living with my young son
dancing to some other drum
is like staring at a starry, starry sky
trying to get a handle
on the concept of infinity.......
extract from Ooops! Wrong Planet Syndrome
Autism is one type of
pervasive developmental disorder (
PDD), the others being
Asperger's Syndrome,
Rhett's Disorder and
Childhood Disintegrative Disorder. It is a developmental disability of the brain resulting primarily in problems with social interaction, but the overall effects are many and various, with differing degrees of severity. Many individuals will be able to lead full and meaningful lives within the
community, while others are so severely affected that they will have to live out their lives in
care.
Prior to the 1990s it was estimated that autism affected 5 in 10,000 live births, but recent studies show that it may now affect as many as 1 in 1000. Whether this is due to an increase in actual numbers or an increase in diagnosed cases is uncertain. Some people suggest that the increase is related to changes in diet or the vaccination program in infants but these are highly contentious issues.
Autism is ideally diagnosed at around 3 years of age but is often not spotted until much later. It is 7 times more likely to occur in boys than girls. Some people mistakenly believe that autism is a psychological problem brought on by bad parenting, but this is unfounded and places an unnecessary burden of guilt on the families involved. The widespread prevalence of autism indicates that it is not affected by race, intellect or the social status of the family, although there is some evidence of a possible genetic link.
Symptoms - begin to become apparent from around 24 - 30 months. Symptoms may be mild or strong and the pattern will be different in each individual. The following is an oversimplified list of a very complex set of behaviours:
- language development is slow or non-existent; language may be repetitive
- problems with auditory processing and speech; the wrong word may be chosen during speech, or the wrong meaning attached to words when being spoken to
- gestures often used instead of words
- exhibits solitary behaviour, may avoid touch or sounds such as human voices. Sometimes it is the case that the individual's senses are so acute that touch and sound may cause actual physical pain, but they are unable to communicate this fact until they are much older
- lack of eye contact
- rarely smile or laugh
- rarely imitate others
- sometimes appear to have a short attention span but this is actually because they are distracted by, and wish to focus on, something else
- slow to redirect attention (for example from a toy to a person speaking to them)
- individuals fail to recognise a relevance or connectivity between events or things, and react with fear or frustration if over-stimulated
- rarely play imaginatively
- uncontrollable tantrums, often for no obvious reason
- may be overly aggressive
- may obsess over an object, person or idea
- inflexible adherence to certain routines or rituals
- repetitive motor mannerisms
- may have seizures; 1 in 4 sufferers develop significant behavioural changes during adolescence. These include convulsions and sub-clinical seizures where the individual self-injures or has aggressive tantrums, sometimes losing some of the academic and social gains that they have previously made. Some sufferers, however, experience positive behavioural changes at this time
- While not a symptom, it is interesting to note that 1 in 10 autistic individuals (compared to less than 1% of the general population) show some degree of savant ability, including being gifted at music or art, or performing amazing feats of memory or mathematical manipulation. This is beautifully illustrated in the film Rain Man when Dustin Hoffman reads and memorises the phone book and is able to tell a stranger her phone number.
Diagnosis
To be diagnosed as having autism the individual should be shown to exhibit at least six of the above symptoms across three broad areas: social, behavioural and linguistic, as well as showing delays in communication, social interaction and play. The onset of the changes has to occur before the age of 3.
Treatment /Therapy
All too often neuroleptic drug treatment is deemed to be the way to treat adults with autism in order to keep the patients docile. This therapy originated when autism was less well understood than it is now, but continues to be the method of choice (probably through ignorance) of many practitioners today. Neuroleptic drugs have many dangerous physical side effects and should only ever be prescribed with extreme caution. The use of such drugs for people with autism can be detrimental in that they further confuse the mind and hinder communication therefore adding to the frustrations of the patient and reducing their quality of life.
Naltrexone is a beta-endorphin inhibitor which has some shown success (although results are inconsistent) as a drug therapy for autism. The theory is that there are high levels of naturally occurring beta-endorphin in the brains of people with autism, resulting in a decreased need for gaining pleasure through social interaction. By blocking the endorphin receptors, naltrexone acts to reduce background levels and therefore enhances the requirement to be sociable. The drug is also effective in reducing the tendency to self-harm.
Vitamin B6, especially in conjunction with magnesium, has long been known to be helpful in about half of all cases. It reduces the frequency, of seizures, sometimes eliminating them altogether and helps control obsessive/compulsive behaviour.
Injections of the hormone secretin are proving to be extremely useful in some autistic children. This research is still new and clinical trials are on-going; little is known about the how it works or whether there are any side effects.
Special education and behaviour modification programs are useful in many cases, but again individuals vary vastly in the severity of their autism and the need for this should be carefully assessed. Some autistics manage to cope with mainstream education, but most are overwhelmed by the social aspects of school.
Computers are proving to be extremely beneficial to people with autism. Individuals can control the level of stimulation to suit themselves and the computer provides an excellent means of communication which they can take advantage of. The computer also provides a resource to play, be creative and learn in an unthreatening and self-directed environment where users are not overloaded with external stimuli.
Relaxation, meditation, visual imagery therapy, and exercise are useful techniques for the autistic individual as well as for the rest of the so-called 'normal' population!
Outlook
While there is no cure for autism, the best that can be done is to diagnose and understand the condition early enough so that the child can grow up in an environment which is safe and suited to their own special requirements. It is sometimes possible to partially manage the symptoms with drug and/or vitamin therapy and through carefully structured education. A great deal of research is being done and hopefully in the future it will be possible for all autistic people to enjoy a good quality of life and to be happy and fulfilled.
For further information: The Autism Research Institute (ARI), is the hub of a worldwide network of parents and professionals concerned with autism. It was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. Their web site can be found at: http://www.autism.com/ari/
References include:http://www.unc.edu/~cory/autism-info/CHALU.html
http://www.autism-society.org/
http://www.autism.org/
http://www.apana.supanet.com
http://www.shifth.mistral.co.uk/autism/
http://www.macalester.edu/~psych/whathap/UBNRP/autismopioid/treatments.htm
With thanks to
The Oolong Man for his encouragement, helpful suggestions and links