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First Published Saturday, 5th July, 2008.

spectrum rose

 

What’s In A Label?


The NAS Autism Helpline is frequently contacted by parents who are puzzled by the diagnostic label their child has been given. Confusion is also expressed on many online forums and in support groups, both on and offline the world over, by both those on the spectrum and their families. Most parents are now familiar with the terms ‘autism’ and ‘autistic spectrum disorder’, but problems arise with a range of other diagnoses where the relationship to the autistic spectrum is not clear. In the following article, Lorna Wing helps provide clarity.

The use and misuse of diagnostic labels


Clarification is important because, whatever other condition may also be present, when a child or adult has an autistic spectrum disorder, this has a major effect in determining the needs of the person concerned. Providing the right kind of help and services is essential for the person’s future progress and quality of life. The right diagnosis and the right help also makes life much easier for the person’s family.

1. Terms used for autistic disorders


Autistic spectrum disorders

Commonly used to cover the whole range of conditions that have in common the triad of impairment of social interaction, social communication and social imagination. This triad is associated with a repetitive pattern of behaviour. The social interaction impairment is the most important part of the triad so people who have this on its own can be included in the spectrum. This is particularly relevant for people coming for a diagnosis later in childhood or adult life. They may have learned to compensate for their disabilities in communication and imagination, but the social interaction impairment is still evident even though it may be shown in subtle ways.


Pervasive developmental disorders

Used in the International Classification of Diseases, 10th edition (ICD-10) and the American Diagnostic and Statistical Manual, 4th edition (DSM-IV) to cover more or less the same range as autistic spectrum disorders.


Childhood autism (ICD-10)

Used when the person’s behaviour fits the full picture of typical autism.


Autistic disorder (DSM-IV)

This is the same as childhood autism.


Atypical autism (ICD-10)

Used when the person’s behaviour pattern fits most but not all the criteria for typical autism.


Pervasive developmental disorder not otherwise specified (PDD-NOS)

This is more or less the same as atypical autism.


Asperger’s syndrome (ICD-10)/Asperger disorder (DSM-IV)

Briefly, this is used for more able people who have good grammatical language but use it mainly to talk about their special interests.

2.  Labels sometimes used for particular patterns of disabilities and/or behaviour that can be found among people with autistic spectrum disorders


Some professionals in the field have picked out particular patterns of disabilities and/or behaviour that can be seen in some people with autistic spectrum disorders, and have named them as separate syndromes.


There is disagreement as to whether these so-called syndromes can ever occur on their own without the social, communication and imagination impairments that are diagnostic of an autistic spectrum disorder.


My own view, shared by many colleagues, is that they are part of the autistic spectrum, as is shown when a detailed developmental history is taken.


Non-verbal learning disorder(NVLD)

Study of the criteria for this condition shows that it covers people with the social behaviour pattern of Asperger syndrome, who also have problems with the non-verbal skills of arithmetic and some visuo-spatial skills. Asperger included such people in his descriptions but also included people with social problems who were very good with numbers and visuo-spatial skills.


Right hemisphere learning disorder

The same as non-verbal learning disorder. The non-verbal learning problems mentioned above are mainly located in the right hemisphere.


Semantic-pragmatic disorder

Good grammatical language but lack of ability to use language in a socially appropriate manner. This pattern is characteristic of the people Asperger described.


Pathological demand avoidance (PDA)

Briefly, avoidance of everyday tasks and manipulative, socially inappropriate, in some cases aggressive, behaviour.

3.  Developmental disorders that are not in the autistic spectrum but often occur together with an autistic spectrum disorder


These developmental disorders can occur on their own – that is, the child or adult concerned does not have the triad of impairments. However, the disorders listed below very often occur as part of the picture of an autistic spectrum disorder.


One of the most common mistakes made by clinicians lacking experience with autistic disorders is to observe the person’s clumsiness, or reading difficulty, or poor attention span and to diagnose that as the main problem.


They miss the fact that underlying the obvious difficulties seen on the surface is an autistic spectrum disorder with the characteristic social impairments.


It is of the greatest importance that the autistic spectrum disorder is recognised and the appropriate help and services provided.


Attention deficit/hyperactive disorder (ADHD)

Poor attention span together with marked overactivity.


Hyperkinetic disorder

Marked overactivity without poor attention span.


Attention deficit disorder(ADD)

Poor attention span without marked overactivity.


Tourette’s syndrome

A condition in which the person has many sudden involuntary jerky movements and vocal noises they cannot control.


Dyslexia

Specific difficulty with reading.


Dyspraxia

Specific difficulty with co-ordinating movements.


