Aussie Innovation – Whiz Kid Games

by Seana Smith on Monday, August 9th, 2010

Did you hear about Whiz Kid Games when it won The Victorian Premier’s Recognition Award for design achievement a couple of weeks ago?

Whiz Kids Games is a collection of online computer games aimed at children with moderate to severe ASD.  The games, which are colourful and fun in themselves, teach life skills to the kids playing.   The games are a collaboration between multimedia design students from Swinburne’s Faculty of Design, plus autism experts and others.

To get started, the best website is:   www.autismgames.com.au

There parents and teachers can read about the project itself, and find out which skill each game is aiming to teach.

The games themselves can be found at:  www.whizkidsgames.com

The website is still under construction and several of the games have glitches and bugs.  Some can be slow to load as well.   However, Whiz Kid Games is definitely a website to keep an eye on. It’s great to see innovation and ASD expertise combniing, and even better that the games are totally free to use.

You can read an article about Whiz Kid Games from the Sydney Morning Herald at:

http://www.smh.com.au/digital-life/games/blogs/screenplay/whiz-kids-awarded-for-special-games/20100727-10sw8.html#comments

4 COMMENTS

Update on autism and divorce

by Benison O'Reilly on Thursday, August 5th, 2010

We’re moving to a bigger and better site!

Just not yet.

Seana and I are working on our new standalone blogspot for the AAH.  We’ve got it up and running, but it still needs lots of work.  We’re also planning to move all our old posts over to the new site’s archives, which will take a while, so expect it to be up and running in a couple of weeks.

In the meantime I stumbled across this report of another study on autism and divorce. Back in May I reported on a study that found that the rate of divorce between parents of kids with ASDs did not differ significantly from the divorce rate for parents of typically developing children, exploding that old 80% divorce rate mythology.

This new study,  published in the Journal of Family Psychology, and reported in the LA Times is less encouraging. Researchers investigated 391 families participating in the Adolescents and Adults with Autism study and compared them with other demographically similar families whose children were developing typically. The divorce rate among couples raising a child with an ASD was  nearly twice as high as the  rate for the control families (23.5% vs 14%).

The risk of divorce was higher for families that had one or more older siblings in addition to the child with ASD (which unfortunately exactly describes my situation, although last time I checked my husband and I were still talking!) , although interestingly not for families who had more than one child with an ASD, or a more severely affected child with autism.

This suggests that ASDs may add some additional strain to marriages-an unsurprising finding-but in this study 75% of ASD marriages remained  intact, which suggests the odds are still in our favour.

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Adventures and Obsessions Overseas

by Seana Smith on Monday, July 26th, 2010

Many thanks to Benison for  holding the blog fort whilst I have been in Scotland.   I’ve been visiting my family and my husband’s family with the four kids, and introducing the twins, who are now four, to their Scottish family and heritage.

The twins and I will fly home tomorrow and Tom and his almost-11 year old, and very long-suffering brother, took the train to London today and fly home from there on Tuesday.

This visit to Scotland marks many milestones for us all and there have been many occasions when I’ve reflected on our ASD journey, where we’ve been, where we are now and where on earth we are all heading.

Firstly, it is amazing that Tom and Dexter have been able to fly to and from Australia without their parents – who’d have ever thought it?   They were well looked after by Qantas as “unaccompanied minors” and thoroughly enjoyed the flight over with all its movies, computer games and kids’ meals.

In London they are staying for two nights with our dear friend Jo, she was one of Tom’s ABA therapists and was his shadow at school as well.  In all she worked with Tom for five years, and, once faded out of school, she went overseas and has been in London for a few years.

I’m so grateful still to Jo for her calm and soothing personality, which helped me so much as she was helping Tom. Jo was terrific at making sure Dexter felt involved in Tom’s therapy and so he feels as warm towards her as we all do.

I must say that I really wouldn’t be happy to send Tom off on trains and planes alone, but he’ll be fine with Dexter, who is much more streetwise.   Likewise, I wouldn’t send Dexter alone, but feel he’s Ok with Tom who is a huge boy whom few would mess with.   Just hope they don’t lose the mobile phone.

