A leading researcher in South Africa, based at the University of Cape Town, estimates that approximately 2% of the population is affected by Autism Spectrum Disorder (ASD), with children on the spectrum often experiencing difficulties expressing their feelings and communicating with others.
Deciphering what a child needs can be even more difficult with a child on the spectrum as a child with Autism is able to attend mainstream school but the severity of their specific case dictates the outcome as some neurodivergent kids excel in mainstream environments, while others thrive in specialised settings.
Adele, Gideon and Guillermo Hand say that there is a difference between raising awareness about Autism and accepting a child who is Autistic.
Guillermo, or “Gigi” as he is fondly known, has a great support system that his mother calls their “village”. These people have played important roles in Gigi’s life, helping him to cope with the unique way in which he views the world.
According to research, the South African education system is increasingly unable to meet the growing needs of children with ASD, causing a ripple effect in society. World Autism Day was celebrated on 2 April and is designated to honour those who are different but not less.
Adele Hand, Guillermo’s mother, spoke to the Newcastle Express to voice her concerns about children on the spectrum not being fully accepted into the mainstream education system and society in general.
Her journey to diagnosis began when Gigi was a baby.
“I always had a feeling that there was something different about Gigi .We were the first couple in our family to have a baby so we had nobody to compare his milestone development with but I always had this nagging suspicion that there was just something different,” said Adele.
She explained that he was a very active baby, who hardly slept, would cry a lot and would sometimes be “tense”.
By the time Gigi turned two years old, it was suggested to his parents to have his hearing tested as he was not responding to people and did not show any signs of speech development. However, he was not diagnosed as being hard of hearing or having any hearing impediments.
The family then took him to a paediatric psychiatrist and Gigi was diagnosed with having Autism at the age of two. Adele stressed the point that early intervention is key to managing ASD effectively.
“The sooner these children get the help they need, the better. We were also there, on the fence, debating if we should put our son on medication but then we realised that if we do not, we are actually causing harm to him.
“From my experience, sometimes doctors say that the child may be too young for medication and waiting would be an option but as a mother, I know the thought of giving your young child medication may seem like a bad thing but if a specialist prescribes it for a reason – and this may help them to experience and live their life a little better – I would say give them that opportunity,” she said.
Adele said that not many people accept Autistic children and it is much easier to label them. She said that there is a big difference between raising awareness and encouraging acceptance.
“There is a lovely quote which says: ‘Autists are the ultimate square pegs and the problem with pounding a square peg into a round hole is not that the hammering is hard but rather that you are destroying the peg. That is the daily struggle of an autistic child.’
“Acceptance, to me, is to be able to see a child with Autism and to not judge them by their actions or abilities. Give them the accommodations that they need. Children with Autism will grow into adults with Autism, it is not something that is outgrown.
“If you are in a class with an Autistic child, you are also likely to have one as a colleague and that should not come as a shock; the more invested a person can be in an Autistic child or adult, the more able they will be seen as rather than disabled. There are also many famous people who have this condition and it is time that awareness needs to be changed to acceptance,” she said.
Adele said that without their little “village” of people who have played vital roles in Gigi’s life by helping him to adapt, the journey would have been more difficult.
That includes Adele’s parents, Kobus and Nelia Eksteen, as well as her in-laws, William and Trix, Camryn Barnard, Lynelle Breedt and Shanelle Dorasamy.
Gigi has had a positive impact on the lives of these people and Barnard said that although she and Gigi do not have a typical communication style, they do share a special one.
“It makes sense to us and we interact so well. Gigi has shown me what true love is. It’s not about how many times a day we say those three words or how many hugs and kisses you receive, it’s knowing that no matter what, he can always put a smile on your face with small gestures, wanting you close by him, building model ships together or simply playing with trains.
“It is the honest feedback he makes well known to you. Who would ever be so privileged to be able to do all of this with such an amazing boy! Gigi has touched my heart so much while I was trying to facilitate and teach him that he actually helped me grow,” said Barnard.
Like Gigi, many children struggle to be accepted into society, whether they have Autism, Attention-deficit / hyperactivity disorder (ADHD), Oppositional defiant disorder (ODD) or any other neurodivergent challenges.
The main focus of this family and the clear message that they would like to get across is to stop labelling these children as naughty or abnormal, but rather accept that the way in which they see the world and process information is different.
Respect that they do not like certain things and also feel vulnerable in certain situations. Children not wanting to interact with them is also hurtful and teaching the younger generation about acceptance is key.
Many adults with Autism can experience high intelligence, strong memory, an ability to think “outside the box” and a strong grasp in particular areas of knowledge. However, getting a diagnosis as an adult can be a long, difficult and expensive process. For this reason, parents are encouraged to get their kids screened as soon as possible if they suspect learning disorders or neurodivergence.
