Extraordinary: Parenting a child with autism
Posted on 11 April 2019
“Having your child diagnosed with Autism isn’t the end. It’s the beginning of a somewhat different and special chapter.”
When Claudette De Witt gave birth to her daughter, Charlotte, she had a few things to be concerned about. First, Claudette’s gynae picked up that she had had a viral infection in her uterus, and together they decided it would be safest for her to give birth via Caesarean section. Then, the baby was born early, at 32 weeks. Prematurity and infection are both known risk factors for a range of developmental disorders, but another big one was her age: Claudette was 40 years old at the time. Charlotte is Claudette’s second child, and as an experienced sales representative for medical brands, with a background in psychology, she knew the warning signs before they even appeared.
“A couple of things concerned me right from the moment we got home from hospital,” Claudette says. “Certain natural reflexes – when you stand a baby on your lap, and they push back at you with their little legs: she didn’t do that. She didn’t react when I pulled a face. And she fixated on her dummy so much that her dad used to joke that she was going to become a dummy engineer.”
Of all the signs, the crying was the worst, says Claudette. “If I tried to pacify her, she’d push away from me. I couldn’t hold her, I couldn’t give her a hug or rock her.” Doctors initially thought the baby was battling reflux, but treatment made no discernible difference, Claudette says. By the time Charlotte was 18 months old, it had become clear that something was wrong.
Dr Griessel had worked as a paediatrician at the hospital for 10 years, and is currently head of developmental paediatrics at the University of the Free State. Claudette says he had questions she couldn’t answer.
“Kids with brain development issues will show certain signs – such as repeating words and sentences, for example,” she says, “but Charlotte wasn’t talking, so I didn’t know if that was a symptom. They also have certain behavioural tics when they move, but she wasn’t walking yet. So we just didn’t know.”
Dr Griessel suggested that Claudette enrol her daughter in a preschool designed to cater for special children. Later, at a follow-up screening, Claudette had a lot more answers. “The words, the walking – all the signs were there. But the biggest one was her stimming.”
Stimming refers to self-stimulatory behaviour, often called stereotypic behaviour. It involves repeating certain gestures – such as flapping hands, rocking the upper body, spinning in circles or holding one’s breath – and it is a classic sign of autism spectrum disorder.
Charlotte was diagnosed with autism at the age of 3. “The best way to describe autism is as a developmental condition of the brain, which presents early in life,” says Dr Griessel. On the Autism Diagnostic Observation Schedule (ADOS), Charlotte’s symptoms would categorise her condition as moderate. This common test consists of a 30- to 45-minute, play-based assessment period, where a doctor will give a child a number of interactive activities, and this is only a part of the full diagnosis, says Dr Griessel.
“Autism is a spectrum that blends, on the lower side, into the neurotypical population. All children with this condition need support. How much support they need, and who they need around them to provide it, is built into the diagnosis. So while it is useful to classify a child with low, moderate or severe autism, that does not mean they will suit or fit a standard treatment plan. That is just the beginning of the journey.”
As with most incurable conditions, doctors look for optimal outcomes. In this case, that means management, says Dr Griessel. “It helps to identify these children early, so we can introduce interventions, including courses of speech or occupational therapy, and sometimes, adding rounds of medication to help control co-morbidities, as early as possible.”
Identifying symptomatic children can be a challenge. Charlotte’s seemingly late diagnosis, at the age of 3, is actually about par in South Africa, says Dr Griessel. “To the trained eye, autism symptoms should be picked up between 12 and 18 months. But parents will often only bring their kids in as a last resort. They’ll give excuses for their children’s slow development, such as learning to speak late, for example. They’ll tell me, ‘Boys usually talk later than girls.’ This is not true. They may talk less but they don’t talk later.”
“That gut feeling kept nagging me,” says Claudette. “Call it a mother’s instinct. For three years, it built up, until we were worried she was maybe mentally disabled in some way. So as much as it was scary or difficult to hear the word autism, I was relieved as well: now we have a diagnosis, we can manage this. We can understand her and we can help her.”
