Once a diagnosis has been given, the unimaginable reality of all that it takes to live with this disorder comes to the fore. It is always a challenge because no two people on the Autism Spectrum Disorder (ASD) present the same symptoms. The loneliness and “fog” of the journey deepens. One is faced with having to challenge perceptions, family, co-parenting, siblings, the church, extended family, friends, and the community at large.
Our kids look “normal” and it is only upon further observation of their behaviour that one will notice that something is amiss, because the disorder does not necessarily present physically.
Autistics struggle with sitting still, they are fidgety, tend to rock back and forth, jump around, spin, break out into random giggles/laughter, cover their ears constantly or flap their hands and may at times repeat the same word / phrase over and over again. It is normal behaviour for someone on the ASD known as Stimming (which is a self-stimulatory behaviour they do to “ground/centre” themselves).
At first, the Stimming could leave you as a parent very disconcerted because it calls attention to you and the child. And whether we like to admit it to ourselves or not, this is at first embarrassing and concerning to parents which is why many end up hiding their children in shame.
Understanding the Autism Journey
Before having a better understanding or full appreciation of the benefits of Stimming, most parents are tempted to try to stop the behaviour. People on the ASD have a sensory sensitivity of experiencing all five senses – taste, touch, hearing, sight and smell – at greater levels than most people. This is why the need to centre or ground themselves. A person on the autism spectrum may also overreact or under-react to two additional senses: the vestibular and proprioceptive senses. These senses impact balance, motor skills and body awareness. It is these additional 2 senses that also present in sleep disorder, clumsiness, and heightened sense of anxiety.
In our earlier years on the journey, I was frustrated by my sons randomly undressing in public or hating to be in malls or big crowds. I learnt two important lesson: their skin sensitivity and the art of “scanning” any environment before going there with my kids.
Their clothes fabric has to pure 100% cotton – texture is also a trigger to over-stimulation.
Malls, big crowds and spaces with too much lighting, especially fluorescent lighting, people wearing different perfume or colognes, dressed in bright colours, emitting different sounds etc. presents serious sensory overload to my sons. For them, it is akin to being in an “Imax Theatre” with all lights, volume, sounds, and effects turned on EXTRA LOUD. We work best in open spaces, with few people and subdued lighting and sound. What all this means in the end, is that your family activities become limited and altered to ensure that your ASD child is most comfortable.
The effects of sensory overload, almost always result in a melt-down – something which is markedly different from a tantrum. A meltdown is triggered by over-stimulation or is in reaction to feeling overwhelmed, it’s a total loss of behavioural control, where nothing can appease or calm down your child. The only way past it, is through it. A tantrum pales in comparison, as its goal is attention-seeking on the part of the child and once you give them what they want, it can end. Also, during tantrums, the child is fully aware of their surroundings and very present in the moment and will make sure not to hurt themselves in the process.
It is from the melt-downs that we get most of the unimpressed stares from people or irritable neighbours. Everyone looks your way and assumes that your child is totally ill-mannered and you as a parent are failing to discipline your child. Your own heart breaks during this time, the sense of loss of control is totally palpable and you are left feeling helpless.
Battles and Loneliness
The Battle, apart from the melt-downs, one of the most affected parts of the journey is our daily routine. We adjust everything to best accommodate the child and maintain their comfort levels. People with autism have a great appreciation for the predictability of daily routine. Ask almost any parent of ASD child, apart from uneven sleep patterns, understanding your child’s eating patterns and preferences is the huge battle of brushing teeth. ASD children are extremely picky eaters. When one better understands the science of the condition, it makes sense. But until then, it is a battle.
Some kids will only eat certain types of food i.e. dry food, food that is not mixed or touching other food on the plate, only processed food or only 1 colour food etc. Once you find something that your child likes, you literally stockpile on it. This is also another reason you are seen as a “rude” guest that brings own food or they think you demand inappropriate things for your kids and blame you when your kids do not eat what is being served.
The Loneliness experienced by parents comes from the melt-downs, fidgetiness, repetitive behaviours as well as random laughs at “inappropriate” moments. These are some things that cost you many a friend. There is something about telling others that your child has a little misunderstood condition that results in people steering clear of you – when all you need is support of friends and acceptance of your child. But that is not how human beings are. Those you consider as friends will rather stay away and keep their children away too. No-one wants to be tainted. Many people do not understand the changes you make to accommodate your child, instead they get offended that you are not as available as you used to be. They blame you for not attending their events but when you do, the expectation is that you do not bring along your “troubled” child.
It is not only relationships with friends that are impacted but also relationships with grandparents, siblings and partners who tend to struggle with how to “explain” the child’s condition or behaviour to others.
