Managing autism from a personal angle

Autism is increasingly becoming a nightmare for most families around the globe and Namibia is no exception.

In a bid to try and keep control of the condition and assist parents with autistic children, Petra Dillman, a parent of a 23-year-old young man with autism came up with the idea to establish an organisation; Autism and Asperger’s Namibia, to improve knowledge and awareness on autism in Namibia.

Dillman who is the only permanent volunteer for the organisation says her job entails everything from being the manager to the cleaner; secretary to a driver; from organiser to supporter and from a parent to a teacher.

“The idea to establish an autism organisation was mine, being the parent of a young 23-year-old autistic man as I know what parents in my shoe go through. I have been a member of Autism South Africa since 1993 and have been serving on their executive since 1994. Furthermore, I am a member of autism organisations elsewhere in the world and thought it best to improve knowledge and services in Namibia through registering a credible organisation,” says Dillman.

Dillman defines autism as a behavioral condition; the etiology of which is yet unknown, “It is a developmental disability that affects persons in different ways, with different severity. The marked impairments are observed in communication, social interaction and theory of the mind; meaning, the affected person has difficulty knowing what someone else might be thinking or meaning. It is not that they cannot communicate or socialise, it is the way they do it, the quality of their interaction.”

Asked if it is possible to reverse the condition if identified at an early age, Dillman says autism is not reversible but structured treatment can be done at an earlier age, to improve the child’s learning outcome and quality of life.

“If identified at an early age, structured treatment and intervention can assist greatly in improving quality of life but autism cannot be reversed,” she says, adding that, “Autism can affect anyone, irrespective of where they live or where they are, autistic children become autistic adults. Because some are severely affected than others, the outcome and quality of life is different for every individual and the more high functioning the more adults seem to cope better, especially if they do not have secondary mood-related issues or anxiety disorders.

“After an academic career, I trained and worked as a set dresser in the movie world for five years, then decided to go to college to do a secretarial course. After it transpired that our son had autism, I went on and did many educational and therapy courses related to autism and special education, reading and researching far and wide,” she states.

“In our organisation, we hold parent-teacher training sessions and we bring professionals from abroad to impart their knowledge and train us on how to cope with our loved ones with the condition. We are also in the process of setting up a professional team to assist children regularly at home and at school.”

But running such an organisation has not been an easy task for her as she faces challenges of raising funds for the Resource Centre and workshop and of convincing the community that people with disabilities deserve the same opportunities for education and quality life as anyone else.

She says, “I am facing challenges in convincing the corporate world that it is a worthwhile project although the monitory returns might be low at the beginning. Another challenge we face as an organisation is in convincing the community that people with disabilities deserve the same opportunities for education and quality life as everyone else. People with disabilities, because of their challenges, actually have to work harder in order to obtain everything and anything in life. So we try to convince parents that it is their responsibility to afford their child with disability the same opportunities as any other children.”

Dillman plans to establish an assessment and diagnostic centre for persons with autism; assist inclusive classrooms in Namibia to gain knowledge and get training on autism; set up support groups in other towns in Namibia and equip a sheltered workshop for people with disabilities with outreach and support programmes to individuals working from home.

There are many factors that lead to autism and research is still underway on that subject. “Autism can stem from biological or environmental factors or the cause may be unknown. Seven to fourteen genes, which might be implicated, have been identified. Note that ASD is definitely not psychological; it is not the result of bad parenting and children with ASD do not choose to misbehave. It would appear that ASD occurs as the result of varied and different biochemical causes and parents as a malfunctioning of the brain.”

Dillman advises all parents with children suffering from autism to accept them as they are and try to see the world with their eyes, “Accept your child as they are and try and see the world through their eyes. Assist in their intervention as much as you possibly can and build up a team of helpers made up of family, friends and others involved in the child’s life.”

Treatment for autism is very costly, especially if one goes for the 40-hour per week training where various tutors work with the child every day. But Dillman has a workable solution, which parents with autistic children can use as it also worked for her and her child.

“Parents must understand that even if they don’t have the resources for their children, there is a lot that they can do to assist them. We brought up our own child with a home programme tailored to his needs and progress was slower but more generalised. Our son is now a fine young man who cannot speak but is learning to communicate with picture symbols and learning is life-long,” concludes Dillman. PF