Friday,21 September, 2018
Current issue | Issue 1294, (5 - 11 May 2016)
Friday,21 September, 2018
Issue 1294, (5 - 11 May 2016)

Ahram Weekly

Assisting autism

Autism in Egypt is widely misunderstood, with some young sufferers being relegated to the status of difficult or disobedient children, writes Gamal Nkrumah

Al-Ahram Weekly

“Schools connect children to their communities. Jobs connect adults to their societies. Persons with autism deserve to walk the same path” — UN Secretary-General Ban Ki-moon

The diagnosis of autism spectrum disorders (ASDs) is no easy task, and parents of autistic children can find it difficult to solicit social support for their ASDs afflicted progeny.

The alarming rise of neurological disorders, and especially ASDs, worldwide is of global concern and Egypt is no exception. There are no exact statistics in Egypt of how many people suffer from autism, but it is known that there has been a dramatic increase in ASDs patients over the past decade. Whether or not this is due to better diagnostic practices is unknown, since diagnosis is based on a child’s behavioural development over time.

Nevertheless, over the past 50 years the number of autistic children worldwide has gone up from one in 5,000 in 1975 to one in 38 in 2012. “The symptoms of autism vary in severity, based on social communication, or the lack of it. 75 per cent of people suffering from autism also suffer from some form of mental retardation,” Maha Helali, the parent of a young man with autism, Mustafa, 25, told Al-Ahram Weekly.

Helali is the founder of Cairo’s Learning Resource Centre providing specialised care to those with autism to assist them in integrating into society.

She helps people with autism, especially children, to reach their full potential by providing the support and services they need to become more independent and active members of society.

At the age of two, her son Mustafa was diagnosed with autism. There may have been a connection between autism and other neuro-behavioural illnesses in her family, and her cousin suffered from cerebral palsy, an affliction that leads to permanent movement disorders that appear in early childhood. Speech and language disorders are common in people with cerebral palsy, since the disease, in much the same manner as severe autism, affects the parts of the brain that control movement, balance and posture.

Asperger’s Syndrome, a milder social disorder than autism, is sometimes also classified as a type of ASDs. “It is important to note that there is no objective test for autism as such, and a diagnosis is made by observing the behaviour of the autistic child by parents, pediatricians and teachers,” Helali says.

According to her, it is now known that autism is based in biology and in the way the brain develops. Yet, individual differences in autistic children vary greatly, though they all can be difficult to interact with by both peers and parents. Perhaps it is important to note that the condition was first recognised in the 1940s, when it was viewed as a psychological disorder.

Directive parental behaviour was the main motive in the decision of Helali to devote her life to helping autistic children and adults. In 1996, she switched careers and quit her position at the UNESCO Cairo Office in order to devote herself to promoting awareness of autism in Egypt and to helping to develop means of improving the lives of autistic children, leading her to the establishment of the Learning Resource Centre. She has never looked back.

Stereotyped or repetitive motor movements, or echolalia, the automatic repetition of movements made by another person or imitative behaviour together with repetitive idiosyncratic phrases are symptoms of autism. Early diagnosis and treatment can help. “The treatment strategies for autism are tailored to individual needs. Behavioural training and management of autistic children is crucial in containing the condition,” Helali stresses. Speech therapy can be helpful in some children suffering from autism, helping them to improve their language and social skills.

Autistic children fall along a spectrum from mild to severe, and in some cases hypersensitivity to sound is indicative of a severe case of autism.

Therefore, the integrated treatment of speech with occupational and physical therapy is needed for combating autism. The early detection of hyper-activity and obsessive-compulsive behaviour is also important in the diagnosis of autism. And parents and teachers often overlook what is labelled as high-functioning autism.

“I had a five-year-old pupil who was very clever in mathematics, even though he was not social in his behaviour. Many parents refuse to acknowledge the problem or accept that their child is autistic. Autism affects more boys than girls,” Lesley Whiting, an English teacher based in Cairo, told the Weekly. Whiting hinted at chemically-induced brain poisoning being behind autism, or vaccination, but there have been no systematic studies of the subject. There is a growing awareness, though, that autism is a serious impediment to the development of future generations, and that its unprecedented increase could be because of environmental factors, and in particular pollution.  

