Podcast – fascinating listening for ASD families.

by Seana Smith on Friday, August 28th, 2009

I am a great lover of radio, mainly because I can listen to really interesting things as I do housework.  After mastering iTunes and iPod, I now catch up on a whole range of programmes whilst tidying up the kitchen, which is a job done many times a day in my house.   Loading the dishwasher, washing up the pots and pans and wiping down the tops, tidying up the general family debris has become (almost) a pleasure thanks to the hard workers at the ABC and the BBC.

Occasionally a podcast mentions autism/ASD, and fairly often I’m disappointed by the quality of the research.  Not so in the podcast you can find at:

http://www.abc.net.au/rn/allinthemind/stories/2009/2567806.htm

This is from the excellent show “All In The Mind” – the ABC’s weekly show about the brain and mind. In this episode,   Autism: genetics, early detection and the ethics of screening newborns, presenter Natasha Mitchell interviews two American neurologist/paediatricians and also Assoc. Proff Cheryl Dissanayake, who is a developmental psychologist and is Director of the new Olga Tennison Autism Research Centre at Latrobe University.

Dr Dissanayake does research into the early detection of ASD, and talks about the effects of beginning treatment very early.

As a parent, I feel sure that studying the very early signs of ASD, and then trying to treat children in infancy, is a crucial area which will answer some of the toughest ASD questions: What causes ASDs?   What are all the different types of ASDs   Can any be prevented?

Whilst these questions do not press upon my mind as harshly as they did when my son was first diagnosed, I do hope one day to know for sure the answers to them.   The volume of research being done on ASD is truly enormous, and we hope in this blog to bring to light some of the most interesting findings.

363 COMMENTS

Walking beside

by Benison O'Reilly on Thursday, August 27th, 2009

Last week Seana and I were at the Asia Pacific Autism Conference (APAC) 2009 at Darling Harbour, Sydney. Over 1600 delegates, both professional and parent, attended. It was a packed agenda, with visiting international speakers such as Eric Fombonne, Francesca Happé, Patricia Howlin, and the now Brisbane-based Tony Attwood, as well as professional contributors to the Australian Autism Handbook: Robyn Young, Jacqui Roberts, Deb Keen, John Wray, Natalie Silove and Katrina Williams.  Seana and I plan to report on some of the keynote presentations in future blogs.

However, following on from last week’s blog about The Horse Boy, as he’s been come to be known as, about I wanted to talk briefly about the Autism SA conference Seana and I attended in late May. I witnessed a fascinating presentation by two bright, articulate and funny women who had both been diagnosed with Asperger’s syndrome in adulthood. In each case diagnosis seemed to have brought relief and some explanation as to why life had proved so challenging and difficult up to that point.

At the end of their presentation questions were called for. I asked how, as a parent (a quite interventionist parent at that), I could best assist my son and not cause him unnecessary stress and anxiety. The advice I received was this:  just as long as I was ‘walking beside’ my child and supporting him in his endeavours, my parenting was welcome.  It was being dragged along and forced to do things they found very hard that had caused these women their greatest struggles.

I thought about my son, whom we are always exposing to new experiences.  There might be a couple of grumbles at the time but definitely no distress, and once he is over that initial reluctance (like at a recent visit to a laser skirmish centre), he seems to genuinely embrace novelty.

So I think we will keep on challenging him, just making sure we are walking beside him, not dragging him along behind.

451 COMMENTS

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.

1 COMMENT

‘Australian Story’ and autism mums

by Benison O'Reilly on Tuesday, August 11th, 2009

Welcome to the inaugural blog for the Australian Autism Handbook. The timing is auspicious, thanks to this week’s Australian Story (ABC TV), featuring Ian, Nicole and Jack Rogerson.

www.abc.net.au/austory/

Nicole, a good mate of Seana’s, in particular, for several years, is actually a contributor to the Where Are They Now? chapter in the AAH.

