Do you know what autism is? I'm asking because I'm still not entirely sure that I know. I've been wanting to write about autism for a while but I feel totally unqualified. So why am I writing now?
Well, I'm still totally unqualified, but I had a chat with a certain lady (she had juice, I had a coffee, neither of us ate), a chat we have been postponing for quite some time. She knows significantly more than me about autism and she helped to clarify certain things, but only a little (because I'm slow like that). And I am not here to define autism for you anyway.
Still, why autism? I posted a piece on this blog titled Disability and I mentioned how affected I was by seeing physically disabled people. The same applies to autism. It's not always as visible as other physical disabilities, and I didn't even know that it was categorised as a disability. But it is. And yes, I've seen the movies Rain Man and The Accountant.
I do not think I would be exaggerating when I say that it is only recently that autism has become a 'thing' in Ghana. I am not saying we didn't have any cases of autism. We did. But as I understand it the symptoms were not recognised as such. The diagnosis was a problem, and speaking of problems, children that displayed signs of autism were merely treated as problem children. And probably beaten, Ghanaian style, for being recalcitrant, stubborn, headstrong, naughty, and just plain stupid. Stupid is not used here as an insult but is a fairly normal means of describing a child by an adult in Ghana. And of course, sometimes we indulge in one of our favourite pastimes: the parents of that child are lousy!
My mind (and my heart) refuses to contemplate how many Ghanaian children may have been inadvertently neglected or mistreated because their families, and possibly their doctors, could not recognise some of the signs of autism. Of course, this begs the question: how can you tell the difference between a naughty child and an autistic child? When you scold or sanction a naughty child often enough they will eventually get it. With an autistic child, the behaviour doesn't stop.
I am not here to allocate blame, however. Diagnosing autism is not an easy process. There is no specific medical test. What is observed closely is a child's behaviour, and even more closely, any missed developmental milestones? For example, if a child has challenges with communication or other social interaction, or displays restricted and repetitive patterns of behaviour. These should raise a large red flag and are an indication that all may not be quite right. Some of these are supposed to be observed when we take a baby for weighing, but unfortunately, it doesn't always happen.
I really did not want to use any jargon in this piece for what is already a fairly complicated matter. As if I could understand any kind of jargon myself. Suffice it to say that autism may not be quantifiable through medical tests, but there is a defined spectrum. An autistic child may fall anywhere on this spectrum, from barely to a full-blown autistic individual.
I should say here that not all doctors can handle autistic situations. There are specialists though, like developmental paediatricians or a child psychologist. You need to get one of those when you first see signs. Do we have them in Ghana? Yes, we do.
Autism in Ghana, even as we begin to become aware of it, is treated like all other disabilities, especially mental disabilities: we hide it because the shame and the stigma are too much for us to bear. Meanwhile, the child may be outwardly normal, perhaps only displaying a lack of fluency, or a repetitive way with words.
It may also manifest in hyperactivity, a steady constant rocking motion, or even stemming. Stemming is a constant motion of a part of the body, for example, like someone trying to strum an air guitar. Most autistic children lack what we consider normal social graces. They may not be comfortable with shaking hands, looking you in the eye, or doing anything one-on-one. Sensitivity to light is another trigger.
Autism may, and in Ghana does, lead to difficulties in getting a place in school, and therefore limits the formal education prospects of an autistic child. But there is hope now. There are schools being operated specifically for children with special needs. None are residential as far as I know, and there is a sad reason for this. Some families are simply looking for somewhere to dump the autistic child. Make the facility boarding and you might never see the parents again. Apparently it's worse in the rural areas, where undiagnosed autistic children are 'seen off' to the forest....and abandoned. Seriously.
Looking after an autistic child is a 24/7 job. Can you really pass judgement on the parents? So these special schools teach the children everything, from basic education to life skills. But the parents are supposed to reinforce this training at home. They may need more effort, of course, a firmer hand, to calm the children down.
Most autistic children grow up with a particular skill-set. In the modern Western world, this skill will be carefully identified and will be utilised for the career development of the child. Some HR units worldwide are now actively searching for autistic people with particular skills, hiring them, and then adapting the firm to suit the autistic person. For example, by placing the individual in an office with dimmer lighting, or an office where there is absolutely no extraneous noise like photocopiers or printers. Are we practising this in Ghana? Ask another question, please.
One thing we are doing in Ghana though is helping autistic children learn how to cope in an environment that we take for granted. The best examples I have heard of are trips to Malata Market, Melcom, and Fun Games. This helps autistic children learn about buying and selling, jostling in a crowded area, shouting, etc. They are also taken to petting zoos, join sleepovers, and as for the Games they are just wonderful! Have you heard of a slow basketball game with 5 balls in play at the same time, and no touching?? Me neither! But the main point of the games is to take part, to mix, and to generally be an inclusive environment.
I heard of a project in London, England, where autistic children were taken to Stansted Airport for a days excursion just for the experience of being in a brightly lit busy area. In Ghana, I believe the Air Force has provided a trip or two on an aircraft, for those able to muster the courage to board the aircraft.
And yet you and I take all these things I have just mentioned for granted. We do them when we feel like it, or not because we are bored. It's an explosive experience for an autistic child and the only way that they might ever get to 'meet' the world in a somewhat controlled environment.
Fact: there are more male children with autism then there are female children. It is not my place to try to explain this phenomenon. But I must admit I wondered if it affected the Ghanaian state of ignorance about autism. If a boy is acting 'stupid' will anyone go further to find out why? By the by, because of the preponderance of male autistic children, the official autism colour is blue.
Examples of autistic individuals who are amazing us with their particular skill-set? Go online and read. There are numerous stories. Check out Markus the 13-year-old Russian artist whose work is selling for thousands of dollars.
If you are a parent then you know the pleasurable guilt of taking a 'day off' from looking after a child. Because you are tired, and sometimes just fed up. Imagine what the parent who is the primary caregiver of an autistic child goes through. How do you take the day off from a child who needs constant attention? And for whom sometimes routine is everything, and the slightest disruption creates TROUBLE. How long can you stay away from this child of yours?
My point? The world of autism is still being very slowly pried open here in Ghana. The children, the parents, and the caregivers need all the assistance they can get. At the moment awareness is everything. I hope this post has helped open our eyes, even slightly. You think you can do more? Consider sponsoring a child. And going straight to heaven.
Observing and interacting with autistic children is interesting, but mainly heartbreaking. And it's one of the reasons it has taken me awhile to write this post. So I took the easy way out by chatting with my friend. The lady whom I had a chat with deserves a whole drum roll and trumpet fanfare. But I am keeping her close to my chest (not literally, unfortunately). Thank you!