 What’s in an autism diagnosis?by Benison O'Reilly on Wednesday, March 3rd, 2010I’ve had one of those days today. Joe is home from school with a virus and fever. Unfortunately I had no choice but to drag him along with us when I took his older brother to the paediatrician’s and then on to big brother’s school: a strict, boys only school that accommodates 1400 young lads, ranging in age from ten to eighteen. I don’t know about your kids but Joe always becomes more autistic when he’s sick and today was no exception. He simply could not control his obsessions and kept inappropriately darting into offices at the paediatrician’s and brother’s school to look at computers. He is interested in Windows® operating systems – don’t ask me why. When we were finally on our way back to the car we passed a couple and their young son, dressed in school uniform, heading the other way. I knew they were on their way to an interview for a year 5 placement at the school in 2011. I knew because my husband and I went through the same process, twice, in earlier years, for Joe’s older brothers. It was a sad reminder how my little boy is different. Joe was on the school’s waiting list like his brothers before him, but when his name came up we politely declined an interview. We could never send him to such a boofy, blokey school. It’s the sort of school where you either sink or swim. Joe would sink. Instead I have his name down at a couple of expensive private schools that boast additional support for kids with special needs. Hopefully he will get a placement in one of these schools for Year 7 (mercifully still some years away). Whenever I get a little down like this I have to remind myself how far he’s come—light years—since diagnosis, six years ago last week. Which brings me to the news, admittedly a couple of weeks old, that the American Psychiatric Association have released their draft Diagnostic and Statistical Manual (DSM)-5, which, as widely predicted, has eliminated Asperger’s syndrome and PDD-NOS as diagnostic categories and instead bundled everyone on the spectrum under the umbrella term, autism spectrum disorder. Their reasons: Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”. This decision has provoked controversy. Some parents are aggrieved that their bright, hyper-verbal kids with Asperger’s will been lumped together in the same category as individuals with severe disabilities. I can understand this. Asperger’s sounds a more palatable disorder to most people, especially when so many misconceptions (‘they won’t look you in the eye’, ‘they don’t like people’, ‘they can’t talk’) about autism continue to exist. However, many kids with Asperger’s currently don’t get the support they need at school and maybe a different label will mean their difficulties will be taken more seriously in the future. Also, when I was writing the Australian Autism Handbook I spoke to a leading paediatrician who pointed out that a person with severe Asperger’s (very socially withdrawn, very rigid, very anxious) may well be more disabled than an individual with mild speech and developmental delay, but better social skills and an ability to go with the flow. As others have said, we need to remove the stigma associated with autism and the new DSM may turn out to be an important step. If you’d like to look at the DSM-5 proposed revision for autism spectrum disorder the link is here: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#
 A safe place to come for advice, support and inspiration.by Seana Smith on Tuesday, February 23rd, 2010What a lovely phrase that is. It’s just what we wanted the Australian Autism Handbook to be, but didn’t ever express it quite so well. “A safe place to come for advice, support and inspiration.” Have you heard of Autism United? Autism United is a new network for parents, professionals and people with an autism spectrum disorder. It has been created by a mum called Nicole and uses the Ning platform. Ning is a simple to use online social networking site builder. You can join and then post photos, videos, add your comments to the blog, ask questions in the forums… lots of ways to communicate with others. In the past I’ve been a very active member of some Yahoo groups, and am also a fan of some good autism-related Facebook pages. But I think the Ning framework is the best I’ve seen yet – for me it is lovely to see photos of members. For we visual people it really helps to build the community. You can find out more about Autism United at the website:
I emailed Nicole to ask why she had started Autism United and she replied: “The main reason that I wanted to start this network was because although these days you are hard pressed to find anyone who is not affected by autism, most of us are still dealing with it on our own behind closed doors. I figured that if I feel lonely, isolated and often at a loss then, many others must feel the same esp those who are just starting out. I had been talking about doing something like this for some time as I felt there was a real need. All the challenges that we faced over Christmas gave me the push to get started.
