What happens to adults with autism when their parents die? What is autism? How is it diagnosed? These were some of the questions raised at an open house at Vineyard Place in Bergvliet recently.
The home is the latest in a pilot project between parents of intellectually challenged young adults and the departments of health and social development.
Debbie and Dudley Flugel are the parents of three young men, one of them is autistic. Since Jarred, 29, left school 10 years ago, he has been living in their Lakeside home but his parents wanted to find him a place to live, a place where he could be stimulated and occupied. This led to the idea of creating a suburban group home where adults with special needs and learning challenges could live in their adult years.
Providing the background, Southern Intellectual Disability Initiative (SIDI) chairman, Tony Heher, of Constantia, said a donor had offered a large house in Simon’s Town but after lengthy investigations the donor agreed to rather sell the house and apply the proceeds to a number of smaller group homes.
One of these is Humberstone House in Plumstead. This home for intellectually challenged young adults started out on Schoenstatt Estate in Constantia (“Great Oaks opens doors with a blessing”, Bulletin March 7, 2013). Vineyard Place is the second, a home for people with autism spectrum disorder (ASD).
Now that they have the house there are new challenges: covering running costs, food, utilities, staff and more.
“The homes are not receiving any support from government, despite a well motivated application to receive funding on the same scale and in the same way that existing homes receive subsidies,” said Dr Heher.
Guest speaker at the open house was psychiatrist Dr Judy Bentley who currently works in private practice but has spent four years working in the public sector with people with developmental disabilities and mental illness.
“And with their families who are often suffering with burnout and stress through caring for family members with these challenges,” said Dr Bentley.
She listed an array of symptoms and signs of autism, which can vary from person to person. And so it’s not surprising that autism sometimes goes undiagnosed.
This happened to mom of two, Celeste Esau who spoke at the open house. With fingers flicking, Ms Esau, who lives in Manenberg, said that as a child she knew something was wrong but she was only diagnosed as autistic in April this year. Two months later she was dismissed from work and now lives on a disability grant.
Bev Nel of Parow was also there and spoke of her son Jarred, 28, who went to school with Jarred Fugel. Ms Nel took her son to a psychiatrist when he was four years old only to be told she is neurotic. “He was flinging himself through windows and was in and out of hospitals,” she said, adding that the doctors probably suspected she was abusing Jarred.
“When he went to a children’s party, parents would say ‘what a good little boy’, but I would say no, I didn’t want him to sit in a corner alone playing with building blocks,” said Ms Nel.
Jarred Nel attends Orion Organisation Special Day Care Centre in Atlantis. He is a gifted artist and copied the Mona Lisa which was sold for R55 000.
Jarred Fugel was four when diagnosed with autism at the Red Cross War Memorial Children’s Hospital. It took three years to get him into a special needs school.
Assuming there would be a place for him when he left school, but finding nothing, his parents founded the Academy for Adults living with Autism.
“The origin of the name Vineyard Place is not only that it’s located in a wine-making area but because it’s a family-style home where care, nurturing, networking, maturing and growth are important,” said Ms Fugel.
“But it’s not a hotel. Keeping them occupied is a big factor. They have a list of household chores which they find rewarding,” said Ms Fugel. She said getting the home has been a long, hard journey.
Western Cape Department of Health spokesperson Bianca Carls told the Bulletin the South Africa Social Security Agency (SASSA), which manages all social grants for citizens of South Africa, has a very specific criteria that is used to assess and award these grants. “Dependent on the severity of autism, an individual may not necessarily be classified as intellectually disabled and may not then qualify for a social grant. However, we encourage parents to contact Alexandra Hospital as the facility provides treatment and rehabilitation for adults, adolescents and children with complex mental health needs and intellectual disability such as autism,” said Ms Carls.
Asked how many adults suffer from autism in the Western Cape she said it is difficult to say. “However, the Western Cape Forum for Intellectual Disability indicates that autism spectrum disorder affects about one percent of the population.”
Candice Voss, adult support manager of Autism Western Cape, said that according to the Centre for Disease Control, one in every 68 people have autism and that there is a disability grant given to adults which is around R1 500 a month.
She said there are programmes available which offer protected work environments for people with disabilities. Unfortunately these are often very busy and loud and because adults with autism often have sensory needs they are not always ideal.
“There are a few residential facilities but not enough and the few that are available are very costly and those coming from disadvantaged backgrounds are unable to afford them,” she said.
For further details about the Academy for Adults living with Autism visit www.adultswithautism.org.za, www.facebook.com/theacademyforadultswithautism, www.facebook.com/Autism-Enrichment-Centre-Cape-Town-457452967734813/
For more information about SIDI visit tinyurl.com/sidi-capetown
* Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterised, in varying degrees, by difficulties in social interaction, verbal and non-verbal communication and repetitive behaviours.
As of May 2013 all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognised as distinct sub-types, including autistic disorder, childhood disintegrative disorder, and Asperger syndrome.
ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some people with ASD excel in visual skills, music, math and art.