 On dancing frogs and physical clues to autismby Benison O'Reilly on Saturday, July 17th, 2010Some of you are probably old enough to remember the old Loony Tunes cartoons, featuring Bugs Bunny, Daffy Duck and the crowd. There was one particular cartoon that used to drive me nuts. It was about a down-and-out homeless guy who discovers a box, and inside the box is a singing, dancing, high-kicking frog. Dollar signs appear before the tramp’s eyes (his luck has changed!) and he starts heading off to various casting agencies, frog and box in hand. But the frog only performs its routine for him and when anyone else is around it simply sits in the box and says ‘ribbit, ribbit’ — as frogs tend to do. Eventually the guy gives up in despair and tosses the box and frog away…only for it to be discovered by another down-and-outer, to repeat the process over, and presumably over again. It’s almost unwatchable. The dancing frog has become a metaphor in our house for the child who refuses to perform for the crowd. And of all our children, Joe is the most notorious dancing frog. It happened again this week. Every six months we toddle off to the paediatrician’s for a check up — the same paediatrician who diagnosed Joe way back in February 2004. Back then Joe was so disabled—completely hyperactive and very autistic, with no play skills and virtually no language. His developmental assessment suggested a very low IQ. The situation looked bleak. Now, despite the autism, things are much better. Academically Joe’s maths and spelling are age appropriate, and his reading and handwriting are just a bit below. His language improves on a daily basis, so much so that I sometimes wish he’d talk less. He can ride a bike, swim and play soccer. He loves play dates with his friends. I took his impressive school report along to show the doctor, which is just as well because the chatty, interactive boy of five minutes earlier proceeded to ignore the doctor, avoid eye contact, and disappear into an autistic trance. ‘He’s not usually like this,’ I said, ‘Normally he never shuts up’. Yeah, yeah, I’m sure the doctor was thinking. Why do I have this desperate desire for people to see Joe at his best? To see that he is not so different from the rest of us? Probably it’s just for my own pathetic gratification because— at this stage at least—he couldn’t care less. I should let go. After all he is not a trained seal, nor a dancing frog. Speaking of things medical, I stumbled across this interesting paper the other day. It’s entitled ‘Morphological features in children with autism spectrum disorders: a matched case-control study’. Basically a bunch of Dutch researchers got 224 children on the autism spectrum (mean age 9.7 years; 4:1 males/female ratio) and some matched controls (typically-developing kids of the same age) and looked for physical signs that distinguished the kids on the spectrum from their typical peers. They classified these physical signs as major abnormalities and minor variants. The latter are ’slight morphological deviations’ that have no serious medical or cosmetic significance but may be useful indicators of disturbed development. Of these minor variants, minor anomalies have a prevalence in the normal population of ≤4% and common variants a prevalence of >4%. The children with ASDs were statistically more likely to present with major abnormalities, minor anomalies and common variants, including: dull facial expression and open mouth appearance (these were the only two major abnormalities detected),brachycephaly, facial asymmetry, webbed toes, hyperflexible joints, prominent ears, attached earlobes, clinodactyly, flat feet, high palates and abnormal hair whorls (’cowlicks’). What is most interesting is that none of the kids on the spectrum in this study had an intellectual disability (defined as IQ<70), yet they still displayed physical signs of ‘difference’ – subtle, but present nonetheless. It adds further weight to the genetic basis of ASDs. And the sixty million dollar question is: Does Joe have any of these signs? Yes. He has both hyperflexible joints (although his father, who is clearly not on the spectrum, also has these) and he has some degree of brachycephaly. The latter was actually commented on by a doctor when Joe was a baby, but I just assumed it was a consequence of encouraging him to sleep on his back, a precaution introduced to reduce the likelihood of SIDs. Still he remains a very good looking boy, with a slightly odd shaped head. I just hope he doesn’t go prematurely bald. The study is published in the Journal of Autism and Developmental Disorders as a free access article, so you can read it yourself if you so desire. http://www.springerlink.com/content/ck441558236×33w7/fulltext.pdf By the way, in case you’ve been wondering about Seana’s recent silence on the blog front, she has been ferrying her brood of four around Scotland for a few weeks, visiting the relatives. We look forward to her return next week. Oxytocin for autism spectrum disordersby Benison O'Reilly on Wednesday, June 30th, 2010As reported in the latest issue of Aspects magazine from Autism Spectrum Australia, there is some interesting autism research happening in my home town, Sydney. The Centre for Autism Research, Evaluation, and Service (CARES), at the Brain & Mind Research Institute, recently conducted a small study to determine whether oxytocin nasal spray could enhance emotion understanding in high-functioning teenage males with an ASD. As you probably know, oxytocin is often called the ‘hormone of love’. Although best known for its role in facilitating labour, delivery, and