Know the autism red flags

April is World Autism Awareness month. Despite this being the ninth commemoration, precious few people are aware of the condition. Sadly, some of them are actually parents living with affected children but have no idea why their children display certain challenging behaviours. Autism comes with poor communication and social skills, behavioural problems, and cognitive disabilities, all in varying degrees since it is a spectrum disorder. Think of it as tape measure; the level of severity could run anywhere from 1 to 100, so no two autistic people will exhibit exactly the same challenges. Some will struggle to speak while very sharp with certain tasks considered difficult; others will speak very well while failing to perform simple tasks like doing their buttons or tying their shoe laces.

When a child does not develop in the expected way in terms of speech, motor skills, and other milestones, people always find way to explain the challenges away. This happened to Tenkhosi*, a single mother from Mbabane. When her son, Siviwe*, was 18-months-old, he started babbling.  At 2 years he could rote-count and identify numbers. That suddenly stopped, and Tenkhosi hardly noticed it.

The first time the red flag went up was when the boy’s father took him to his home for the weekend. On his return, he stated that his relatives had said the child was not well. Tenkhosi did not pay much attention to it.  Apparently his father’s relatives had been excited to see him and were fussing over him, but he seemed to be in his own bubble and never paid any attention to them in an unusual way.

Eventually Siviwe’s behaviour deteriorated. He started breaking things and making loud noises, and people just dismissed it with, “Oh that one is a real Simelane! Simelanes like breaking and pushing.”  At the age of 4, he got more aggressive, beating his mother all the time. He would only sleep for about three hours and wake up to scream. He even lifted the TV and broke it. Tenkhosi was terrified of her little boy. Some people advised her to go to Maputo and get coconuts to cure him of his speech problems.  Others advised her to beat him up. She did to no avail. “His father wanted him to enrol at the school for the deaf, and I was against the idea because I could tell he was not deaf. He made so much noise at night and neighbours were beginning to complain,” said Tenkhosi.

The strain of looking after Siviwe took its toll on Tenkhosi, until she contemplated killing herself and her son. “I thought of weevil tablets but could not do that to us because I’d seen a relative die an agonising death after taking it,” she said. She then settled on gas. In no time, there was a knock on the door. It was her neighbour who said she had forgotten her keys at her house and had come back for them. “She didn’t even tell me why she came to my house, because as soon as I opened the door, the smell of gas hit her. She said, “Hey, Make the gas is smelling. You can’t have this around your child. He might play with the gas and kill you!” With that, the neighbour took the gas cylinder with her, and the suicide plot was foiled.

“I did not know anything about autism. I just thought my boy was slow and violent. I had no idea where his anger came from. I couldn’t take him to school because I was afraid he would get lost. I even took him to a specialist to check if he had a brain tumour causing the strange behaviour. My first time to hear the term was when the Occupational Therapist said he must have it, and referred me to a paediatrician. Siviwe was finally diagnosed with autism at the age of 5.

Many children are leading less than ideal lives because they never got diagnosed and cannot get the necessary help, such as therapy or medication, to improve their lives. Early treatment has been proven to improve outcomes, often dramatically. Experts say early intensive behavioural intervention improves learning, communication and social skills in young children with autism. Unfortunately most parents, like Tenkhosi, have never heard of autism and just don’t understand what happened to their child.

Siviwe still has occasions when he has meltdowns. “Sometimes I just beg him on my knees, Siviwe, please don’t kill your mom because no one is going to take care of you when I’m dead, but of course he doesn’t understand all that,” said Tenkhosi. “I rarely have conversations with him as other parents do with their kids. All I do is shout, “Stop that! Do this! Don’t do that!” My life just stopped after I had that boy. I’m always looking after him, afraid that he will get lost. I don’t have much support from anyone. This is my problem alone.”

Tenkhosi’s biggest fear is for her son to grow older while remaining non-verbal, and her own aging. “Now I have to control him all the time. What if I can’t do it anymore and it’s just me and him?”

