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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ASD Families On Video

by Seana Smith on Thursday, October 29th, 2009

Have you had a look at the videos on the Raising Children Network autims website yet?  So far there are 10 short videos posted there, all interviews with lots of different parents and each covering a single theme.

http://raisingchildren.net.au/articles/asd_diagnosis_video.html

There are so many stories here, and plenty of good ideas and advice.   You may end up nodding as you hear these parents talk, they may offer you some hope and inspiration.

They subjects discussed include diagnosis, extended family, schooling and early intervention.

This is a fantastic use of the internet, showing it’s great power and potential as a tool for sharing of stories, ideas and useful information.

The families who have been filmed for these videos have done a really good job, and they  really deserve a big “thank you” for their honesty, in sharing their stories- it’s not an easy thing to do.

I still get all emotional at times when I watch these videos- and what a range of emotions, the pride, the hurt, the joy, it’s all there and more in these family stories.

Well done also to Fiona and colleagues at the Raising Children Network who have done a great  job.

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On the Move…

by Lucy Blunt on Wednesday, October 28th, 2009

October is Breast Cancer Awareness month!!  We have just returned from New Zealand, where Eloise and I were kindly invited to tour along with the New Zealand Breast Cancer Foundation’s (NZBCF) roadshow.  We spoke in Wellington and Nelson about the immense psychosocial impact of Breast Cancer on women and their families.  We felt very fortunate to be included in such a worthwhile campaign. 

The tour was also fabulous as it introduced me once again to the impact of a cancer diagnosis in its initial stages.  We met some truly wonderful women and their partners, who also struggle to come to terms with the powerlessness and fear which is induced by a diagnosis.  It was great to be able to talk with these women and to see the benefit they received from the NZBCF from hearing more about what options, resources and information were avilable and which they would need to equip them along their journey.

This week I gave a lecture at Royal North Shore Hospital to the Year 2 Medical students on the Psychosocial Impact of Breast Cancer.  I give this talk every year and absolutely love doing it, as it allows me to have contact with 40 or so young people who are about to become the next generation of doctors.  We talk about what works and what doesn’t at a psychological level for cancer sufferers while they go through treatment.  The feedback is always about how useful it is for the students to come into contact with a “live” patient and to hear firsthand about someone’s experience and to be able to ask questions without the fear of being the treating doctor at the time.  Research indicates that when young doctors give bad news for the first time and it “seems” to go well, they are likely to adopt this method of news giving for the rest of their professional lives.  As most patients are in shock at the time they are given bad news, it doesn’t allow much opportunity for feedback to the medical practitioner as to whether or not their method was good, bad or indifferent.  Allowing medical students the opportunity to hear about what does and doesn’t work for patients gives them the chance to learn about the best practise model and to refine their own techniques before being let loose on the public!

Back at work again now and admiring the plethora of people wearing pink ribbons and badges showing their support of cancer and breast cancer.  Now we just need to add a couple more research breakthroughs…

With warmest wishes,

Lucy

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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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WA Research on rise in diagnosis

by Seana Smith on Tuesday, October 20th, 2009

Here’s a news report about a forthcoming journal article which is relevent to our blog posts on rising diagnosis:

http://www.sciencealert.com.au/news/20091910-20024.html

Perhaps Benison could have a look at this article when it’s published and give us her precis and thoughts ???

This is Australian research from WA, which is currently the state with the best figures for ASD numbers.  However, an Australia-wide register of ASD is going to happen fairly soon and we’ll post more info about that when it launches.

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1 in 100, a real life story

by Seana Smith on Tuesday, October 13th, 2009

I’m so interested in all these reports into research about the incidence of ASD and the roaring rise in diagnosis. It’s good to have Benison giving us a simple explanation of the science and I am sure she is right to note that many people are living with ASD and getting on pretty well.   I certainly know many dads who have diagnosed themselves with Aspergers and then had that diagnosis confirmed by professionals after their children have been diagnosed as being somewhere on the spectrum.

However, I’m also sure that there are many adults with ASD who have never been diagnosed and whose lives may be the worse for that, not to mention their families’ lives.   Here’s a real-life story to illustrate this.

A little 3-year old boy doesn’t really talk much, he just says the odd word.   He used to bang his head a lot when he was in a cot and he looks at his hands a lot.   He doesn’t really make friends with other children and relies on his big brother to talk for him.

I know what you’re thinking… this child is about to get an assessment for an ASD.  But no… read on…

The little boys mother says he starts to talk a bit more at four.  He doesn’t make real friends at school and has some learning issues.  He still relies on his big brother a lot.   He goes on to high school.  He is a wonderful artist and loves those lessons most of all, he wins prizes in competitions.   He still doesn’t socialise at all.  He loves everything to be organised and neat.

I know… you’re getting warm… he’s about to be diagnosed with Aspergers… But no… read on….

This young man is offered a place at art school.  He goes but only manages to stay six weeks.  He comes home and stays living with his mother.   He never gets a job, he never leaves home, he never has any friends of his own. He can’t leave the house alone, he is treated for anxiety with Valium.  After many years he manages to stop taking Valium.  He starts drinking instead.

When this man is in his 40’s a cousin’s young child is diagnosed at with an ASD.  This middle-aged man’s mother wonders, for the first time:  ”Could my son have Aspergers?”

Could he?  Could this man be one of the hidden hordes?  Could he be one of the many adults with an ASD who have never had the benefit of a diagnosis and so no proper treatment or understanding?

I’m not sure but I’d certainly like to know whether this young boy who banged his head and then grew into a man with no job, home of his own and no friends does have an ASD.  He’s my cousin you see, and mine is the son who did get that diagnosis aged three.  And maybe my son is just like my cousin, just forty years younger and a lot luckier.

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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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