Funding for Young Children Expanded

by Seana Smith on Tuesday, September 22nd, 2009

Here’s a press release about the Helping Children with Autism package- this will be welcome news to many families.

Media Release    Date: 22 September 2009

JENNY MACKLIN MP - Minister for Families, Housing, Community Services and Indigenous Affairs

BILL SHORTEN MP - Parliamentary Secretary for Disabilities and Children’s Services

Autism services expanded across Australia

Around 1400 children with Autism Spectrum Disorders will have easier access to early intervention services, following changes to the Helping Children with Autism package.

The changes will increase the number of service providers and allow families more time to use the $12,000 over two years available under this package.

This funding gives children with Autism Spectrum Disorders the chance to benefit from a range of early interventions, including one-on-one intensive activities and tailored group and individual programs.

From 19 October 2009, new arrangements will allow additional speech pathologists, occupational therapists and psychologists to participate in the autism program, subject to quality requirements.

Under the previous requirements, individual professionals could only be approved if they formed or joined consortia and operated as part of a team. Now these providers can join the program, increasing the number of service providers families can access across Australia .

Under the changes, families with children approved for early intervention funding will also be able to access early intervention funds until the child’s seventh birthday.

This has been increased from six years, and will give families an extra year to access autism services.

Families will still need to have their child diagnosed with Autism before their sixth birthday and see an Autism Advisor to access early intervention funding.

Parents who have since lost access to their approved early intervention funding because their child turned six, will be given an additional 12 months to use the funding.

Due to significant demand, some families have experienced waiting lists and have been unable to utilise their full funding package before their child had their sixth birthday.

Since October 2008, more than 3700 children have accessed services under the $190 million Helping Children with Autism package, the first national initiative to help families deal with this challenging disorder.

Currently there are almost 350 service organisations delivering early intervention in 536 locations across Australia .

Helping Children with Autism is making it easier for parents to access early intervention services for children with autism.

11 COMMENTS

Three websites worth a look

by Seana Smith on Thursday, September 17th, 2009

Until a nanosecond ago, I was going to write a blog called “Five Websites Worth a Look” and then I thought… hold on… five is too many to hit myself with at one time and I’ll bet other people feel the same way. Late of an evening I do still love to trawl through new websites, but three is the maximum I can deal with before either:

a)  sensory and mental overload kicks in and I need to reach for a glass of wine.

b)  I’m overwhelmed by exhaustion and need to reach for a glass of wine.

So lets wind back and let me present:

Three Websites Worth a Look

1.     www.servam.com.au

SERVAM is essentially a new Australian digital handbook for families, described by its authors as :  “An easy approach to integrating therapy and education in your family life.”

SERVAM is an arconym which stands for:

- Sensory considerations

- Environmental management

- Routines and planned change

- Visual supports

- Autism friendly communication

- Motivation

The handbook aims to assist families to work with their children and the team of professionals they use.   It is written by two experienced practitioners withj many years experience working with children on the spectrum.   It’s a new Australian resource worth knowing about, take a browse through the website and have a squizz.

2.   www.teaching.com.au

MTA stands for Modern Teaching Aids, and this website sells educational toys and resources for early childhood, primary and secondary students.  Your preschool or daycare facility will usually buy their toys from websites like this as will your schools.  The online brochure is HUGE and quite overwhelming, but worth getting to know.  It’s a terrific resource for when you are setting up therapy at home and just for good quality toys as presents.   Enjoy a pre-Christmas browse!

3.  http://www.blogher.com/identifying-and-avoiding-autism-cults

Autism mum Shannon Des Roches Rosa has written a long post on her blog about her own experiences with what she describes as “autism cults.”  It’s worth reading her opinions and point of view, and although she has tailored it for readers whose children are recently diagnosed there is still food for thought for those of us whose children were diagnosed long ago.

She’s written it as a cautionary tale and I can relate to that since I wrote my own biomed journey up as a Cautionary tale in our book.  I am not quite so anti-complementary medicines as Shannon seems to be, just a believer in one thing at a time and really trying to track whether changes are genuine or imagined.  Anyway, this American’s mom’s point of view is worth a read.

16 COMMENTS

Autism research on the home front

by Benison O'Reilly on Wednesday, September 9th, 2009

I remember one autism parent commenting once to my husband, a doctor, and me that, as health professionals, we must be really into biomedical interventions for ASD. Actually the reverse is true; apart from an abortive attempt to give our son fish oil we’ve done nothing: no supplements, no GFCF diet, no nothing, really.  My co-author Seana, in her own words, has done everything—we are in that sense the veritable odd couple.

It’s not like I haven’t read up on the topic either. The reason I remain sceptical is that when it comes to neurological disorders medical treatments, as a rule, tend to be pretty disappointing:   drugs for Parkinson’s disease lose their effectiveness and side effects develop, treatments for Alzheimer’s disease  and MS are of limited benefit.  We can use medicines to prevent strokes and (if the stroke is discovered in time) to limit their impact, but once the damage is done the mainstay of treatment is always rehabilitation, teaching the patient to walk, talk,  swallow etc.—in essence recreating important connections in the brain.  As all the research is pointing towards autism being a disorder of neural connectivity, I feel that therapy—speech, occupational, behavioural, developmental— to create those crucial neural connections is the way to go.

Many parents who go down the biomedical path talk to me of secretly hoping for the ‘magic bullet’, the one mystical pill, potion or supplement that is going to fix their child’s autism. In a way it’s tremendously liberating not to have that hope.  I’m happy to witness the incremental, but consistent, improvements that therapy seems to bring.

That doesn’t mean, however, that I’m not keen for clinical research into biomedical treatments to be done.  I believe it’s possible that some of these treatments may offer real benefits to some individuals on the spectrum, but I want to see evidence from proper randomised, controlled trials.

I am therefore excited about all the new research being conducted.  Get on the Internet and go to ClinicalTrials.gov to witness the sheer number and diversity of clinical trials underway into ASDs. On an even more exciting note, we now have some home-grown research happening, courtesy of the UniSA’s Autism Research Group (ARG).  Headed by Dr Manya Angley, The ARG is a multidisciplinary team of researchers aiming to better understand autism and help develop more effective diagnostic techniques and treatments.  Read more about their research at:

www.unisa.edu.au/sansominstitute/researchactivities/groups/autismresearch.asp

The search continues apace…

38 COMMENTS

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.

55 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.

2 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.

2 COMMENTS

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

2 COMMENTS