The following "red flags" may indicate your child is at risk for an autism spectrum disorder. If your child exhibits any of the following, please don’t delay in asking your pediatrician or family doctor for an evaluation:

• No big smiles or other warm, joyful expressions by six months or thereafter
• No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
• No babbling by 12 months
• No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
• No words by 16 months
• No meaningful, two-word phrases (not including imitating or repeating) by 24 months
• Lack of response to name
• Repetitive movements with objects
• Repetitive movements or posturing of body, arms, hands, or fingers
• Any loss of speech, babbling or social skills at any age

*Names changed on request

Additional information from firstsigns.org and Autism Speaks

Ignorance on Down syndrome breeds discrimination

It is encouraging when more and more mothers come forward to share their stories on raising children with disabilities. I believe this goes a long way in raising awareness in the community. When people understand what affected families go through, they might be more empathetic and less liable to be insensitive.

Mandisa* gave birth to a child that appeared typical, apart from her low birth weight of 2.5kg.  Lungile*, who is now 12, didn’t gain much weight and Mandisa took her to several doctors to find out what could have been the cause.  All the tests done never picked up anything abnormal.  She was able to reach all the milestones, like sitting, crawling, standing and eventually walking by 18 months.  The speech was what took long to come as she was only able to talk at 6 years old.  Although this was not her first child, she unfortunately did not see any tell-tale signs of Down syndrome.  When Lungile was about a year old, she had to see an ENT (Ear, Nose and Throat) specialist who asked Mandisa if she was aware that her child had Down syndrome.  He went on to explain everything regarding the condition before referring her to a doctor in South Africa. That doctor referred her for occupational therapy, from where she got another referral for speech therapy.

“What was sad was that many people, including my relatives, were aware of my child’s condition, but nobody wanted to break the news to me.  At first I asked God why me especially because I am one person who loves people with disabilities.  Later on I realised that God gave me this child because he saw my heart and knew that I would love her,” said Mandisa. She added that caring for Lungile has not been an easy journey, emotionally, financially, socially and spiritually, but credited God and her family’s support in making it bearable. Lungile  gets support for her older siblings, teachers, school mates as well as Sunday School Teachers at her local church, who accommodate for who she is. There are, nevertheless, still many challenges that Mandisa and other parents like her encounter as they raise children with Down syndrome.

Mandisa describes Lungile as a bubbly child who is extremely kind and loving, but her distinctive Down syndrome features usually draw stares and not much love from people. She says the discrimination in society is particularly heart-breaking because it is evident in children who refuse to play with Lungile when she reaches out to them. She just loves taking care of people, including her classmates who she usually assists with walking to class at drop-off time and packing their bags before home time. The discrimination she encounters is a wet blanket on her sunny personality and she has since stopped trying to engage other kids, choosing instead to watch television and play computer games.

Mandisa believes discrimination primarily emanates from people not understanding Down syndrome, and equating it to madness.  There needs to be more advocacy for Down syndrome in schools, churches and communities because people don’t understand it yet; most parent end up hiding their children to protect them from the bad treatment they receive from society, she says.

“People have said and done of lot of unpleasant things to my daughter but the most outstanding was when a doctor said to me, ‘Take out your retarded child’.  Lungile was sick, I don’t even recall if he ever said anything concerning the sickness.  Another instance was when she tried to touch a laptop of one of my relatives and he immediately took it away as though she had leprosy which was contagious,” said Mandisa.

To top all the man-made challenges, parents whose children have the condition have to contend health problems that usually accompany it. When Lungile was young, there were frequent visits to doctors for various ailments including skin problems.  Thankfully, she outgrew most of the ailments but is still receiving treatment for the persistent skin problems by a doctor outside the borders of the country. The shortage or non-availability of specialist doctors locally is a big thorn in the flesh for most parents because they cannot always access the doctors whenever they want to, and seeing the doctors takes a huge chunk out of the family coffers.

Mandisa’s wish is for Lungile to be fully independent and live a fulfilling life like everyone else. “My worst fear is what would happen to her when I’m no more.  The society we live in is not kind to people with challenges, especially females. Bad people see an object to be sexually abused, ridiculed, discriminated, and all sort of negativity which leads to low-self-esteem of the individual,” said Mandisa. She also worries that as Lungile approaches puberty, would she be able to manage her reproductive health issues such as menstruation and being taken advantage of.

