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.