We invited Dina, a tall, elegant Special Education teacher, to our peer-supervision meeting where we psychologists- teachers must discuss clinical cases to ensure that we stay on track. We sat around a table loaded with delicious snacky food: sushi and finger-size sandwiches and sliced vegies waiting to be dipped. After about ten minutes of eating and small talk, I asked Dina about her work.
She smiled broadly. “I love teaching kids with autism. The rapport’s huge and every tiny step is a massive achievement.” Her eyes glowed with warm satisfaction. “I have five very needy children in my class. They’ve all been classified by the New South Wales Department of Education and Training as having a Severe Intellectual Disability. We call them ‘IS’ – Intellectually Severe.”
Unstacking the stats
According to the Australian Bureau of Statistics, about 2% of girls and 3% of boys between the ages 5 and 14 years old fall into this category. Yet, worldwide, current figures suggest that 1.5% of children are on the autism spectrum.
While words like ‘epidemic’ are probably sensationalist, the diagnosis rates are much higher now than they’ve ever been. This is primarily because the diagnostic playing field has expanded with each successive edition of the DSM (The Diagnostic and Statistical Manuel of Mental Disorders). In other words, the criteria for a diagnosis keep broadening, so more and more kids are included in the category. It’s much easier to score the autism goal now than it did in the past, and that’s why the number of diagnoses has doubled this century.
The goalposts have to be wide because autism isn’t a distinct, cohesive entity. Instead, children with the diagnosis show a cluster of behaviours. They have social difficulties that include any or all aspects of communication and they also have very focused, often unusual, obsessive behaviours. But, when you look at the details, no two autistic kids are alike. That’s why autism is considered a spectrum of disorders. Children with autism are not even the same genetically, although it’s a heritable, biological problem. Because their behaviour isn’t specific, the thinking is that it’s better to have a more inclusive diagnostic framework so that children can get treatment. A narrower framework could exclude children in need.
Dina nods in agreement with my analysis. “That makes a lot of sense. The one thing that gets me is that people are obsessed with prevalence rates and causes that can’t be found. That’s fine, but we also need to just get on with it and develop good programmes so that the kids benefit. I mean, the nonsense about pollution and vaccines! What a waste of time!”
Her allusion to the most recent autism-vaccine debacle is well noted. It was spearheaded in the late 1990’s by a gastroenterologist, Andrew Wakefield, who maintained that the measles-mumps-rubella vaccine is responsible for brain poisoning that has in turn led to the escalation in autism rates. His dodgy claim has been panned by a good number of eminent scientists, but, like the flat-earth believers, the idea persists among some sectors of the community.
The good programmes to which Dina refers are designed to enable her students to develop life skills to the best of their potential. Typical of children in the severe category, all five of the kids in Dina’s classroom have extremely limited language and communication skills, and they’re all highly absorbed in their very narrow, repetitive interest or activity.
Take her eight-year-old student, Liam, for example. He has very little language and he’s obsessed with Thomas the Tank Engine toys. He can do some rudimentary maths, like sort shapes and match colours, but it takes a huge effort. His literacy skills amount to pointing and naming some of the characters in the picture books that he knows well. Dina reminds us that this is common. As with normal human development, Liam understands much more than he can say; receptive language is usually more advanced than expressive language. But, in contrast to normal development and typical of autism, every day is different for Liam. Sometimes he can identify one character and not another, and the next day, it’s the other way around. He’s come this far because he’ll do almost anything if the reward is to wear headphones. It’s his obsession. Many children with autism are hypersensitive to sensory stimulation, so life is easier for Liam when he locks out sounds in the environment.
Dina also describes Sam. He’s a repetitive, furious pacer. He makes her feel a little seasick as he bobs back and forth from one wall to the other. “Oh, yes, he loves to pace. Up and down, up and down. It also drives me crazy sometimes” she chortles. “This is how he self-soothes, because you know how anxious autistic kids are.”
“What triggers the anxiety?” Tammy interjects. “Autism!” Dina replies quickly, suggesting that because autistic children inhabit a different world, their triggers are often impossible to pin down. “Anyway, I let him pace, but only after he’s finished an activity in his IEP (individual education plan). Pacing is his reward. He keeps going until he’s exhausted. He also has echolalia, so he’ll repeat everything I say while he’s pacing, but with a deadpan expression. ” Dina shows us his serious face, chuckles and continues.
She describes five-year-old Jessica, a head-banging “shrieker”. Jessica’s not toilet-trained, and she’s attracted to faeces – her own and any other animals. “That’s autism for you. Universally, humans find excrement disgusting, but some of my kids are the opposite.”