Developmental co-ordination disorder

Same as dyspraxia


Disorder of attention, motor co-ordination and perception (DAMP)

Used when the person has a combination of these problems; the perceptual problem may, for example, be dyslexia.

4.  Physical conditions affecting the brain that can be associated with autistic spectrum disorders

There are a number of conditions of this kind that can be associated with autistic spectrum disorders. Just a few examples are:


Tuberous sclerosis

Fragile X

Rett’s syndrome

Brain damage following encephalitis


If a child or adult has one of these conditions together with an autistic spectrum disorder, the physical condition should have appropriate treatment.


The autistic spectrum disorder requires the type of treatment, education and other services as for any autistic spectrum disorder occurring on its own.

5. Terms used in the International Classification System that are applied to difficult behaviour


Conduct disorder

Oppositional defiant disorder


These labels are most unhelpful. They simply name the behaviour without any indication of the underlying cause.


It is possible for a child or adult with an autistic spectrum disorder to be given one of these diagnoses if a proper history is not taken and the proper psychological investigations are not carried out.


If this happens, the needs of the child or adult concerned and their family are likely to be misjudged, with disastrous results.


Advice for parents


If parents are given one or more of the labels listed under 2. – 5. above, but feel that their son or daughter has features of an autistic spectrum disorder, the first step is to discuss this with the professional who has made the diagnosis.


If this professional insists that autism, in any of its forms, is not present, the parents should ask to be referred to someone who specialises in the field of autistic spectrum disorders.

 

 

Subtypes of Aspergers(Lorna Wing et al)

 

Aloof

 

Most frequent subtype among the lower functioning. Most high-functioning in this group are a mixture of aloof and passive. Limited language use. Copes with life using autistic routines. Most are recognised in childhood. Independence is difficult to achieve. There may be loneliness and sadness beneath the aloofness. Rain Man is an excellent example of this subgroup.

 

 

Passive

 

Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

 

 

Active-but-odd

 

Can fall in any of the other groups in early childhood. Some show early developmental course of Kanner’s, some show AS. Some have the characteristic picture of higher visuospatial abilities, others have better verbal scores (mainly due to wide vocabulary and memory for facts). May be specific learning disorders (e.g., numerical). School placement often difficult. They show social naivete, odd, persistent approaches to others, and are uncooperative in uninteresting tasks. Diagnosis often missed. Tend to look at people too long and hard. Circumscribed interests in subjects are common.

 

 

Stilted

 

Few, if any clues to the underlying subtle handicap upon first meeting. The features of AS are particularly frequent. Early histories vary. Normal range of ability with some peaks of performance. Polite and conventional. Manage well at work. Sometimes pompous and long-winded style of speech. Problems arise in family relationships, where spontaneity and empathy are required. Poor judgement as to the relative importance of different demands on their time. Characteristically pursue interests to the exclusion of everything and everyone else. May have temper tantrums or aggression if routine broken at home, but are polite at work. Diagnosis very often missed. Most attend mainstream schools. Independence achieved in most cases. This group shades into the eccentric end of normality.

rainbow drops

The NAS Autism Helpline is able to give information about professionals with a special interest in autistic disorders in the UK.


9th January, 2012.


The National Autistic Society has launched new telephone numbers for the following services:


Education Rights Service: 0808 800 4102
Autism Helpline: 0808 800  4104
Parent-to-Parent Service: 0808 800 4106

Calls to these numbers are free from landlines and most mobiles.

This is an important development as it will support more people to access the information, advice and support that they need; one in seven calls to our Autism Helpline are now from mobile phones. The new numbers also offer enhanced confidentiality as the mobile networks will not itemise calls to these numbers on bills.

Our Autism Helpline is for people with an autism spectrum disorder, family members and carers. It offers impartial, confidential advice, information and support around autism and related issues, including diagnosis, early intervention, therapies, behaviour management, education, housing, benefits and community care. Our helpline advisors can also search for local support in your area or direct you to appropriate services.

People who wish to book a telephone appointment with our Welfare Rights Service and Community Care Service can do so via the Autism Helpline.

Our Parent to Parent Service is a confidential telephone service providing emotional support for parents and carers of an adult or child on the autism spectrum. A parent or carer can call the service at any time and leave a message on the 24-hour answer phone. A volunteer will then call them back as soon as possible, at a time which suits them, including evenings and weekends

Finally, our UK-wide Education Rights Service provides information, advice and support on educational provision and entitlements to help guide parents and carers through education law and through what can often be a complex and difficult process. Our trained volunteers also help parents prepare appeals to educational tribunals.