Mandisa urged parents whose children have Down syndrome in the country to come together in order to share ideas on how to overcome specific situations. She also encouraged society to educate itself about what Down syndrome is and then be more accommodative towards people with this condition.  “I also implore the Ministry of Education to consider special schools for people with special needs.  If it is inclusive education, they should fully cater for the children with special needs from pre-school to vocational training,” she said.

Lungile is at a private school, but when her time there is up, her mother doesn’t know where to take her. “Swaziland is a very small economy where there are no facilities to cater for such a disability.  I am also sceptical of taking her to facilities beyond the borders as I fear abuse.  I have just left everything in the hands of God.  There is one thing that I know that God has good plans about my daughter, plans not to destroy her but to give her hope. (Jeremiah 29:11),” Mandisa said.

Names changed on request

Down syndrome awareness is represented by the blue and yellow. 

Be Autism Aware in 2017

Happy New Year to you all. Here’s hoping everyone had a restful festive season filled with love and joy. I am looking forward to another year of highlighting issues affecting individuals with autism and their families.  There are still many people who don’t know what autism is, and that is unfortunate seeing it’s a condition affecting quite a sizeable population in the Kingdom of Swaziland. Hopefully as the year progresses, that number dwindles as well.  When people are informed about the condition, they won’t be compelled to judge harshly when they encounter affected individuals. Also, many parents are struggling with their children at home and not seeking intervention because they don’t even know their children have autism. Please take time to read up the condition. There are countless online resources; you never know when that information might come in handy. 

One day, Simphiwe*, whose son is autistic, was at a community meeting in Ngculwini when a woman called out to her, “Make wemntfwana longaphile engcondvweni!” (Hey mother of the mentally ill child!") Simphiwe said she was heartbroken by those words and did not understand why that woman had simply not asked for her name. That’s how bad things can get when you come across grossly insensitive and uninformed people.

It’s not just strangers that stick daggers into the hearts of parents with autistic children. Loved ones also do it. The festive season is one of the most awaited times of the year when families get together and be merry. For families affected by autism, it is usually a trying time.  It is hard to participate in family and social gatherings because sometimes autism comes with hyperactivity, sensory issues and poor social skills. If the music is too loud, or the crowd too big, the autistic child can have a meltdown or spend the day with his hands over his ears. If you are the parent of such a child, it is difficult to turn a blind eye to this and just have fun. You end up also having a distressful day either trying to quell the meltdown or make your child comfortable if he’s in distress. Given a choice of whether to spend the day in the company of family yet not partaking in any of the activities because you have to keep an eye on your child, and just staying at home where the child is used to his surroundings, most parents would choose the latter. You stay at home with your child, you don’t have to spend the day explaining his behaviour to anyone, and your child is calmer because he is in his own turf. It does get lonely, though. Sometimes staying away from functions can also be imposed on the family of the autistic child. People might never want to invite you again for fear that your child might break things or disturb the peace, be the “party pooper”, basically.

At family functions there will always be that aunt who will shout in front of everyone that if you spare the rod you spoil the child, but people need to understand that no amount of beating will control the negative behaviours that emanate from autism. It is a developmental problem, not a parenting one. A Mbabane mother to an autistic girl said even though she was naturally a sociable person, her child’s condition had transformed her into an antisocial person. “If I go to a family gathering and people are trying to converse with my daughter, how many people am I going to explain to that, no she can’t have a conversation?” Between managing your child’s behaviour and swallowing the lump on your throat caused by all stinging comments being fired in your direction, there is usually not enough time and energy to explain things.

Family gatherings are also the time when family members share snippets of how well their children are doing at school, what sports they are excelling at, and the clever things they say. Meanwhile, you might still be trying to toilet-train a 6-year-old or trying to teach an 8-year-old to say “mum” or wave properly. (Many children with autism take long to learn to use the toilet. An article on Autism Speaks website attributed this to the general developmental delay that many of them have, difficulty in breaking the long-established routine of wearing diapers, and communication challenges. Some children with autism also have delayed speech, with some finding their voices as late as 8 or 9 years of age or never speaking at all.)

Sitting in the middle of people exchanging progress reports about their typical children is bound to make the parent of an autistic child left out and feeling sorry for him/herself and their challenged offspring. The progress reports are not even the worst of it. Things start to get really ugly when people start to compare their children with your autistic one. I remember a time when my own son was about 4 years old and still had a vocabulary of about 15 words. A friend, whose son was less than 2 years old, dropped by and went on and on about the intelligent things her son was already saying and how very balanced he was for a little person his age. When she ran out of her stories, she ‘modestly’ said, “Oh listen to me going on about my clever child to a person whose son can’t say anything!”

