Book Review – The Complete Guide to Autism Treatments

by Benison O'Reilly on Tuesday, March 30th, 2010

I 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.

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Gastrointestinal disorders and autism

by Benison O'Reilly on Wednesday, February 3rd, 2010

Parental 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

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Evidence-based treatments for ASDs

by Benison O'Reilly on Thursday, November 12th, 2009

In 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.

68 COMMENTS

Autism research on the home front

by Benison O'Reilly on Wednesday, September 9th, 2009

I remember one autism parent commenting once to my husband, a doctor, and me that, as health professionals, we must be really into biomedical interventions for ASD. Actually the reverse is true; apart from an abortive attempt to give our son fish oil we’ve done nothing: no supplements, no GFCF diet, no nothing, really.  My co-author Seana, in her own words, has done everything—we are in that sense the veritable odd couple.

It’s not like I haven’t read up on the topic either. The reason I remain sceptical is that when it comes to neurological disorders medical treatments, as a rule, tend to be pretty disappointing:   drugs for Parkinson’s disease lose their effectiveness and side effects develop, treatments for Alzheimer’s disease  and MS are of limited benefit.  We can use medicines to prevent strokes and (if the stroke is discovered in time) to limit their impact, but once the damage is done the mainstay of treatment is always rehabilitation, teaching the patient to walk, talk,  swallow etc.—in essence recreating important connections in the brain.  As all the research is pointing towards autism being a disorder of neural connectivity, I feel that therapy—speech, occupational, behavioural, developmental— to create those crucial neural connections is the way to go.

Many parents who go down the biomedical path talk to me of secretly hoping for the ‘magic bullet’, the one mystical pill, potion or supplement that is going to fix their child’s autism. In a way it’s tremendously liberating not to have that hope.  I’m happy to witness the incremental, but consistent, improvements that therapy seems to bring.

That doesn’t mean, however, that I’m not keen for clinical research into biomedical treatments to be done.  I believe it’s possible that some of these treatments may offer real benefits to some individuals on the spectrum, but I want to see evidence from proper randomised, controlled trials.

I am therefore excited about all the new research being conducted.  Get on the Internet and go to ClinicalTrials.gov to witness the sheer number and diversity of clinical trials underway into ASDs. On an even more exciting note, we now have some home-grown research happening, courtesy of the UniSA’s Autism Research Group (ARG).  Headed by Dr Manya Angley, The ARG is a multidisciplinary team of researchers aiming to better understand autism and help develop more effective diagnostic techniques and treatments.  Read more about their research at:

www.unisa.edu.au/sansominstitute/researchactivities/groups/autismresearch.asp

The search continues apace…

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