To be honest I think over the past couple years I have been working through different stages of grief since Dillon’s dx but over recent times was determined to turn that into something more proactive. My vision for this community is for it to be more than a forum, but a real community, be virtual or otherwise. I am hoping that we can make a difference in each others lives and even go the extra mile to make changes.”
I also appreciate very much Nicole’s notes: “Autism United Guidelines So true! We all have enough drama in our lives without finding it online as well. 1 in 110by Benison O'Reilly on Tuesday, February 16th, 2010At Christmas time I said I planned to write about the latest CDC (US Centers for Disease Control and Prevention) ASD prevalence data, released on December 18 last year. Finally I’ve got around to doing it. There were some mutterings on the Internet that we would have confirmation of that 1 in 100 figure, which was reported in a couple of other studies last year, but the CDC prevalence—amongst 8-year olds in 2006—was subsequently revealed to be the slightly less newsworthy 1 in 110. Still, that’s a big increase from the previous survey conducted in 2002. The full title of the study is: Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, United States, 2006. MMWR 2009; 58(SS10):1-20 Prevalence was estimated through a retrospective review of records in eleven sites participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network. To analyse changes in ASD prevalence, CDC compared the 2006 data with corresponding 2002 data, collected from 10 sites (all sites the same with the exception of Florida, which was not included in the 2002 survey). Children aged 8 years with a diagnosis of an ASD or descriptions consistent with an ASD were identified through screening and review of health and education records. Overall 2,757 (0.9%) of 307,790 children aged 8 years were identified as having an ASD, indicating an overall average prevalence of 9.0 per 1,000 population. Thus in 2006, on average, approximately 1% or one child in every 110 was classified as having an ASD. The average prevalence of ASDs among children aged 8 years increased 57% from 2002 to 2006. The researchers believe that whilst some of the increases are due to better detection, a true increase in risk cannot be ruled out. Delays in diagnosis persisted (average age at diagnosis was 54 months) but ASDs were diagnosed by professionals at earlier ages in 2006 than in 2002. Forty-one percent of children with an ASD also had signs of intellectual disability, confirming what a lot of us already knew: the majority of people on the spectrum are not intellectually impaired, as originally believed. If you’re interested, more information is available at: A little light reading….by Seana Smith on Wednesday, February 10th, 2010Have you heard of the magazine “Autism Asperger’s Digest”?
This Texas-based bi-monthly is published by Future Horizons, one of the largest publishers of autism books and materials in the world. The magazine aims to provide “real life information for meeting the real life challenges of ASD” and it’s just reached its 10th birthday. You can read more about the magazine here: And more about Future Horizons here: I subscribed to the magazine last year after having read it sporadically in the past. I do like it a lot, there’s a great deal of variety with lots of information plus plenty of thoughtful and well-written stories from parents. Here are some of the articles from the current edition. * Step by step teaching guideline for parents of significantly impaired children with ASD. * Vision therapy: ideas for school and home. * A Column from Ellen Notbohm * Early Intervention … 10 years later! * Temple Grandin’s column titled “Learning never stops.” Some of the adverts made me feel a bit distressed eg one for hyperbaric chambers encouraging the reader thus: ”Don’t put your miracle off any longer. Give us a call today.” Yuck! That’s too exploitative for me… not that I have anything against hyperbaric chambers (I know there are the subject of much research just now) nor indeed miracles… but people who PROMISE miracles… harumph! But I’m a believer in that old maxim: ”Take what you like and leave the rest” and I do find a lot to like in this magazine.