Of course the festive season is gone, but there are still birthdays and other smaller functions during the year. Do invite folks with an autism child too. Ask them how best you can help to ensure both child and parents enjoy the event. Not all autistic children break things, but if you know the particular child you are inviting does break, rather move the breakables out of his reach than shun his family.  And don’t compare that child with your own.

Brownies & Downies - A good model to emulate

Some schools have already opened now and in the swing of things, while the rest will be opening this week. Shopping malls are still a hive of activity with last minute shopping for school requirements such a stationery and uniforms. Parents subject themselves to all the expenses because they see light at the end of the tunnel. They want their children to get everything they need, get good grades and make wise career choices. For children with intellectual disabilities, however, there is a lot of uncertainty regarding where to go after they are done with their high schools studies, sometimes even their primary education, if at all they make it to school to begin with. Not everyone with intellectual challenges has the capacity to enroll for high schools studies. On the other hand, there are many that qualify for high school and even tertiary, yet the educational system is not that accommodating. For the few that do manage to study, the employment market can be very hostile and they might still find themselves twiddling thumbs with no job opportunities.

Employers are usually scared, unwilling, or mistrustful to hire people with disabilities. Two people in Veghel, the Netherlands, came up with a brilliant idea to avail employment opportunities for people with intellectual disabilities. Teun Horck, a chef, and Thijs Swinkels, a special needs teacher, realised that not many people with disabilities were employed in the hospitality sector, and decided to change this. In 2010, they started Brownies & Downies in their home country and the concept soon spread to surrounding European countries. The franchise has since grown by close to 30 stores in the Netherlands. It has even come very close to our own shores – in Cape Town South Africa.

Brownies & Downies is a training centre, in the form of a coffee shop and lunchroom, for people with intellectual disabilities ranging from fetal alcohol syndrome, autism, Down syndrome, to other learning disabilities. Their website states that it is “a vessel to create change and acceptance in the South African culture. Special needs young adults are trained to be employable in the hospitality, service and retail sectors. The Cape Town outlet was started by Wendy Vermeulen, a young woman who initially came to South Africa from the Netherlands, and also noted the lack of employment opportunities for people with intellectual disabilities.

Parents whose children need training phone the shop or email Vermeulen, then meet her at for an assessment of their age and interests. They are then added to the waiting list for training. Schools also sometimes approach the shop for their learners. Brownies & Downies tries to find job placement for the trainees, but some of them come for the training while they are still studying. “So far we have placed 3 people into real jobs at spar. And hopefully we will place some more of young adults in the work field very soon,” said Vermeulen.

She said in the beginning some of the trainees were shy but after a while, their confidence grew. “It is really great to see the trainees opening up and enjoying their work in the coffee shop.”  Regarding how customers react to being waited on by people with intellectual disabilities, she said, “99% of the customers are fine, they absolutely love it. But you always have the odd one who is rude to them or things like that.”

The biggest challenge faced by the establishment, according to Vermeulen, is the lack of knowledge that people have about people with intellectual disabilities, adding that having the young adults working in the coffee shop was good sensitization that people with disabilities can actually do something, they can work; contrary to what some people think.

Going through social media, there appears to be very happy customers for Brownies and Downies, with one hash-tagging #findingabilityindisability. However, some people have misgivings with the name. Name notwithstanding, it is a powerful concept that is helping to change perceptions and put people with intellectual disabilities in circulation with broader society, while taking charge of their lives by being professionals.

I believe the Brownies and Downies concept is doable even here, and not just for the hospitality sector. It could be in mechanics, retail, crafts, fashion, anything. People with intellectual disabilities have their own interests and some of them are exceptionally gifted. Unfortunately in most cases they are not consulted about their own lives, or parents and teachers alike might not take time to observe their areas of interest. Decisions are made for them. Some parents would rather channel financial resources to their typical children who they feel stand a chance of getting employed. Atypical children also need that chance to do what they love and lead fulfilling lives.

