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?

It is to my mind one of the most exquisitely cruel aspects of early childhood autism that it only becomes apparent to parents very slowly that there is anything wrong with their child.

This quote, by Anne Lovell, appears in the Australian Autism Handbook, and I think probably resonates with many autism parents.  It certainly resonates with me.

I have to admit it took me longer than average to realise anything was amiss with Joe.  I picked up he was a more challenging newborn than his older brothers and questioned his poor eye contact with the paediatrician at his six week check, but then relaxed as he appeared to develop normally.  He started saying a few words and by nine months was an outgoing, charming baby.  I have the photos to prove it.

I think this started going wrong around the time of his first birthday but it wasn’t until his second that we started proper investigations. In Joe’s case his development stalled; if there was regression it was subtle.

How much harder to be Anthony Macris and his partner, Kathy, confronted with regressive autism.  At eighteen months of age their son, Alex, looked to all the world like a typical child, even an advanced child. And then autism wiped it all away in the space of a few months.

The title of the book comes from Alex’s language regression—he started reversing his words and ‘horse’ somehow became ‘saw’. Eventually he lost all his language.  I tossed and turned the night I read these early chapters: the distress the poor sweet toddler experienced as his brain wiring scrambled and world he thought he knew became scary and unfamiliar.

However, I ploughed on and I’m glad I did.

Like all autism parents,  Macris and Kathy had to go through that strange process, grieving for a child who was ‘lost’, yet somehow still there.

Grief is about loss, and we suffered a cruel paradox. Alex was with us, physically healthy, thriving. His brain, too, was growing, but it was developing in the wrong way, disordering his senses, fragmenting his speech, obliterating his reason.

But, also like other parents, they eventually dragged themselves up off the carpet and got on with helping their son, through an intensive applied behavioural analysis (ABA) program.

It was strange to read this book. Although I have not met Macris, our sons are of a similar age and both were enrolled in ABA programs. Some of the doctors and therapists the Macris family consults, although not mentioned by name, I know.  We live in a similar part of Sydney and the landmarks Macris visits with Alex are familiar: Broadway Shopping Centre, the Sydney Aquarium, Ashfield pool.  We have walked the same path in more ways than one.

Macris is novelist and university lecturer in creative writing and this memoir comes with the bonus of being beautifully written.  I adore this description of our home city:

Sydney was sulking under gloomy skies. When it was sun-drenched the city was spectacular, but overcast it looked anaemic, desperate for its next dose of sunlight.

A couple of observations: Macris studied philosophy in his youth.  I can’t help feeling that being schooled in the discipline of wisdom and reason would help a great deal when finding yourself the parent of a disabled child.  It may have been what stopped Macris pursuing ‘extreme’ treatments, which must seem all the more seductive when confronted with a child with severe autism:

When a condition has no known cause, no reliable treatment, yet has such devastating long-term consequences, it isn’t long before you come up against the limits of human reason. I found some of the therapies on offer frighteningly extreme, and was reminded that few things are more disturbing or dangerous than misguided hope.

Secondly: it is a political book. Macris has much to say about our society. We live in an affluent country but our governments make no attempt to adequately fund the services that individuals with autism and other disabilities desperately need. His family comes across many caring professionals in the public system, but none is able to promise them what Alex needs, only what the government is prepared to offer—in a nutshell, not much. The government, it seems, is the intervention provider of last choice.

Eventually Macris and Kathy realise that they will have to fund Alex’s intervention from their own not-particularly-deep pockets. But we have to ask: What happens to the people who have no money to spare?

Ultimately, however, it is a book about love.  The love of a mother and father for their son. At the end of the book Alex is aged nine years. He remains significantly affected by autism but is a happy child. His parents clearly adore him. There are many sadder stories.

If you’re over reading books about recovery and cures and are ready to read about love and acceptance I can heartily recommend When Horse Became Saw.

Who says that people with intellectual disabilities can’t be great entertainers?

Not me… and certainly not the three co-writers and stars of a new Australian movie ‘Down Under Mystery Tour.”

If you remember the ABC dock series ‘Unlikely Travellers’ you will already know one of the main characters in the movie, Darren Magee. Darren became an audience favourite when he was one of  six people with disabilities visiting Egypt for two weeks.