Similarly, I wouldn’t really be happy to send them to stay with anyone but Jo.  She knows  Tom well and was keen to have them to stay.   Tom’s incessant talking and puppydog enthusiasm, plus his endless demands for money, junk food and musical instruments will not faze her.  We trust.

Musical instruments!  Don’t talk to me about them!  Never let it be said that Tom doesn’t have some flexibility in his obsessions.  He has discovered a whole new raft of them on this trip and all very culturally appropriate.  These include:

* the bagpipes… he talks about them incessantly and is desperate to learn.  He did get to blow a set and was delighted; me less so.  Other musical instruments obsessed over include banjo, ukelele, guitar and, bizarrely, the sitar which is not very Scottish at all.

* golf, the national game.  This is not a dreadful obsession to have, in fact it’s a handy one and I did manage to let him play a few times.  It’s just the going on and on and on about it.

* Irn Bru, Scotland other national drink, a fizzy pop par excellence.  Both my big boys loved Irn Bru, such a pity it has Sunshine Yellow colour in it and carries its own health warning about its effect on the “activity levels and concentration of young children.”

Anyway, be grateful for small mercies, Tom hasn’t yet obsessed about those other Great Scottish Drinks, whisky and Tennants Lager.  Nor has he taken up the tradional Scottish pastimes of chain smoking and eating bulk saturated fat.

His mother however may indulge in a wee dram before leaving the land of her birth tomorrow.

1 COMMENT

Mother guilt and autism

by Benison O'Reilly on Saturday, July 24th, 2010

I thought Seana was back in Australia last week, but now find out it’s actually this coming week. I must say that taking four children – including one on the spectrum – on an extended overseas holiday by herself  (her husband was working) was very brave of Seana, although she may prefer to substitute another adjective for ‘brave’!  I know she has plans for a couple of blogs, so stay tuned.

A couple of weeks ago I wrote about our parenting skills being judged by others, those who don’t know the  sheer hard work and never flagging commitment required to raise a child with an ASD.

Thus it was timely to come across this blog  Proving You’re a Good Parent from the New York Times. It was written by Liane Kupferberg Carter, the mother of an 18 year old boy with autism. In it she describes how she found herself explaining to a representative of the court why she should retain guardianship over her son.

It is probably less upbeat that most of the posts on our blog, but it’s so beautifully written that I thought it important to share. It also goes to the heart of mother guilt. Seana and I are currently collaborating on a book  about perinatal anxiety and depression and its surprising how often mother guilt raises its ugly head. We women seem to judge ourselves so harshly. When you have a child who doesn’t live up to society’s expectations that guilt can become an even heavier burden.

Anyway, it’s impossible not to be moved by Ms Carter’s story. Please read.

On a brighter note,  we’ve had the good news that we will soon have a bright, shiny, new, standalone blog for the Australian Autism Handbook,  with enhanced features and a much-needed  search function. Watch this space for updates…

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On dancing frogs and physical clues to autism

by Benison O'Reilly on Saturday, July 17th, 2010

Some of you are probably old enough to remember the old Loony Tunes cartoons, featuring Bugs Bunny, Daffy Duck and the crowd.

There was one particular cartoon that used to drive me nuts. It was about a down-and-out homeless guy who discovers a box, and inside the box is a singing, dancing, high-kicking frog. Dollar signs appear before the tramp’s eyes (his luck has changed!) and he starts heading off to various casting agencies, frog and box in hand.  But the frog only performs its routine for him and when anyone else is around it simply sits in the box and says ‘ribbit, ribbit’ — as frogs tend to do.

Eventually the guy gives up in despair and tosses the box and frog away…only for it to be discovered by another down-and-outer, to repeat the process over, and presumably over again.

It’s almost unwatchable.

The dancing frog has become a metaphor in our house for the child who refuses to perform for the crowd. And of all our children, Joe is the most notorious dancing frog.

