I was in touch with the blogger Silly Mummy recently.  Like me she has a son with autism spectrum disorder and used to work in TV.

Silly Mummy was an outside broadcast producer/director, something I never did. I did some single camera directing and editing of short items, but mainly lots of producing.

Anyway, when my son was just three I heard about video modelling. I knew he loved TV and had seen him copy some actions the Teletubbies did.

So I got myself a Mac computer as Apple’s editing software seemed the simplest and taught myself how to make little videos for him.

In you’re a parent who is interested in trying video modelling, here is some information to get you started:

The Video Modelling Extract from Australian Autism Handbook

To download, click here:   VM extract from AAH

A document I used to give out at talks

Download here: VM 2-page info

Document on Using VM as part of Early Intervention Program

Using VM in EI programs (This is written for families doing ABA but it’s applicable to any EI, I think.)

Some Posts from Australian Autism Handbook Blog

http://autism.janecurrypublishing.com.au/category/video-modelling

Search on Youtube ‘autism video modeling’

Click here. There are a zillion videos to look at and learn from.

So that’s just a wee collection of initial ideas and places to look for information.

I hope you might find it useful.

Have you ever made any video models for your child?

First the good news, then some not-so-good news, then some more good news to finish.

The autism world has changed a great deal since the first edition of the Australian Autism Handbook was published in May 2008.  Locally, we’ve had greater awareness and some long-overdue federal funding through the Helping Children with Autism package, overseas we’ve seen increased commitment to research, in particular genetic and environmental research into the causes of autism, and, of course, ever-rising prevalence—with latest figures from the US suggesting that 1 in 88 children now has an autism spectrum disorder. Next year we will have revised diagnostic criteria, when the new Diagnostic and Statistical Manual of Mental Disorders (DSM5) is published.

Thus we have decided that a second edition is well and truly due.  We anticipate that the new edition of the Australian Autism Handbook will be something like a bride: with something old, something new, something borrowed and something blue.

Old:  Me, technical information that remains current, and some of the wonderful personal stories and quotes that still resonate.

New:  My co-author, Kathryn Wicks, additional chapters on teen issues and Asperger’s syndrome, and updated information on early intervention, the DSM5 diagnostic criteria, causes and treatments.

Borrowed: The insights of many of our wonderful contributors, some of whom have already agreed to update their thoughts and experiences for the new book.

Blue:  The book’s cover, I hope! I still adore it after all these years.

The next edition is planned for April/May 2013, and will fittingly coincide with the publication of the DSM5, and the new—and controversial—diagnostic criteria for autism spectrum disorder

To the sad news:  Seana Smith has decided she is unable to continue as co-author of the Australian Autism Handbook and is passing the baton to Kathryn Wicks.   Her reasons are mainly personal:  four children ranging from sixteen to five years in age, all with disparate needs, and a husband who works overseas half the year.  However, Seana will continue her association with the Australian Autism Handbook as a parent contributor. As her Tom is now sixteen years old, I’m betting she’ll have some interesting stories to share!

I am so grateful to Seana for the opportunity to co-author this important book and for her friendship over the years.  We will strive to maintain the warm and caring tone that was a signature of the first edition, as a tribute to her.

Now to introduce my new co-author, Kathryn:

Kathryn Wick is the mother of two boys, 11 and 6, the younger of who has high-functioning autism. Watching Darcy grow from a two-year-old who didn’t say “mum” and who didn’t want to cuddle and read,  to a five-year-old who got an “A” for reading on his kindergarten report, has made her an unashamed advocate of intensive early intervention.

Kathryn comes to us with great writing credentials, having been a Sydney Morning Herald journalist for 25 years. She is currently the deputy sports editor and has contributed many oped pieces on autism and early intervention.  She also comes with excellent autism credentials, being a trained ABA therapist.

Kathryn first read the Australian Autism Handbook when her son, Darcy, was diagnosed and already has some great ideas for the second edition. It seems we’ve come full circle!

Will you be lighting it up blue next week?

