In a world where individuality is embraced, there are those who stand out from the crowd. Their uniqueness setting them apart from the mundane.
These people all have one thing in common, they are autistic and are no ordinary individuals. They are men and women who were born to see the world in a different way, adding a bit of creativity to the environment around them.
Today, April 2, has been earmarked as World Autism Awareness Day. As an internationally recognised day, World Autism Awareness Day brings individual autism organisations together, all around the world to aid in things like research, diagnoses, treatment, and acceptance for those affected by this autism.
What is autism?
Autism is a developmental disorder characterised by difficulties with social interaction and communication, and by restricted and repetitive behaviour. Autism is a highly variable, neurodevelopmental disorder, whose symptoms first appears during infancy or childhood, and generally follows a steady course without remission.
While people with autism may be severely impaired in some respects, they are by no means less than those who are classified as normal. In fact, people with autism are at times superior to others in certain things.
It is believed Albert Einstein, Leonardo da Vinci and even Sir Isaac Newton were all autistic, with autism allowing them to achieve phenomenal feats.
Newcastle is home to Guillermo Hand and his story resonates hope and desire to be accepted by those around him.
“Guillermo was a little over two-years-old when a paediatric psychiatrist finally put a name to what we’ve been experiencing with him. After the diagnosis, everything suddenly became crystal clear and we just hit the ground running. We weren’t emotional about it, we were just so glad that somebody could give the “differentness” we’ve experienced a name,” explains Guillermo’s mother, Adele.
She explains that through the diagnosis, she and her husband, Gideon, would be able to help him and make his life in this world a little easier, as they now know what he needs, and continue to learn his needs.
“It was wonderful. There’s no time to think about why him, poor him or poor me. It’s still the same child, he’s still your child!! You’ll just now finally be able to understand him and help him.”
While raising an autistic child is different from a child who does not have autism, Adele explains having an autistic child has several joys to it.
“You won’t hear the words “I love you” from his mouth, but the way he touches your cheek, says more than any words can ever say. I don’t want to create a misconception that everything is all moonshine and roses. It is hard and challenging on many levels, but the pureness of Guillermo, the speaking with absolutely no filter, then out of nowhere sudden bursts of uncontrollable laughter, his very dry sense of humour, the little noises he makes when he’s content, the way he leaves us absolutely flabbergasted with his deep, random thoughts, his extreme passion for trains and the Titanic and just the way he sees life, brings so much joy to us,” she emphasises.
Adele adds the fact that Guillermo and every other autistic person, get up every single morning, willing and ready to fight another day, despite everything that counts against them resonates their strength. “If that doesn’t give us hope, joy and inspiration, nothing will!” she exclaims.
While times have changed tremendously over the decades, Adele says there are still several misconceptions around autism.
“Many people think if you can’t see a disability, it’s simply not there. People think autism has a certain look, but there is no look. A “normal” looking “naughty, non-conforming” child, could in actual fact be autistic, who is overwhelmed by too many bright lights, too much noise, a new routine or even something as small as the chair he sits on every day, on the same spot, has been moved by literally 5cm,” she explains.
Furthermore, Adele says people often think autistic children are rude or arrogant. “But the fact is, social skills you and I are born with, they need to learn. Socially accepted behaviour needs to be taught to them; like you have to teach a child to read and write, it doesn’t come naturally.”
Adele says autistic children also have tremendous pressure on them.
“For instance in school, they have to learn how to read and write and on top of that, they must also learn how to read people’s body language, facial expressions and how to react in a socially acceptable manner when someone comes too close to them, because often, fight or flight mode kicks in.”
While autistic children have to learn behaviour others often take for granted, Adele reminds us that people can learn a lot from autistic people.
“Lying is a social skill, which autistic children are obviously not born with. They are brutally honest, and you know exactly where you stand with them. No pretending, no gossiping, no badmouthing, just pure honesty. I really think if the world can learn something, they should take that from autistic people.”
Carmyn Collett, Guillermo’s facilitator, explains that Guillermo is more than a mere child.
“He is one special young man who has crawled deep into my heart, and somewhere along our journey, he has become my teacher. Guillermo has taught me great things, like how to be supportive, how to be an advocate, a friend, a carer, a therapist and never to judge, to always listen and be patient and never to be afraid. Guillermo has changed my life in many ways and for this, I will always be grateful to him. Someone with Autism has taught me that love needs no words.”
Carmyn explains she first started as Guillermo’s facilitator when he was in Grade 1. “I am now grateful to say that I have the honour to work with him at home, as he does homeschooling now, where he is thriving. Homeschooling with Guillermo has taught me to move freely while we work and have lots of patience.”
Carmyn explains that through her experience, the biggest misconceptions people have about autism in her view is that people think a child who has difficulty communicating is of low intelligence and that a child’s meltdowns are intentional and manipulative.
“Autism is easily amongst the most misunderstood of all human conditions, and amongst the most misunderstood things about autism is the meltdowns. Meltdowns are not a disciplinary problem, an indication of bad parenting or of a misbehaved child. Meltdowns are not within the control of the child. Meltdowns are a result of overstimulation and are very common in people with autism. They are also easily confused with tantrums; meltdowns are the body’s way of getting rid of their frustrations. Remember people with autism have feelings too, so be sensitive and tolerant.”
Looking at his parents, Adele and Gideon, Carmyn says they are the real superheroes. “They are wonderful parents and Guillermo couldn’t have asked for any better. There are some days they don’t understand what he needs and get a little impatient, and there are many days that their hearts break to see how he struggles. But every single day, they are the proudest parents of this wonderful autistic boy and they listen to more than just words and they love him unconditionally,” Carmyn concludes.