Dr Griessel says autism brings unique challenges. “Autism affects how the connections and pathways develop and form within the brain, and leads to a brain that doesn’t understand language and emotions very well. Autistic children find these strange and frightening, and they withdraw into the world of routine and physical things. Things, you see, are predictable.”
Claudette says it is as if Charlotte experiences everything around her at the same intensity. “It could be people talking, traffic noise, birds singing outside – all the input from the environment around her, all of it is happening at the same level, so to speak,” says Claudette. “Going to a mall, or a group of kids laughing in the street, or dogs barking next door … these are ordinary things you and I wouldn’t notice. But for Charlotte, they could spark a meltdown.”
The family will be outside, playing together, for example, and a dog will bark at a stranger down the street. Charlotte will run inside, screaming. To give an idea of how this affects daily family life, she won’t stop crying until Claudette has closed all the windows and doors, and sat with her for as long as it takes to calm her down.
Every parent knows what a tantrum looks like. A meltdown, Claudette says, is very different. “When a child has a tantrum, they will look at you the whole time. They are trying to provoke or gauge a reaction. But with a meltdown, they won’t even see you. They lose sense of what’s real. They can hurt you, they can hurt themselves. For a parent to see this, it is extremely upsetting.”
Charlotte’s hearing is incredibly sensitive. When all the noise gets too much, she will flap her arms repetitively, to try to restore some control and to relax her mind. She also has her strings. “Many autistic kids have something they play with or carry around with them to help calm them down,” says Claudette. “Charlotte’s strings help her feel safe.”
Claudette has formed a support group, known as Free State Autism Support 4 Parents, which is now a registered NPO. “When Charlotte was diagnosed, we had very little emotional support,” she says. “Our community just wasn’t ready for this. They hadn’t seen it before, they didn’t know how to respond, or how to help.”
Claudette says it can also be difficult for the parents of special children themselves to accept that their child may be special or different, as it brings with it a new reality: raising a child with autism is different in many, completely unpredictable ways. “We used to be social,” she says. “We’d go out to braais, we would socialise with friends. All of that stopped when Charlotte was born.”
Family life with an autistic child involves some recalibrating. “We would try take her out, to family gatherings, and I’d realise very soon that I would have to take her home. People would say I didn’t want to see them and I was using the baby as an excuse. But I knew my child and I could see what she needs. She is my priority.”
Charlotte has taken more than just the family on a major learning curve. “There are a lot of groups and bodies out there creating awareness about autism and how it affects families,” she says, “but in the course of everyday life – when you’re in the mall, or walking in the park – you see people staring and whispering. A lot of people know the condition exists, but they don’t see it every day, so it’s as though they forget that autistic people are everywhere among us.”
She says when Charlotte was diagnosed, there was no support group in the Free State area to turn to. “One mom had started a group, but her child had grown up, and the group dissipated. That’s why I’ve registered my autism awareness group as an NPO, so that it lives on in the community even one day when I don’t need it anymore. It was to say to parents and families of autistic kids, ‘It’s going to be okay’. You’d be amazed what it can do for someone, to know they’re not alone facing this challenge.”
Claudette’s group started small but has expanded rapidly. “I started o thinking I’d have a once-a-month get-together, and in the beginning, I had one mom who joined me. That was February 2018. Now it’s a year later, and we have 38 people who have joined.” The group holds functions to raise funds and awareness, and pulls in local experts – including paediatricians and occupational therapists – to give public talks on the condition.
She tells the story of a couple whose child had just been diagnosed with autism. “The dad was completely in denial about it. He just couldn’t face the idea of having a child with special needs. He was frustrated and impatient. So I spoke to them and tried to reassure them, that my child also has the same signs and symptoms, and you can adjust and have a relatively normal family life. The mom called me later and told me how the boy had had another meltdown, and his dad sat with him for an hour, just rocking back and forth together with him. It’s that sense of calm, and acceptance, that we try to encourage in people.”
“This is a wonderful thing,” says Dr Griessel. “The work she does with this group is very important. It’s crucial to know, when you now see that your child will not develop typically, that you are not alone.” This is especially crucial in a country where it is di- cult to put a number on either children or adults living with autism – a confirmed diagnosis may make parents feel shut o from their communities.
