Asperger's Syndrome

A pervasive developmental disorder, first described by Hans Asperger in 1944. It lies within the autistic spectrum. Previously called high functioning autism. The main difference from classic autism is a lack of delayed or retarded cognition and language. They are also more likely to seek social interaction and share activities and friendships.

Prevalence: 36-48/10,000 This has changed as diagnostic criteria have become more specific. Lorna Wing ( who is credited as having first described a 'triad of impairment') began the debate on whether Asperger's syndrome (AS) is a discreet syndrome from autism/ autistic spectrum disorders (ASD).¹
Primarily occurs in boys with a fairly consistent ratio of M:F=4:1.

There is a genetic predisposition. Chromosome 7q is particularly important, though others are also thought to be involved.²
There is 60-95% concordance in identical twins. Twins may be differently affected within the spectrum of disability. Wing described 3 cases within a family of identical male triplets.³ They had differing severity. These were consistent with the relative traumas they experienced in their peri-natal lives.
There is an association with underlying medical conditions such as:

• Untreated phenylketonuria (PKU)
• Congenital rubella
• CMV or toxoplasmosis
• Fragile X
• Tuberose sclerosis

However this has been shown to be an association with, rather than a cause of ASD as many children with these problems are not on the autistic spectrum.

Environmental factors

Many are implicated. Toxins like lead, antimony and mercury have been found in high levels in the hair and blood samples of affected children. The theory is that ASD children are unable to detoxify like others can, although there is little written on this. This hypothesis also gives the underlying premise behind the gluten and casein free diet. Peptides created from gluten and casein accumulate and act as morphine like substances to ASD children. They exaggerate behaviours. A recent Cochrane Review found some evidence to support the diet.⁴

MMR and Autism

An awful lot has been written on this subject (see further reading), but to summarise the current position of the Medical Research Council,⁵ "currently there are no epidemiological studies that provide reliable evidence to support the hypothesis that there might be an association between MMR and ASD". In the US the Institute of Medicine reached similar conclusions, but added that, " its conclusion does not exclude the possibility that MMR vaccine could contribute to ASD in a small number of children."
Researchers have found that the MMR controversy has "caused parents of children with autism feelings of stress, guilt and frustration."⁶ The Health Protection Agency's figures show immunisation rates across the UK population fell from 92% before the controversy, to 80% by 2003/04. Uptake of MMR vaccine by two years of age has been estimated as 84 per cent and has increased across every region in England in the 2005/6 cohort.⁷

In classic autism children tend to be spotted earlier (18-30 months) because of impaired communication. In AS the diagnosis comes later- pre-school, if lucky. Many people with Aspergers may learn to mask their problems. They may present as patients with no serious mental health problem, but who are anxious, lonely, have poor employment record and just don't seem to fit in.

Language

Normal speech development before 4 years with good grammar and vocabulary. However their tone is flat and they are pedantic. They also have a restricted repertoire of subjects. They have poor non-verbal communication skills. They may take language very literally and be unable to interpret idiom e.g. in a nutshell; will be confused at how what you are talking about is going to end up inside a nut.

Cognition

Often obsessed with complex subjects and described as 'eccentric' or 'little professors'. IQ normal - above average. They score well in verbal but below average in performance abilities. Patients with Asperger's may be highly creative, and have exhibited outstanding skills in mathematics, music, and computer sciences. Their strength lies in concrete rather than abstract, thinking. They have poor powers of imagination. They lack an intuitive theory of mind, mentalising, and are often unable to talk about their own emotions which may lead to anxiety and depression in later life.⁸

Behaviour

Delayed motor milestones and then clumsiness. Poor sleep patterns. Difficulties falling and staying asleep. Interested in others more than with autism but does not share interests. Their interaction is naïve and one sided. Solitary - no friends. Socially aware - but may display inappropriate reciprocal interaction. They may be seen as eccentric. They are excellent train-spotters and collectors.
DSM IV diagnostic criteria can be found at aspergers.com - use the link from the Internet and Further Reading section below.
Diagnosis should be undertaken by specialist; neuro-developmental paediatrician or educational psychologist.
Adults can obtain a free assessment from Cambridge Lifespan Asperger Syndrome Service - CLASS. A formal diagnosis is useful in accessing resources, training and support. Tel: 01223 333936.

• Autism
• Metabolic and chromosomal abnormalities e.g. Fragile X, Cornelia de Lange syndrome

• Sight and hearing tests
• Chromosome analysis
• IQ Testing; older children

General points

• The National Autistic Society believe that early diagnosis and support is beneficial.
• Education building on their own specific interests gives greatest return. Any learning needs to be taken in small steps.
• They thrive with a good routine. Positive behaviour should be reinforced and rewarded.
• May benefit from social skills and communication training .
• Children may be vulnerable in school as the disability tends to be less obvious than autism. They are often bullied.
• Adults will need support and encouragement to lead independent lives. Counselling may be useful if depression is a problem.

There are many strategies available to help parents. The efficacy of these is largely unproven, however the major ones are outlined here. Very few are available on the NHS.

Applied behavioural analysis

Lovaas⁹ pioneered this system for teaching skills in bite size pieces by using motivators (specific to the child) to reward achievement. It is taught intensively (40 hours per week) in a one to one situation. It should be started as early as possible. There are some specialised schools which use this method extensively. They tend to be independent and expensive. Tutors can be contacted to come to the home. See PEACH

Sensory integration therapy

If there are marked sensory perception issues e.g. oversensitive to touch, desensitising gently over time may be useful. Contact local Occupational Therapists.

Irlen lenses

Placing differently coloured lenses over written matter can help with difficulties in visual perception.¹⁰

Gluten/casein free diet

Many parents claim improvements in bowel habit and sleep patterns whilst using this diet. Luke Jackson, a very articulate teenager with Asperger's, has written an excellent User's guide. See below.

Ritalin

Has been used by specialists to help with hyperactive behaviours associated with ASD. Parents may prefer to try and tackle the stimulus for the behaviour if possible.
There are many interventions that are all championed by those who use them. For up-to-date information and advice on biomedical interventions and how/when to introduce them, see The Sunderland Protocol at the Autism Research Unit in the University of Sunderland.

Risperidone

This has been shown to be beneficial in some features of autism.¹¹ However, the review commented that there was only limited data available from studies with small sample sizes.

• Depression
• Suicide

Because of their ability to compensate and mask their problems, many do find work in mainstream jobs.
Relationships, personal and social, remain difficult. Few marry.