Interventions

Ii

I is for… Interventions.

Where do I start?

Not with a 13-line acrostic poem based around only 3 vowels and 5 different consonants. However, numbers and letters as communicative tools – or more specifically: statistics and acronyms and acronyms and acronyms and acronyms – are staples within autism ‘professions’. Make no mistake: autism is a very lucrative business.

The exact causes of autism, in all its myriad presentations are multifarious and little understood. No cure exists; though there are those who would claim otherwise and charge exorbitantly (emotionally, physically, psychologically and financially) for their alchemy. The very notion of a cure is itself contentious within the autism community. There are those who would welcome one and those for whom the mere contemplation of one is deeply and profoundly offensive.

Enter interventions: therapies and services with varying techniques and approaches which aim to improve and enrich the quality of life in some quantifiable way for individuals on the autism spectrum and also for their families, and to provide effective means of communication between all individuals concerned.

Speaking of “quantifiable”, everyone’s an expert on autism.

No one is an expert on autism. Especially not that guy trying to sell you immunoglobulin infusions. Don’t just walk away from him. Run. Run fast and report him to the GMC (General Medical Council) when you’ve distanced yourself and your children far enough away to be safe from harm. Camel’s milk? Erm… words fail me… but my eyebrows say it all!

Our own little nuclear family have been living with a diagnosis of an ASD (Autism Spectrum Disorder) for almost 12 months, although the diagnostic process began much earlier than that and the neurological differences, which took a little time to reveal themselves, were already present before our son’s birth, 5 ½ years ago. We’ve been living with a second diagnosis of an ASD for a little under 3 weeks. That diagnostic process began earlier this year but those neurological differences have been present for the last 40 years. I’m still processing that one. So’s my husband. The slightly-off-point I am meandering towards is that we, like many other families, live with more than one version of ASD. We live it from the inside out, yet it still baffles us on an almost daily basis.

And our approach to interventions is one of caution, consciously mindful of the maxim, Primum non nocere –  First, do no harm.

Here’s a number:

1123

That’s the 4-figure number of available autism interventions which are listed on Research Autism’s website. And that list is not exhaustive.

Here’s a 5-figure number:

30,000

That’s the number of publications (research papers, books, articles and other materials) listed in the National Autistic Society’s research database, giving the lowdown on the research results of autism interventions. The abstracts of the research papers are freely available to everyone via the internet but to view a paper in full, one must make a written request to the individual publishers. Some papers are accessible on the web but only to other published academics, their research students and uninterested undergraduates who just happen to have been given the passwords. A parent such as myself, a stay-at-home Mum living in a small ex-mining village up North, whose current skill set includes colouring in and teaching retrieval and recall to the family dog, has to do an awful lot of digging to unearth any peer-reviewed conclusions. I can reserve one of two study spaces to review the book-based literature, in-situ at the NAS library, if I take enough time out of family life to make the 300 mile round trip.

Research Autism is collating and critically evaluating autism intervention research data from peer-reviewed scientific journals on behalf of exasperated parents like myself whose time is necessarily spent cutting labels out of clothes, stocking the fridge with the right sort of cream cheese and attending IEP meetings. Each intervention is graded according to the quantity and quality of the research material available for it. The studies deemed to be of the highest quality are those that are “methodologically rigorous with adequate statistical power”. The next supporting level of evidence is derived from studies which are “well conducted controlled trials including a) non-randomised control group study, where there is adequate statistical power and where the study is conducted by researches independent of the intervention and b) randomised controlled trials which do not meet the criteria for [highest quality] (eg, where there is inadequate statistical power)”. Some of the published case studies are classified as “interesting” because they occur in “sufficient numbers to warrant further investigation” and the remaining studies are rejected out of hand completely for not being worth the paper they’re printed on.

The number of interventions for which strong or very strong positive scientific evidence (according to the criteria outlined above) exists is…

drum roll please…

7

No, I didn’t miss out any digits. The number is just 7. Just 7. Seven!!!!!!!

Of those seven, the number of interventions supported by more than one study meeting the criteria for “methodologically rigorous with adequate statistical power” (in addition to a convincing number of other ‘next level’ studies) is:

2

Just 2.

And of the two, one intervention, Risperidone, comes with the caveat that objective scientific evidence also indicates the potential for significant adverse effects, you know, it being an atypical antipsychotic drug and all. Risperidone has been shown to reduce hyperactivity, irritability and repetitive behaviour in some autistic individuals but it is neither suitable nor appropriate (and is certainly not recommended as such) for many individuals under the umbrella of ASD.