Gastrointestinal disorders and autismby Benison O'Reilly on Wednesday, February 3rd, 2010Parental anecdotes suggest that gastrointestinal disorders such as abdominal pain, constipation and chronic diarrhoea are more common amongst children with ASDs than in their typical peers. But are they really more common, or do parents of children with autism just look more strenuously for physical complaints that might explain their child’s odd and unsettling behaviours? Or maybe GI problems are more common in a subset of individuals with an ASD and the majority of kids on the spectrum remain unaffected? The jury is still out. The reported prevalence of gastrointestinal symptoms in children with ASDs has ranged from 9% to 70% depending on the type of study used to assess this.(1) As it seems with most health issues associated with autism, the research surrounding this topic is patchy and often of fairly low quality, leaving lots of questions unanswered. At last the mainstream medical community has tackled this evidence gap and produced a report with the ponderous title: Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs: A Consensus Report. Consensus reports are just that: a group of experts get together and reach a consensus, based on their own clinical experience and the existing evidence. In this particular case the experts came from a wide variety of disciplines: child psychiatry, developmental paediatrics, epidemiology, medical genetics, immunology, nursing, paediatric allergy, paediatric gastroenterology, paediatric pain, paediatric neurology, paediatric nutrition, and psychology. The report is not without controversy, as it questions some accepted beliefs, or rather beliefs accepted by many parents and ‘biomedical’ practitioners working outside the mainstream. For example • The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established. • The evidence for abnormal gastrointestinal permeability [in other words ‘leaky gut’] in individuals with ASDs is limited. Prospective studies should be performed to determine the role of abnormal permeability in neuropsychiatric manifestations of ASD • Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.(1 ) Science-speak, sorry. Scientific writing is almost always like that; everything is qualified. It’s the nature of science—nothing is considered ‘proven’ until there is an overwhelming body of good quality evidence to support it—but unfortunately this sort of language sounds wishy-washy to parents desperately seeking answers. Anyway, there are some significant breakthroughs contained in this report; in particular it recognises that in individuals with an ASD and limited communication skills, gastrointestinal complaints (e.g. abdominal pain) may manifest themselves as problem behaviours like sleep disturbance, aggression and self-injury, and that physical causes for problem behaviours should be considered if a child with autism starts to act up unexpectedly. When it comes to investigating GI complaints we need to be particular vigilant with individuals who lack the ability to communicate their distress. The report also calls for lots more research and recommends that all clinical studies include a genetic testing component, in the hope of identifying particular genotypes of children with ASD who are more prone to GI complaints. For those who are interested, the report was published in the January issue of the medical journal Pediatrics and is free to download at: http://pediatrics.aappublications.org/cgi/content/full/125/Supplement_1/S1 1. Buie T, Campbell DB, Fuchs GJ, et al. Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs: A Consensus Report. Pediatrics 2010;125:S1–S18 High School – the first three daysby Seana Smith on Friday, January 29th, 2010Well, we made it, and yes, I did cry. Tears trickled as I dropped my son Tom off and when we new parents listened to the teachers talking at our first general parents’ meeting. It all really took me back to Tom’s very first day at school seven years ago, but my emotions were totally different. Then it was anxiety and hope and concern and relief all in a big teary mess. This time was pride and gratitude most of all. I’m so proud of my son, and so grateful to his teachers for sharing the pleasures and pains of his care as he grows up to be a man. And when I say that WE made it… well, it was a joint effort… and we parents did talk about how we felt like new boys and girls too. A big job for me is to make friends with other parents, to be aware of who is who and to be able to support Tom very much as he begins to make friends with other boys. This will be much trickier than at primary school, but I know that I can help him a lot, explain his oddities to both parents and children. I must also help my son to get the right bags, books and clothes to the right place at the right time… it’s no little matter when geting all four children ready for school and preschool in the morning! Tom will be terribly anxious if he misses anything so I need to keep my wits about me as we do this.. and I don’t find the whole thing easy at all. Tom’s a very social boy, and indeed rather over-social sometimes. The social aspect of school isn’t going to be the biggest issue though, it’s the academics. Tom has serious learning difficulties and a language disorder. His teachers should be well briefed that Tom needs to have a modified curriculum, which I imagine is quite a burden for them. Tom (and I!) are quite blithe about his learning issues, but I do fear that one day he may be more aware of his differences and then will need lots of support. Anyway, this is the start… I am so glad to have found a school which is very welcoming to our family and where the lines of communication seem to be strong. In fact I am just off to a meeting with his teachers now. Must dash, but one final thought…. Tom’s first day at high school reminded me also of my first day at high school way back last century… especially in the immediate crush on the head boy… haven’t I matured at all in the last 29 years??!!