Myself and the four boisterous bairns will be at the Rocks, watching the Opera House turn blue on April 2nd, to celebrate World Autism Awareness Day.

On a school night. I know.

Sydney Event Details
Monday 2nd April 2012
6:00pm-8:30pm
Hickson Road Reserve, The Rocks (in front of the Park Hyatt hotel)

A fun family event for all, with food and entertainment!

Bring a picnic and join us to show your support for all Australians with autism and the families who love them!

The Light It Up Blue campaign started in the US and has spread all over the world.

Here’s a list of  the events happening in Australia, click to go to the website for more information.

Come along!

Will we see you at the Opera House?  At another event?

Or are you lighting your home or office up blue ?

When I’m buying fiction I prefer to support Australian booksellers, but for ‘autism lit’ I usually pop over to my good friends at Amazon.    One day, while browsing, I spied Autism Solutions and became intrigued. I read on, liked what I saw, and pressed Buy.

The full name of Ricki Robinson’s book is Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child—an appealing and upbeat title with no mention of the word ‘cure’, which is always a turnoff for me.

Dr Robinson is a paediatrician in Southern California and a big advocate for DIR®: Floortime™.  Several chapters of the book are devoted to explaining principles behind this intervention method, which promotes development by encouraging children to interact with parents and others through play and ideologically is at the opposite end of the spectrum to intensive behavioural interventions. (We discuss the philosophy behind Floortime in some detail in the Early Intervention chapter of the Australian Autism Handbook.)

To be honest I flicked over the Floortime chapters, as Joe is way past the early intervention phase. Floortime is not without its critics, either, who point to the lack of independent scientific evidence supporting its efficacy. Viewed in this context, the fact a respected paediatrician such as Dr Robinson thinks it’s the real deal definitely provides food for thought.

That aside, I still got a huge amount out of this very comprehensive book. The early chapters cover much of the same territory as the Australian Autism Handbook: what is autism, what causes it, diagnosis (termed ‘evaluation’ here) and treatment, the latter with a distinct Floortime bent.  It also discusses autism in the context of the family (including sibling issues and the vexed question of whether to have another child) and examines communication as behaviour (a highlight for me).

In a large section on child health Dr Robinson’s specialist medical knowledge, and her holistic views about the treatment of autism, really come to the fore. Dr Robinson is fairly mainstream in her opinions, which I like, but open-minded enough to look at autism as a disorder that may affect areas other than the brain. In my opinion the book is worth buying for this section alone.

The final section, however, is an added bonus. It takes a look at older children and teens, with chapters about fostering independence (terrific), education, sports, socialising and relationships, and transition to adulthood.

What comes through in this book, apart from Dr Robinson’s incredible knowledge, is her warmth.  She doesn’t have child with ASD herself but she certainly ‘gets’ and likes kids with autism, warts and all.  After reading this book I wanted to hop on a plane and take Joe to see her. Unfortunately I’ll have to save up the money first.

By the way, it’s through Autism Solutions that I learned about Cogmed, a new computer-based intervention for working memory, which Joe will commence next month.

If you’re interested in Floortime this book is a must buy.  If you’re not, it’s still definitely worth the read.  Highly recommended.

I am a huge fan of Richard Fidler’s  Conversations on ABC Radio (Queensland and New South Wales), and not just because Seana and I were guests on the show in 2008.  I’m not sure why listeners in other states in Australia don’t get to hear the interviews live. Fidler is a terrific, funny interviewer  and his questions always get to the hub of the matter.

World Asperger’s syndrome expert and author, Dr Tony Attwood,  now lives in Queensland with Fidler and has been a guest on Conversations more than once.  You can see (or rather hear) why he’s been invited back, as he is a wonderful raconteur.   The fact that Attwood genuinely  likes and understands his patients shines through in interviews and I love him for that.

He was recently on Conversations talking specifically about women with Asperger’s, who certainly do exist but often go through life undiagnosed,  although the conversation didn’t end  there. It was wide-ranging and amusing.  I highly recommend you listen and enjoy. The link is here.

Since we are two weeks into 2012 it may be a little late for New Year’s resolutions, but I have a few plans for the year and almost all of them relate to Joe.