Medical and educational experts say early intervention for children with intellectual disabilities can work wonders to improve their condition. If you want such a child to go to work someday, you need to ensure they get the necessary medical care such as therapy, and attend school so that they can learn to take instruction and work within set routines with other people. But for them to go to school, the schools would need to be available and equipped to deal with their respective conditions.

Vermeulen said Brownies & Downies were thinking of expanding and maybe even franchising. Who knows, maybe someone with a big heart is reading this and we might have our own Brownies & Downies in Swaziland and change a few lives and perceptions. Regarding how employers usually shun employing people with disabilities, Wendy encouraged them to take a chance. “Just open your heart and see what amazing people they are. They are just like anybody else. A lot of times, in my experience, even better!” said Vermeulen. If you happen to be in Cape Town and in need of a bite, Brownies and Downies are located in Shop 7, 2 Long Street. 

International Day for People with Disabilities at Ekwetsembeni Special School

Today is International Day for People with Disabilities and I spent the better part of it at Ekwetsembeni Special School in Mbabane. An organisation called Farai Foundation (I hope to write about them soon), with the help of other sponsors, threw a Christmas party for the children at the school. I had planned to go to the function about a week ago, then something upset me and I decided I would spend the day moping. Then early this morning the managing editor of the paper I contribute to called and asked me to come to the function. I wasn’t particularly dismayed about going because I had initially planned to go. I am glad I attended.

Being a mom to an autistic child, there are times when I feel autism is the absolute worst thing that ever happened to this planet. Attending the Ekwetsembeni Christmas party made me think; hmm autism is probably not the worst of conditions (I still wish I could wish it away regardless). I saw children with all manner of physical disabilities, some that I had never seen before. I don’t know if this is a sin, but I found myself with a lump in my throat and hot tears in my eyes asking, “Where was God when all this was happening?” Most of the children were evidently from disadvantaged backgrounds and it was quite sad to think about what their future looked like in country where people with disabilities are not fully supported. It strengthened my resolve to keep raising awareness on disabilities and the pushing for the need to support people with them so that they reach their optimal.
Head Teacher of Ekwetsembeni Special School, Thembi Dlamini said she was very grateful to Prince Majaha and Farai Foundation for their kindness and bringing smiles on the children’s faces. The school caters for children with different intellectual disabilities varying from Down Syndrome, cerebral palsy, autism, ADHD, among others. Dlamini said some of the children do not even have proper diagnoses, but the school still accepts them into their system. They are then assessed, placed into ungraded classes and taught according to their levels of functioning. A child might be found to be doing Grade 3 English, Grade 5 Mathematics and other subjects from different grades. There are some that end up being recommended for inclusive education and proper grading after proving they can do well in such an environment. At around 16 years of age, those children that cannot be mainstreamed start vocational training. They are taught gardening, washing cars, art and crafts, and other skills. Dlamini said even though the school gets the same funding that all government primary schools get, the school would appreciate donations so that they can be able to buy raw materials for their crafts and other things they need for vocational training. The funding does not cover that. 

People with disabilities should only fail to get somewhere because of natural limitations that cannot be surpassed, never because society failed them by not creating an enabling environment. What I yearn for all people with disabilities is access to education and health care. The world is too rich for people with disabilities to go through life without those two essential needs. It only takes a bit of commitment from government, the corporate world and society in general to ensure that people with disabilities are able to lead a dignified life. Farai Foundation joined forces with many organisations and the day was a resounding success. It can be done – on an even bigger scale than one day events (not to belittle what Farai Foundation did, but to encourage people that we can go bigger and better). Imagine how the country, or the continent of Africa would be if everyone who could would financially adopt a child with a disability by offering to put him/her through school and providing all the necessities? People resent it when people with disabilities sit by roadsides asking for alms, but how do they not take to the streets if they are not educated?

Congratulations Farai Foundation for hosting a successful event. It was very heartwarming to see how happy the children were. However, I wish the playlist had been more carefully selected. Playing Nasty C's Juice Back and Hell Naw at a children's party was a quite in bad taste.
What have you done lately to assist someone with a disability? 

