The journey of Autism Eswatini began and was inspired by a very special young boy named Nick also known as Kuhle, fathered and mothered by Tryphinah & Geoffrey Mvubu. Nick was born on the 16th of December 2003 and has only one sibling who is his older sister, Lindokuhle.Nick was diagnosed with Autism Spectrum Disorder at the age of 4. Since birth, Nick had insomnia, and could only sleep 15 to 30 minutes at most until the age of 7 when he started sleeping for an hour.
Nick could not formulate his own speech, he was hyperactive, violent also prone to straying, and had self-injurious behaviors. He liked breaking bottles and putting them in his mouth, same with needles, his family had to learn how to negotiate these hazardous materials out of his mouth without hurting him. He also did not have any sense of danger and hence needed close supervision. He could also cry for hours and yet he didn’t want to be cuddled. Nick had very limited preferences in food. For the first 4 years of his life, he only ate pap and milk throughout the day. Nick exhibited many other characteristics of ASD very early some of which were seen from birth but could not be ascertained at the time due to lack of awareness.
Due to the misunderstanding of the condition, Nick was often misunderstood as a spoiled brat. Some parents would even try to discipline him in the presence of his mother since she was considered failing to be a good parent. Being a church person, it was never easy to be in church with him.” For many years, we would spend most of the time outside until he was allowed to sit on the drums.” Many times his family had to whisk him out of church due to his meltdowns.
Nick could not start his early childhood education at the age of three due to the above-mentioned challenges. When he eventually did at the age of 4, his pre-school teachers had challenges teaching him and eventually issued an instruction to take him for assessment saying, “he was a special child,” but at that time his parents could not understand that language since it was never explained.
Upon arrival for assessment, Nick was again described as, ‘a special child’. He was then diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). His parents then took him to the Psychiatric Hospital in the country where he was put on Ritalin to which he did not respond. The psychiatrist increased the dosage from half to two & a half within a space of three months. When there were still no changes, he was made to discontinue, remember that Nick was only 4 at this time. When Ritalin failed that was when his parents heard the word, ‘Autism,’ for the first time from an Autism expert who had worked with children with ASD in the US. He then diagnosed Nick with Asperger’s Syndrome. Nick started therapy with Occupational, Language, and Speech Therapists at Mbabane Government Hospital. His parents did not miss his appointments and always did as advised. As the years go by, Nick’s parents saw the difference which was very positive.
Nick’s Positive Outcomes
Nick could now see his mother in a picture and also could recognize her in person, the same with all the other family members, “but there were times when you could not be sure if he knew you” said his mother. He started formulating his own speech when he was 9 and his coordination improved drastically which his therapists attributed to the drums he practiced with a passion from the age of two. He used kitchen utensils such as cake tins, bottles, pots, sticks and cutlery, and at times stones. Where there was a gathering and singing he would do everything in his power to play his innovative drums. At school, he would always buy two similar pencils just to play drums during the school assembly. One day he was caught playing drums on the buttocks of one of his peers. He even learned to play drums in the air even with his teeth when there were no sticks nor anything like a drum on sight, at times he could use even stones. Today he is one of the best at playing drums. He also taught other boys who are now playing in their churches using his innovative drums. He is aspiring to teach other children with ASD.
Today, Nick is the drum player at his father’s church, Dominion Citadel International. His second drum set is a ‘Ludwig Drum’ from the UK, which was bought by a USA musician, ‘Steve Wolf’ organized by the Senior Vice President of Autism Speaks from the USA, Dr. Andy Shih after Nick had written him & Dr. Pamela Dixon a proposal which was just a paragraph was long requesting for drums. He sneaked it into his mother’s purse and later begged her to give the proposal to Dr. Andy & Pamela Dixon in an ALN meeting his mother had attended at Autism Speaks’ invite in Ethiopia. Nick had an encounter with the Autism Speaks team when they visited Eswatini in 2019. Dr, Andy Shih, quickly responded to Nick’sproposal that very night and started making contacts. Nick’s new Ludwig drum eventually arrived in April 2021 due to delays caused by the covid 19 pandemic. Nick was very excited and is currently preparing for his first cover. His family is at peace that he has already found his career which even other partners beyond Eswatini have started supporting.
Nick’s social skills and problem-solving skills have improved a lot. He has been able to make many heroes and friends through his skill in playing drums, he is very much sociable and charming. Surprisingly his sister thinks that Nick has been able to make more friends than her. Nick is able to solve and negotiate his way out of trouble. One time looking for his father, he got into a supermarket with his packet of nicknacks and forgot to put them where luggage is put. Upon remembering, he realized that there will be trouble. Out of fear, he then tried to hide them under his jacket, unfortunately, the security saw him and he was caught. They were sure he had stolen the snacks and they didn’t know about his condition either, coupled with a lack of awareness about ASD. Whilst Nick was trying to explain himself in fear, they thought he is shouting at them instead of being apologetic, in anger they took his packet, fortunately, they did not talk about arresting him. Upon going out he went to the shop where he had bought the snacks and requested his slip. They gave him and he took it to the supermarket. He then was given his nicknacks back, the problem was solved. Surprisingly, he did not tell any of his family members about this ordeal nor did he show signs of distress. His mom heard the story from one working in the Supermarket.