Last year Joe’s needs took a temporary back seat— quite rightly I should add— to those of his eldest brother, who sat his Higher School Certificate.  That’s all done and dusted (with a surprisingly good outcome) and Big Brother is off to uni in 2012.  Middle brother’s senior school years don’t commence until 2013, so 2012 will be The Year of the Joe.

I regard my youngest boy, who turns eleven in a few weeks (where did the time go?) as a work in progress.  For Joe 2011 heralded steady progress in some areas (academics, language) and regrettable setbacks in others.

On the downside he developed some behavioural issues, related to anxiety in the school setting, as I alluded to in my previous blog. As a result he has just commenced sessions with a child psychologist, whose primary aim, at least in the short-term, will be to teach Joe coping strategies to manage his anxiety and support his social development.  I have a feeling we may go on to have a long relationship with this young woman.

I came across this psychologist when Joe attended social skills group at her clinic late last year. I was pleasantly surprised by how well he participated in these sessions (conducted with four other boys).   To tell the truth, I’d long had reservations about social skills training, being aware of research that has found that the skills learnt in these sessions rarely generalise well to the real world.  Notwithstanding that, I do think that Joe’s ability to maintain a conversation has improved recently, which may be a direct result of social skills training. It’s certainly an area they focussed on in the sessions.  Coincidence or not?

As I mentioned, on the language front Joe made steady progress in 2011, with more question asking and increased sophistication of language.  Thus far Joe has completed two modules of Fast ForWord, the computer-based language and literacy program based on the principles of neuroplasticity that I wrote about last year.  Once again I suspect Joe has attained subtle language benefits from the program, but, alas, no miracles have been forthcoming.

This year we are about embark on another sort of brain training, called Cogmed, which can improve working memory by up to 20%.  For the unenlightened  ‘working memory is necessary for staying focused on a task, blocking out distractions, and keeping you updated and aware about what’s going on around you.’  In children Joe’s age, working memory training can help with maths, reading and peer interactions. For older children it assist the ability to stay on task with homework. Its primary target market is children with attention deficit disorder, but it has been used successfully with kids with ASD as well. (Joe has both, lucky us).  I checked Cogmed’s credentials with a development paediatrician and apparently it’s the real deal. It’s not yet widely available in Australia but that may change.  I promise to report back on Joe’s progress with this program.

Oh, and music lessons may also be a possibility in 2012. Watch this space.

But the biggie for my family will be finding an appropriate high school placement for Joe for 2014. Yep, it’s probably going to take that long.  I know the reality—the perfect school for our son does not exist, at least in Sydney, so it will be a case of finding the school that offers the best fit and will accept  us ( by no means a given) .  We need a placement that will offer Joe intellectual challenge (that is, not pure special ed) in a well supported environment (not pure mainstream).  A supported class in a mainstream school is probably what we’re looking for. Wish us luck!

What plans do you have for 2012?

Anne Chalfant is a psychologist and the driving force behind Annie’s Centre, the first independent child and family health centre in Sydney.

Anne has developed a particular interest in managing anxiety in autism and co-authored The Cool Kids Anxiety Program: Autism Spectrum Disorders Adaptation (2011), a new cognitive behaviour therapy (CBT) program for treating anxiety difficulties in people with an ASD.

Way back in 2008 Anne very generously offered to review some of the key chapters in the Australian Autism Handbook and Seana and I were very grateful for her expert contribution. Well now she has written her own book, and it’s terrific.

It’s called Managing Anxiety in People with Autism—A Treatment Guide for Parents, Teachers, and Mental Health Professionals. A few months ago I received a review copy of the book and was asked if I would be prepared to write a back cover blurb for it. I was so impressed that I wrote a glowing review, which does appear on the back cover. However, I can assure you that no money changed hands—every word I wrote is true!

