Key Terms Explained
Spectrum: Autism is a spectrum disorder which means it can range from being very mild to severe or anything in between. Every version of Autism is experienced differently by each individual.
Meltdowns: A meltdown can be triggered by almost anything. It is not a tantrum; it is the total shut down of an individual’s ability to control their behaviour which manifests itself as a violent outburst. The person experiencing a meltdown is not in control of their behaviour. Things like sudden sensory overload can trigger a meltdown.
Neurotypical: This term is used to refer to people who are NOT on the spectrum.
Sensory Overload: When an individual becomes overwhelmed by the amount of competing sensory input they receive. It can relate to any of the five senses such as sounds, tastes and smells. In short the body experiences over stimulation, which is one of the causes of meltdowns.
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“Where is that child’s mum?” I heard someone shout, “Why doesn’t she move her?” I remember exchanging looks with her dad. There was our three year old Autistic daughter, devouring the cake on stage at her uncle’s engagement party. She made herself comfortable on the groom’s lap and was positioned well to attack the cake from all angles with a fork. A slice of cake was presented to her on a napkin as a bribe to vacate the stage, but she successfully fought off everyone who made any attempts to come for her, as if to suggest the diminutive slice was an insult, when she could have the entire thing. In the end, she was overpowered by the temptations of daddy’s phone and finally capitulated to the powers of YouTube, but only after she had appeared in almost every camera shot with the bride and groom.
Unbeknown to many of the guests, what they were witnessing wasn’t a child on a cake-eating rampage, rather an example of a child being overcome by obsessive behaviour, one of the many symptoms of Autism Spectrum Disorder (ASD). Autism is a complex neurological condition which affects the social behaviour of an individual across three main areas: Social Communication, Social Imagination and Social Interaction. Each of these categories contain numerous impairments, such as speech and language delays, difficulties understanding humour, facial expressions or emotions, lack of eye contact, ritualistic or obsessive behaviours as well as many others. In public, Autistic people may come across as withdrawn, socially awkward, hypersensitive to sounds, smells or crowds due to sensory overload. And because there are so many impairments which fall under the Autism umbrella, the condition presents itself differently in different people. It is a spectrum disorder which means it can range from severe to mild. Those on the severe end tend to have no language and struggle on a day to day basis. Those who are mildly affected do struggle in areas of social communication but usually have a normal to above high IQ, with many displaying exceptional talents or skills.
My daughter’s behaviour that day was a ‘normal’ response to her excitement at seeing cake. For onlookers however, they probably couldn’t see what was ‘normal’ about a child wanting to consume an 18 inch cake all by herself. Looking back, I can laugh at the non-hysteria of it all and the scrappy efforts by some ‘neurotypicals’ to remove my child from the photo shoot, because her compulsive behaviour is at odds with the unspoken social and cultural laws which govern our gatherings. But as a parent, these things hurt because you can see that your child doesn’t quite fit in.
People seem to think that there is a quick fix solution; a conventional method of parenting which will bash the Autism out of her by correcting the non-compliant behaviour. But there isn’t. It can take any method, tactic or technique, many of which are improvised on the spot to diffuse a precarious situation. And that is the reality of Autism parenting; it can be spontaneous, frightening yet far from dull. So whilst it may appear to some people that we have lost control of our child’s behaviour, we probably have a better handle of it than most people can comprehend. When I chose not to move my daughter away from the cake immediately, it was to buy her time to eat, because I knew that by not allowing her would be ten times worse. A ferocious meltdown in public would have been the alternative. Sadly, not everyone can pre-empt the triggers which can lead to meltdowns the way that parents of Autistic children can. It is an unfortunate accolade to bear for living on a routine of melt-down prevention.
As Autism parents, we have to know where the boundaries are with our children in order to prepare for the challenges which come with certain behaviours. This was difficult at first because I was constantly worrying about what people around me were thinking, particularly other Muslims; when it appeared that I was allowing certain unusual behaviours to go unchallenged. In actual fact I was trying to prevent the onset of serious meltdowns. Like the time I allowed my daughter to crawl out of nursery because she refused to walk, making strange meowing noises to my amusement. Or the occasions where I have allowed her to chase after dogs in the middle of the street, pursuing their owners for a quick stroke. And the times I have allowed her to have tantrums at the local Wilko store as we pass by the pet aisle, because she’s spotted bags of dog food and rat poison, neither of which we have any need for!
