Parents of SA's autistic adults face crisis

There’s this quality I have noticed a lot of parents with an autistic child have. It’s a trait, or a demeanor and it’s a combination of exhaustion and hope. No, not hope. Optimism. Dogged optimism. “Things will get better. Things will improve.”

They have to think this way, the parents. Because autism can be a  frustrating disorder. Sure there are certain tests you can do to diagnose it but after that you’re on your own, pretty much, because every autistic child is different. Really, really different.

Typically they’re classified as ‘high-functioning’ or ‘low-functioning’. But even this doesn’t really cut it. Because you might get a ‘high-functioning’ autistic who can hold a basic conversation and know their times table, but then they can’t tie their shoe laces or go to the toilet on their own. A ‘low-functioning’ autistic – well, he or she probably won’t talk much at all and seem detached and unresponsive most of the time but then you find out they can do puzzles really well.

Having an autistic child is one thing. There is a fair abundance of places you can send them to be looked after, either just for the day or for weeks on end. But once they turn 18 and leave ‘school’, there’s a problem. There just aren’t any places for them to go.

That's because autism is not like Down’s Syndrome or some other mental disability; people with autism can very rarely be put together with people with these types of disorders simply because they’re too different. Some of them have quick tempers. They can be a little violent even. Not all, but some. But you can’t care for someone with autism in the same way you can care for someone with, say, Down’s Syndrome. Autism is still very misunderstood. You could even say that society doesn’t really know what to do with them.

So what happens is you get exhausted, wildly optimistic parents like Yvette Young who see there’s not much choice but to set up a place that their adult child and others like him/her can go to during the day. For stimulation and care. To relieve other parents for a few hours. Because autistics have a normal lifespan.

Young established the Adult Programme for People with Autism (APPA) in February 2015. Her son, James, is what you’d call ‘low-functioning.’ Vastly unresponsive. But Young persists. This takes massive patience and resilience because more often than not, it feels like you’re not getting anywhere. An autistic can learn but it’s usually a very slow process. Progress is barely existent.

APPA, based at the REEA Foundation in Craighall Park, Johannesburg, incorporates all kinds of social skills development in its daily schedule. At the moment the ‘school’ is small. Just a handful of boys and two dedicated helpers. They make puzzles. They paint. They play Nintendo Wii. They watch The Sound of Music and The Lion King. Once a week they take Young’s dogs for a walk in a nearby park.

All the time you’re watching Young and her son James and what you’re seeing is that familiar mix of fatigue and sanguinity. But you’re also seeing a mother’s love made flesh.

• For more information on the APPA contact Yvette Young at yvette@appautism.org. For more information on autism visit aut2know.co.za