James Bradley was also seen in ‘Unlikely Travelers.’ James has Asperger’s syndrome and was the youngest member of the group who visited Egypt.  Malcolm Bebb was seen in the doco series, though he didn’t go to Egypt.

There’s been a certain amount of controversy about this movie, which was co-written and produced and directed by Michael Noonan, as part of his PhD which explores disability comedy.  Michael also made ‘Unlikely Travellers.’

Michael describes ‘Down Under Mystery Tour’ as: ‘edgy, confronting and unique, and I believe it has valuable educational potential.”

Michael has created a 5-DVD educational resource that includes the film, a two-hour forum featuring five disability experts, a documentary about the controversy surrounding the work and lots of commentaries and additional scenes.

The pack also includes extensive lesson plans and articles, and a bonus copy of the feature documentary Unlikely Travellers, which won an IF Award for Best Australian Documentary in 2007. All materials are fully captioned, the main feature has audio description and time-coded transcripts are included for all video materials.

You can find more information on the education pack here.

I enjoyed the movie, why wouldn’t I?  I’m very interested in disability issues and also in having a laugh.  The movie and the education pack are a great way to open up a swathe of issues for debate in the classroom.

Have a look at the trailer below.

Do you think you’d enjoy this movie?  Have you seen it?

Autism was not even on my family’s radar when Joe came along.  What went wrong? Why did he develop autism when his brothers and cousins did not? It’s a question I’m sure all parents in a similar situation have asked themselves.

Despite the somewhat controversial conclusions of a recent twin study, it’s pretty clear that ASDs are strongly genetic in origin. However, the genetics are complex (involving multiple genes) and many experts believe that environmental factors-defined as anything that affects development from the time of fertilisation-may interact with genetic factors to increase the risk.

A recent meta-analysis of 40 studies, published in the July 11 issues of the journal Pediatrics, looked for evidence of specific perinatal (relating to the period shortly before and after birth) and neonatal (relating to the first 28 days of an infant’s life) risk factors for autism.

As we explained in the Australian Autism Handbook, meta-analyses allow researchers to pool together data from several trials and analyse the results. The larger patient numbers means we are sometimes able to pick up treatment effects (or in this particular example risk factors) that were not evident in the individual small trials.

Conversely, in some small trials a risk factor may be falsely identified, simply due to random chance. If we combine the results of several studies the chance of this happening is reduced.  However, when performing meta-analyses it’s essential that the individual trials are similar enough in design to be suitable for pooling; if not, the results will be meaningless.

The recent meta-analysis by a group of US researchers found the following perinatal and neonatal factors were all associated with a statistically significant increased risk of autism:

• foetal distress
• birth injury or trauma
• multiple births
• maternal bleeding during labour and delivery
• summer birth
• low birth-weight
• congenital malformations (birth defects)
• low 5-minute Apgar score
• feeding difficulties
• meconium aspiration, and
• neonatal anaemia or jaundice.

On the contrary, factors found not to be significantly associated with autism risk included:

• anaesthesia use
• assisted vaginal delivery
• post-term birth
• high birth weight, and
• head circumference (other studies have found that rapid head growth associated with autism occurs after birth).

It’s important to note that a risk factor is simply something that increases your chance of developing a disease or a condition. It’s obvious that not all low birth-weight babies—or children who experience birth complications—will go on to develop autism. (And if by chance you’re having a new baby this summer the odds are that he/she will be perfectly fine!)  To provide some examples from the meta-analysis:  the investigators found that a baby weighing less than 1.5 kg at birth was three times more likely to develop autism than a baby weighing in the normal range at birth. The relative risk of a twin developing autism was 1.77—that is, not quite double that of a singleton child.  The highest risk identified was for babies who asphyxiated meconium (a birth complication associated with foetal distress); their risk of developing autism was increased over seven-fold.*

The same investigators published an earlier meta-analysis looking at prenatal (occurring or existing before birth) risk factors for autism. In that study they identified advanced maternal and paternal age, maternal bleeding, maternal diabetes during pregnancy, being first born and maternal prenatal medication use as risk factors.