Tammy stares at Dina with incredulity. She chooses her words carefully. “I love children, Dina. But, I don’t think I could do it. Your work’s way beyond my comfort zone. And, I don’t think I’m abnormal. But you? You not only do the work, but you also seem to really enjoy it.”
Passion and patience
“Well, you have to understand, I don’t enjoy cleaning the stuff off the wall either. But, my passion is in the relationship. I have a great relationship with the parents, and don’t believe the nonsense about autism tearing families apart; most of the families are well bonded. But more than that, it’s the trust, the confidence and the loyalty that develops between the children and me. Mainstream kids just don’t have that intensity with their teachers.”
To illustrate, she describes the defining moment with Jessica. The ‘miracle’ happened the second week in the term. She asked Jessica to sit on the mat with the other students. The first miracle: Jessica looked at Dina. Miracle 2: She stopped banging her head against the wall. Third: She stopped screaming. Fourth: She quietly sat on the mat. And then, miracle of all miracles: She took Dina’s hand and held it in hers! It was Jessica’s first affectionate gesture at school. “This is the trust,’’ says Dina, as she holds up and shakes her clenched fists to demonstrate.
We stare at Dina, silent, in awe. And, perhaps somewhat ashamed in our knowledge that we wouldn’t do what she does. “To quote the famous poet, Blake, Dina,” I chip in, “You really do see A world in a grain of sand, and A heaven in a wild flower.” Dina doesn’t respond. She’s so passionate about her work; she’s on a roll.
The ABC’s of ABA
“The mat activities are listed in Jessica’s IEP (Individual Education Plan). It says Jessica needs support with self-care, mobility and communication. It’s a broad brief. It includes learning basic survival skills like the names of the days of the week, and about the weather and temperature. And, you can see that I use ABA when and where I can, and that’s as good as it gets. To be honest, I tend to use more naturalistic developmental behavioural interventions. ”
ABA, Applied Behavior Analysis, is a highly structured, early intervention behavioural technique, pioneered in the U.S. by Ole Lovaas in the 1980’s. Ordinary life skills that we take for granted, like brushing teeth or toileting, are easy for most kids but they’re often completely overwhelming for children with autism. The programme’s strength is that in the child’s own environment, ABA trainers break down life skills into small, sequential, achievable components, and reward the children for achieving each one. With each approximation to a goal like teeth brushing, children get closer to leading a more independent life. On the other hand, the programme is highly intensive; most parents can’t afford the 40 hour/week payments. And, although it helps many children to develop a few life-skills, it doesn’t cure autism as was initially hoped. While the naturalistic interventions (for example, Pivotal Response Training) are founded on ABA principles, the teaching is embedded in a more natural context. Dina’s next description illustrates the process:
“So, to give you an example. I’ll say to the kids, Everybody look at me. If they oblige, my assistant and I smile and compliment them. Then I’ll say: Today is warm. Look outside. We wait until they look, and compliment them if they do. Today is nice and warm, so we wear T-shirts. I point to my T-shirt and I say: Point to your T-shirt. And we’ll say ‘well done’, and of course, smile with pride if they get it right. Then I’ll say: Who can say T-shirt? And whoever makes a sound or gets close gets another compliment. If one child doesn’t make a sound but continues to look at me or concentrate on the T-shirt, he or she’ll get a compliment as well. If they participate in a few slightly more and more complex exchanges on the same topic, they might get to go outside and enjoy the weather for a few minutes; another reward.”
While the lesson might seem implausibly mundane to us, Dina’s taught and modelled a variety of developmental skills in that one conversation: social interaction and language, cognition, play and motor development. Importantly, the kids have practised joint attention – when two people attend to the same object through pointing, gazing or verbal exchange. They’ve also practiced gesture and shared affect – sharing emotions; in this case, taking pleasure in the warm weather. They’ve imitated, used language, thought about cause and effect, and used fine-motor skills. All of these elements are foundational tools for social communication.
“To be honest, sometimes kids like Jessica’s are banging their heads and shrieking, or pacing, so they don’t hear a thing. Nor do they give a, uh .. a ……uhum about some of the stuff in the syllabus. But how would the education department know that?” she asks wryly.
Song for the unsung
After a moments’ silence, her smile morphs into a frown of evocative intensity. “You know, I’m really so lucky to have them.”
“And how lucky are they to have you, Dina!” Tammy responds, while we gaze at her with joint attention and joint affect: utter admiration.
Names, locales, people and incidents are have been fictitiously created by the author. Any resemblance to actual people, places or individuals is completely coincidental.