I first read the book with my professional writer hat on, but I’m just about to re-read it as a mother, this time with highlighter pen and notebook at hand.  Unfortunately Joe seems to be developing some problem behaviours at school that are strongly suggestive of anxiety (stress at needing to complete his schoolwork perfectly and before the other kids, and getting very agitated by changes to the school schedule) and we need to teach him how to manage this anxiety  before he reaches the more challenging environment of high school, now only two and a bit years away.

However, about the book…

The first half of Managing Anxiety in People with Autism provides general information about anxiety (helping to differentiate between helpful and unhelpful anxiety), explains anxiety in the context of ASDs and why individuals with ASD are particularly vulnerable to anxiety (studies suggest a prevalence of approximately 40-50% amongst individuals on the spectrum but it may be even more common), and looks at the broader family impact of anxiety and how parents may inadvertently model anxious behaviour.

Anxiety in autism can manifest in many ways, as the book illustrates: classic social anxiety is common, but perfectionism, resistance to change and schoolwork (or, at worst, school) avoidance can all point to anxiety.

The second part of the book focuses on the treatment of anxiety in ASDs, both indirect and direct. Indirect treatments are defined as ‘strategies that parents and professionals can use to adjust either their behavio(u)r or the environment of someone with an ASD in order to reduce anxiety.’  Direct treatments examined include medications, psychoanalysis and alternative medicines. A whole chapter is dedicated to cognitive behaviour therapy. CBT is a well recognised and evidence-based treatment for anxiety and it’s exciting to think that this therapy can be modified to help individuals on the autism spectrum.

Finally, the book lists some helpful additional resources.

It’s an easy to read and practical book, with lots of headings, tables, diagrams, case studies and hands-on examples. A succinct summary follows each section.  The style is accessible and, even though it’s also targeted at professionals, the average intelligent parent should be able to follow it without any problems.   It’s also a book you can dip into and out of as you see fit—it’s not something you need to read cover to cover.

Chalfant is not claiming that the book will be a cure-all. She recommends seeking advice from a qualified professional if anxiety is severe.   Moreover, even if the strategies she recommends are followed to the letter, progress will typically be of the ‘three steps forward, two steps back’ variety. That’s to be expected.  However, readers of this book can expect to develop a greater understanding of anxiety in ASDs, and how to modify their environment and, importantly, their own behaviour to help their child.

If you have a child with ASD and anxiety, I can’t recommend this book highly enough.

Here are a few items that I have been collecting over the past wee while, something to interest all mums and dads of a child or teen on the spectrum.

A Terrific Post – Ten Ways to Help Family Living with Autism

http://theiloveyousong.blogspot.com/2011/10/10-ways-to-help-family-living-with.html#autism

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Free Parent Forum on ‘Puberty, Sexuality & Relationships’

at Family Planning NSW Saturday 26th November (and held regularly)

http://www.fpnsw.org.au/325504_3.html

This forum focusses on supporting people with disability increase their sexuality knowledge and awareness.  Check your state’s Family Planning services to see whether similar courses are run near you.

Thanks to Liz Dore for letting us know about this.

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Video Reviews of Apps for Children with Special Needs

http://a4cwsn.com/apps/apps-a-z/

It’s so handy to be able to watch video reviews of apps before you buy.

I don’t know if anyone else saw last Monday’s (26/9/11) Four Corners episode, called St Ann’s Secret. If not the link is here.  And here is a summary:

In July this year, authorities in South Australia decided not to proceed with a case claiming sexual abuse of a child with an intellectual disability. The prosecution formed the view that the child could not give reliable evidence. The accused was released. The parents were enraged.

It was not the first time authorities in this country had made such a decision… In 1991, police searched the home of Brian Perkins, the bus driver from St Ann’s [Special School]. They found photographs of several naked children who attended the school. Police moved to prosecute Perkins, but due to a “systems error” he was given bail and absconded.

But this wasn’t the only mistake. Although they knew it was possible that up to 30 children had been abused, the police and the school authorities did not tell all the parents whose children had come into contact with Perkins.

For 10 years nothing was done. Over that time many of the children developed terrible behavioural problems. Finally, as a result of a chance encounter between the parents, the full extent of their children’s abuse was revealed. The parents tell how, in the decade that followed their discovery, they struggled to get justice from the Catholic Church and the police. None of them can understand why the abuse was covered up or why Church authorities have fought so hard – in spite of their offer of a one-off financial payment to some families – to avoid admitting the extent of the abuse.