In one of Autism Eswatini’s events, November 2020 Nick played his drums as usual. The Deputy Prime Minister, gave him some money and other fans did the same and he eventually had E600 ($40). On his own, he went to one of the reputable bicycle shops and made a lay-bye for a bicycle. For fear of getting injured his family decided against helping him to finish the payment, and the 3 months elapsed. His family was sure he had lost it, to their surprise, 4 months later he came home riding his new bicycle. When asked how he got it, he said he went straight to the shop owner paid the difference and he got it. This means he was able to negotiate with the shop owner despite the expired dates of his lay-bye. He is still using it, and there have been no accidents or injuries so far. Nick had many other incidents that he was able to solve on his own.
Nick’s education has not been an easy one. His parents had to negotiate and educate each teacher about his condition. In his first school, he was expelled in his second term and his parents were refunded their money back in full. This was a very traumatic and devastating experience for his family. They were shattered, they could see that their child’s condition is serious but still could not understand it and no explanation was coming forth. They then had to go and negotiate where his sister was for her Early Childhood Education. He was accepted, was there till age 7, and had to start grade 1 in a new school, again his parents had to negotiate another school and to their surprise, he did well until grade 4. The challenges started again after he fought another boy who had bullied him since grade 1, he had to change schools again. Some teachers upon hearing his condition would not even try to teach him but would only concern themselves with making sure that he is socially well and not bullied. This made him a socialite and kept changing schools until he complained. His parents also noted that all the teachers who gave him an opportunity agreed that Nick did well when he was taught one on one.
Nick is now able to sit still and sleep for many hours. He has become very much affectionate yet he did not want to be touched nor cuddled when he was younger. His food preferences really have improved. He likes rice and stew but, the rice must be plain white and the stew red, he can wake up early just to dish for himself if there were leftovers. He also likes Kentucky Fried Chicken and he goes to buy it on his own but should be, ‘center breasts,’ they now know him. He also likes dumplings, fried fish, nicknacks, and white PS. His bread still cannot be pasted or can be toasted with margarine only. He is now able to eat apples and bananas. Remember Nick is from where he could only eat milk and pap only throughout the day literally for 4 years. Hence, the increase in his food preferences is a great achievement and he can now be negotiated into trying certain foods though he is more concerned with his weight. He can wash his own clothes and dress properly though he still needs to be reminded of a few things. Nick loves his sister very much, when she was away at university, all he needed to know was when she would be leaving home and the month of her return. Around that time, he will begin asking about her. Generally, Nick can now cope with many changes and can be easily negotiated. Hence sometimes his family would temper with a routine just to see his reaction. Nick has learned how to calm himself whenever he went into sensory overload though he is not aware of it. He has also learned to manage his disappointments well, it’s no longer easy to see nor does he talk about it, but when you ask him he will tell you how he felt about a certain scenario especially when he was promised to play drums and he did not. These positive developments have been attributed to the therapy he did for many years without fail.
Nick is also passionate about saving his own money to buy his needs mainly those that go with drums. He is now also able to buy his own clothes in the correct sizes without help and he enjoys going to town on his own. Nick can now drive the family car from the parking lot to the house and is eager to eventually get his license, but one thing he doesn’t understand is that he is supposed to study the road signs, according to him, road signs are on the road, there is no need to study them. His thinking shows, how literal he can be. His family is struggling to address sexual reproductive health issues due to his concrete thinking and inability to understand some words. On his birthday, he asked his mother this question, “When did I come out of the stomach”? Very literal and he has many serious life questions.
Nick is now very concerned about his looks. He has become passionate about his exercise and soccer hence the concern about his eating habits. But all these does not come between him and his drums. He likes gadgets and the Internet as they help him see new drum kits, players, other musicians, soapies, etc; of late he says he wants to be an Actor, funny enough, he says he wants to act being a bully….He also uses it for his exercise as he opens his cell phone and does as he sees. This is exactly how he learned drum playing. He is getting more knowledgeable about music. He learns new styles from them which he immediately tries out in church and he is able to explain how it is done.
Nick is now aware of most of his challenges though he sometimes fights assistance unless well negotiated. He does not fully understand that he has a condition hence his fight to help and questions why is he being helped when his sister is not hence has a lot of anxiety and can be depressed sometimes.
The family has really come a long way with Nick. He has become an inspiration both to his therapists and the entire autism community. He is now classified among highly functional individuals with ASD, he has good speech both in his first and second language. He still struggles though with abstract concepts, like words with double meaning, humor, idioms, social cues, and self-talk which he is aware of as already stated and has become independent in many things. He is also very supportive. If he hears that his family wants to do what needs money he contributes easily. He can borrow you his money but rest assured he will ask for it back.
Challenges
The formation of Autism Eswatini
With this first-hand experience, Nick’s mother, Tryphinah Mvubu, saw the need to start Autism Eswatini with a holistic approach to addressing Autism issues for maximum impact as ASD needs a multi-disciplinary approach and has successfully pioneered Autism issues in Eswatini to a point where the government, as well as the development partners, are taking notice.
From her own personal experience, she has noted that, due to the high stigma and discrimination, some parents opt to hide their children from ridicule and they refuse to open up about this challenge risking better outcomes for their children and is perpetually worried by the hostile environment towards individuals with ASD and their families. She is also concerned that this is not only happening in Eswatini only but in most African countries hence, Autism Eswatini continues to, “Strengthen Support Systems of Persons with Autism Spectrum Disorders and their families beyond Eswatini through many different partnerships.