As a niqab wearing woman, I sometimes feel self-conscious because I’m allowing my child to behave these ways in public, knowing full well that I am presenting a contradictory image of myself as a Muslim mother because I don’t embrace the stereotypical strict parent conduct that many would expect of a practicing Muslim woman. And it is this conflict; the stereotype between the expectations of the bearded brother and his niqab wearing wife, versus the reality of our parenting situation that creates an unusual paradox. People assume that we have well disciplined children just because we look like we have got the religion bit right. So imagine what people think when they see the opposite is true, that we are parents of a determined little child who is uncontrollable around animals and cakes, a far cry from the halo wearing infant they believe her to be. What do we say to those onlookers who find the situation rather odd looking? Do we declare that she suffers from the ‘A’ word or should we allow them to ponder in confusion so they can work it out for themselves?
These days I much prefer telling people about my daughter’s diagnosis, particularly in moments where she displays curious behaviour, like taking off her clothes wherever she wants. I want them to understand that her behaviour is due to sensory issues and isn’t the result of shoddy parenting. Sadly it’s not something that everyone wants to listen to. After my daughter’s diagnosis I wasn’t sure if discussing Autism so openly was the right thing to do. This is because I belong to a Bangladeshi Muslim community, which for all its strides and progresses, continues to fail like most communities in understanding areas of intellectual disabilities. It is a community which often prefers cultural and superstitious interpretations over scientific ones, which makes discussing Autism both complicated and a kind of taboo.
This is in spite the fact that talking about ASD gives me a form of relief. It gives me a sense of control over the condition which has otherwise consumed my thoughts. Autism is rarely spoken about within our community because people don’t understand the concept of a spectrum disorder. And I admit it’s difficult to comprehend, somehow made more complicated because it is referred to as a ‘hidden disability’, as there are no physical impairments to distinguish it. Hence, understanding of the condition is as varied as the spectrum itself. In my experience I have found that the younger, more educated Muslim generation show some level of understanding. Whilst it is the older generation who struggle to grasp how a child who looks ‘normal’ can be suffering with anything at all; overlooking the fact that it is not a physical disability.
There is an unacceptable lack of understanding about Autism within our Muslim community. And sadly this ignorance is partly the result of our own doing because we allow distorted cultural attitudes to flourish, such as those which argue that Autism is a form of demonic possession as opposed to a neurological disorder. It seems easier for people to justify non-conventional behaviours as the result of madness rather than trying to understand the cause. And we haven’t exactly created the environment to allow Muslims affected by the condition, or their families to speak comfortably without being judged. And by not talking about the disorder, we continue to feed the myths surrounding it, causing many families to feel isolated and fearful about the reactions of others. It means that some parents choose to live a lie, trying to suppress the hardships they may otherwise be facing; like the pressures of dealing with violent behaviour, anxieties, sensory overload or meltdowns. So it pains me when I think about those mothers I have met of Autistic children, who deny their child is Autistic, despite receiving a diagnosis. Maybe they somehow believe they are protecting their child by not sharing it with the wider community. But for how long? Or maybe it is because they are ashamed of the stigma of having a child who is different and find it easier to make excuses for them than face up to the world and say ‘Alhamdulillah’, I have an Autistic child.
Whatever the reasons, dressing up a child’s neuro-difficulties with excuses is not healthy for the child or the parent. If we want to tackle ignorance and encourage understanding about Autism, those Muslim parents with children on the spectrum need to change their attitudes first and shake off their own prejudices before accepting that their child’s difference is from Allah (SWT). Only then can we make progress and challenge the attitudes of those strangers we meet in public. We need to celebrate Autistic differences, not censure them. And no matter how difficult some of the behaviours may be, we cannot afford to be ashamed of them. We must accept that Autism is a different way of processing information and that the best way to help those on the spectrum is to accommodate them. We need to take responsibility for educating family and friends and be prepared to take on the cultural reactionaries within our communities to help dispel myths; to create a comfortable space where everyone can benefit from the simple therapy of conversation. Only then can we break the taboo of talking about Muslims with Autism.
Husna Begum is a married mother of two with a young Autistic daughter. She is on a personal mission to raise awareness of Autism within the Muslim Community insha Allah. Husna graduated with a BA Honours degree in English Literature and recently earned a Diploma in Autism Awareness. A former GCSE English Literature Examiner, Husna currently works as a Teacher in an Islamic School in Sheffield.