For a nuclear family there are additional challenges of accepting the diagnosis and its impact on basic relations and life going forward. Many mothers, while getting on with learning and accepting the child’s condition will also discover that progress and regress can be interchangeable due to the way your child responds to sensory overstimulation…all along having to deal with people looking at you “sideways”, with mumblings of how you cannot control your child.
Parenting comes with countless unsolicited advice from many people about what you can do better or what you are failing at. In the case of having a child with a condition that is not well known or understood, the decency and respect boundaries are crossed without a thought, all in a bid to “assist” your child or parenting skills.
A firm favourite is the concern raised that one’s ancestors must be upset about something and are therefore expressing their message through your child. Gears shift for a single-parent like me – the conclusion is that the ancestors of the children’s father are deeply displeased with me as the mother. A very interesting concept when considering the many fathers and paternal families who abandon their parental responsibilities. A lot of medical, spiritual and ancestral “cures” are offered to a disorder that is not curable or understood. These promises affect many a parents’ acceptance of what they are facing and dealing with, in the meantime, the necessary interventions that could assist in guaranteeing your child a better quality of life are delayed or not considered.
Many mothers are left to raise children on their own – a challenging and mentally, emotionally, physically draining experience – before we get to the financial difficulties.
Siblings’ rivalry is part of the family dynamic – with or without children with special needs. Having a child with special needs challenges parents to ensure the balance in parenting to avoid any other child feeling left out or that all the attention is on the “special” child.
The rude awakening
My boys’, Lesedi and Lethabo’s diagnoses were five years apart because the condition presents very differently for each child. One can seem “textbook typical” and his twin completely different.
My one son started at a mainstream school but was considered slower or mostly delayed due to his brother’s condition. In hindsight, as a mother, I fell into the trap of thinking that autism presents the same for everyone. It was a rude awakening but an empowering one especially for my work of raising awareness and acceptance in communities.
Lesedi is a very social child compared to Lethabo. His own development has been delayed somewhat because twins have a tendency to be emotionally dependent on one-another. Although Lethabo is non-verbal, Lesedi deferrers on many things from what food to eat, to what mischief they need to get up to. My boy is highly invested in being a twin.
The Financial demand OF AUTISM
AUTISM is an extremely expensive condition to live with, on every level imaginable – financially, emotionally, mentally and Spiritually. There is no way you can encounter this condition without experiencing a fundamental change and shift in life. You would be hard-pressed to find any family with a child with ASD who has not had to make some major financial changes to their life – just to keep up with what is required at the bare minimum. And even after that they will be sure to tell you that they do not feel that they are doing enough to provide all that is needed for their kid to have the best chance at a better life.
For one, finding and keeping hired help is also a challenge, one of the hardest in fact. Unless one employs a trained nanny for children with special needs, it is unlikely that many will stay. The stay-at-home nanny needs to be paid above the “going rate” due to the added responsibility that comes with taking care of a special needs child. Having full understanding of a child who can flow from hyper-activity to not being aware, fearful, uneven sleep patterns, unable to read social cues or does not speak can be very challenging for a nanny.
One must accept the multiple therapies necessary for a good quality of life and some level of independence for your child. The different therapies are necessary to identify the talent or genius to nurture and tap into. The theory is that people on the ASD have a high IQ, but there is also the hard cold reality that many resources are required to identify, hone, and develop the use of that genius.
ASD kids are prone to be sickly but many medical aid schemes do not pay adequately or in full for either the chronic medication or the full hamper of therapies required: occupational, speech, physio, music, assessments with educational psychologist and paediatric psychiatrist or the non-medical therapies such as acupuncture and amino-acid treatments. The toll on the parent is serious and calls for them to get help and support, including counselling.
Education – schools are few and far in-between. Government funded education is very limited. A parent is faced with having to take children to independently run schools and centres, at substantially higher cost. Even then, the school may not be equipped to adequately respond to your child’s specific needs.
There are very few schools that focus only on Autism, instead all children with any disability are clubbed together. This becomes very frustrating for a child on the spectrum, because their main disability is sensory and communication based and may have minimal or no intellectual disability.
My peace and strength to avoid being overwhelmed comes through talking to other mothers and creating platforms for us to share our collective journey, share best practices, laugh and cry together. The more open I allow myself to just be, the more hopeful this journey becomes. There is much that we can achieve for ourselves by ourselves. As parents we need to marshal up and empower those around us to become allies and expand their world to be more inclusive. We are after all our children’s valued and expert advocates. Opportunities abound, in our churches, in our schools, in our workplaces and in our society at large. It is in sharing our lived experience that others will know and do better.