breast-feeding, it is also important in promoting trust, love, and social recognition. In this double-blind*, randomised trial, oxytocin nasal spray or a placebo was administered as a single dose to each of 16 participants in a cross-over design, and their performance was assessed using a standard test of emotion recognition, the Reading the Mind in the Eyes Task. The researchers found oxytocin nasal spray improved emotion recognition compared with placebo, and the results were published in the April 1 2010 issue of Biological Psychiatry.1 Inspired by this success, the researchers now wish to determine whether oxytocin nasal spray can improve long-term social function in ASD, and hence be used as a treatment for autism. Recruitment is underway for a new trial involving males aged 12 to 18 with ASDs. Participants will use oxytocin spray or a placebo twice a day for eight weeks, with social function assessed before, immediately after, and three months following completion of the trial. CARES is looking for males aged 12–18 years with an ASD to participate in the trial. If you know anyone who may be interested they should contact the Brain & Mind Research Institute on (02) 9351 0881 or email: autismcares@med.usyd.edu.au. Unfortunately my little guy, Joe, is too young for the current trial, but once this study is completed—and if improvements are found—trials in different age groups and females will be conducted. Let’s keep our fingers crossed for a good outcome. *A trial in which neither the participants nor the researchers know who is receiving the active drug and who is receiving placebo.
The gluten-free casein-free diet in autism revisitedby Benison O'Reilly on Wednesday, June 23rd, 2010In the Australian Autism Handbook, published a couple of years ago now, we discuss the gluten-free casein-free (GFCF) diet and the evidence for its use in ASDs. We include mention of an ongoing— at that time—double-blind randomised controlled trial (RCT): Currently the US National Institute of Mental Health (NIMH) is supporting a double-blind RCT to study the effectiveness and safety of GFCF diet. Thirty children following a GFCF diet will either be challenged with snacks which contain gluten and casein or receive identical placebo snacks. All children in the study will be receiving intensive behavioural intervention so that the effects of their early intervention program cannot influence the results. Researchers will try to identify the characteristics of children who are responders and the nature of that response. You can read about this trial at: http://clinicaltrials-nccs.nlm.nih.gov Well, the preliminary results of that trial are now in and were presented at the recent International Meeting for Autism Research (IMFAR), held last month in Philadelphia. Unfortunately we only have an abstract to go on, and should probably reserve complete judgement until the full published paper is available for review, but this is a summary of the research: Children aged 30-54 months, receiving at least 10 hours/week of early intensive behavioural intervention (EIBI) were recruited. They were screened for milk/wheat allergies, coeliac disease, and anaemia prior to starting treatment. After a strict GFCF diet for at least 4 weeks, they received weekly randomised, double-blind challenges (snacks) containing either 20 g wheat flour, 20 g evaporated milk, both, or neither on three separate occasions over 12 weeks . The snacks appeared identical and were similar in taste and texture. Behavioural and other data was collected at baseline and at regular intervals throughout the 30-week trial; as well as prior to, and two and 24 hours after, the snack challenges. In the end twenty one children were recruited. Of these, seven were eventually excluded from the analysis for medical or other reasons, leaving only 14 participants (12 male), with an average age of just over three and half years. The researchers found no statistical change in frequency or quality of stools, sleep, activity measured by actigraphy*, or parent/teacher/observer scores of attention or activity when children’s baseline (before diet) measures were compared with treatment (during diet) measures. Nor did they detect any changes pre/post the gluten and/or casein challenges. In fact, one group measure of behaviour** actually improved 2 hours-post gluten &/or casein challenge, although in light of the small patient numbers this might be a chance finding. The authors concluded: This is the first study to examine the behavioral effects of a nutritionally monitored GFCF diet on attention, sleep, stool pattern, and core symptoms of ASD. While no favorable effects of the GFCF diet on attention, sleep and stool patterns were identified in group analyses, such effects may occur for individuals or for subgroups of children (e.g. with significant GI disease), providing the basis for positive anecdotal reports. Future studies need to address the potential effects of nutrition on behavior in children with ASD and be powered to evaluate subtle changes in core symptoms. The abstract is available below: http://imfar.confex.com/imfar/2010/webprogram/Paper6183.html This is the second double-blind study to find no effect for the GFCF diet in young children with ASD. It may be, as the authors say, that there is a subgroup of children—possibly those with significant gastrointestinal symptoms—who do benefit dramatically from the diet, and more trials with greater patient numbers are clearly needed. Nonetheless this adds to the body of evidence that not all kids on the autism spectrum will respond to the GFCF diet. Those who are