Applied behavioural analysis (ABA) is a conventional treatment for autism, according to Helali, and so are loving care and patience on the part of parents, teachers and pediatricians. The proper treatment and education of autistic and related communication handicaps is a cause that Helali particularly upholds. Though there has been talk of electromagnetic radiation as a means of treating autism, many specialists are sceptical.

Autistic children suffer from myriad symptoms of deep malaise. Patients with medically unexplained symptoms abound, but the reluctance of parents to admit that there is a problem with their child can be a key factor inhibiting early diagnosis and treatment. There are several levels of autism, some cases are mild and others more severe. In the latter cases, the children may be incapable of communicating with others and avoid eye contact altogether.

But the symptomatic idiom of autism is sometimes subtle and difficult to detect. It includes addiction to television and social media. Autism is not a life-threatening disease, and it may not be taken very seriously. Yet, it impacts the lives of sufferers greatly and is in most cases a debilitating life-long stumbling block to happiness and a meaningful, enjoyable and fulfilling life.

“Rates of autism prevalence suggest that boys are almost five times more likely to have autism than girls, or one in 42 boys versus one in 189 girls,” Helali says. Why this is so is not known. Deficits in social-emotional reciprocity are more common among boys than girls, as are deficits in non-verbal communicative skills. However, adherence to routines, or ritualised patterns or regular activities, is a common characteristic of girls suffering from autism. And those who have a genetic pre-disposition and then suffer an environmental trigger can fail to initiate or respond to social interactions. Difficulty in adherence to routines, or ritualised patterns and even small changes can then cause distress.

A boy whose X-chromosome is missing the PTCHD1 gene or other nearby DNA sequences will also be at high risk of suffering from autism and other neurobehavioural disorders. “The total lack of facial expressions and the lack of understanding gestures are signs of severe autism.

Intellectual disability and autism often co-occur,” Helali explains.

“Nevertheless, autistic children are often very clever and diligent in school and achieve good grades. Therefore, it is not a disease as such, but a mental or behavioural disorder. Restless children are often autistic, and another symptom is the inability to concentrate for long on any subject the child is not interested in,” she adds.

The US actor Robert DeNiro, whose son suffers from autism, has urged people to watch the film Vaxxed  based on the revelations of a whistle-blower at the Centre for Disease Control (CDC) in the United States. This film raises questions about the possible connection between autism and vaccination. Yet, the point is that the film is not anti-vaccine as such, but rather urges the administration of safe vaccines. “The issue of vaccines in the aetiology of autism is a big debate. Vaccines hit a child’s immune system,” Helali notes.

She explains that autism is a complex neurobehavioural disorder that includes impairments in social interaction and developmental language and communication skills combined with rigid repetitive behaviours. The disorder covers a large spectrum of symptoms, skills, and levels of impairment. “Autism is a neurological disorder. It’s not caused by bad parenting. It’s caused by, you know, abnormal development in the brain. The emotional circuits in the brain are abnormal. And there are also differences in the white matter, which is the brain’s computer cable that hooks up the different brain departments,” says Temple Grandlin, a best-selling US author and autism activist.

Asperger’s Syndrome is also characterised by significant difficulties in social interaction and non-verbal communication. It was discovered by Austrian pediatrician Hans Asperger in 1944, when he found that some children exhibited severe difficulties in non-verbal communication skills, lacked a pronounced empathy with their peers, and were generally physically clumsy. Children with Asperger’s Syndrome often lack the basic skills of social interaction. Globally, it is estimated to affect 35 million people as of 2014, but in Egypt there are no exact statistics.

As is the case for other ASDs, sufferers may avoid eye contact and cannot express emotional reciprocity and hence have difficulty in having normal friendships with fellow children at school or in the family. They can be aggressive and restive, much to the consternation of teachers and parents. Intense preoccupation with a narrow pet subject also means that they can perform poorly at school. Their facial expressions, general posture and gestures may seem strange, which subjects them to bullying from their peers.

Many people with autism suffer from sleeping disorders such as insomnia. Even more intriguing is that autistic children have a tendency to create problems among family members, usually by instigating brawls between parents that in some cases end in divorce. It is not known why autistic children enjoy a fracas, but it is known that they tend to focus on certain violent sports when watching television, such as wrestling.

Occupational therapy is of paramount importance in treating the condition, though managing the symptoms of autism is a developing science.

Psychologists, psychoanalysts, psychiatrists, pediatricians and parents all have a role to play, but loving care and patience is often the most practical cure.

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