It happened again this week. Every six months we toddle off to the paediatrician’s for a check up — the same paediatrician who diagnosed Joe way back in February 2004. Back then Joe was so disabled—completely hyperactive and very autistic, with no play skills and virtually no language. His developmental assessment suggested a very low IQ.  The situation looked bleak.

Now, despite the autism, things are much better.  Academically Joe’s maths and spelling are age appropriate, and his reading and handwriting are just a bit below. His language improves on a daily basis, so much so that I sometimes wish he’d talk less.  He can ride a bike, swim and play soccer.  He loves play dates with his friends.

I took his impressive school report along to show the doctor, which is just as well because the chatty, interactive boy of five minutes earlier proceeded to ignore the doctor, avoid eye contact, and disappear into an autistic trance.

‘He’s not usually like this,’ I said, ‘Normally he never shuts up’.

Yeah, yeah, I’m sure the doctor was thinking.

Why do I have this desperate desire for people to see Joe at his best? To see that he is not so different from the rest of us?  Probably it’s just for my own pathetic gratification because— at this stage at least—he couldn’t care less.

I should let go. After all he is not a trained seal, nor a dancing frog.

Speaking of things medical, I stumbled across this interesting paper the other day. It’s entitled ‘Morphological features in children with autism spectrum disorders: a matched case-control study’. Basically a bunch of Dutch researchers got 224 children on the autism spectrum (mean age 9.7 years; 4:1 males/female ratio) and some matched controls (typically-developing kids of the same age) and looked for physical signs that distinguished the kids on the spectrum from their typical peers.  They classified these physical signs as major abnormalities and minor variants. The latter  are ’slight morphological deviations’ that have no serious medical or cosmetic significance but may be  useful indicators of disturbed development. Of these minor variants, minor anomalies have a prevalence in the normal population of ≤4% and common variants a prevalence of >4%.

The children with ASDs were statistically more likely to present with major abnormalities, minor anomalies and common variants, including:  dull facial expression and open mouth appearance  (these were the only two major abnormalities detected),brachycephaly, facial asymmetry, webbed toes,  hyperflexible joints,  prominent ears, attached earlobes, clinodactyly, flat feet, high palates and abnormal hair whorls (’cowlicks’).

What is most interesting is that none of the kids on the spectrum in this study had an intellectual disability (defined as IQ<70),  yet they still displayed physical signs of ‘difference’ – subtle, but present nonetheless. It adds further weight to the genetic basis of ASDs.

And the sixty million dollar question is: Does Joe have any of these signs?

Yes. He has both hyperflexible  joints (although his father, who is clearly not on the spectrum, also has these) and he has some degree of brachycephaly. The latter was actually commented on by a doctor when Joe was a baby, but I just assumed it was a consequence of encouraging him to sleep on his back, a precaution introduced to reduce the likelihood of SIDs.

Still he remains a very good looking boy, with a slightly odd shaped head. I just hope he doesn’t go prematurely bald.

The study is published in the Journal of Autism and Developmental Disorders as a free access article,  so you can read it yourself if you so desire.

http://www.springerlink.com/content/ck441558236×33w7/fulltext.pdf

By the way, in case you’ve been wondering about Seana’s recent silence on the blog front, she has been ferrying her brood of four around Scotland for a few weeks, visiting the relatives.  We look forward to her return next week.

7 COMMENTS

Importance of choline for pregnant and breast feeding women

by lisaguy on Saturday, July 17th, 2010

Hello everyone, today I want to tell you about a really important nutrient that all pregnant women should know about – Choline.

Researchers at the University of North Carolina have recently found that choline plays a critical role in fetal brain development, especially with regions associated with memory. If a mother’s diet is deficient in choline, a baby’s brain will develop too few blood vessels, putting a child at risk of memory problems and learning difficulties.

Choline is an important nutrient related to the B vitamin family. Egg yolks are one of the richest sources of choline, each yolk containing 126mg of choline. Other good sources of choline include soy beans, peanuts, spirulina, broccoli, wheat germ, potatoes, milk and beef.