The second of these, CBT/M (Cognitive Behavioural Therapy/Modification), though highly evidenced, is very narrow in its scope. This psychological approach singly targets the anxiety that is associated with spectrum conditions. It pre-supposes an individual’s cognitive capacity to interrupt their own negative cycle of thought patterns and behavioural responses by attempting to break down seemingly overwhelming problems into much smaller parts. It is a ‘here and now’ practical therapy and has nothing to do with traditional methods of therapeutic psychoanalysis. It is contra-indicated for individuals with certain types of learning difficulties and so consequently is unsuitable for many people with autism. The collated results of the CBT/M studies also assume the input of a suitably qualified, accredited and experienced therapist. You shouldn’t be surprised to discover that there are some really bad ‘therapists’ out there.

The remaining five interventions which are evidentially supported include, firstly, another drug – Melatonin; another behavioural approach – EIBI (Early Intensive Behavioural Intervention); an alternative and/or augmentative communication strategy – PECS (Picture Exchange Communication System); and two different educational approaches – Milieu Training and TEACCH (Treatment and Education of Autistic and related Communication handicapped Children).

Melatonin has been shown to aid in the reduction of some of the sleep disturbances often associated with autism (in some individuals).

The methods of EIBI, also known as ABA (Applied Behavioural Analysis) are controversial within the autism community, even in the face of the impressive results they have yielded for some children. The programmes are personalised and highly intensive, often being delivered by a team of adults for anything up to 40 hours per week, making them very, very expensive. The impact on the child and/or the family unit as a whole can be a negative one for all sorts of reasons and those children who do respond positively are unlikely to do so in all areas of functioning.

PECS have been widely used in the UK as a staple of Speech and Language Therapy for autistic children for a number of years now and their application has more recently been extended for use with adolescents and adults experiencing a range of difficulties including, but not limited to, autism. In essence, pictures replace words to build a meaningful and functional system of communication whereby the child is taught to ask for whatever it is that they would like by presenting the pictoral representation of that thing to the adult who will then get it for them. The principle can then be extended out to incorporate ‘feelings boards’ and such like.

Milieu Training utilises something the child is interested in and enjoys to further develop certain areas of learning. It forms the basis of reward programmes and has been condensed into the popular version of ‘now and next’.

TEACCH programmes are person- and family-centred teaching plans which are “based on a theoretical conceptualization of autism”. They involve careful structuring of the physical environment and employ visual supports and schedules to predictably sequence daily activities and aid the individual in understanding the whens, wheres, whys and with whoms associated with specific tasks. There are many and varied components to TEACCH programmes.

In reality, interventions are often delivered in a hotch-potch, trial and error fashion as part of much broader, sometimes irregular systems of multi-elemental ways of, well, living; determined, unsurprisingly, by time, money, geography and the access and availability of clinical and professional resources. Each child is different, every family is different; therapists, clinicians and educators are a wildly heterogeneous bunch and each of them, without exception, meets you and yours with their own agenda.

So, what about the other 1116 listed interventions?

Well, to date (May 2014), fewer than a hundred interventions (so far) have either been evaluated for efficacy and safety, are in the process of being evaluated or are in the process of having relevant peer-reviewed existing data collated in preparation for being evaluated. It has so far emerged that a tenth of these interventions are not even so much as hinted at, positively or negatively, anywhere in the scientific literature – there is simply no evidence one way or another for them. For approximately 20% of the interventions, there is insufficient evidence to be collated for evaluation, or worse – conflicting evidence abounds. About a third of the collated data sets are currently undergoing evaluation and no conclusions, either way, have yet been published. A large portion of the evidence for interventions remains inconclusive and for a significant number, strong or very strong negative evidence exists with regards to their effectiveness with some being further classified as either “hazardous” or harmful. I won’t give any paragraph space to naming or describing those interventions here.

Some commonly utilised (and some not so commonly utilised) interventions, for example: Intensive Interaction (not to be confused with EIBI/ABA), Floor Time, Portage, Social Stories, Sensory Diets (which have nothing – or at least very little – to do with food), Animal Assisted Therapies, Art and Music Therapies, Makaton and a smorgasbord of Dietary Supplements and Regimes (to name just a few) are conspicuous by their absence from the evaluation list. The only reasonable conclusion to be drawn here is that Research Autism have not yet collated all the evidence available for them but that they are bullet-pointed somewhere on someone’s ‘to do’ list. And if anyone unearths any scientifically validated strong positive evidence for homeopathy, I’ll eat the dog’s hat!

Interestingly, the Statement of Special Educational Needs (along with a handful of other interventions I can think of straight off the top of my head) appears nowhere on the original, long list. The Statement of SENs is itself the fractured backbone of Educational Intervention in the UK, or will remain so until September this year, at least. But that’s a whole other topic for a whole other day… week… month…

Right now I have a rejection phone call for an ill-considered desensitisation programme to make. “Thanks but NO thanks!”

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