Ten Things Every Child with Autism Wishes You Knew (or occasionally need to be reminded about)by Benison O'Reilly on Sunday, January 10th, 2010I have mentioned before that I go through stages when I steer clear of books about autism. Sometimes it’s because of work commitments (I have two other writing projects at present) and sometimes it’s just because I want to read for pleasure. Anyway I’m on holidays right now and decided, as penance for all my partying and overindulgence in December, to forgo the trashy novel and tackle an autism book that has been sitting on my bedside table for months, staring at me in an accusatory fashion, as if saying, ‘You bought me. Why don’t you read me?’ I don’t know why I kept avoiding it — it’s such a slim volume, a ‘knock it over in a couple of hours’ book. It is, as you may well have guessed, Ten Things Every Child with Autism Wishes You Knew (Future Horizons, 2005), by American author and ASD mum Ellen Notbohm. Well, I’ve read it now and can give it the big thumbs up. My only qualification is this: it’s liberally sprinkled with anecdotes of success relating to Ms Notbohm’s own son, who I have to say comes across at very high functioning, and I imagine this might grate for some parents of children with more profound disabilities. (It even grated a bit with me – it’s impossible not to compare). I’m sure many of her son’s achievements came about as a consequence of Ms Notbohm’s wonderful committed parenting, but I’ve known equally committed parents who have not been fortunate enough to witness these outcomes. I think the book would be stronger if she used anecdotes showcasing a greater range of children to illustrate her points. However, it’s a minor quibble. It’s a warm hearted book from a warm hearted ASD mum, who preaches acceptance and understanding. In my opinion the most important of her ten ‘things’ are these:
I wish more parents and educators would embrace Ellen Notbohm’s philosophies, focusing more on what children with ASD ‘can-do’ instead of ‘can’t-do’. The latter approach is probably setting many young people up for self-esteem problems. Not that I’m claiming perfection on this point; on the contrary the book was a timely wake-up call for me after I lost my cool with Joe for being too scared to go on most of the rides at the (very expensive) fun park we attended the other day. When he insisted on playing 18 holes of minigolf in the baking sun before we left I should have celebrated his interest in and perseverance at the game, rather than grumble on about being hot and tired. So, if like me you’re bit of a jaded ASD parent, I’d recommend you get hold of a copy of Ten Things Every Child with Autism Wishes You Knew to remind yourself what it’s all about. I’m planning to stick a couple of inspirational quotes on my fridge when I get home.
