***Disappointing! Simplistic! Misleading?

My last article on DSM-5 looked at the loss of one important diagnosis - that of Disintegrative Disorder. And yet reviewing the situation there is another aspect of major concern. And that, as you may have guessed, conce s the sensory differences.

Why so? Let me explain.

John Langdon Down's account in the 1800s shows that historically, sensory differences have always affected children - and adults - whose other symptoms corresponded with varying types of autism. In the 20th century those sensory differences were mentioned time and time again - one of the first accounts coming as early as 1949 when two researchers, Paul Bergman and SibylleEcalona, made an apparently extraordinary suggestion.

Struck by the fact that some young children possessed unusual sensitivities in several, if not all, their senses (visual, auditory, tactile, etc.), they published a paper titled Unusual Sensitivities in Very Young Children in which they wrote:

Colors, bright lights, noises, unusual sounds, qualities of material, experiences of equilibrium, of taste, of smell, of temperature, seemed to have an extraordinarily intensive impact upon these children at a very early age. They were “sensitive” in both meanings of the word: easily hurt, and easily stimulated to enjoyment. Variations in sensory impression that made no difference to the average child made a great deal of difference to these children. . . .

Unfortunately at that time the scientific community was not receptive to those important observations and the sensory differences and so their implications disappeared from the radar. To the best of my knowledge they next re-emerged in the late 1960s when the psychiatrist Dr Mildred Creak and her colleagues published a paper in which they detailed the criteria for autism, which, in keeping with those times (though confusing to modern eyes), was titled ‘The Schizophrenic Syndrome in Childhood’.

That paper expanded Kanner's original points to a more comprehensive nine which included:

. . . apparent unawareness of the child's own personal identity to a degree inappropriate to his age; acute, excessive and illogical anxiety; abnormal perceptual experiences; a distortion in mobility patterns and a background of serious retardation in which islets of normal, near normal or exceptional intellectual function or skill may appear'.

Then there was Dr Carl Delacato. Like many today he believed that every behavior – no matter how strange – must have a cause. As a vocal opponent of the idea of parental blame, he began to look for the causes of autism. His conclusion? That the sensory differences played a major part in the development of ASD. He detailed his findings in his book The Ultimate Stranger published in 1974 but, whilst many parents found his ideas extremely helpful, many professionals simply ignored it - or worse still - misinterpreted his ideas.

Thus when I began writing my first book The Other Side of Autism (1990) those sensory differences were generally ignored by most professionals. And yet, as I quickly concluded, there was no way that I could complete my investigation into the underlying causes of the anxiety which - almost universally - affects people with ASD without including them.

In 1991 psychologist Gail Gillingham Wylie wrote a paper Autism: Disability or Superability in which she suggested that many of the problems of autism were due to a ‘superability’ in which the senses are so finely tuned that they make the person acutely aware of things the ‘normal’ person would not notice.

Her ideas are similar to those of the 'intense world' hypothesis which was proposed by neuroscientists Henry and Kamila Markram, whose son is borderline autistic and has intense fears and anxieties and struggles with oversensitivity.

They and their colleague Tania Rinaldi came to believe that sensory overload is at the heart of ASD. They hypothesized that all the baffling and apparently incongruous features, from social and language impairment to obsessive behavior and the dazzling savant abilities, could be explained by a single neurological defect: a hyperactive brain that makes ordinary, everyday sensory experiences utterly overwhelming as the person with ASD perceives, feels and remembers too much.

This, they believe, accounts for the fact that the infant withdraws to escape the confusion; with serious consequences for his social and linguistic development. It also gives rise to repetitive behaviors such as rocking and head-banging, which can be seen as an attempt to bring order and predictability to a blaring world.

Certainly over the years those sensory differences have been confirmed by many others including the most important people of all - those who actually live with ASD on a daily basis.

Since the 1990s it is clear that interest in the sensory differences - and their causes - has grown exponentially and they are now actually included in the DSM-5.

So all is well? Past omissions corrected?

Sadly not. That is because, in their wisdom, the Workgroup decided that they should be included in the 'B category'of restricted, repetitive patterns of behavior, interests, or activities. Thus we find them stuck at the very bottom of the list of examples as shown below.

1. Stereotyped or repetitive motor movements, use of objects, or speech


2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior.


3. Highly restricted, fixated interests that are abnormal in intensity or focus.


4. Hyper - or hypo reactivity to sensory input or unusual interests in sensory aspects of the environment

And that is totally misleading for they have nothing at all to do with ''restricted, repetitive patterns of behavior, interests, or activities'.

Let me be clear. They are much more important than that for, as is clear to many people with ASD and their families, some professionals and several other professionals working in other areas like that of neuro-developmental delay etc., the severe sensory differences underpin many of the problems associated with ASD including the difficulties with speech and social relationships.

I am surely not the only one to find the Workgroups' decision incomprehensible: and one which, seemingly, makes a nonsense of all the time, effort and research that apparently went into the development of this 'updated' version of the DSM.

We can only hope that those involved in developing the new criteria for the World Health Organization learn from and correct the absences and discrepancies that are now so glaringly apparent in the DSM -5.