there to see how useful the book can be as a resource – and how appreciative people who work with breast cancer sufferers at grass roots level are – both for the resource and for her wonderful illustrations. She is so proud of having illustrated a book, and yet at times so reluctant to speak about it, because it is tainted by the “breast cancer is in our family” brush. What was truly wonderful however, was meeting delegates who had come together from all around Australia. People from Perth, Darwin, Mt Isa, Melbourne, Tasmania, Adelaide, Brisbane etc etc, as well as some wonderful people from New Zealand and even Malaysia!! It was great that it was so well attended. Add to that the very fun dinner – MC’ed by Jean Kittson (who was absolutely hilarious) – all in all a terrific event. On the home front, Eloise has started high school this year and young Chloe has also started in Year 5 at the same school (bliss to have them in the one place again). Chloe has just finished illustrating the new book – which is on bullying – and is extremely excited, but more about that later… With warmest wishes, Lucy What’s in an autism diagnosis, Part 2by Benison O'Reilly on Wednesday, March 17th, 2010I love Seana’s latest blog about the iPhone Apps. She is such a tech-head, unlike her co-author, who learns just enough about technology to function in this modern world, but no more. However, the next generation of my household may turn out to be quite different. I mentioned that Joe has a computer obsession last time. His latest irritating habits are to download random bits of software from the Internet and to try and reprogram our computers using MS-DOS. He is just nine years old, too! I came in this afternoon to discover a blue screen on my laptop – never a promising sign. My budding computer technician (aka Joe) looked decidedly guilty, but couldn’t help proclaiming, ‘It’s the blue screen of death!’ Where does he learn these things? Our long-suffering professional computer technician, who we have to call periodically to undo the worst of Joe’s handiwork, has suggested we give Joe his own, old computer that he can trash to his heart’s content. I’m not so keen, however, as we would be giving in completely to his autistic obsession, never a wise thing in my opinion. Anyway, speaking of obsessions, I thought I’d continue on where I Ieft off last time, discussing the proposed DSM-5 for autism spectrum disorder. We mentioned last time the elimination of Asperger’s syndrome and PDD-NOS as separate diagnostic categories, but there are other changes afoot too. In the DSM-IV there were three domains of deficits for autistic disorder: qualitative impairment in social interaction; qualitative impairments in communication; and restricted, repetitive, and stereotyped patterns of behaviour, interests, and activities. In the DSM-5 these three domains become two: 1) Social/communication deficits 2) Fixated interests and repetitive behaviours The reasons for this decision, were as the American Psychiatric Association explains: • Deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities • Delays in language are not unique nor universal in ASD and are more accurately considered as a factor that influences the clinical symptoms of ASD, rather than defining the ASD diagnosis • Requiring both criteria to be completely fulfilled improves specificity of diagnosis without impairing sensitivity Another proposed change, which is overdue, is the inclusion of ‘unusual sensory behaviours’ as a component of the diagnostic criteria for ASD. In the DSM-IV no mention is made of sensory behaviours, even though, as many parents of children on the spectrum can testify, some of these behaviours can be the most challenging of all to manage. The last important change proposed in the DSM-5 is the recognition that, whilst ASD is a neurodevelopmental disorder and therefore must be present from infancy or early childhood, it may not be recognised in some individuals (notably, those with a current diagnosis of Asperger’s) until later childhood, when life starts throwing up new social challenges. Despite his remarkable progress, Joe is not a ‘recovered’ child and remains somewhere on the autism spectrum. I think we can safely categorise his computer obsession as a fixated interest, although on the bright side it may also provide him with a career down the track. Fingers crossed…. It’s all ‘Appening- on your iPhoneby Seana Smith on Sunday, March 14th, 2010My son Tom was diagnosed with ASD ten years ago…. Has much changed since then? Are treatments any better? Are diagnoses that much earlier? I had expected enormous leaps over ten years but progress in most areas remains slow. Hmmmm….. still, there have been some significant changes, and most thrilling for the techie types are the many ways new technology can help us teach our kids. Many of our children with ASD have splendid visual skills and we can help them use this strength to develop in other areas. Back in the day, when we started early intervention at our house, we didn’t even have a laminator. I used to snip pictures out of magazines and glue them to little white postcards to make all the (hundreds! ) of flash cards needed. Those were the days… no they weren’t! These days… crivens… it’s fantastic how technology has improved, and the iPhone is fast becoming on of the most useful learning tools. I knew from friends doing early intervention that lots of iPhone Apps are proving very useful but hadn’t thought there were Apps for older childrenMy kids fiddled with my iPone enough. Tom’s favourite game is one called “Shut up!” that yells at you whenever you say anything. Not that educational. My favourite one was about wine, more educational but can lead one astray. Anyway recently I fired up iTunes, went to the Apps section and typed in “autism”… and a zillion came up… well, not quite, but 110 did. That’s a lot, and there would be many other words to search as well. What I love is that loads of Apps are free, and there are usually free test Apps for the ones that do charge. Here’s what I’ve downloaded so far: 3D Brain – I love it, a rotating coloured brain, you can look at the various parts and learn heaps of stuff. Excellent for when reading books about the neurology of autism. (I must get out more.) Model Me Going Places – social stories on restaurants, hairdressers, shopping and more. Stills pictures, text and words. I would switch off the sound and talk through it myself. First Words Sampler – this is a reading and spelling game for young children – lovely and visual. The Hidden Curriculum On the Go – for older adolescents and adults. This is text only and a fair bit ahead of my 13 year old but it will be very handy. One example: ”Only borrow money from friends and only do so when absolutely necessary. Then pay back your friend as soon as possible.” This is totally relevent to us this week- wish it came with visuals as well as text. Have you used any Apps? Could you let us know. I am planning to write up an information sheet on them to put as a free download on our website. All advice welcome. In the meantime, yesterday Tom managed to drop my iPhone and crack the front glass then he almost immediately dropped his own phone down the toilet. So, my most important advice about the use of these magical mobile devices? Make sure they are insured.
