When a niece, nephew, or friend’s child is suddenly diagnosed as autistic, it can be hard to know what to say or do. If you have an autistic child, you probably have hints or tips to help. What do you need? What drives you crazy? Are there great ways for a friend or relative to help?
Although autism is probably present from birth, or very soon after, its nature means that the specific disorders of developmental progression will not necessarily be apparent for many months or even years.
Relationships, communication and activities are immature in all young babies, observes Taiwo Adeogun, a paediatrician. “It is only when they become more sophisticated that delays and deviations from the usual may be evident. Diagnosis is complicated by the variations found in the mental ability of children with autism. About two-thirds have additional learning difficulties and their unusual behaviour patterns may be ascribed to an overall developmental delay,” Adeogun explains.
According to her, autism, a developmental disorder affecting children from birth or the early months of life, results in delay in, and deviance from, the normal patterns of development.
“Autism may be overlooked in children with average and above-average mental ability. Any odd behaviours or abnormalities in development, especially in very young children, may be dismissed as mild or transient,” she says.
The cause of autism remains unknown. However, some medical experts say the most likely hypothesis is damage to the brain, perhaps prenatal, though this has not been conclusively proved. To them, the factors responsible may include: genetic or chromosomal abnormality, viral agents, metabolic disorders, immune intolerance and prenatal anoxia.
These factors can result in other handicapping conditions, which explains why children with autism often have additional learning disabilities and some may have identified medical conditions such as fragile X syndrome, tuberous sclerosis and neurofibromatosis. However, this is not the full explanation as there are children who have damage to the brain as a result of these factors, but who do not have autism.
“There are also children diagnosed with autism in whom no cause is apparent, partly because the particular neurological impairment necessary for autism to occur has not yet been identified, explains Biola Babalola, a paediatrician. She also notes that overwhelming evidence that autism has biological roots but found no single consistent explanation exist.
Genetic factors were important in some cases, prenatal stress in others, while in certain cases autism could have been produced by a combination of genetic and environmentally-induced brain damage,” she adds.
When problems occur in all these three spheres of development (social relationships and interactions, language and communication, activities and interests), and at a deeper level than the usual variations expected in ordinary children, the distinctive pattern of autism becomes evident.
In the past, there has been confusion over terminology, but experts now consider that children with the triad of impairments should come under the umbrella diagnosis of autism spectrum disorders, which should prompt further in-depth diagnosis.
Chinyere Ogbonna, a clinical psychologist, observes that children pick up from an early age that their brother or sister is different, even if they do not understand what actually is wrong. They also notice other people’s reactions, especially their parents and grandparents, to him or her. They may be afraid of asking questions, in case they upset their parents even though they have plenty of questions. For example, they may be afraid that they too will catch autism.
“These questions and worries will change as the child becomes older, and they may fear that when they have children themselves that their child may have autism. While they may have a deep love for their sibling, they may also harbour feelings of resentment at the amount of time their parents are spending with the child with autism, and feel that they are being treated unfairly. Feelings of anger, embarrassment and guilt are also normal,” she explains.
According to her, not all feelings are negative; there is evidence that having a sibling with autism is associated with positive self-concept, interpersonal and care-taking skills. Also, and especially for sisters who assume a greater ‘mothering’ role than do brothers, this extra responsibility does not appear to contribute to poorer adjustment. Higher parental expectations, however, may fall on the lap of typically developing boys.
Research into the psycho-social adjustment of siblings of children with autism has had mixed results. This also applies to social competence and peer relationships. Whereas, some studies, such as that show decreased levels of social competence, reporting that siblings of children with autism have high level of loneliness and problems with peers.
However, it is found that low level of loneliness in the siblings of children with autism is related to a lack of social support from friends. Social support from classmates was also significantly correlated with academic problems.
She concludes that overall, meetings can be of benefit to siblings of a child with autism in offering support, but ideally follow-up sessions should be organised. Significant correlations were also found between number of children in the family and psycho-social adjustment; the greater the number of children in the family, the better the psycho-social adjustment.
Some experts say siblings in families with autistic child seemed more often to prefer being in families with only two children. Possible explanation for this includes, better adjustment in larger families. Additional siblings provide an important source of social support and the burden is shared. No gender differences were found in any of these analyses.