Choline is essential for healthy brain function as it is found in the myelin sheath that insulates nerve fibers throughout the brain and body, which facilitates rapid transmission of electrical impulses. Choline is also used to produce acetylcholine, an important neurotransmitter involved in memory storage.

Pregnancy and lactation is a critical time for brain growth and development, and therefore the need for choline is increased. It is also important for pregnant women to have good choline levels as it helps prevent neural tube defects (together with folate). Maternal reserves of choline can easily become depleted during this time so it is recommended that pregnant and breast feeding mums regularly consume foods rich in this important nutrient.

The recommended dose of choline for pregnant women is around 450mg per day. Because choline is also necessary for milk production, the recommended daily intake for lactating women is 550 mg/day.

Wishing you all good health. Until next time, Lisa.

1 COMMENT

The perils of being an autism parent

by Benison O'Reilly on Wednesday, July 7th, 2010

‘Unfair, unfair, unfair.’

This, apparently, was my husband’s catchcry as a child, according to his family. He was a child who railed against anything he thought unjust.

These words came to me yesterday, when I was victim of the most unfair criticism I have ever received in sixteen years of parenthood.

I was in the bank with Joe, feeling stressed and hurried. I had half an hour to  get the  banking and shopping done before I had to pick up Joe’s 16-year old brother from an appointment a couple of suburbs away. Whilst I was filling out a bank deposit slip, and simultaneously being harassed by an overzealous charity collector, Joe discovered a laminated cardboard sign that belonged to the bank. There was certainly nothing remarkable or valuable about the sign but— for reasons unknown—Joe liked the look of it and took it.  I was just about to exit the bank when I heard a middle-aged male customer call out, ‘Hey that doesn’t belong to you. Bring it back!’

Looking down, I noticed Joe had the sign and told him to put it back, which he did without protest.

And…

as we departed the bank I overhead the said customer say to the teller, ‘I’d don’t blame the kids. It’s the parents’ fault.’

Unfair, unfair, unfair!

Poor old autism parents—we can’t win. I generally prefer not to tell strangers about Joe’s diagnosis these days. It’s really none of their business. (The name ‘Joe’ is a psuedonym, by the way). He has high-functioning autism, can talk and behave himself reasonably well in most situations. However, he is impulsive, by virtue of his ADHD co-diagnosis and he has lots of obsessions that can appear odd.

However, if I don’t reveal my son’s diagnosis he gets labelled a naughty child and I get called a bad parent!

I was in too much of a hurry to confront the man about his ill-informed judgements yesterday, but when I told my 16-year old about it he said he would have happily punched him in the nose.

I wonder what the man in the bank would say if he knew that:

* when Joe was diagnosed with an ASD I gave up my career to run a 35-hour a week ABA program for him

*my husband has worked hard to earn the $150,000 + we have already spent on Joe’s therapies

* when Joe was five my husband and I flew to the US just to attend an autism conference on a new promising treatment

*five years after diagnosis, Joe still attends weekly speech therapy and fortnightly occupational therapy sessions, in addition to his swimming lessons and soccer

*my husband takes Joe camping every holidays and bike riding every weekend

*we adore our son more than words can express.

I am not asking for a medal, or even any special recognition, for this. I know autism parents who have done much more for their children, at considerable cost: sometimes with remarkable effect, other times less so.

I also know that a vast many parents would do more if they had access to the money and services their beautiful children deserve. Seana and I know how fortunate we are that we were able to afford the Rolls Royce of autism therapies—that’s why we support organisations such as Autism Awareness, which continue to lobby government for better funding and services for people with ASDs.

All autism parents love their kids and want to do the best by them, regardless of their circumstances.

Parenting is never easy. I have two typical children and often feel I don’t do enough for them, that I let them down. But parenting a child with special needs raises the bar just that much higher.

My all-time, ultimate hero parents are those who cope with the day-in-day-out slog of caring for a child (or children) with significant disabilities—whether autism or otherwise— and do it with patience and good  humour. There are no better parents than these wonderful mums and dads and they deserve our awe and respect.