Children with special educational needs should not be banished from regular schools

The story headlined “Build more special schools” in the Swazi Observer of November 21 was quite an upsetting read. A senator moved a motion in parliament to the effect that, with funds permitting, government should build more schools to cater for pupils with special needs, because “an ideal situation would be to separate pupils according to their needs to avoid lowering the standards just because teachers are trying to accommodate slow learners.”

He was also quoted as saying the inclusive nature of the country’s education system had a potential to compromise the quality of education in the country’s schools. No offence intended, but the education system in Swaziland can hardly be described as inclusive, especially when it comes to children with intellectual disabilities.  Whole families are moving from far and wide to chase a handful of schools that can accommodate their children in other areas. Children with special educational needs are commuting long distances for the very same reason.  Inclusive education means that all students, with or without disabilities, attend and are welcomed by their neighbourhood schools in age-appropriate, regular classes and are supported to learn, contribute and participate in all aspects of the life of the school. When there are still allegations that “slow-learners” impede the progress of other students, then it means there’s piece of the puzzle that’s still missing. With the right kind of support, there will be a way around accommodating all students without fear of those with learning disabilities disadvantaging anyone. That would be inclusive learning.  There is well-documented evidence that when typical learners and those with disabilities learn together, there are good results academically and socially. 

Susan Nyatanga, a trainee special needs teacher from University College in Denmark said suggesting exclusionary policies when research is showing that students actually mutually benefit from being in mainstream schools is not only retrogressive to societal development, but also promotes discrimination of the special needs learners. “Instead of arguing that they lower educational standards, why not test them according to their abilities? When teachers are trained properly, they are equipped with many methods through which they can assist all children according to their abilities. A progressive argument would be on how best to train the teachers to enable them to teach the children with special needs, or what can be done to equip schools to accommodate these children. As educationists, if we restrict their world instead of expanding it, we would have dismally failed,” she added.

Howard Gardner’s Theory of Multiple Intelligences argues that we should not have the same test for everyone. Children have different talents and should be tested according to those talents and their level of functioning.

Nyatanga said most special schools in Denmark were actually being gradually dissolved as the country moves towards integrated education. The whole world is moving towards that. The UNESCO World Conference on Special Needs Education, held in Salamanca, Spain in 1994 made very important provisions which Swaziland would do well to adopt. One of the recommendations reads, “…those with special educational needs must have access to regular schools which should accommodate them within a child-centred pedagogy capable of meeting these needs.” The conference called on governments worldwide “to adopt as a matter of law and policy the principle of inclusive education, enrolling all children in regular schools, unless there are compelling reasons for doing otherwise.” If Swaziland is moving towards First World status, separating children based on their educational needs should not even cross anyone’s mind. If we seclude them, what will do next? Build a little world for them to live because they are deemed slower than others?

Swaziland has its own success stories in inclusive education. Inclusion does not necessarily mean all learners will always be in the same classes. There can be a classroom for those with special educational needs, where their strengths are assessed. They then join other classes for subjects they are strong at. Enjabulweni School is doing it, with very good results. They have the Paiva Learning Centre where children with special educational needs are based, and those that are strong in certain subjects join the mainstream classes for those subjects. All children with or without learning difficulties participate in school plays, sports and all activities. Stepping Stones opened a class for autism this year and is also doing very well with inclusive learning, as you will read in next week’s instalment.

Schools are not all about academic achievements.  They are also places where children’s outlook of the world is cultivated. It is where they are taught to discriminate or embrace those that are different. What will be teaching typical children when we say those that don’t learn at the same pace as them should be isolated? The excluded children will be deprived of the opportunity to socialize; the only world they will know is that which comprises people with their challenges. Children learn from socialization. The world is bigger than whatever challenge the children might have. Inclusive education in regular classrooms minimises the likelihood of a child with disability becoming an adult segregated from broader society.

There could be some parents who would prefer special schools over mainstream, depending on the condition of their child or other factors. The research that I have done, however, indicates that many parents of children with learning difficulties would rather have them in mainstream school, with a separate class where they can learn at their own pace. They are just children at the end of the day, and their disabilities or conditions should not define them. They should all be treated like equal citizens, not a burden that should be eliminated from mainstream schools and be condemned to some other corner like lepers. The Salamanca Statement recommends that governments should promote parental partnerships so that parent representatives are involved in the design and implementation of programmes intended to enhance the education of their children. Parents should have a choice and a say over where to place children with special educational needs. Currently Swazi parents do not.

