‘What do we do before crossing the road?We look to the left and then right; if there is no car, we cross,” says Rachel Phiri.
This is a familiar lesson to those with children. But the group Phiri is addressing is made up of adults between the ages of 19 and 33.
Phiri is a facilitator at APP Autism —an adult programme for people with autism — in Craighall Park, Johannesburg.
“There is no car, let’s cross,” she says.
When it comes to autism, most interventions focus on children. But what happens when autistic children become adults and have to make their own way in the world?
Some children on the autism spectrum grow up to function independently as adults, with careers and families of their own. Others do not.
APP founder Yvette Young’s son, James, was one of these. Even with all the intervention he received at school, at 25, he is not independent and is unable to speak— two signs of severe autism.
2014 was James’s last year at a special-needs school, and Young needed to find somewhere that would still provide him with learning, instead of him idling at home.
She found facilities that cater for adults with general special needs — mostly in workshop set-ups — but none that focused on the specific needs of adults with autism.
“Autistic people need variety and frankly, some of them need a lot of support, and can’t achieve that at work on their own. And then if you can’t do the workshop work, you go into a section with very severely disabled people, for example with cerebral palsy, where there is very little stimulation. So I just couldn’t find a niche for him,” says Young.
So in 2015, Young started APP Autism for young adults such as James who could not “fit in” in the workshop environment.
“I wanted it to be realistic in terms we now know: that these kids are not going to go to work, they’re not going to go to an office environment. But they have needs. They want a productive day;productive could be anything, you know, to their level … And having fun. And feeling like they belong somewhere. And having individual attention,” she says.
Just as the group is about to cross the road, a voice shouts that there is a car coming.“I just saved a life,” says Zayyan Suleman. “Had they crossed the road, someone would have been knocked down by a car.”
Zayyan is the life and soul of the group. He chats to everyone,makes jokesand laughs frequently.
The group finally arrives at their destination, a nursery. At the nursery — where they go once a week — they water the plants, do gardening and weeding. Today, it’s weeding and later, they feed the weeds to the chickens.
The nursery is attached to a second-hand shop that sells anything from books to CDs and antique furniture. As most of the group leaves the property, Luke Odendaal (22) steps into the shop, where he works twice a week.
“I unpack the boxes with book donations [and] put the books in alphabetical order so that customers find the books in alphabetical order. I stick labels on the shelves. I sometimes price the books. I enjoy the job,” he says, flashing a faint smile.
“I sometimes get paid. I get R400 a month. I keep my money safe for when I want to buy something. I recently bought some CDs —worship song CDs —I also bought a CD that has a collection of 100 kids’ songs. I play the CDs on my DVD player.”
Odendaal is one of the adults who are highly independent in the group. But he does not maintain eye contact while talking — this is common for people with autism.
“I like listening to music, I like worship songs. My favourite worship songs are Lord I Lift Your Name Up High, I Have Decided to Follow Jesus and What a Friend I Have in Jesus. I enjoy kids’ music as well,” he adds.
He lives alone: “I have been staying alone for nearly one year. My parents decided that I needed to stay alone. It’s been well staying alone,” he says.
Young says that, though Odendaal is fairly independent, he has a childlike mind and is often unable to focus on a task for a long time. But, she says, staying alone has been a success as he can prepare meals, get himself ready for the centre before his mother picks him up, and sometimes he Ubers back to his cottage.
The programme at APP is structured so that it provides for those who are independent and those who need a lot of support,such as those who have severe autism and are non-verbal.
Inappropriate or antisocial behaviour can be a feature of autistic behaviour, and programmes have to be able to deal with it. “[Participants may]pick their nose or [masturbate]. They’re adults, but they do itin public, and you’ve got to stop that. We have people who will throw a tantrum walking to the park. Because tantrums are just one of those things that go with [autism].
“And they will take their clothes off in the street. So there’s lots of different behaviours… But we have to work with them for them to function in society,” says Young.
Other activities at APP Autism include teaching the group daily living activities such as food preparation, baking, hanging up clothes and household chores such as cleaning. During the week, for about two hours, they go to a protective workshop where they do sorting, compiling, assembling and packing.
They also get to walk dogs, participate in art classes, have music therapy and once a week they go to the nearby sports field where they can play soccer or cricket. The group also does numeracy and basic maths.Writing skills and money skills are taught by playing games.
In its first year, APP only had four people with just one staff member, Phiri. Now it has 15 young adults and four facilitators. The fee of R5000 a month per person helps to keep it running, but the centre also relies on donor funding. Young’s dream is to grow it to other parts of Gauteng,so that each adult centre catering for people with disabilities will have an autism wing for adults with autism.