This raises the chicken and egg question with the current study—did something go wrong with baby earlier, during foetal development, which resulted in a complicated delivery, or did the complicated delivery (potentially causing oxygen deprivation) trigger autism in the child, perhaps because they were already genetically vulnerable?

The answers to these questions remain elusive, but each new study improves our understanding of this perplexing condition.

*If you need reminding what the normal odds of having a child with ASD are it’s anything from 1:160, based on Australian research, to 1 in 110 – or approximately 1% – according to the lastest US data.

Recently a federal government-commissioned report, Post-diagnosis support for children with Autism Spectrum Disorder, their families and carers, landed in my Inbox. The lengthy report, produced by Social Policy Research Centre at the University Of New South Wales, makes interesting reading. Its findings are based on a literature review and interviews with 49 parents and ASD service providers in New South Wales, Queensland, Western Australia and Victoria.

One small section in the report struck me particularly. It’s simply titled ‘Autism is expensive.’

Here’s an illustrative quote from a mother:

We will go back to the paediatrician because the other information that the paediatrician gave me—which was really, really useful—autism is expensive. There’s no pretty way of saying it. It’s an expensive syndrome. I mean it can not be, but [it has to be] to improve it so that [child’s name] quality of life as he gets older tends to more towards that normal strain and he does have the ability to get into mainstream school and things like that. (Jill, parent, NSW)

I’ve been thinking about this lately, as it becomes apparent that our family, although well off by general standards —we have a nice (albeit heavily mortgaged) house in a good suburb—has been left behind materially by many of our friends.   Whilst our peers sink their money into real estate and prestige cars, we have spent much of our ‘disposable’ income in recent years on ABA ($100,000+), Joe’s private special education school, speech therapy, OT, play therapy, physiotherapy, Fast ForWord, RDI etc. The list goes on and on.

That said, I acknowledge that we are also extremely fortunate, much better off than families who have either sold their house or cashed in their superannuation to pay for therapies, leaving them with uncertain financial futures.

Another quote from the report:

Katrina, an ABA service provider, put it this way: ‘We know what parents need, and what we’re saying parents need costs a lot of money’. Katrina also reported that parents often take on second jobs. This was supported by Steve, who sold his house and took on a second job to pay for intensive, home-based ABA services. Similarly, Mavis said that she works in the evenings to pay for her child’s therapies (not ABA).

But worst affected of all are the many parents who have no assets to sell in the first place. Their children usually have to settle for cobbled-together—and invariably non-intensive — early intervention services, or simply go without. This is heartbreaking and unfair.  Yes, the Helping Children with Autism package was a great step forward but it’s not enough.

Cost of therapies aside, the main factor affecting my own family’s income is the fact I have— apart from writing a few  books (and unless your name is James Patterson or JK Rowling writing is rarely a way to make money)—been unable to hold down a permanent job since Joe’s diagnosis.

Thus the findings of a study conducted by the University of Pennsylvania, and presented at the 2011 International Meeting for Autism Research (IMFAR) conference, held in San Diego in May, came as no surprise.

Researchers analysed data from Medical Expenditure Panel Survey (MEPS) 2002-2007, an annual survey that collects detailed information on healthcare use, costs, health insurance, health status, socioeconomic, demographic and employment characteristics for nationally representative samples of US households. Children with autism were identified and then matched with their parents, so data could be evaluated.

They found that autism was associated with a staggering 27% reduction in family income. Predictably most, but not all, of this was due to a reduction in the income of mothers.

Among the findings:

• 62% of the mothers with children with autism were employed outside the home, compared with 71% of mothers of other children without autism.
• Mothers of children with autism earned 39% less than mothers of children without an ASD.

Why? Researchers believe that the efforts required to co-ordinate the child’s therapy program take up so much time that someone’s job has to give.  And it seems that ‘someone’ is usually the mother. That’s certainly what happened in our household. My husband was the main bread winner so it was my career that went on hold after Joe’s diagnosis.

So we ASD parents cop it from both ends: expensive therapies and loss of income! No wonder there is a push for a National Disability Insurance Scheme in this country.

What’s been your family’s experience? Did autism affect your career and finances?