The Autistic spectrum
More suspicion surrounds some sort of connection between the MMR vaccination and the increased incidences being reported.
There is enormous debate raging about autism and its causes in the press these days - this is mainly down to the higher number of cases being diagnosed and the suspicion of some sort of connection between the MMR vaccination and the increased incidences being reported.
On one level it is good that more people are finding out more about the condition and what it means for families who are living with it. (Until now, most people will cite the film 'Rain Man' as their only source of reference.') On the other hand, there is an awful lot of confusion and speculation around. It is an enormous and complex subject and hard to do full justice to here. All we are setting out to do here is to clarify and convey the following:
- the 'autistic spectrum' and the barriers to diagnosis
- the current thinking regarding causes
- the crying need not only for research, but practical support
- sources of help and further information
What is autism?
Autism has long been recognised in the UK as being a biological, as opposed to a psychological, disorder. (This puts us somewhat ahead of the game, since many other countries have been a lot slower to acknowledge this critical fact.) The National Autism Society (NAS) was set up here over 40 years ago and is extremely well respected for the advances it has made in furthering understanding and coping with autism. It defines autism as 'a lifelong developmental condition which affects the way a person communicates and relates to other people.' It expands on this definition by identifying the areas that difficulties typically arise: speech, language, non-verbal communication, social interaction, imagination and inner language. Examples of what all this actually means in practical terms are as follows: while a child can often repeat words parrot-fashion, he or she is unable to use these words meaningfully in another context, severely inhibiting communication. The autistic child also has trouble reading facial expressions and moods and very often simply just does not know how to make friends with other children, even if they have quite an interactive relationship with their parents or carers - the social skills are simply not there. Neither is the capacity for imaginary play, such a powerful catalyst in a child's overall development.
Much has been made of the supposed special mathematical or artistic prowess of autistic children - in reality this is quite rare, occurring in approximately 1% of people with autism. What is confirmed, however, is that while autism crosses all race, religious and social groups, it is four times more likely to occur in boys than girls.
Rarely is there ever a case of 'pure autism' - other factors come into play to create what is being called the 'autistic spectrum'. According to the NAS, some 75% of children with autism also have at least one other learning difficulty - other ‘conditions’ that frequently go alongside autism are dyspraxia and dyslexia.
In short, there are varying degrees of severity - and some children are more responsive to therapies than others - so it is almost impossible to generalise about what autism actually entails. There is certainly the common element of a child being locked inside its own world, but how this manifests from child to child is very varied. It is further influenced by the child's personality, family and educational environment. While there is no cure as such for the condition, the NAS is on record as saying, 'A wide range of therapies and treatments have been developed- and while these are not cures, they can help improve the standard of life for a person with autism. Given the correct support, treatment and education, people with autism can lead a happy and productive life.'
How easy is it for autism to be diagnosed?
There is a very simple test that every GP should carry out at the age of 18 months. Called the CHAT test, it was originally formulated in the USA and consists of 10 simple questions that parents are asked about their child. These include ‘does your child point?’, ‘Does your child try to get your attention?’ ‘Does your child guide your hand towards a desired object?’ Depending on the answers given, the GP can decide to refer the child immediately with the suspicion of autism.
However, it has to be said that parental denial can be one of the chief factors in prolonging the diagnosis process. Parents know something is wrong but they are terrified of what they are going to have to face once it has a name. As Maire Ni Reagain - of the support group Fulpac who has been through this particular mill first hand - points out, 'You are terrified of the prospect of getting your child labelled with a diagnosis of a lifelong disability, so you may find yourself desperately concentrating on describing the child's strengths, thus giving a false picture of the child and making a diagnosis difficult.'
The process of arriving at a diagnosis can be an incredibly stressful and protracted. However, Maire's advice to parents is to face up to the situation as early as they possibly can, saying. 'Don't be afraid. Your child is still going to be the same child post-diagnosis as pre-diagnosis. Remember, the worse the diagnosis, the more help your child will get - and the bigger the stick you will have to fight for your child's educational rights.'
