Autism: The disorder that may steal your child’s happiness

In the first 20 months of his life, Stephen hit every developmental milestone: he crawled, walked, and talked. He was within the age-appropriate weight and height percentiles. By all accounts, he was a normal child.

And then, over a period of six months, Vincent and I watched as our once active and talkative toddler gradually develope into a lethargic and silent little child. His vocabulary became limited; the 20 words in his vocabulary began reducing to 10 and five. He lost his ability to make eye contact, and no longer showed interest in playing with other children or toys.

Apart from turning switches on and off and opening all the doors in the house, his favourite activity was to endlessly spin and clap his hands. He was very particular about his food and seemed comfortable eating the same food daily.

Any sudden change in his routine affected him so much that he would exhibit full-blown, horrific tantrums that looked and sounded like nothing I’d ever seen. Something was definitely affecting Stephen’s overall development. It seemed as if one by one, all of the circuit breakers in his brain were clicking off.

By all means, we were very confused and disturbed by what was happening to our beautiful boy. Each time I expressed concern, I received a lot of varied, though well-meant responses like: “He is a boy, boys develop later than girls.”

Others associated the occurrences with witchcraft in the family, while others attributed it to the effects of transition since we had just returned from the US. Nevertheless, I did worry and I knew deep inside that something was wrong. Then one day, I stopped listening. I reminded myself that I was Stephen’s mother, after all, and therefore knew my son better than anyone else; and that’s when I started listening to what my instincts had been telling me over the months.

What is Autism?
Autism is baffling. Initially it seems a complex condition.The first time I heard about autism, I thought that someone had just made it up. Autism unlike malaria, flu, cough, or high blood pressure wasn’t as familiar. It was not until I was confronted with this word later during my counselling course that did it make sense.

At the time we were studying the different disorders in children and autism was featured. I then decided to do a research on autism for an assignment. Ironically, it was this information that came in handy during the early years of Stephen’s changes. Eventually, based on my experience and training, I was the first one to identify and confirm that my son had autism. I then gathered the courage to share it with family members, though not many people believed me, thinking that I was projecting my profession’s bias on him.

There were also those who blamed it on vaccinations. At this point we were fired-up to find the correct intervention in order to rescue our son from the snares of autism, and we no longer wanted to distract ourselves with thoughts concerning the causes of autism anymore. The most current term for autism is Autism Spectrum Disorders (ASD) and there are five diagnoses: Autistic disorder, Aspergers, Childhood Disintergrative, Rett’s Disorder, and PDD-NOS (Pervasive developmental Disorder not otherwise specified). ASDs are much more complex, with a variety of symptoms, combinations and varying degrees of severity. That means that each individual with ASD is unique, with a distinctive personality and individual characteristics.

ASD is not a disease, such as pneumonia or high-blood pressure. (A disease is defined as an illness or sickness where typical physiological functions are impaired.) An ASD is a developmental disorder – a medical condition in which there is a disturbance of some stage in a child’s typical physical and/or psychological development, often retarding development. ASD often shows up in the first years of a child’s life. It can affect a child’s abilities to communicate, use his or her imagination, and connect with other people – even parents and siblings. As the name implies, ASDs are spectrum disorders ranging from mild to severe. We sought other medical opinions in the US and received further confirmation that indeed Stephen had an ASD. When you first learn that your child has autism, you go through a myriad of emotions--- fromdenial , anger, bargaining, depression, to acceptance.

Our goal is to help Stephen live an independent life and experience the fullness of life, like any of our other children would. It is a lot more work considering his challenges, but we hope to see progress in his life. Some of the milestones that Stephen has made are: fastening his shoe buckles, dressing himself up, brushing his teeth, feeding himself, taking his plate to the sink, going to the toilet, and playing with his siblings without harming them. All these skills, we have had to work on. This year, our focus is on teaching him how to bathe himself, increase his vocabulary, and teaching him social etiquette (such as greeting people).We try to set small goals that are achievable. For us, this is something that would take a whole year to accomplish.

Today is World Autism Day and my heart goes out to all the parents out there who have children with autism or any other disability. Some of you are new comers to the world of Autism, while others have battled with it and still are. I want to say there is hope for you as a parent and for your child. Hope is a process and the process begins here;
1. Make sure that you are just not labelling the child. Get a diagnosis.
2. Realise that your child is a gift from God and needs to be loved unconditionally. Put thought into how you treat him and present him that is, grooming and finding proper clothes.
3. Find out what the strengths of the child are and try to nurture them. Turn his area of weakness into a stepping stone for example, teach him how to play with others especially since they are socially impaired.
4. Don’t be afraid to set goals for your child. Do you want him to be an independent child? Do you want him to learn how to read and write? Do you want him or her to use the toilet with minimal supervision?
5. If you would like to take him to school, find out schools that would help.
6. Because the child has a disability, he should neither be isolated nor be overly protected. They should still be loved the same and if there are other children, they should be treated equally. The child with autism should not bring stress into the relationship.
7. It will be nice for all the families to be involved (for example be educated on autism, as well as those close to the child so that they know how to relate with them and understand them). Parents also need to educate themselves on Autism.
8. Recognise that parenting is a team effort. Both parents need to be involved. Each parent has a unique contribution that they bring into the life of the child.
9. Parents and care givers should try to look around to be part of a support group, such as Uganda Parents.
10. Autistic children tend to be very particular about what they want to eat and that in the long run can affect their immunity. Make their health a priority, try to vary their food, give them vitamins where need be. Our Stephen has been on a 100 per cent raw food diet ( fruits, vegetables, seeds and nuts) for the whole year now and this has kept us away from the doctor.
11. These children have been given to you by God, pray for them, (I read scripture to Stephen and have taught him how to pray. I have bought him a Bible which is on one of his favourite books – he opens it every day).

Of course, this is not an exhaustive list of steps to take, but it is a practical and basic place from which to start. There is a Chinese proverb, which says: “The journey of a thousand miles begins with one step.”Let us begin where we are. Begin by celebrating your child today!

Happy Autism Day.

The writer is a mother of a child with autism and a professional Counsellor (MA)

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