3 COMMENTS

Oxytocin for autism spectrum disorders

by Benison O'Reilly on Wednesday, June 30th, 2010

As reported in the latest issue of Aspects magazine from Autism Spectrum Australia, there is some interesting autism research happening in my home town, Sydney.

The Centre for Autism Research, Evaluation, and Service (CARES), at the Brain & Mind Research Institute, recently conducted a small study to determine whether oxytocin nasal spray could enhance emotion understanding in high-functioning teenage males with an ASD.

As you probably know, oxytocin is often called the ‘hormone of love’.  Although best known for its role in facilitating labour, delivery, and breast-feeding, it is also important in promoting trust, love, and social recognition.

In this double-blind*, randomised trial, oxytocin nasal spray or a placebo was administered as a single dose to each of 16 participants in a cross-over design, and their performance was assessed using a standard test of emotion recognition, the Reading the Mind in the Eyes Task. The researchers found oxytocin nasal spray improved emotion recognition compared with placebo, and the results were published in the April 1 2010 issue of Biological Psychiatry.¹

Inspired by this success, the researchers now wish to determine whether oxytocin nasal spray can improve long-term social function in ASD, and hence be used as a treatment for autism. Recruitment is underway for a new trial involving males aged 12 to 18 with ASDs. Participants will use oxytocin spray or a placebo twice a day for eight weeks, with social function  assessed before, immediately after, and three months following completion of the trial.

CARES is looking for males aged 12–18 years with an ASD to participate in the trial. If you know anyone who may be interested they should contact the Brain & Mind Research Institute on (02) 9351 0881 or email: autismcares@med.usyd.edu.au.

Unfortunately my little guy, Joe, is too young for the current trial, but once this study is completed—and if improvements are found—trials in different age groups and females will be conducted. Let’s keep our fingers crossed for a good outcome.

*A trial in which neither the participants nor the researchers know who is receiving the active drug and who is receiving placebo.

1. Guastella AJ, Einfeld SL, Gray KM, Rinehart NJ, Tonge BJ, Lambert TL, Hickie IB. Intranasal oxytocin improves emotion recognition for youth with autism spectrum disorders. Biological Psychiatry 2010;67:692-694

9 COMMENTS

The gluten-free casein-free diet in autism revisited

by Benison O'Reilly on Wednesday, June 23rd, 2010

In the Australian Autism Handbook, published a couple of years ago now, we discuss the gluten-free casein-free (GFCF) diet and the evidence for its use in ASDs.

We include mention of an ongoing— at that time—double-blind randomised controlled trial (RCT):

Currently the US National Institute of Mental Health (NIMH) is supporting a double-blind RCT to study the effectiveness and safety of GFCF diet. Thirty children following a GFCF diet will either be challenged with snacks which contain gluten and casein or receive identical placebo snacks. All children in the study will be receiving intensive behavioural intervention so that the effects of their early intervention program cannot influence the results. Researchers will try to identify the characteristics of children who are responders and the nature of that response. You can read about this trial at: http://clinicaltrials-nccs.nlm.nih.gov

Well, the preliminary results of that trial are now in and were presented at the recent International Meeting for Autism Research (IMFAR), held last month in Philadelphia. Unfortunately we only have an abstract to go on, and should probably reserve complete judgement until the full published paper is available for review, but this is a summary of  the research:

Children aged 30-54 months, receiving at least 10 hours/week of early intensive behavioural intervention (EIBI) were recruited. They were screened for milk/wheat allergies, coeliac disease, and anaemia prior to starting treatment.

After a strict GFCF diet for at least 4 weeks, they received weekly randomised, double-blind challenges (snacks) containing either 20 g wheat flour, 20 g evaporated milk, both, or neither on three separate occasions over 12 weeks . The snacks appeared identical and were similar in taste and texture.  Behavioural and other data was collected at baseline and at regular intervals throughout the 30-week trial; as well as prior to, and two and 24 hours after, the snack challenges.