interested might also want to check out the latest Cochrane Review of the GFCF diet, updated in 2009 but prior to presentation of this latest study: www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003498/frame.html *According to Wikepedia, actigraphy is a relatively non-invasive method of monitoring human rest/activity cycles, commonly using a wrist-watch-like package. The unit continually records movements, which are later analysed by computer. ** The Ritvo Freeman Real Life Rating Scales (RFRLRS). This scale was developed to assess effects of treatment on 47 recognised behaviours of patients with autism. It is applicable in natural settings & can be used by nonprofessional raters. Is autism contagious?by Benison O'Reilly on Friday, May 14th, 2010In the introduction to the Australian Autism Handbook I write that having Joe has made me ‘a kinder and wiser person’, one who no longer ’sweats on the small stuff’. Two years later I can confirm that still rings true. I remain more tolerant of life’s vicissitudes and my fellow human beings and their failings. Not much upsets me. However, there is one aspect of life where I remain less tolerant and that concerns my children. If anyone seriously slights one of my boys I feel it keenly. This particularly applies if anyone slights Joe. Anyway, without giving too much away, there was once a woman of my acquaintance — a woman with neurotypical children— who made it clear that— despite my gestures of friendship— she wanted as little to do with Joe and me as possible. Was it me? Or was it Joe? I’m not sure. I can rationalise the former, but the latter…not so easily. I once said to my husband, ‘Perhaps she thinks autism is contagious’. Thus, I was surprised to find that a recent study suggests that it is. Okay, I’m bending the truth a bit. But hopefully I’ve caught your attention. What the study, by researchers from Columbia University, did find is that children living near a child who has been previously diagnosed with autism have a much higher chance of being diagnosed themselves in the following year. However, the researchers do not believe this is because autism is contagious. Nor do they think it’s due to an environmental agent. They believe it is because parents are learning about autism from other parents who have a child on the spectrum; they are being educated about symptoms, and the process of obtaining a diagnosis and treatment, from people who have already been through the process with their own child. In the study, entitled Social Influence and the Autism Epidemic, researchers looked at data on over 304,000 children born in California between 1997 and 2003. They found that children who live within 250 metres of a child with autism have a 42% higher chance of being diagnosed with an ASD in the following year compared with children who do not live near a child with autism. Children who live between 250 metres and 500 metres from a child with autism were 22% more likely to be diagnosed. As we would predict, the study showed the proximity effect to be strongest amongst children with high functioning autism, the sort of kids whose symptoms and behaviours might have been explained away as ‘oddness’ in earlier times. The researchers eliminated competing explanations, such as environmental toxins or viral transmission through a series of statistical tests. They also considered other social factors that could be driving the autism ‘epidemic’, such as maternal age and education standards (some studies have found that older parents are more likely to have a child with an ASD, whilst others suggest that better educated parents are more likely to obtain a diagnosis for their child). Whilst the Columbia University team found that each of these social factors appears to play a role in the rising prevalence of autism, the so-called ‘social influence’ phenomenon exerted the most powerful effect. The researchers conclude: One does not “catch” autism from someone else, yet a social diffusion process contributes significantly to the increased prevalence of autism. Looks like we might have found another piece in intriguing puzzle of why autism diagnoses are on the increase. The paper, published in the American Journal of Sociology, is available free to download on the link below. Ka‐Yuet Liu, Marissa King, and Peter S. Bearman. Social influence and the autism epidemic. American Journal of Sociology 2010 115:5, 1387-1434 http://www.journals.uchicago.edu/doi/full/10.1086/651448 Or read more commentary on the study at Science Daily: www.sciencedaily.com/releases/2010/04/100408161017.htm
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: 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. 1 in 100, Part 2by Benison O'Reilly on Saturday, October 24th, 2009A 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 in 100, Part 1by Benison O'Reilly on Wednesday, October 7th, 2009Studies 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.
Autism research on the home frontby Benison O'Reilly on Wednesday, September 9th, 2009I 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…
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
allergies
antioxidants
asthma
australia
AUTHORS
autism
Baby brain development
Books
Brain foods
Breast feeding nutrition
Buy books
children's health
children's nutrition
Choline
diagnosis
diet
eczema
Education
employment
families
funding
gastrointestinal
genetics
herbs
Libraries
mothers
My Goodness
Online Games
parenting
Pregnancy nutrition
prevalence
probiotics
research
Resources
School
sensory issues
Social Skills
Speech Therapists
Super foods
Teachers
treatments
ARCHIVES |
