What is it?

Autism, which is reported to be a growth disorder seems to affect boys more than girls (out of 5 children, who are autistic, 4 are boys usually boys). Characteristics of these children being unable to speak or saying just a few words, being obsessed with certain objects like cars and generally being detached from their surrounding environment, especially children their age. The cause of autism has not been conclusively established and a lot of research on the condition is still ongoing. (For a detailed description, see UK's National Autistic Society webpage entitled About autistic spectrum disorders.)

Who does it affect?

Until recently, autism was considered to be a rare disorder, but in recent years with more elaborate diagnostic procedures, autism is reported to affect 2–10 in 10 000 children in the general population, with boys comprising almost 75% of all autistic children. Despite the different prevalence rates in boys and girls, no link to the sex chromosomes has been reported. Almost 80% of affected children develop signs and symptoms of autism during the first year of life, while the rest develop the full-blown disease by the time they reach the third year of life.

Autism in Uganda

While there is growing recognition of this condition in the developed world, there it is hardly understood in countries like our own Uganda.

According to the US Centers for Disease Control, autism is estimated to affect an estimated 1 in 250 births. In Uganda, this would mean almost 90,000 children and adults have some form of autism.

Facilities and services for children with special needs in Uganda are inadequate and are generalised, mixing children with diverse disorders and further hindering development for autistic children.

What can we do about it?

Parents sometimes feel overwhelmed by the challenges of raising an autistic child. But in fact, there is a great deal we can do.

Education

Although many approaches appear to be beneficial, highly structured programs featuring individual instruction seem to produce the greatest educational gains. One of the reasons for individualised instruction is the fact that autistic children do not usually initiate interaction with others and drift into repetitive patterns of behaviour if left to work on their own. However, they react well when tasks have been broken down into clear and simple steps, and are provided with lots of visual clues to help this process. Above all, they need predictability. They like to know what comes next as change can lead to distress. At the same time, structure and predictability should still leave room for flexibility and spontaneity.

Nutrition

While there are no drugs, vitamins or special diets that can correct the underlying problems that seem to cause autism, changes to diet and the addition of certain vitamins or minerals may help with behavioural issues. Over the past 10 years, there have been claims that adding essential vitamins such as B6 and B12 and removing gluten and casein from a child's diet may improve digestion, allergies and sociability. Not all researchers and experts agree about whether these therapies are effective or scientifically valid.

Support for parents

While autistic children themselves may not suffer or even perceive stigma, the stigma is often borne by the parents who have to apologize and attempt to explain their children’s behaviour. Because parents are unable to explain their children’s behaviour in every instance, they sometimes choose to isolate the child and leave them out of public activities. For some parents, and mostly for mothers this means that they too chose to stay out of these public activities rather than leave the child at home each time. These parents need support (including counselling) and information and would benefit greatly if the community were better informed about autism. This is why advocacy is so important.

Advocacy

There are many ways to do advocacy on behalf of autistic children and their families. One is simply to spread accurate information as widely as possible through publications and websites (like this one!), open lectures, visits to schools and businesses, and so on. Advocacy can also be more political, bringing pressure to bear on decision makers, through the mass media, through direct contact with public authorities, and public meetings about specific issues.

But advocacy is also important at a personal level. Parents and other relatives of autistic children can become effective advocates if they inform themselves, cast off the feelings of shame and stigma that many have imposed on them, and are willing to talk about autism openly and confidently.

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