Raising an autistic child

Don’t hide away, educate your friends and family and ask for help

Dayna Clarke speaks with SAMANTHA DIXON GICHINGIRI whose first son, Kobi, was diagnosed as being on the autism spectrum to share her experience as part of April Autism Awareness

The month of April is almost over, and many of us may have come across ‘April Autism Awareness’ activities during this month or perhaps noticed Mdina lit up in blue. But what is it like to be the parent of a child with autism? According to the National Autism Association, the disorder usually presents itself in children before the age of three, and boys are four times more likely to have autism than girls are. The association says that autism “impacts the normal development of the brain in the areas of social interaction, communication skills and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions and leisure or play activities”.

Many parents who have a child on the autism spectrum are confused by their child’s behaviour and experience profound struggles on how to best address their son’s or daughter’s needs. I recently caught up with Samantha Dixon Gichingiri whose first son Kobi was diagnosed as being on the autism spectrum. Samantha kindly took the time to explain what it is like to be a parent of a child with autism.

What made you start to suspect that your son might be on the autism spectrum or have something else going on?

He was my first child and I had little experience with babies so I did not see any ‘signs’. Since having my baby girl, I can now see that even from birth he was not as alert and responsive as he should have been. When he turned two, I went back to the UK (we lived in Thailand at that time) and people began to comment that he may have autism. He still was not speaking when I compared him to other kids his age and, fuelled with some internet research (good old Google), I suspected it was autism or something similar.

What did it feel like as a mother when you couldn’t fully understand your child’s needs and how to help him?

It was and still is hard, especially when he gets really upset and I am not sure what is upsetting him. We have learnt to understand most of his needs, and what his noises mean, but there are times he gets frustrated when he wants something or is trying to show us a problem he has but we cannot understand what it is. We usually work it out eventually – but it is hard to see him struggling.

In addition, it is very tiring for us parents, sometimes frustratingly so, even though we know he can’t help it. I would feel envious of friends whose kids could talk. I would love to know what Kobi thinks about things such as what his favourite colour is. At school recently, they had a treat day and were allowed to wear their favourite colour. I dressed him in blue, but felt a bit sad because I don’t know what his favourite colour is.

When did you decide it was time to seek professional assistance for Kobi? How did you go about finding resources in Malta?

When we arrived in Malta, we sent him to nursery in the hope that interaction with other kids his age might help him to talk. It didn’t. It was after this that I took him to the doctor. I remember waiting for ages with the little ticket they give you and when it was our turn, the doctor said he was taking a break. By the time he came back, my heart was in my mouth and I just blurted out ‘I think he has autism’. The doctor looked a mixture between being confused and not interested and asked why I thought that. I told him he is three years old and doesn’t speak. He said “What, nothing? No words?” I said yes – no words. He scribbled down something and said, “Well you need a speech therapist, then don’t you? Go upstairs and give the speech therapist this paper”. I took the paper upstairs and searched for the room, knocking on the frosted glass door on the verge of tears. A young lady named Nicola opened the door and asked if I was okay. I guess I looked a sight with Kobi in my arms about to burst into tears. I asked her if she could help me and explained what the doctor said, scared that she would turn me away to someone else. She didn’t. She was lovely and invited me into her room, sat me down and listened to me. She spoke to Kobi and did a quick assessment, saying that we would schedule a more in-depth assessment the following week. She told me she would be giving him speech therapy lessons and would refer him to the CDAU to be assessed for autism. She was amazing and helped us so much with following up, and chasing people. We were assessed by a lady at the CDAU and as Kobi couldn’t do most of the test, she said she he was classed as ‘highly likely to have autism‘. It broke my heart when she handed him blocks to stack and he did not know what to do; then she took them away and he cried.

Tell me a little about the things trained professionals have done with your son to help get him to the point where he is now. From what I understand, he seems happy and functioning well...

He had a great guy called Nicholas who visited us at home. He was an early interventions teacher and did amazing things with Kobi. It was great to see Kobi able to sort colours, complete puzzles etc. which he couldn’t do before. He really loved these sessions. Occupational Therapy at CDAU was also great and he enjoyed these as well, improving his sitting tolerance. He has speech therapy now at school and has a lovely LSA and a kindergarten teacher who have really worked hard with him. His LSA Karina told me after a few weeks he had gone from sitting for two minutes in circle time, to lasting up to 25 minutes. He had never sat still for that long before. He absolutely loves school and can’t wait to go each day, which is thanks to his teacher and the LSA. All the services are wonderful, and we are very grateful for them. The only thing I wish for, if it is possible, is that they are more frequent. Speech therapy is once a fortnight, OT once a month and Early Interventions teacher who visits him at school, once a fortnight. I understand these are government funded but I do wonder how much he would improve with more frequent treatments and therapies.

What has been most helpful for you as a mother navigating the joys and struggles of having a son with autism?

Online groups, getting experiences and support from other parents who have kids on the spectrum. Also educating myself about autism and seeing him do things I didn’t think he would be able to do. Seeing him learn, however small the thing he learns is, really means a lot.

What has been the hardest thing about having a son with special needs? What has been the biggest blessing?

The hardest thing is probably not knowing what the future holds for him, as well as trying to navigate the different options available and differing theories and ideas, as well as the expense. Not being able to afford frequent private interventions and feeling like there is so much more we should be doing to ‘cure’ him. The biggest blessing is that he is a very happy boy, and little things make him so happy. Watching a motorbike goes by brings him great joy, being outside, holding a spoon (he has a thing for spoons and kitchen utensils). He finds joy in everything around him.

What advice would you give mothers and fathers who are starting this process of diagnosis and may have a child that is on the autism spectrum?

Be kind to each other. Having a child on the spectrum is hard on the whole family – it is mentally and physically draining at times. If you think your child might be on the spectrum, don’t listen to professionals that tell you to ‘wait and see’ that maybe your child is just taking a little longer. Though this may be true, early intervention is key and the sooner you get that diagnosis the sooner you can start getting help for your child. Also, don’t give up hope. Depending on where your child is on the spectrum may mean facing difficult realities and the life and future you dreamed your child would have may not be possible. On the other hand, there is always hope. My boy has and continues to surprise me with all he can do. My aim for him in life is for him to be content and live a happy life.

I hope he will be able to live an independent life as an adult, but I have made peace with the fact that he may not. I still have times when I break down and feel it is too much and so unfair, but the good times far outweigh the sad and difficult times. Seek out support; I found speaking online to other parents and groups of people who have experience of kids and adults on the spectrum really helped. You are not alone. Don’t hide away, educate your friends and family and ask for help. And good luck.