Autism is also more common than we think. “We don’t have very up-to-date figures, but there is no reason to think that the statistics here would differ from the rest of the world,” says Dr Griessel. “In most countries, studies show autism occurs in at most one in 50 children. Here, there is a high chance that it is often under- or misdiagnosed, especially in rural areas where parents lack access to this kind of developmental expertise.”
How Charlotte’s autism developed may remain a mystery. “We know autism is genetically determined,” says Dr Griessel. “But we don’t know the exact mechanism of how it develops. If you have identical twins who share the relevant genes, the chances of them sharing the condition as well is only about 70%. So this tells you that while genetics are important, there are other factors involved as well.”
Dr Griessel says doctors will often never be able to pinpoint the exact risk factor that leads to a specific child’s autism. This means Charlotte’s early birth and her mom’s age may have played a role, and may not. “There are even studies that show some environmental risk factors are unavoidable,” he says. “Pollution in the air, chemicals in the home – a wide variety of things can impede brain development.”
The way forward is also elusive. “With time and effective management, most children get better. For reasons we still don’t understand, some get worse. But there is always hope. With the right support and guidance, a small percentage develop and recover enough to lose the diagnosis completely.”
If Claudette is motivated to build a culture of awareness and support around autism in SA, it is because she has learnt to accept her child for who she is. “Cognitively, Charlotte is fine,” says Claudette. “She has a normal IQ, for example. But her gross motor skills and verbal skills are years behind. She can’t jump yet. And she has maybe four words in a sentence, at this stage. She is five years old.”
Today, Charlotte attends a private school, Blaize Academy, an independent preparatory school for special children. These kids experience learning difficulties that prevent them from achieving success in a mainstream school environment. “Those teachers perform miracles,” says Claudette. “They are educated in educating autistic children, and they have a speech therapist and an occupational therapist on staff. They take a team approach to helping each child develop, and it works incredibly well. She has developed remarkably.”
Charlotte is doing what she can to spread a message of acceptance. “Everyone who meets her, loves her,” says Claudette. “She helps them see things, even themselves, in a different light.”
Claudette says Charlotte’s older brother has adapted to his sister’s needs quickly, and with empathy. “He has taught me a lot, too,” she says. “He showed me how, when Charlotte is having a meltdown, it calms her down very effectively if you count to ten, over and over. So we have learnt a lot, about how to be as a family. We look at things differently.”
Having her child diagnosed with autism has taught Claudette never to put anyone in a box. “We have this idea that if things work out the way we want them to, that’s success,” she says. “If they don’t we’ve failed. I now know that’s not true. There are all kinds of families, all kinds of people. Charlotte is different. That’s not bad. She doesn’t have less than what other children have. We don’t have less than what any other family has. She just sees the world, experiences things, in a different way.”
Charlotte is a loving child with a wonderful sense of humour, says her mom. “There is a misperception out there that children with autism don’t make eye contact, but she does – a lot. She loves being outside. She’ll play outside, in the water, in the sand, all day if you let her. And like any other girl, she loves dolls. She washes their hair and brushes it, all day. Who knows, maybe one day she’ll become a hairdresser.”
Autism spectrum disorder presents differently in different people. The condition brings a wide variety of challenges, says Dr Griessel, and children with the condition grow into adults with a range of talents.
CHILDREN WITH AUTISM TYPICALLY STRUGGLE TO:
▶ Have back-and-forth conversations
▶ Share interests and emotions
▶ Maintain normal social interactions
▶ Engage in non-verbal communication, such as body language and facial expressions
▶ Develop relationships, including imaginative play and making friends
SOME SIGNS OF AUTISM INCLUDE:
▶ Repeating words and phrases, known as echolalia
▶ Stereotyped movements, such as flapping hands, toe walking
▶ An inflexible adherence to routines, patterns or behaviour
▶ General distress when confronted with change
▶ Sensory hyper- or hypo-reactivity to sounds and textures
▶ Restricted or fixated interests, such as playing with only one toy
WORDS: THOMAS OKES
PHOTOGRAPHS: MEYER & RENE