In the end twenty one children were recruited. Of these, seven were eventually excluded from the analysis for medical or other reasons, leaving only 14 participants (12 male), with an average age of just over three and half years.

The researchers found no statistical change in frequency or quality of stools, sleep, activity measured by actigraphy*, or parent/teacher/observer scores of attention or activity when children’s baseline (before diet) measures were compared with treatment (during diet) measures. Nor did they detect any changes pre/post the gluten and/or casein challenges. In fact, one group measure of behaviour** actually improved 2 hours-post gluten &/or casein challenge, although in light of the small patient numbers this might be a chance finding.

The authors concluded:

This is the first study to examine the behavioral effects of a nutritionally monitored GFCF diet on attention, sleep, stool pattern, and core symptoms of ASD. While no favorable effects of the GFCF diet on attention, sleep and stool patterns were identified in group analyses, such effects may occur for individuals or for subgroups of children   (e.g. with significant GI disease), providing the basis for positive anecdotal reports.  Future studies need to address the potential effects of nutrition on behavior in children with ASD and be powered to evaluate subtle changes in core symptoms.

The abstract is available below:

http://imfar.confex.com/imfar/2010/webprogram/Paper6183.html

This is the second double-blind study to find no effect for the GFCF diet in young children with ASD. It may be, as the authors say, that there is a subgroup of children—possibly those with significant gastrointestinal symptoms—who do benefit dramatically from the diet, and more trials with greater patient numbers are clearly needed.  Nonetheless this adds to the body of evidence that not all kids on the autism spectrum will respond to the GFCF diet.

Those who are interested might also want to check out the latest Cochrane Review of the GFCF diet, updated in 2009 but prior to presentation of this latest study:

www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003498/frame.html

*According to Wikepedia, actigraphy is a relatively non-invasive method of monitoring human rest/activity cycles, commonly using a wrist-watch-like package. The unit continually records movements, which are later analysed by computer.

** The Ritvo Freeman Real Life Rating Scales (RFRLRS). This scale was developed to assess effects of treatment on 47 recognised behaviours of patients with autism. It is applicable in natural settings & can be used by nonprofessional raters.

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Two Useful Teachers’/Professionals’ Resources

by Seana Smith on Thursday, June 17th, 2010

I’ve heard of some terrific learning resources recently and want to share here two which are particularly useful for teachers and speech pathologists.  They’re also of interest to families too, so do read on.

1.   The first is the Jill Sherlock Memorial Learning Assistance Library.  This is a library which provides resources and equipment to schools and families all over NSW for their children with learning difficulties.   The library is run jointly by the NSW Department of Education and Training and the Jill Sherlock Memorial Trust.

On its website it describes itself thus: “This state facility provides resources to teachers, allied professionals, parents and others who support the teaching and learning needs of students with learning difficulties in the context of syllabus and curriculum requirements.”

For teachers and for parents this is a very handy resource, you can browse the catalogue online and can also get in touch to ask advice of a specialist librarian.

http://www.sherlocklibrary.det.nsw.edu.au/

With apologies, I have to admit this library is for those in NSW only, but I thought it’s worth telling everyone about – maybe there are similar libraries in other states.  And if now, why not?  Time to pester the your Dept of Ed into setting one up!

2.  Social Times The second item comes from the USA, from the Autism Aspgerger Publishing Company. This is a magazine called “Social Times” which is produced nine times each school year and which deals with the sorts of social issues our children need to practise.

The magazine is aimed at teachers and others who are running social skills groups.  You need to buy it in batches of 10 copies.

The writing is gaimed directly at young people, the magazines are bright and colourful, they wouldn’t look out of place at all to young people.  Topics include:  Giving and Receiving Compliments, What Does Embarassment Mean?, Body Language- a Must Read, Fixing Social Bloopers and Giving the Right Gift.

These magazines seem a marvellous resource, do have a look at the website which has heaps of information and a free downloadable copy.

http://www.asperger.net/social_times/index.htm

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