Published in Swazi Observer on Sunday

Education struggle is real for people with autism

Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges, in varying degrees. It is life-long and is present from early childhood. Some of the red flags for autism are language delay, lack of eye contact if you call the child’s name or try to engage him/her, lack of social interaction, sensitivity to loud sounds, repetitive behaviour, and difficulty in handling routine changes, among a host of other symptoms. Although it is not clear how many people have autism in the kingdom, the fact is that there is a substantial number, substantial enough for relevant authorities to want to avail facilities targeted at improving their quality of life. 

In Swaziland there are many severe deficiencies in the world of individuals with autism and their families. These range from non-availability of medication sometimes, lack of a solid support system for parents, the stigma associated with the condition, and of primary concern, non-availability of ideal educational structures for children with autism.

I am very thankful to have conducted some interviews with some autism moms. Many are not willing to talk about their experiences with the condition. I do hope that as we continue discussing this condition, more people will come forward to share their stories, with hopes that when the powers that be read real stories from real people, the challenges surrounding autism in the country can be addressed. The general consensus in the autism community in Swaziland is that not enough is being done to foster inclusive education, especially in government schools. When people discuss educational inclusion, what immediately springs to mind are wheelchair ramps, braille, and equipment for the deaf. Those with intellectual difficulties are usually sidelined.

While most parents would have secured schools for their children several months before the beginning of the new academic year, those with autistic children will be tearing their hair out with absolutely no clue where to send their children. The choices are very limited, and are usually not ideal. Now, that is extremely sad because every child deserves an equal shot at life regardless of how they were created. Children with autism are not write-offs. They are quite capable of learning, but do so in a different way and at a different pace than typical children. We cannot preach acceptance or equal rights for people with disabilities when there are certain groups that aren’t being sufficiently catered for

A section of Mbabane

Parents of typical children have a wide array of school choices. When your child has autism and you are in Swaziland, you mostly have to settle for any school that will accept your child, even when, with a breaking heart, you can tell that your child is not really getting the help he needs.  A parent would sleep better knowing their child is getting the best care possible at school, and is not just getting tolerated or even being discriminated against.

This happened to Sakhile* of Mbabane when she enrolled her autistic daughter, Nomsa*, at a certain school. When she met the person who would be her child’s teacher, she was very upbeat and assured her that she knew how to deal with autistic children as she had also studied Psychology. Not long afterwards, Sakhile got a distressing text from the teacher, who said she couldn’t handle Nomsa anymore. She was hyperactive, would just walk out of class at will to just look around, and could not concentrate on one thing at a time. Sakhile took her to a local pediatrician so that she could get medication to help her settle down, but the doctor declined to do so. (The issue of medicating children with autism is a thorny one, and will be tackled in upcoming instalments).   The teacher said Nomsa had to come so school with an assistant from home as she could not cope on her own.  In her own words, “It would help a great deal and release some pressure off me.” Sakhile said there is someone she has a connection with, Nomsa behaves a little better.  She then decided to send her helper with the child, but the helper quickly quit her job because she did not want to accompany the child to school. She probably felt this was not what she signed up for.

Sakhile’s sentiment is that the teacher did not create a relationship with the child and wrote her off without even trying. Consequently she had to pull her child out of school for a few days to arrange for another assistant.  “The teacher’s complaints always implied that my child is a burden. When we first met her, she allowed the child to be and when we tried to control her, she would say, “No, leave her alone. Let her be herself!”  She said she did Psychology, but if you did psychology then you should know how hard your words would hit a person and you would choose your words carefully when you complain,” she said.

There are a number of private schools that are doing their best to equip themselves to include pupils with autism by providing the right amenities such as Occupational and Speech Therapy at the schools to avoid the hassle of children missing school, and their parents missing work on a regular basis to seek the treatments at hospitals. But what happens to those that cannot afford private schools? They do not get an equal chance at education and sadly just fall through the cracks. There are also quite a few preschools taking children with autism, but when they’re old enough to go to primary school, there are just not enough schools to accommodate them.

In the next instalment, we will discuss how the Enjabulweni Learning Centre came to be, and how it happens to be the dream school for many parents with autistic children.

