“A ROSE BY ANY OTHER NAME” (OR ANY OTHER CRITERIA)………IS STILL AUTISM

By Jura Tender

As of May this year there will be a new definition of Autism, with the release of the new edition of the DSM – (Diagnostic and Statistical Manual of Mental Disorders, Published by the American Psychiatric Association – no wonder they stick with the initials). The ICD – (International Statistical Classification of Diseases – system used by the World Health Organization) will also be changing to keep some consistency between the two.

Let us look at the history of changing goal-posts. The first DSM, in 1952 did not mention Autism, neither did the second edition. It appeared in 1980 in DSM-III and the criteria were very much as described by Kanner and labelled by him as ‘Infantile Autism’ , while today we refer to it as ‘Classical Autism’. Any child who managed to learn to give eye contact (which was the first thing some mothers taught) was not given the diagnosis. Back then we expected to see about 5 cases in 10,000.

But it was obvious to clinicians that there were cases which mostly fitted the label, and certainly deserved intervention, but could not get the diagnosis. We were delighted to see DSM- III-R, the revised version which broadened the criteria, in 1987, but disappointingly, it did not include Asperger’s Syndome, which we were reading about in the 80’s, since Gillberg translated Asperger’s description of what he then called “Autismus”, into English. By now clinicians were talking about a spectrum of Autistic presentations.

DSM- IV, out in 1994, did include Asperger’s Syndrome, but the criteria did not match Gillberg’s criteria and brought further frustration. There was ambiguity and the distinction between Autism and Asperger’s was not clear; most presenting clients had difficulty with the social pragmatics of language and clinicians could give either diagnosis. There was also confusion with PDD-NOS and even more with Childhood Disintegrative Disorder, as many of toddlers with Autism start off with what appear to be typical developmental patterns in the first years. There was discussion and criticism in the literature and this was barley addressed in the revised DSM-IV-TR version, 2000. Since then the world of Autism has changed. On last count we now can conservatively expect to diagnose one child in 88.

So now we eagerly await the new DSM-5. What will it bring? Everyone is asking who will gain and who will miss out?

For a start Autism, Asberger’s and PDD-NOS will be run into one diagnosis of Autism Spectrum Disorders, and old distinctions will disappear. Given this, now a spectrum variance can be accommodated.

There will be several big changes:

The triad of Social impairments, Language impairments and Stereotyped behaviours will be reduced to a dyad of Social communication deficits and Restricted behaviours.

Diagnosis will depend on meeting 5 of 7 criteria, instead of 6 of 12.

The following 2 criteria will be dropped completely: delay or lack of spoken language, and lack of varied make belief play appropriate to development.

• There will be more emphasis on social communication and interaction, where all 3 criteria will need to be met, but they will incorporate the remaining old criteria under the heading of social interaction and impaired communication.
• Restricted behaviours will be better specified, noting stereotypes of movement or speech, excessive routines, restricted interests, and either excessive or reduced sensory reactions. Only 2 of the 4 need to be met, but they all seem better defined. In particular the inappropriate sensory reactions was difficult to register in the old definitions, yet was so obviously part of the syndrome.

I note that retrospective studies comparing the old diagnosis with the new would suggest that only about 60% of those currently diagnosed would meet the criteria on DSM-5. 25% of those with a current diagnosis of Asperger’s and 28% of those with PDD-NOS would miss out. There would also be more drop off at the higher IQ range.( McPartland et al in J American Academy of Child and Adolescent Psychiatry,2012). There have been several others with similar results.

Our own WA data, as collected by the WA Autism Register was examined by Emma Gleeson and presented at the WAADF December forum. She examined 3810 cases diagnosed on DSM-IV, comprising of 81% Autism, 14% PDD-NOS and 5% Asperger’s. Of these 78% of the ones with Autism retained their diagnosis, but only 25% of Asperger’s and 8% of PDD-NOS would still meet criteria on DSM-5.

However please do not panic. Catherine Lord, who was on the committees designing the new criteria said their goal was to make better criteria to describe the same group of people who currently carry the diagnosis of ASD. Remember that what we were looking for, and the questions to parents were all aimed at the old criteria so all the information will not be presented and thus not available for retrospective studies.

On the positive side, it will open the road for children to be diagnosed much earlier, thus giving them a better chance at accessing Early Intervention. Most parents are well aware that something is amiss before the child’s second birthday, but used to be told to wait for the more obvious delay in language acquisition which usually took them to the 3rd birthday or later. A subgroup of children with ASD do suddenly start talking at around 3 years of age, but their language is not social. They often missed out on a diagnosis and many were later re-referred to get a diagnosis of Asperger’s Syndrome or High functioning Autism when it became obvious they could not cope socially in the school. They too should now be picked up for Early Intervention.

In summary once the professional community and those responsible for diagnoses get used to it and focus more on social development and pre-lingual communication, the new criteria could open the way for more children to get services much earlier. As for Autism, I do not think it has changed since the wild boy of Ayeron was found in the forest and could not be taught language or social skills but was good on visuo spatial problem solving. Today we know he was not brought up by wolves, though he made similar noises. Since then, we have become very much more aware of Autism and have come a long way in understanding it, but there is still a long way to go. I see DSM-5 as a positive step in this direction.