Asperger’s is an autistic spectrum disorder (ASD) of which the exact cause is not known, although there seems to be a strong genetic component. The disorder also seems to be linked to structural abnormalities in several regions of the brain, though children and adults with Asperger’s syndrome are often of average, or above-average intelligence.
Because of the similarities between advanced ASD and Asperger’s syndrome, it’s hard to diagnose these in young children. Melissa Braithwaite, an educational psychologist from Cape Town, says the difficulties associated with Asperger’s syndrome are more subtle than those you would see exhibited by a child found on the more severe end of the autistic spectrum.
“There are a set of distinct diagnostic criteria for the diagnosis of Asperger’s syndrome,” says Braithwaite. When talking about autistic spectrum disorders, you always look at the “triad of impairment”, she explains, “impairment in language and communication; social interaction; and imagination and flexible thought processes.”
Children with Asperger’s syndrome have severe difficulties in reciprocal social interactions. This means they struggle to consider and understand other people’s thoughts and feelings, which makes social interactions confusing.
Secondly, as with all children with ASD, but to a lesser degree, children with Asperger’s have all-absorbing and narrow interests, which might include rote or repetitive behaviour (also called stimming), such as lining up toys in a specific order. They are usually obsessive about routine and have a strong resistance to change. If not supported, this can negatively affect a child’s progress and development. They also display an unusual sensitivity to sensory stimuli (they may, for example, be bothered by noises that don’t annoy others.)
Children with Asperger’s struggle with speech and language issues. “These children have either delayed, superficial and sometimes good expressive language, which sounds almost formal or rehearsed. But they are confused about the meaning of what is said or cannot comprehend what is said,” says Braithwaite. “Their non-verbal communication skills are a problem. It’s difficult for them to read the facial expressions or body language of others. They themselves can display inappropriate body language or use inappropriate facial expressions.”
Though, reiterates Braithwaite, “It is always important to remember that a diagnosis is only important in so far as it guides intervention and should not be used as a box in which to keep children. With support and team work, we are always amazed and surprised by the wonderful progress children can make.”
Braithwaite adds that the most important area to assess when looking for signs of Asperger’s is the child’s development – especially your child’s own development as an individual and that of your child as a social being with children of a similar age.
Janet Robson’s 13-year-old son James is attending a mainstream high school this year. But this Durban teacher did not always feel confident she would see this day. “James was a very difficult baby. He was fussy and had a weak immune system. He was also exceptionally sensitive to sound. Everyday noises that we didn’t even pick up, would disrupt his routine. He would clasp his little fists over his ears, and wail for hours.”
When James was only six months old, Janet was aware that her son could not perform a simple social task like waving goodbye, and at 18 months she realised his speech was behind those of his peers. That’s when the long journey to diagnosis began. First they visited a paediatrician, and then suspecting a hearing difficulty, the audiologist. He was then referred to a speech therapist. But all the tests showed James was fine.
Not much was known about Asperger’s syndrome then. Janet and her husband did hours of research and when James turned four, they realised he might have Asperger’s, though it was only officially confirmed when James was seven. “It was a very difficult time, but once we knew what was wrong, it was a relief. We now had a name and could start towards helping our child achieve better health.”
When it comes to continuing support, it is important parents find a school environment that will nurture and develop your child. If your child doesn’t need special schooling, make sure you find a school that will understand and support your child’s needs. “Look for a school that has a passion for inclusivity and is knowledgeable about Asperger’s and the accompanying needs your child will have,” says Braithwaite. “You are looking for a partnership where you are able to communicate openly and work towards solutions for your child.”
James has always attended a mainstream school and was assisted by a facilitator from Grade 00 to Grade 7. Now he attends school on his own. “He is an exceptionally bright boy and a very pleasant child,” says Janet, “but we are aware that no-one can ever outgrow Asperger’s. The most important thing is that James has grown to know himself. After much intervention, James had accumulated sufficient skills to cope in a mainstream environment on his own and was able to make some real friends to boot! We know there will be more obstacles ahead. He’s a teenager now and it’s a very emotional phase in life. We know and he knows that we have to work on his socialisation skills. He will get anxious and we’ll have to control the angst. But as with anything else, we plan ahead and try to foresee obstacles and give him tools to cope with them.”
Psychologists, paediatricians and neurological paediatricians are equipped to assess a child and make a diagnosis. A psychologist can continue the long-term support these children need in developing social awareness, while physiotherapists and occupational therapists play an important role in working on the child’s sensitivity to sensory stimuli.
Diet intervention is another route that has given some parents success, while other parents have found an intervention programme useful. Janet strongly believes that the parent-based Relationship Development Intervention (RDI) programme, which helps parents teach their child how to participate in emotional relationships by exposing the child to natural scenarios in a gradual and systematic way, was the turning point in James’s development. Autism South Africa cautions parents about doing proper research and getting first-hand referrals before putting their trust in a specific programme.
The bottom line is: children with Asperger’s who receive proper support and professional assistance can lead a good and productive life.
Lawson who received her PhD last year says, “Today, I connect more readily with life and enjoy both family and friends around me. I am happy alone especially when I can pursue my own interests and I have developed strategies that enable me to more than cope with life’s demands. One of the best tools we can equip our youngsters with is that of teaching them strategies to cope with change. One of those is that it is okay when things don’t go exactly to plan.”