Another parent who has undergone the grief and despair of awaiting a definitive diagnosis is Lady Astor of Hever. Her daughter was diagnosed at a young age with a vague 'social and communication disorder with a moderate lerning disability'. Lady Astor continued to search fruitlessly for another two years before going back to the same GP who finally came up with autism. The diagnosis was confirmed by leading autism experts, Dr Judith Gould and Dr Lorna Wing using their newly-developed, very thorough diagnostic technique, called DISCO.
Once she had had her worst fears confirmed, Lady Astor admits she found the whole experience 'very isolating' but is grateful for the internet and all the help it gave her in tracking down experts, finding other people in the same boat and generally and understanding what she was up against. She has gone on to channel her devastation into very positive directions, fighting for the best for her daughter and working tirelessly to raise funds on behalf of the NAS.
Current thinking on the causes of autism
Much store is set by genetic predisposition as the main determinant – currently 15 different genes are being held responsible - with environmental factors also having a role. In the case of identical twins, 90% of affected pairs will both be affected, leaving a question mark over the remaining 10% where other – for example, environmental – factors are obviously at work. Much research has yet to be completed before we have the full picture, but it is strongly felt that autism appears as the result of a 'cascade' effect where one trigger will leave the body particularly vulnerable to the next assault. The MMR and other, mono vaccines are under close scrutiny since the emergence of so much anecdotal evidence pointing to a link between a child being vaccinated and the contemporaneous appearance of symptoms of autism. (However, some experts argue that the age of the children being vaccinated coincide with exactly the same age first symptoms would start to appear). Much debate has raged of late over the impact of thiomersal - a mercury-based vaccination preservative - and the increased incidences of autism. While the MMR does not contain the preservative, many mono vaccines do - as does Rogam, the anti-D vaccinations given to rhesus-negative mothers, and further research is being carried out into this connection since, if a woman carrying a genetically susceptible baby is injected with thiomersin, it could just tip the balance the wrong way.
While there is a strong possibility of a link between certain vaccinations and the subsequent onset of autism, there are not as yet sufficient scientific trials to back up the theory. However, the general consensus appears to be that we over-innoculise our children and do it far too early. Given the uncertaintly, parents are now pushing for the right to three separate injections instead of the combined MMR so as not to overload young babies’ immune systems - especially if there is any suspicion of genetic predisposition.
The need for specialist eduction services
Earlier in this article, we quoted Maire Ni Reagain of Fulpac as talking of 'a big stick' with which to fight for your children's rights. Given the rise in the incidences of autism, the more important it is going to be to have the support services in place to give every child affected the best chance to reach their full potential. Unfortunately it is very rare that you will find experienced one-to-one teaching in a specialist school environment. Usually, as Maire puts it, 'You have to hope your child will cope in an educational establishment which falls far short of this ratio or send them to mainstream where they may survive with support, but often unhappily and unsuccessfully educationally, never reaching their full academic potential'.
So it is not just urgent research into the causes of autism that is required, but funding for more dedicated educational establishments with trained professionals on hand. Many autistic children are not faring very well at all in mainstream schools where they have no specialist attention - as Lady Astor knows to her cost, having watched her daughter struggle to cope. At present it really is a case of a 'postcode lottery' with some areas being far better served than others and this must change if we are to cope with the rising numbers of autistic children coming up through the system.
Sources of practical help
While there are a number of local support groups in operation, there is currently no central national register of established groups so it's somewhat a question of feeling your way around.
The National Autistic Society is a useful starting point:
393 City Road, London, EC1V 1NG, United Kingdom.
Tel: +44 (0)20 7833 2299; Fax: +44 (0)20 7833 9666
London-based families can also contact:
1 Floral Place
London N1 2PL
Tel: 0207 359 6070
Hammersmith & Fulham Parents Support Group
309 Lillie Road
Tel:0207 385 6317
Recommended reading: The Autistic Spectrum by Dr Lorna