 Autism at Easter – good news weekby Benison O'Reilly on Tuesday, April 13th, 2010It’s the Easter holidays and in our household that means one thing—well two things, actually, Easter eggs and the Sydney Royal Easter Show. The first is easy enough to accommodate, but the second…hmm. If any of you have read the Australian Autism Handbook, you’ll know that Joe, despite having a few sensory issues, loves the Easter Show—the whole, noisy, smelly, crowded deal. As a result we have to go every year, rain or shine. In a development of sorts he asked to take a friend from school this year. I regarded this as a mixed blessing. It’s wonderful that the desire for friendship is there, but he lacks the social skills—the sharing, the reciprocal conversation—to really connect in a friend-like way. In the end I was unable to oblige anyway: all the kids we asked were either away or sick or otherwise engaged that day. Joe took the news badly. He cried in fact, and when my little boy is sad I am doubly so. I spoke to a few people about this, and the consensus is that his desire for friendship is ultimately a good thing. It is just my job to keep working with him, so eventually he does develop the skills to maintain a real connection with his peers. It will probably be based around IT and computer games, and with other kids on the spectrum, but that’s okay. When we made it to the show he‘d gotten over his disappointment, and was happy with his two show bags and four rides. It was a joy to witness his excited smile as he flashed by me on the roller coaster. It was less a joy to join him on a ride called the ‘Wild Raft’, which left me feeling nauseous for hours. The whole family is off to Hong Kong tomorrow for a week. I’ve decided Joe’s dad can take his son to Disneyland whilst I go shopping. Anyway, as we’re in holiday mode I’m not keen on the idea of dissecting any science, so I’m just going to mention a good news story which appeared in the media this week. It’s about Specilisterne, a Danish software company, where every worker on the payroll has an ASD. It was founded by a gentleman called Thorkill Sonne, who is the father of a boy with autism. Sonne was a keynote speaker at the Asia Pacific Autism Conference held in Sydney last August. Unfortunately I was manning the AAH stand and didn’t get a chance to hear him speak then, so I was very interested in this report from (American) ABC News. According to the report Sonne: ‘…means to change the nature of the way society views disability. Sonne believes that workers with high-functioning autism have different brain wiring that gives them an edge’. He lists good memory, a strong attention to detail, persistence and ability to follow instructions as skills that are important in software testing. It’s refreshing for a change to see someone looking at autistic traits as strengths, rather than disabilities. As I’ve mentioned before, Joe is a mini-IT guru in the making and if more companies do decide to follow Specilisterne’s lead his future employment opportunities could be bright. Maybe he’ll even pick up a few friends along the way, too.
Book Review – The Complete Guide to Autism Treatmentsby Benison O'Reilly on Tuesday, March 30th, 2010I was recently given a copy of The Complete Guide to Autism Treatments (2007), by Sabrina Karen Freeman. Dr Freeman is a Canadian with a doctorate from Stanford University and a daughter on the autism spectrum. My alarm bells tinkled when I noticed it was published by a company called SKF Books (Sabrina Karen Freeman?); that is, it appears self-published. That’s always a slightly worrying sign. Is it a book written by someone pushing an agenda? Well, yes, Dr Freeman is pushing an agenda, but it’s not an agenda driven by self-gain. She is promoting science-based treatments for ASD and thus I thoroughly approve. It’s a no-nonsense book, with a no-nonsense cover, which I suspect reflects the personality of its author. Dr Freeman calls it as she sees it. In essence The Complete Guide to Autism Treatments is a longer and more comprehensive discussion of Chapters 4 (Early Intervention) and 6 (The Medical Maze) in the Australian Autism Handbook. (This is not meant to be a criticism of the AAH—we always intended our book to be an introduction to the topic of ASDs rather than a definitive account!) If there are any parents out there who are interested in reading more about the science behind autism treatments they could do worse than buy this book. Do I have any criticisms? Yes, the book is a little bit gung ho in its endorsement of intensive behavioural intervention—suggesting trials comparing it with other less-proven early intervention models would be unethical—but she’s right in her assertion that it is one of the few true evidence-based treatments for ASDs. And, though this is hardly the author’s fault, it was written in 2007 so some of the research has moved on from that time—an unavoidable downside of print publications. (On that note, we are planning to publish a second, updated edition of the AAH in late 2011.) Section One of the book is called: What Works and What Doesn’t? and is a therapy by therapy dissection of the various early intervention models, biomedical treatments, speech and language therapies and so-called ‘miscellaneous’ therapies (such as sensory integration, art and dolphin therapies). Dr Freeman looks at the evidence—or more commonly the lack of evidence—supporting these interventions. Section Two is even more useful. It’s entitled How Do We Know What Works and What Doesn’t. If a parent applies the principles explained in this section, they will have the skills to examine the claims made about any new therapy they encounter, and be able to discern real science from ‘snake-oil’ (to use the author’s term). Just as the catchphrase from the movie Jerry Maguire is ‘Show me the money!’; Dr Freeman’s is ‘Show me the data!’ The conclusion of the book has a great section called ‘Red flags for quackery’. I won’t list all the author’s points, but do especially like her observation that ‘glossy sell sheets and videos’ for a therapy are a quackery red flag. As she explains: ‘Generally scientists do not waste grant money on attempting to sell their research, and then take it prematurely out of the lab and into the population at large. Genuine scientists are the least likely to use marketing tools of persuasion.’ Anyway, if I’ve piqued your interest check it out (not sure if it’s available as a e-book, Seana). And don’t forget World Autism Awareness Day on April 2nd. What’s in an autism diagnosis, Part 2by Benison O'Reilly on Wednesday, March 17th, 2010I love Seana’s latest blog about the iPhone Apps. She is such a tech-head, unlike her co-author, who learns just enough about technology to function in this modern world, but no more. However, the next generation of my household may turn out to be quite different. I mentioned that Joe has a computer obsession last time. His latest irritating habits are to download random bits of software from the Internet and to try and reprogram our computers using MS-DOS. He is just nine years old, too! I came in this afternoon to discover a blue screen on my laptop – never a promising sign. My budding computer technician (aka Joe) looked decidedly guilty, but couldn’t help proclaiming, ‘It’s the blue screen of death!’ Where does he learn these things? Our long-suffering professional computer technician, who we have to call periodically to undo the worst of Joe’s handiwork, has suggested we give Joe his own, old computer that he can trash to his heart’s content. I’m not so keen, however, as we would be giving in completely to his autistic obsession, never a wise thing in my opinion. Anyway, speaking of obsessions, I thought I’d continue on where I Ieft off last time, discussing the proposed DSM-5 for autism spectrum disorder. We mentioned last time the elimination of Asperger’s syndrome and PDD-NOS as separate diagnostic categories, but there are other changes afoot too. In the DSM-IV there were three domains of deficits for autistic disorder: qualitative impairment in social interaction; qualitative impairments in communication; and restricted, repetitive, and stereotyped patterns of behaviour, interests, and activities. In the DSM-5 these three domains become two: 1) Social/communication deficits 2) Fixated interests and repetitive behaviours The reasons for this decision, were as the American Psychiatric Association explains: • Deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities • Delays in language are not unique nor universal in ASD and are more accurately considered as a factor that influences the clinical symptoms of ASD, rather than defining the ASD diagnosis • Requiring both criteria to be completely fulfilled improves specificity of diagnosis without impairing sensitivity Another proposed change, which is overdue, is the inclusion of ‘unusual sensory behaviours’ as a component of the diagnostic criteria for ASD. In the DSM-IV no mention is made of sensory behaviours, even though, as many parents of children on the spectrum can testify, some of these behaviours can be the most challenging of all to manage. The last important change proposed in the DSM-5 is the recognition that, whilst ASD is a neurodevelopmental disorder and therefore must be present from infancy or early childhood, it may not be recognised in some individuals (notably, those with a current diagnosis of Asperger’s) until later childhood, when life starts throwing up new social challenges. Despite his remarkable progress, Joe is not a ‘recovered’ child and remains somewhere on the autism spectrum. I think we can safely categorise his computer obsession as a fixated interest, although on the bright side it may also provide him with a career down the track. Fingers crossed…. 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#
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: 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 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 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.
Evidence-based treatments for ASDsby Benison O'Reilly on Thursday, November 12th, 2009In the Australian Autism Handbook we introduce readers to the concept of scientific evidence and how it applies to treatments for autism spectrum disorders. As a general rule we recommend parents lean towards scientifically validated or evidence-based treatments and reserve particular scepticism for anyone promising the ‘miracle cure’. Parents now have an additional evidence-based resource to refer to. The National Autism Center (NAC) is a US–based nonprofit organisation dedicated to supporting effective, evidence-based treatment approaches for ASD. www.nationalautismcenter.org/ Recently it released its National Standards Report. When introducing the report the NAC noted: The primary goal of the National Standards Project is to provide critical information about which treatments have been shown to be effective for individuals with ASD. However, as the report authors explain: It is not our goal to dictate what choices people make, but to provide enough information to allow them to make informed treatment decisions for themselves. The report separates treatments into four categories, based on the level of scientific evidence supporting them: Established, where, as the name implies, there is sufficient evidence to establish these treatments are effective. Examples include behavioural interventions, visual schedules and Social Stories™ Emerging, where one or more studies suggest a treatment produces favourable effects for individuals with ASD, but where additional high quality studies are needed to confirm these findings. Treatments listed here include: DIR®/Floortime™ and RDI®, structured teaching and PECS. Unestablished, where there is insufficient evidence to allow firm conclusions to be drawn about effectiveness. Examples include (probably controversially for some parents) the GFCF diet and auditory integration therapy. Ineffective/Harmful, where there is sufficient evidence to establish that a treatment is ineffective or harmful for individuals with an ASD. Interestingly there are currently no treatments listed in this last category. At 176 pages the full report is not light reading and parents may prefer the Findings & Conclusions of the National Standards Project, a mere 53 pages long. Log on to the website and follow the links. Please note that you are required to provide a few personal details to gain access to the documents. This is a welcome new resource that should help a few parents navigate the maze of therapies that confronts them when autism unexpectedly enters their world. SEARCH The essence of publishing is the exchange of ideas from author to reader, be it through the printed word or increasingly the computer screen. At JCP our authors are highly regarded as leaders in their fields so we have introduced this blog to enhance the connection between author and reader. A blog is real-time communication, interactive and relevant. The author contributes individually on issues that concern them – and our readers have the opportunity to comment and connect. So please read, enjoy and use the JCP blog. Books are only part of the JCP story. acceptance
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