Ansie Joubert of St Dominics Newcastle and Guillermo’s former Grade 2 teacher said she thoroughly enjoyed teaching Guillermo.
“It was a new ‘challenge’ that was, I have to admit, a bit daunting at the start, but ended up being one of the most precious experiences in my career as a teacher this far. Teaching Guillermo really humbled me, he would tell you exactly what he was thinking and if he didn’t like it you will know.”
She says that she sometimes thinks we need to be more like this, be more honest and open.
“He taught me to appreciate the small things in life and to celebrate things as they happen. I remember one day, I put up my ‘carnival bunting’ in my class to fit in with our theme. He walked in loudly exclaiming that it was his birthday, and he believed we were preparing for his party. Well, with his amazing mom, grandmother and the assistant’s help, we had a lovely class party that day, even though it was December and his birthday was still a far way off.”
Ansie explains she also enjoyed seeing the joy on Guillmero’s face, when he managed to get work done, doing his ‘happy dance’ around the class and seeing the excitement when interacting with his friends.
“And I have to say, after teaching him for a few months and gaining his trust, I got a side-hug every afternoon before home time. I miss those hugs now.”
As a teacher working with him, Ansie says she thinks one of the biggest misconceptions regarding autistic children is that people think they are ‘dumb’ or that they will not be able to do the work.
“This perception is very wrong, and Guillermo is proof of this. Yes, he learns differently, but he could tell me things in class that I said and did that I didn’t even remember. He could also do his work with accuracy when he wanted to do it. Another problem that I have seen, in SA and in England where I taught for a few years, is that people do not understand the autistic child. They think that they are just insolent, naughty and do not listen. These children are often pushed to the side or judged. I believe it is a misconception that we will have to work on to help change.”
Ansie explains autistic children often battle to voice their opinions, thoughts and feelings. “This does cause a lot of problems for these children. They can then ‘act out’ in order to be heard.”
As a teacher, why does Ansie believe it is important to expose children to mainstream schools?
“I believe there is a dual benefit in exposing the autistic child to a mainstream school. One benefit is for the autistic child, as these children are taught to interact with other children. They also learn with their peers, even though they do not always play or work with them, they still learn valuable skills in interaction, considering others and expectations.”
She adds that she believes the ones that learn even more are the rest of the class or school.
“Your ‘normal’ students learn how to interact with students and peers who are different from them. They learn to have compassion and to help. The life skills learned are skills that we as teachers and parents cannot teach our children. One day, I had an incident in my class, where a new boy asked what is wrong with Guillermo, one of the others in the class answered before Carmyn or I could. She innocently stated: “He is different, but he is one of us and we love him.”. That statement had me in tears, I realised we need to learn from children on caring for those around us. Since Guillermo started homeschooling, I have had a number of students, even some of the high school kids, asking where he is and how he is doing. He was, and I believe still is, a part of the St Dom’s family.”
With Guillermo as a student, Ansie says one of the biggest lessons she learned was that they had to be willing to adapt and learn how to follow occassionaly.
“Also, decide when to pick your battles. Somethings are worth starting a fight over, but it is not always necessary or worth it. Carmyn was/is an amazing lady who works very well with Guillermo. Working with her, seeing her love and care for him was and is heart-warming. Choosing our battles sometimes entailed doing a weeks’ worth of maths in an hour, as Guillermo wanted to do maths and other times, reading while sitting under the table, instead of fighting with him to sit on his chair. He did the work and learned, so I believe the timing and manner of doing it do not always matter, as long as learning takes place.”
Ansie says she also learned that there is still so much to learn.
“As teachers, we have to be willing to learn and find out more in order to help children with disabilities. Even though I am a remedial trained teacher, I still know so little, I am trying to learn more, doing research and finding ways to help learners not just with autism, but with other disabilities as well.”
Sifiso Ntombela, has been working with Guillermo’s family since 2012, says he has learned a lot from Guillermo.
“He has shown me how enjoy life. Guillermo plays differently from other children, has different interests and through this he has taught me to enjoy the moment.”
Furthermore, Sifiso says he has also learned a valuable lesson about love from Guillermo. “The more time you spend with him, you learn how he shows affection and care. Then there are his parents, who love him so much.”
However, while Guillermo has taught Sifiso the importance of enjoying life, Sifiso believes a lot more awareness around autism is needed.
“Before I started working with his family, I never knew what autism was. It was only after talking with his parents that I learned more and saw how differently he did things.”
Looking at awareness, Sifiso says that autism is not a disorder which many people are aware of in townships and rural areas.
“There are still some who believe that is linked to cultural or ancestral practices. This sees them trying to find another solution by taking a shortcut, instead of getting the necessary medical help.”
As a proud mother of an autistic child, Adele shares a heartfelt message with the community.
“These kids often have shells around them, to protect them from the overwhelming day to day confusion, rush and drama, a survival mechanism. The shell, in most cases, can come across as naughty or malicious. They find it hard to tell you what is bothering them, so they just get overwhelmed instead, and it comes out as naughty behaviour. But if you are lucky enough to break through that shell, you’ll be in absolute awe at what you find inside,” Adele says.
What does World Autism Day mean for Adele and her family?
“It’s a day we as a family look forward to every year. A day we’d like to go all out and bring awareness through souvenirs, pamphlets, balloons, a little talk and sing along at schools. It’s a day everyone around the world is made a little extra aware of all the wonderful autistic people in the world. The day is “light it up blue” and it is incredibly emotional to see all the different countries lighting up their different landmarks in blue. It’s a little different this year as we’re in lockdown, but luckily for technology, we can still reach everyone,” concludes Adele.
As we celebrate World Autism Day today, let us take a moment to think of those who have autism and remember that while they are born to stand out, they want to be accepted just as everyone else does.