It’s enough to make you weep, isn’t it?

I have harped on earlier about the need to educate our ASD children about sex, and this story illustrates why.  They are vulnerable. Even if these kids learn little more than the fact it’s not okay for someone to touch them in private places, that’s a huge start.

Finding suitable sex education resources can be tricky though, as they have to be pitched at the right level. You can read my review of the excellent resource Taking Care of Myself here.

Recently I also stumbled across an online teaching module produced by Positive Partnerships.

In case you’re not aware, Positive Partnerships is one of the federal government’s Helping Children with Autism initiatives.  It was established in 2008 to ‘improve the educational outcomes for school aged children with autism spectrum disorders’, with its name acknowledging the importance of establishing co-operative partnerships between families and schools.

Positive Partnerships consists of two components:

• a professional development component for teachers and other school staff who are working with students with ASD (if I may editorialise here,  if I was Prime Minister this training would be compulsory for all teachers working in Australia!)
• a parent/carer component, which provides workshops and information sessions for parents/carers of school-aged children with ASD.

Positive Partnerships has run parent and professional workshops throughout the country since its inception. Hopefully these will continue in 2012 and beyond, although the Positive Parenting website suggests some uncertainty about ongoing funding.

However, as I mentioned,  it was the online teaching modules that caught my eye. These are accessible by anyone with an interest and access to the internet. In addition to Parent/Carer course, which is based on the face-to-face workshops and specifically focuses on the educational challenges of children with ASD, there are nine additional online modules for parents and carers:

• introduction to autism
• making friends
• completing work
• everyday transitions
• sexuality, personal hygiene and safety
• positive behaviour support
• communication
• bullying
• siblings

A few weeks ago I decided to register as a parent/carer to see exactly what was on offer. I chose to review the sexuality and positive behaviour support modules.    The modules are easy to use, interactive and visually appealing.  Participants are required to answer questions to gauge their understanding (to my embarrassment I got one answer wrong, but my excuse is that I was reviewing the technology rather actually attempting to learn anything!)  Each module takes about 15-20 minutes to complete.  They are perhaps not as detailed as I would like, but I then I’m not a typical user.    They’ve kept the information simple, snappy and relevant and you can’t ask for more than that.  Each module has a list of resources (book and websites) for those who require more information.

The sexuality, personal hygiene and safety module stresses—as I have—that it’s essential for children and teens with ASD to be educated about sexuality, otherwise they may find themselves in hot water because they have not been taught the rules of appropriate behaviour, or, even worse, become unwitting victims of creeps such as Brian Perkins.

I wonder if the young men featured in Four Corners had been better educated about their rights whether the terrible abuses at St Ann’s would have been picked up earlier.

Have you used the Positive Partnership resources? If so, did you find them helpful?

Benison and I didn’t manage to get to the Australia Pacific Autism Conference this year, sadly.

Benison’s husband did go though and he presented a paper there.  We must demand a guest post from him on what’s new in the world of autism research.

Parents want to know and they need to know too, don’t you think?

But what we can tell you is that a new society has been formed.

I’m going to join it.  Will you?

The new Australiasian Society for Autism Research doesn’t have a website yet, but is calling for members to join now.  It is really a society for academics and researchers, to share information and resources.  Parents can join as associate members.

Click on the image above to enlarge it and read more.

Membership fees will support a biennial national research meeting, in the year alternate to APAC, as well as a website, newsletter and admin costs etc

This Society has grown out of the previous Australasian Autism Research Collaboration.  Click the picture below to have a look around their website.

I love to keep an eye on what is happening in Australian research.  It makes me feel that things are moving along, that our children’s issues are being taken very seriously. And there’s often a need for families to take part in research too, so the more of us who know about it, the better.

You can print the application form after clicking the image below.

Has your family ever been part of a research project?

Will you join?  Do you like to keep up with Aussie research?