One of the comments Nicole makes in our book is:

I appreciate that everyone carries their own personal expectations and what they consider to be a level of success. I am sure some days people look at Jack with me and think ‘oh that poor woman, she’s got that disabled child’. Whereas, I think I’ve got the best autistic kid in the world.

I thought this an interesting observation, because for any who knows Nicole the last thing she inspires is pity. She’s a human dynamo, a gifted public speaker, and an unflagging advocate for early intervention.  She also hosts a great party and laughs a lot.

Autism is often portrayed negatively by the mainstream press, and for some families affected by severe autism maybe that is the reality, but our family life, like the Rogerson’s, is overall pretty good.  

Recently I was taken aback when some people expressed in both word and deed that they felt sorry for me. Maybe to them I was just the poor mother of Joe, the boy with autism, but I certainly never think of myself that way.  I have many identities:  I am a wife and also the mother of two fine, young, typically-developing boys. I am daughter, a sister, an aunt.  I am pharmacist (although I don’t think I’ve dispensed a medicine since 1992). I am now a writer.  I am a tuckshop mum, and a soccer mum. I am a theatre goer, and a gym goer, and a member of a political party. Yes, autism is a passion and interest of mine but I don’t feel in any way defined by it.

So I hope I speak for many parents of children with an ASD when I say, don’t feel sorry for us, or, for that matter for our children. We don’t want pity, but I think we’d all appreciate some extra understanding and support.

9 COMMENTS

Seana Smith

by Jane Curry on Monday, August 10th, 2009

As co-author of the Australian Autism Handbook I know how important the online community is to families of children with ASD. I am thrilled to be able to blog direct with our readers.

1 COMMENT

Dr Lucy Blunt

by Lucy Blunt on Monday, August 10th, 2009

I am delighted to be part of the JCP Blog.  It is a wonderful opportunity to make contact with other women and their families about the experience of having cancer.  Drop me a line, I’d love to hear from you!…

Warmest wishes,

Lucy

1 COMMENT

Daniel Petre

by Daniel Petre on Monday, August 10th, 2009

Have we really learned anything from the GFC?

Many Australians have lost thir jobs during this latest financial crisis which makes for tense times as they try to recast their careers and futures. Also nearly every Australia suffered significant losses in their superannuation nest eggs in the rapid unwinding of the global equity markets.. This has definitely put a significant dent in the financial plans for many late 50 year olds and 60 yar olds…However the point of this post is not to list those hurt by the GFC but ask whether we have learned anything from what has transpired.

We all became greedy. We all assumed that equity markets will just continue to rise. We all bought too much stuff that we could not really afford and some of us bought houses we also could not afford. In simple terms we binged on debt to provide for a lifestyle that we thought would make us both happy and accepted…And so now what?? It seems that if you are still standing and employed you are fortunate and you should reflect back on what we missed…What we missed was that we had enough stuff and that probably our houses were OK and not in need of a major upgrade and that really what we have lost is not so much this stuff but the time with our children and families…Here we are with our net wealth back to 2004 levels so what did the last 5 years provide…alot of long hours at work to allow ourselves the material upgrades  in the hope that we would be fine if we just got the next car/house/plsma etc….and yet what also happend over the 5 years is that while we were focused on getting more stuff our children grew 5 years older..While we may get back to 2007 net worth levels as can NEVER getbck those lots yars with our kids…These times are gone forever and we are worse for the loss…..So the lesson surelyu through all of this is that stuff will come and go but what really matter is our family and friends. We need to resist the temptation to get back on the rat wheel and stay focused on not missing the next five years…Good things can come from bad times..A renewed focus on those we love could be a good outcome from the pain and loss from the GFC

1 COMMENT

AUSTRALIAN AUTISM HANDBOOK

by Benison O'Reilly on Thursday, August 6th, 2009

As co-author of the Australian Autism Handbook, I  look forward to creating a useful and supportive blog for families of children with ASD.

46 COMMENTS