Published in Swazi Observer on Sunday

*Names changed on request

How the Enjabulweni Learning Centre came to be

Over a decade ago, a family found itself in a predicament following the discovery that their son had a learning disability. Unfortunately, as he grew up, no-one had brought their attention to it and by the time they realised it because the pre-school that he went to just pushed him along.

When it was time for him to go to school, the Paivas realised that their son, who we will call Ben, was not really ready for that. They decided to investigate, and that was the beginning of their grueling journey to accord their child a chance to get an education like any other child.  “We spent a lot of our time to research to see how best we could help our son, which resulted in us being told by one of the people we went to see that with children like our son, the most important thing that you can give them is stability in their life and their home environment,” said Sonia Paiva, the child’s mother.  But they wanted their child to learn, and an advisor recommended that he be put in a school that would accommodate him, with children of his level of functioning, and at the same time let him go to meet the children in the mainstream.

“When we came back to Swaziland there was absolutely [no school] like that in both the government and private institutions.” The Paivas then approached Enjabulweni, and realised that the need for a special needs class was there but there were no facilities for that. They then came to an agreement with the school to build the Paiva Remedial Centre while the school provided the professionals. And that’s how what is known as the Learning Centre started.  That staunch determination by desperate parents has resulted into a huge blessing for children who would also have had nowhere to go.

Enjabulweni Head of School, Kathy Thompson said there has always been a huge demand for special needs education and a remedial class. The Learning Centre accommodates children with autism, Down syndrome, ADHD, dyslexia, the physically disabled, and those that just need a boost to settle in the mainstream. Owing to the fact that there aren’t many options in the country, there is a long waiting list for people hoping to secure a place for their children with learning disabilities. “We no longer put people on the waiting list, we are forced to turn them away,” said Thompson.

More than a decade since the Paivas’ struggle, there sadly hasn’t been much improvement. One parent facing a similar struggle is Setsabile* from Mvutjini. She is unemployed and her husband does not make enough to send their autistic 7-year-old son to a private school and cater for their other needs at home.

 “When my son was four years old, I took him to pre-school with hopes that when he mingled with mainstream kids, his speech and behaviour would improve but I was very disappointed when the teachers told me that they couldn’t handle him. He only lasted one term and one day I found him locked alone in a separate class and they said he’s causing chaos and disturbing the normal kids,” said Setsabile. After that she could not find placement anywhere else, and was forced to stay with him at home for two years until she found a place at a special school.

Setsabile is still keen to send her child to a mainstream school with a special needs class so that he can learn proper social skills from the typical children. Presently  she has to hire a taxi to pick him from a bus stop a kilometer away from home to the special school and back, to a school about 8 km away. She pays E1 700 per term in taxi fare. Although she is thankful that her child is in school, she is not entirely happy with the standards at the school. “The ministry of education must hire therapists so that our kids get speech and occupational therapy at school,” she said. Getting therapy at hospitals is challenging because of the expense of taxi fare to go there and managing the child’s behaviour in public transport.

The presence of resident therapists is one of Enjabulweni’s biggest strengths. Thompson said Enjabulweni was focused on inclusivity. “When a child improves, even for one lesson, we try to include them in the mainstream. Learning difficulties such as dyslexia, ADD, ADHD are barely residential and are good candidates for inclusivity,” she added.  This process, however, does not come cheap and Thompson highlighted that the children at the learning centre don’t have enough teaching assistants. She said the children needed to have much more therapy, but the Speech and Occupational Therapists at the school had a huge workload as they also work with children in the mainstream who might need their assistance. They also have to be paid medical rates, which is one of the challenging aspects of retaining their services in the school.

With regards to how other children in the school relate to those with intellectual disabilities, Thompson said, “We try to create a sense of family and children with special needs are included wherever possible in order to look for, and find their strengths. All these people can perform. Society has to give them the opportunity.” She said her school was pushing towards vocational opportunities in order to find a skill appropriate for their capability. The Learning Centre currently has an agricultural project they are running.

Inclusive education has been seen to help improve the condition of children with learning disabilities. Affected children will learn how to relate with others, while typical kids will grow up with “different” people among them, minimizing the possibility of them growing up to discriminate against those with disabilities. 

Published in Swazi Observer on Sunday

*Names changed on request