What every parent with an autistic child needs to know

“I indulged a lot when I got my first job with a reputable company here in town. As a result, I got pregnant and gave birth to my autistic son. I think God punished me for my sins,” says Robinah, in a guilt-conscious mood.

Now, Robinah’s thought is “10 out of 10” wrong because God does not punish people for their sins anymore, after He punished Jesus for us at the Cross, but you have got to understand her confusion. She must find a reason for her son’s autism and because she cannot find any, she thinks it is a curse from God.  

Robinah is not alone. Just like so many parents, she suffers from misinformation or lack of information about autism, and this article is meant to inform people like her.

World Health Organiation (WHO) estimates that one out of 100 children worldwide, suffers from autism. In Uganda, according to a study carried out by the Uganda Bureau of Standards (UBOS), the central region has the highest number of cases at 106,749, followed by eastern region, with 101,334 cases. The north has the lowest number of cases at 80,705 people living with autism. The prevalence of autism stands at an estimated 88 people per 10,000 people in Uganda. 

What is autism?

Autism or autism spectrum disorder (ASD) are several conditions related to brain or neurodevelopment conditions. According to the Centre for Disease Control in the US, autism occurs more in boys than in girls. Autism has five subtypes, according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), published by the American Psychiatric Association (APA).

Signs of autism in children

Signs may appear between two to five years of a child’s life, with some appearing earlier. Some children may need long-term care, while others may be able to function independently with limited dependence on those around them.

 Most autistic children have slowed mental development compared to children their age. She can be 15 years old but in the body of a two-year-old. Most have difficulty keeping eye contact. Some autistic children have difficulties verbally expressing themselves and most delay communicating.

Some autistic children can obsess over something for a long time and tend to give a blank look when you are talking to them. Others become violent or aggressive when they do not get their way. They will hit something or somebody or get very upset when they do not like certain smells, tastes, touches, sounds or when their routines are disrupted.

Autistic children do not socialise easily. They like to keep to themselves. Depending on the severity of the condition, some children have difficulties with motor movements, there are repetitive actions such as pacing and routine behaviour: 

What causes autism?

According to the National Institute of Neurological Disorders and Stroke (NINDS), some causes may be genetic, others, environmental. Some suspected risk factors include: Childbirth difficulties, which lead to a lack of oxygen for the child. Premature births, having an immediate family member who’s autistic,certain genetic mutations and being born to a mother of advanced age (above 35 years).

Martin-Bell Syndrome- a genetic disease passed down from parents, low birth weight, metabolic imbalances,exposure to heavy metals and environmental toxins and maternal history of viral infections can also predispose babies to autism.  

Diagnosis and treatment

There are no cures for autism. However, support in form of therapies can alleviate the condition. These vary from one child to another, depending on the spectrum or level at which the child is. But generally, therapies include play, speech, physical, behavioural and occupational therapies.   

Accept the condition

A parent living in denial of their autistic child is harming themselves and the child. Some parents do not even want to admit that their child has autism. The earlier the parents embrace the situation, the better for their mental and emotional health.

Do research and seek medical care

 Parents with an autistic child need to get all the information they can about the condition. This helps to understand the child and the kind of care they need. Agatha Mia Asasira, an autism advocate and mother of a 14-year-old child with autism, suggests, “Not all problems are spiritual and caused by witchcraft; some are physical and need medical attention. Besides taking your child to a pastor to be prayed for, please also take them to a medical doctor to be examined and treated.”

Be available for the child

 Children are an investment the moment they get out of the womb. We have to make the best of time and energy when we are with them by giving them a firm foundation that can possibly help them be independent. Being available for the child also gives you time to know them deeply. Autistic children, depending on the severity of the disease, work well with routines, for instance waking up, brushing their teeth, and going to school. You can teach this routine for a while, until they master it. 

Social support system

 Parents caring for autistic children need all the support they can get from family, friends, neighbours and teachers to support the child. Identify people who will have a love for your child. Managing autistic children is a long and tedious journey and parents of such children can end up neglecting themselves. Work out, eat healthy meals, get enough sleep, read a book, or hang out with friends.

Pray for the child

 Duncan Klein Kirunga, whose son is autistic says, “A parent has to have a thick skin to raise an autistic child; the sleepless nights, the tantrums or delayed reactions from the child, can all be demanding on the emotional and physical energy of the parent. Praying for grace and strength to manage the situation is the natural thing to do.” He says it is vital for a parent to have positive affirmations on themselves and their child.