Look Me in the Eye

by Benison O'Reilly on Friday, October 30th, 2009

I’m a great devourer of books in general and books about ASD in particular, although I do go through times when I need a break from all things autism and during those periods read about anything but ASD.

Anyway, after a few months’ hiatus I have just finished reading Look Me in the Eye: My Life with Asperger’s by John Elder Robison (Bantam, 2007).  This book was published a while back, so forgive me if you’ve already read it and I’m a bit slow on the uptake, but I wanted to comment on how much I enjoyed it and how it helped me better understand my son, Joe.

Just after Joe was diagnosed, at age three, someone kind recommended I read Temple Grandin. I dutifully bought one of her books, but it was too early. I didn’t dare imagine my little blonde cherub as an adult with autism. That future seemed way too scary.  And while Temple Grandin is definitely a poster girl for autism success, she seemed at the time…well…a little humourless, and humour is a big part of our lives.

I really need to go and read her again now. Maybe she isn’t humourless at all. Maybe she is wonderfully droll, and I just failed to pick it up five years ago because nothing seemed very funny to me at the time. Now I have reached the stage of acceptance where I can imagine Joe as an adult and, if his present trajectory continues, hopefully working with computers.  We regularly drive past the Microsoft headquarters in Sydney and one day he told me he plans to work there when he grows up. Fingers crossed.

But back to Look Me in the Eye. It’s a wonderfully entertaining reading and definitely funny in parts. I loved reading about John Robison’s vivid imagination and tall story telling; the day, as a child, he realised that when someone made a comment you were expected to make a related comment back; why he finds it distracting to look people in the eye; that he often doesn’t even know when he’s fidgeting (Joe is a big fidgeter) and how his wife knows the right things to do to calm him down.  Lots of other things I’ve probably forgotten too.

However, it was the chapter called Becoming Normal that really caught my eye.  In that he talks of being, at the age of 16 years, before two game-show doors:  Door Number One, the ‘anxiety-filled, bright and disorderly world of people’, and Door Number Two, the comfortable world of machines and circuits. He chose Door Number One and has no regrets, even though he feels he has lost some of his savant skills as a consequence. Door Number One is the door we are gently edging Joe towards and I was pleased to have John Robison’s endorsement.

Of course my Joe isn’t John Elder Robison, but I do think he seems a little bit like him.  I heartily recommend Look Me in the Eye to other parents, particularly parents of children with Asperger’s, as an insight into the world of ASDs.  Books like this can only help our understanding.

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1 in 100, Part 2

by Benison O'Reilly on Saturday, October 24th, 2009

A couple of weeks ago I blogged about a recent British study which found an estimated 1 in 100 adults were on the autism spectrum. Today I will follow up with a report on a 2007 American survey of children that reached similar conclusions.  In fact, the US survey, which questioned a random sample of over 78,000 parents of children aged 3-17 years, actually found a prevalence of 110 per 10,000 or 1 in 91 in this age group. However, I’m sticking to my title, and after reading the survey methods and results I’d probably caution against hanging a huge amount of weight on that 1 in 91 figure.

The study, published in a recent issue of the medical journal Pediatrics, was part of 2007 National Survey of Children’s Health. ¹ Parents or guardians were asked if they had ever been told by a doctor or other health care provider that their child had ‘autism, Asperger disorder, pervasive developmental disorder, or other autism spectrum disorder’. If parents answered yes, they were asked if their child currently had autism or ASD and, if so, to provide a qualitative ranking of severity. Children were only classified as having ASD if their parents answered yes to both the first two questions (i.e. the parents claimed their child currently had ASD).

What seems surprising about this survey is that an unexpectedly large number of parents (representing 38.2% of those children who met the ever-reported criterion) answered no to that second question; that is, they claimed their child had previously been diagnosed with an ASD, but did not currently have the condition.  Thirty-eight percent sounds very high. It would be wonderful if we could declare this a success story for early intervention, but the authors propose a few other reasons:  possible misdiagnosis  in very young children (subsequently revised);  that ASD was once suspected at developmental screening but later ruled out and  thus the child was never really ‘diagnosed’;  diagnostic substitution  (where some children with another developmental condition might have at one stage been claimed to have an ASD to access ASD-specific funding/services);  and finally that some parents may have answered ‘no’ to the second question because their child no longer received special education or autism-specific services for the condition.

Researchers also found that the odds for boys having an ASD were 4 times as large as the odds for girls (consistent with previous research) and that non-Hispanic black and non-Hispanic multiracial children had 57% and 42% lower odds, respectively, of having an ASD than non-Hispanic white children (possibly due to poorer access to ASD diagnostic and intervention services).

Because ASD status in this survey based only on parental report and not confirmed by a health care worker, I’d suggest we treat that 1 in 91 figure with a bit of caution (although a quick search on Google suggests few others have thought to). However, whatever the case, the prevalence of ASD in this survey was found to be higher than previously reported and it appears that 1 in 100 (or 1%) figure is looking more and more likely (there is apparently a Center for Disease Control study yet to come).  The authors of the Pediatrics paper suggest that more inclusive survey questions, increased public awareness, and improved screening and identification by health care workers may go some way to explain this finding.

1. Kogan MD, et al. Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics 2009; 124: 0000 [accessed October 6, 2009]

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1 in 100, Part 1

by Benison O'Reilly on Wednesday, October 7th, 2009

Studies published in the last month on both sides of the Atlantic point to an ASD prevalence of around 1 in 100.  Whilst the US research in children (to be discussed in a future blog) has provoked familiar cries of an ‘autism epidemic’, the British research was actually conducted in adults and supports what some researchers have been saying for years:  autism spectrum disorders have always been with us, but our recognition of them has grown immeasurably in recent years.

The official title of the report is: Autism Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007 and it’s available for all to read at the NHS Information Centre: www.ic.nhs.uk/

As the title implies, the ASD research was part of a larger study on psychiatric morbidity. A random sample of adults aged 16 years and older was screened for ASD using a 20 item version of the Autism Quotient (AQ-20).  A subset of respondents with medium to high AQ-20 scores was selected to take part in a phase two interview, where assessments were carried out by clinically trained interviewers using the Autism Diagnostic Observation Schedule (ADOS). The results were weighted to generate a prevalence rate for the population as a whole.

Using a recommended threshold score on the ADOS, 1.0% of the adult population was assessed as having an ASD (i.e. Autistic Disorder, PDDNOS or Asperger’s Syndrome). The rate was higher in men (1.8%) than women (0.2%), consistent with childhood population studies.

Other findings included:

People who were single were more likely to be assessed with ASD.

The rate of ASD was lowest among those with a degree level qualification (0.2%) and highest among those with no qualifications (2.1%).

Those living in accommodation rented from a social landlord were the most likely to have ASD.

Being of low predicted verbal IQ was also associated with presence of ASD.

There was no indication of any increased use of treatment or services for mental or emotional problems among people with ASD (the implication being that they were underutilising services, not that they didn’t need them).

Because of the small sample size, the investigators advise caution interpreting the population distribution of ASD (particularly among women) but the results are interesting in that they suggest that rates of autism are broadly consistent across the age groups; that is, it’s as much a disorder of adults as it is of children.

On a personal note, I can’t help wondering how many adults on the spectrum are out there, not feeling all that ‘disabled’ and just quietly getting on with their lives.

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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

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.

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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.

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‘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.

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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.

3 COMMENTS