Challenges facing people raising autistic children

A few weeks ago, I was scrolling my feed on Facebook when I came across a video of a mother and her autistic son.

The text on the video read: “Assisting autistic son [with] brushing his teeth and this happens.”

In the short clip, it seems the son runs out of the bathroom and his mother follows him. As he runs down the stairs, she grabs him and he tries so hard to get her to let go of him but she doesn’t. “Stop, sit down, sit down now,” she says.

He asks why repeatedly. She keeps saying: "Sit down." And then finally, she says: “Safe hands.”

At this moment, she puts her hands together and her son, who is now sitting on the staircase, repeats after her, puts his hands together and says: “Safe hands.”

At that moment, he instantly becomes calm. His mother then tells him that he has to calm down as he is hurting her. “You’re doing so good,” she tells him and encourages him to keep it up.

The video has 16-million views, 18,000 shares and 23,000 comments, many of which are prayers for the mother and her son, while others say they have learnt so much about how to deal with autistic children just by watching it.

In the comment section, the person who shared the video reveals that the mother and son have a YouTube channel. A video posted on the channel shows the mother trying so hard to calm her son down, while he keeps saying he wants his tablet.

He kicks her repeatedly, but she doesn’t stop trying to calm him down. She says the words “safe hands” over and over again. He eventually sits down with his hands put together.

This is the reality of many raising autistic children, and this mother has found a way of calming her son down using the “safe hands” technique, one which many raising autistic children say they will adopt.

April is Autism Awareness Month, and the SA Depression and Anxiety Group (Sadag) hosted a “ask the expert” session to discuss autism and mental health.

Autism SA educational specialist Vicky Oettlé says there needs to be an understanding that there is nothing wrong with autistic people, they just behave differently.

“It is possibly one of the most complex disabilities out there in the sense that there is not a checklist that we can just check often to say this is what autism looks like because it is very different for each individual," Oettlé says.

Here are some areas specialists focus on when doing a diagnosis:

Communication: How is the person communicating and some autistic people do speak, they can have a conversation like this where they can have a back-and-forth conversation. Some autistic people don’t speak at all and some autistic people have what we call unrealistic speech. What they are wanting to say, what is in their head, is not what is coming out of their mouth and some autistic people are minimal speakers.

Behaviours: Don’t think of behaviours as something negative. This is looking at repetitive behaviours, repetitive thinking pattern. Those very stereotypical things you hear about autism, those are sometimes different. The sensory profile is also different. Most autistic people have sensory difficulties and this is either very sensitive, so hypersensitive or hyposensitive – not sensitive at all. Some people can be hyper and hypo in the same sense in the same day. It can be incredibly difficult to navigate and to work out.

Social: Simply put, autistic people socialise differently. There is nothing wrong with the way they socialise. Some autistic people prefer to be alone sometimes, some autistic people prefer to be a part of things. It really just depends on each individual.

Oettlé says in SA, specialists can reliably diagnose a child from as young as 18 months but there is research being done and soon diagnosis could be made in six months.

She said they were seeing a lot of adult women coming to them, saying they think they are autistic.

“Adults are often diagnosed and particularly women these days. Children are kind of commonly seen as autistic but it is a developmental disability, it is a lifelong disability. It doesn’t mean that because you were not diagnosed as a child, you cannot be diagnosed later on.”

Oettlé says many autistic people have depression and severe levels of anxiety.

“In fact, that anxiety, I see across the board. It doesn’t matter what support you require [e.g. sensory challenges] as an autistic person. There are often very, very high level of anxiety which is a challenge for everyone. I do think mental health plays a huge role in autism. I don’t think we understand them well enough, especially from the perspective of autistic people. I think we got a good understanding of it from professionals and potentially from parents…

“We see high levels of suicide in autism… Most autistic people live to about 37 [years] because the [suicide] rates were so high… There is a huge role that [stigma and myths] play in the high suicide rate. Autism is seen as this disorder that is doom and gloom and everybody just looks down upon it.”

She said one of the problems is people, especially with children, speaking around the child and not to the child as if the child does not understand when they actually do.

Oettlé says things can change when autistic people are accepted and supported and the support is extended to their families. “If we change our mindset and start accepting it and we start kind of looking at it as part of our natural human population and bringing people into our own circles, it will make a big difference.

For more information on autism, support groups and treatment, please visit www.aut2know.co.za

To reach Sadag, contact 0800-12-13-14 or the suicide hotline on 0800-567-567.

mashabas@sowetan.co.za