What’s in an autism diagnosis?by Benison O'Reilly on Wednesday, March 3rd, 2010I’ve had one of those days today. Joe is home from school with a virus and fever. Unfortunately I had no choice but to drag him along with us when I took his older brother to the paediatrician’s and then on to big brother’s school: a strict, boys only school that accommodates 1400 young lads, ranging in age from ten to eighteen. I don’t know about your kids but Joe always becomes more autistic when he’s sick and today was no exception. He simply could not control his obsessions and kept inappropriately darting into offices at the paediatrician’s and brother’s school to look at computers. He is interested in Windows® operating systems – don’t ask me why. When we were finally on our way back to the car we passed a couple and their young son, dressed in school uniform, heading the other way. I knew they were on their way to an interview for a year 5 placement at the school in 2011. I knew because my husband and I went through the same process, twice, in earlier years, for Joe’s older brothers. It was a sad reminder how my little boy is different. Joe was on the school’s waiting list like his brothers before him, but when his name came up we politely declined an interview. We could never send him to such a boofy, blokey school. It’s the sort of school where you either sink or swim. Joe would sink. Instead I have his name down at a couple of expensive private schools that boast additional support for kids with special needs. Hopefully he will get a placement in one of these schools for Year 7 (mercifully still some years away). Whenever I get a little down like this I have to remind myself how far he’s come—light years—since diagnosis, six years ago last week. Which brings me to the news, admittedly a couple of weeks old, that the American Psychiatric Association have released their draft Diagnostic and Statistical Manual (DSM)-5, which, as widely predicted, has eliminated Asperger’s syndrome and PDD-NOS as diagnostic categories and instead bundled everyone on the spectrum under the umbrella term, autism spectrum disorder. Their reasons: Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”. This decision has provoked controversy. Some parents are aggrieved that their bright, hyper-verbal kids with Asperger’s will been lumped together in the same category as individuals with severe disabilities. I can understand this. Asperger’s sounds a more palatable disorder to most people, especially when so many misconceptions (‘they won’t look you in the eye’, ‘they don’t like people’, ‘they can’t talk’) about autism continue to exist. However, many kids with Asperger’s currently don’t get the support they need at school and maybe a different label will mean their difficulties will be taken more seriously in the future. Also, when I was writing the Australian Autism Handbook I spoke to a leading paediatrician who pointed out that a person with severe Asperger’s (very socially withdrawn, very rigid, very anxious) may well be more disabled than an individual with mild speech and developmental delay, but better social skills and an ability to go with the flow. As others have said, we need to remove the stigma associated with autism and the new DSM may turn out to be an important step. If you’d like to look at the DSM-5 proposed revision for autism spectrum disorder the link is here: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#
A safe place to come for advice, support and inspiration.by Seana Smith on Tuesday, February 23rd, 2010What a lovely phrase that is. It’s just what we wanted the Australian Autism Handbook to be, but didn’t ever express it quite so well. “A safe place to come for advice, support and inspiration.” Have you heard of Autism United? Autism United is a new network for parents, professionals and people with an autism spectrum disorder. It has been created by a mum called Nicole and uses the Ning platform. Ning is a simple to use online social networking site builder. You can join and then post photos, videos, add your comments to the blog, ask questions in the forums… lots of ways to communicate with others. In the past I’ve been a very active member of some Yahoo groups, and am also a fan of some good autism-related Facebook pages. But I think the Ning framework is the best I’ve seen yet – for me it is lovely to see photos of members. For we visual people it really helps to build the community. You can find out more about Autism United at the website:
I emailed Nicole to ask why she had started Autism United and she replied: “The main reason that I wanted to start this network was because although these days you are hard pressed to find anyone who is not affected by autism, most of us are still dealing with it on our own behind closed doors. I figured that if I feel lonely, isolated and often at a loss then, many others must feel the same esp those who are just starting out. I had been talking about doing something like this for some time as I felt there was a real need. All the challenges that we faced over Christmas gave me the push to get started.
To be honest I think over the past couple years I have been working through different stages of grief since Dillon’s dx but over recent times was determined to turn that into something more proactive. My vision for this community is for it to be more than a forum, but a real community, be virtual or otherwise. I am hoping that we can make a difference in each others lives and even go the extra mile to make changes.”
I also appreciate very much Nicole’s notes: “Autism United Guidelines So true! We all have enough drama in our lives without finding it online as well. SEARCH The essence of publishing is the exchange of ideas from author to reader, be it through the printed word or increasingly the computer screen. At JCP our authors are highly regarded as leaders in their fields so we have introduced this blog to enhance the connection between author and reader. A blog is real-time communication, interactive and relevant. The author contributes individually on issues that concern them – and our readers have the opportunity to comment and connect. So please read, enjoy and use the JCP blog. Books are only part of the JCP story. acceptance
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