Let's Stop Calling It Autism

I met the late Dr Bernard Rimland in 1993 at the 'Celebration of Breakthroughs' conference in Stamford CT, USA. This excellent Autism conference had been arranged by Annabel and Peter Stehli of the Georgiana Organisation. I was deeply impressed by all I learned there, and actually deeply shocked at just how much there was that was being offered as interventions for Autism.

I say shocked, because in the autism school where I worked we were doing none of those interventions. In fact the school principal who was the only one who got to attend these overseas conferences used to come back and tell us that we were still doing 'a great job' - as though we were in line with the best that was available! So my experience upon being confronted with what could in fact be done for these kids was anything but pleasant.

It was a complete 180 degree turnaround experience:- never again could I be content with that stuff that was being dealt out to the children back home. There was more to be had, and our children deserved to have access to it! Trouble was, there wasn't anyone offering it back home. Not only that, but resistance against new information was fierce.

This was the start of a steep learning curve. I had to learn for myself about all those various things that could make life better for the child with autism including diets, nutrients, sensory therapies including AIT and vision therapy, movement therapies, ABA, PECS and TEACCH, Facilitated Communication, even dolphin and riding therapy. All of this information had to be taken on board without having a clear picture of how they all inter-connected. This was the 1990's and the DAN! initiative of Rimland was only just getting under way.

In the introduction of the 1993 or 4 DAN! practitioners handbook, Dr Rimland had written his outline of how these therapies fell into place, which was very helpful. I recall at the conference he had advised parents that while we don't know why various interventions worked, they should 'push all the buttons' that they can reach.

It was only when I read the M.O.R.E. book by Oetter, Richter and Frick that I began to see the order and hierarchy of the contributing issues in Autism, and consequently the order and hierarchy of the various interventions. A sense began to develop of when to do what, and for whom. As the knowledge about autism worldwide has progressed, this outline has become clearer. this new 'take' on autism needed a name, because it didn't fit into any existing protocol. It was around 1996 that the term 'Neuro-Cognitive Mobilisation' was coined.

'Neuro' indicated that the target for the intervention was change in brain organisation. 'Neuro-Cognitive' to emphasise that the way to better learning and thinking was to improve brain organisation at a neuro-biological level. 'Mobilisation' referred to the purpose of the interventions which were to un-block the obstacles to development, and to activate the supporting systems and processes for learning, such as attention, imitation, responsiveness, and confidence.

So Neuro-Cognitive Mobilisation became the intervention package that was offered for children with autism, but also for those with ADD, Dyslexia, Downs Syndrome, and all related developmental conditions. It seemed the NCM construct held water universally.

New Beginnings

The approach was put to the test in a one-year project in a preschool. Four children with a variety of diagnoses attended daily for 4 hours. One-on-one attention by a parent, grannie or assistant ensured that each child was constantly engaged in just-right activities. Even playtime was structured for maximum individual impact. Our goal was improved brain organisation and integration. We had only 4 hours per day to cause this to happen, so we WORKED! The guiding principle was 'structured, respectful, insistent intervention' in the 'zone of proximal development' (Vygotzky) using the Feuerstein concept of 'facilitation'.

We saw really gratifying changes in each child who attended in a wide range of areas besides learning their colours, number concept, etc. that are the usual targets of preschool programmes. There was the boy who used to drool copiously who developed saliva control after just 4 months. The little girl whose posture straightened to her physiotherapists amazement. The little boy with desperate vestibular problems who began to swing and slide 'for fun'. Socialisation, speech and communication improved, and what I enjoyed most of all was that their general well-being improved.

The principles of NCM were thus proven in practice. As we worked, an awareness grew that Autism, ADD, Dyslexia and these related conditions all had a common base in neuro-bio-cognitive dysfunction, and perhaps we ought to start afresh. Perhaps we ought to change the way these conditions are listed. Perhaps we should change the way we think about these conditions.

A New Diagnostic Categorisation

These conditions can all be seen as neuro-bio-integrational (NBI) disorders. So we can say that there is a group of NBI children who show Dylexia as their primary presenting problem. Another group of NBI childen show Autism as theirs, or Aspergers. Another child might have Downs Syndrome but also present with Autism. Another may show ADD and Epilepsy jointly as their presenting problem.

This move to re-name Autism seems to be gaining momentum: there is a group who plead that we 'stop calling it autism'.

We have been getting it so wrong with Autism for so many years, that the very name obscures more than it reveals! What is more, when a child has a behaviour e.g. flapping, or toe-walking, professionals are heard to say 'well thats because he's autistic!'

...er... well, no: he does that because he has a proprioceptive sensory need, and possibly a visual sensory difference if he's flapping in his line of vision...

I think the label is blocking our view. I'm joining with those who say 'Let's Stop Calling It Autism'.

I say, Let's call it Neuro-Bio-Integration Disorder". This could spur us on to investigate beyond the label to tease out the features of this child's specific profile, so that we can put in place interventions to address each feature, so we can really give this child a chance at a great outcome and an enjoyable competent life.

Thank you, Dr Rimland. Thank you for being an out-of-the box scientific thinker - thus a true scientist. Thank you for the hope you have given so many families, and great lives to so many more!

As for me, I still hope for a time when my colleagues will step up to the plate to be the scientists they profess to be and put the client first.