Merry Christmas from the authors of ‘The Australian Autism Handbook’by Benison O'Reilly on Thursday, December 24th, 2009Seana is down the coast with her family and hopefully nowhere near a computer screen, so I will pass on Christmas greetings to our readers on her behalf. I was planning a weightier contribution today, on the latest CDC prevalence data from the US, but I’ve decided that can wait until next week. One of the many pleasures I’ve had this Christmas is the sight of the attractively decorated Christmas tree in my living room, surrounded by brightly wrapped presents. When Joe was younger he would constantly remove decorations from the tree, attracted by their colour and shine. He’s always had a few visual stims. As a consequence our tree always looked like it had been decorated by someone who had consumed too much of the Christmas punch! We also couldn’t put wrapped Christmas presents under the tree, because young Joe assumed all gifts were for him and would rip the paper off them just as quickly as I could wrap them. Now the attraction of Christmas decorations has passed (although not completely the visual stims) and he can read the cards on the presents and know they are not for him. However, I got him to help to wrap the presents for his younger cousins, so that he would know they weren’t toys that would interest him, just in case! Progress with a child on the autism spectrum can be measured in many ways. Anyway, we hope that you have a wonderful Christmas with your relative with an ASD and that 2010 is a good year for you all. Best wishes, Benison and Seana Rolling Out the Autism Specific Early Learning and Care Centresby Seana Smith on Friday, December 18th, 20092010 will see the start of something new for Australia, government-funded full-time child care centres for children with autism spectrum disorders. These will be a real boon for working parents and for families with lots of children especially. There are six centres opening next year which will provide places for 120 children. So this is, like the Helping Children with Autism package, a good start… but just a start in the campaign to provide expert, intensive and proven early intervention programs for every single Australian child with an ASD. To read all about the centres and find out where they all are, click below: As ever, it’s a great idea to get your name on a waiting list early, here’s a link to a pdf with info on how to get on the waiting list for the SW Sydney Centre: http://www.ku.com.au/resources/other/Marcia%20Burgess%20ASELCC%20Centre%20Brochure.pdf
On GPs and autismby Benison O'Reilly on Thursday, December 10th, 2009This quote early in the Australian Autism Handbook reflects an all too common experience: I regret wasting a year listening to doctors who kept telling me that my son was “delayed” but would “catch up”. I should have arranged a full assessment as soon as I realised something was wrong. We all know that kids with ASD are not going to ‘catch up’, at least not without a lot of intervention. Parents have the right to feel aggrieved when important months are lost as a consequence of false reassurance, but unfortunately an experience like this can go on to colour (and not in a good way) the ongoing relationship between an ASD family and the mainstream medical world. Usually the main culprit identified in these stories is the family general practitioner. I happen to know a fair bit about GPs, as I’m married to one. I also happen to know that GPs receive virtually no education in ASDs. It’s thus unsurprising that many of them get it wrong, especially when presented with a child displaying the sometimes subtle symptoms of PPD-NOS or Asperger’s. Still, something needs to change, and the medical community is aware of it. A 2008 survey in the UK found that 80% of GPs believed they needed additional guidance and training to help them identify and manage ASDs better, and it’s likely an Australian survey would produce similar results. Keen to bridge the gap between parents and his medical colleagues, my husband recently developed a series of learning objectives on ASDs for GPs. He presented his ideas in a paper at the Asia Pacific Autism Conference in August, provoking some interest from the specialist medical media. As a consequence, a feature article appeared in the November 11 issue of Australian Doctor, the writer, Jane McCredie, doing an exemplary job of summing up the issues surrounding the GP and parent divide. Unfortunately the article is not accessible to the general public but I have been give permission to quote from it. Associate Professor Cheryl Dissanayake, Director of La Trobe University’s Olga Tennison Autism Research Centre, was interviewed for the piece. She agrees that doctors need to act sooner: “Six months is a long time in the life of a developing baby…That’s where we have to empower both parents and primary care professionals, if they have concerns, to act on them.” As the article makes clear, no one is expecting GPs to become experts in ASDs. That’s not feasible, nor even desirable. But it is reasonable to expect that GPs be aware that any child presenting with any of the red flags: *lack of babbling or pointing by 12 months;
In the ideal world of the future GPs could also learn to actively screen toddler for ASD symptoms, and become genuine advocates for families affected by ASD: helping them to access the full range of services available under Medicare; directing them to reliable information sources, and providing emotional and practical support to struggling parents and siblings. I hope lots of medicos read their Australian Doctor on November 11. Under the auspices of the training organisation, GP Synergy, my husband recently ran two small ASD training seminars for GPs: one in Sydney and one in regional NSW, which were enthusiastically received by all participants. It’s a drop in the ocean but there is no reason why other general practice training organisations can’t follow suit.
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