It was with immense difficulty that Shellique Carby addressed a group of parents at a recent autism meeting but as she spoke, many were inspired by the way she embraces her life and individuality.
Misunderstood by her family and rejected by her peers, Shellique, a 22-year-old journalism student endured an abusive childhood and was continually reprimanded by her educators. It was not until a few years ago that her so-called Ârebellion and disruptive behaviour was Âdiagnosed as Asperger’s Disorder — a mild form of autism.
Gullible, naive and stubborn
As a child Shellique was often caught climbing over walls into neighbouring properties, engaging in pranks and fights and disrupting lessons at school. She rarely sat still and Âstruggled to concentrate.
“I needed a lot of explanation to understand concepts and instructions, so I would constantly ask why?” she said.
Shellique would often be the butt of a joke because of her susceptibility to believe stories conjured up by other students. She explained that Asperger’s encouraged a gullible and naive disposition.
Of her character she said, “I was very stubborn and resisted people who tried to force me to do Âsomething. If I didn’t get something I wanted, or if I was angry, I would go into a temper tantrum.
“My parents didn’t know how to deal with me so they became inconsistent towards me in their efforts to discipline me. I hated them and they hated me. They were always criticising and threatening me because of my behaviour. I never knew from one minute to the next what they would be like towards me. I lived in fear of them and tried to avoid their anger while also standing up for myself.”
Confusion set in
An inability to understand their daughter’s behaviour resulted in a rather confused Shellique being sent to a bridging home for teenagers who were drug addicts, alcoholics and prostitutes. “I had never done any of those things,” she said.
With labels that varied from “retard” to “undisciplined, rude and insensitive” and “spoilt brat”, Shellique endured varying degrees of punishment and was ultimately drawn into a cycle of physical and emotional abuse until she was diagnosed with of Asperger’s Disorder three years ago.
Misunderstood
After being diagnosed, Shellique was initially angry and wanted revenge on everyone who had teased or judged her, she admitted. It was, however, a defining moment, not only for her, but also for her parents and her teachers.
“Before my diagnosis, teachers didn’t understand me. They shouted at me for not hearing correctly and not doing the right thing. I was relieved because I realised that I couldn’t control most of my behaviour and that there was a biological cause behind it,” she said.
“I never imagined that Âsomething was wrong with my brain, so this changed my outlook. I came to accept myself instead of going around in Âcircles all the time.”
Shellique also suffers from Attention Deficit Disorder, Obsessive Compulsive Disorder and Oppositional Defiance Disorder. She is reliant on antidepressants to Âstabilise her mood swings. “The main problem is social impairment. We are different because we are very literal, we think in black and white. We hardly ever cry because we don’t have the ability to do it.”
Other challenges
Other patterns that she follows almost obsessively are specific Âmealtimes and a daily exercise regime. A low immune system and allergies result in her Âfrequently being ill and thus falling behind with her studies.
“I hate group work and I struggle to concentrate in lectures or when I am reading. I still struggle to make friends and I get very angry if I’m in my residence and people are making a noise,” she explained.
While Shellique will always carry scars from her troubled youth, she nevertheless asserts a refreshing Âattitude and confidence. “I made a decision to stand up for myself against criticism. This is a journey of discovering my talents and the limits of my abilities. I learnt how to embrace myself,” she said.
Lack of educator training
One of the greatest hurdles facing children with autism is educator training, says Lisa Aziz, chairperson of Action in Autism. Autistic children have been perceived as uneducable and are therefore not allowed into mainstream schools.
Aziz, mother of eight-year-old Tariq, an autistic child, said: “Every child has a right to education. Yes autism is a spectrum condition, but teachers have to be trained to deal with autistic children.”
Accrding to Aziz there is no infrastructure for autistic children in KwaZulu-Natal because they ran on a medical module from the Âprevious dispensation.
Following vigorous lobbying by Autism in Action the KwaZulu-Natal department of education opened 13 units in as many schools last year. Aziz maintains this is still inadequate because each of the units caters for a maximum of between six and eight children.
Although many children with autism spectrum disorders and their families have been helped, there are still countless others who live in a state of crisis every day, facing Âexorbitant medical costs.
Former KwaZulu-Natal’s MEC for Âeducation, Ina Cronjé, allocated R30-million to Âeducator training. Acknowledging the Âshortage the provinces department of Âeducation announced that an Âadditional 12 units would be opened in the province this year.
Aziz indicated that additional meetings had been planned to discuss funding for the implementation of home programmes for pupils who were out of the school system. Other priorities include lobbying the Medical Aid Board to assist with the exorbitant medical expenses and the establishment of an early learning intervention centre.
What is autism?
A neurological disorder, autism is characterised by a marked impairment in social interaction, verbal and non-verbal communication and limited and restricted interests and behaviour.
- It maintains in the first three years of life
- It is a neurodevelopment Âdisorder and is NOT caused by bad parenting. Every child is unique in the way the condition manifests itself
- There is ongoing uncertainty about the cause, treatment, Âintervention in and prognosis of the condition
- Statistics both locally and worldwide vary. Initially it was thought that between four and 10 in 10 000 people were affected, but more recent statistics maintain that the figure is closer to one in 166 people
- Boys are four times more likely to be autistic than girls
- The cost of caring and providing for a child with autism is vast — in most cases the child requires 24-hour care
— Additional information courtesy of Action in Autism