Different, not less. |22 April 2023

My four-year-old is non-verbal, still wears diapers, generally avoids eye contact, does not use his toys in a functional way, isn’t interested in interacting with others, finds comfort in repetitive behaviour and is prone to meltdowns.

There is a diagnosis that explains it.

The A-word. A 6-letter word. A word that’s thrown around a lot and yet not nearly enough. A scary word. A life-changing word.

Sébastien was about 18 months old when I started to notice some ‘red flags’. As an over-eager first time mum, I spent considerable time keeping track of developmental milestones and realized that in terms of communication/speech, my son was delayed. Worst, there was regression in that, and other areas too. I was terrified but plucked up the courage to see the pediatrician. It was the first time the word came up. But, although there were some discernable ‘autistic traits’, it was too early for a diagnosis.

The official diagnosis came about a year later. Autism. Severe Autism. We were heartbroken. We felt every single emotion possible. Sadness. Relief. Fear. Desperation. Grief. The last one is a bit tricky. There is long standing debate in the Autism community, with many

offended at the thought of ‘grieving’ your child. It is argued that Autism is a way of being and as such cannot be separated from the person and thus grieving parents are thought to be mourning the existence of the autistic child. We will spend our lifetimes making sure Sébastien knows we do not subscribe to this kind of grief. We celebrate his existence but honestly? We grieved following the diagnosis. It had taken me a while to get pregnant. I had a high-risk pregnancy and we had long decided we only wanted one child. We had plans for this child. We pictured our

future raising our sweet baby boy. Never once did we factor in Autism. We pictured him sharing our world, going on playdates, an adventurous, chatty toddler, we pictured fun family vacations, we pictured him playing sports, loving books, doing well at school – not doctors’ offices, not

therapies, not endless battles for early intervention resources and certainly not, not having a school suited to his special/additional needs. The minute he came into the world, we wanted the world for him. A world without hardship, a world where we would not have to be terrified of

bullies, a world where he would be included. The one we live in is far from that.

We didn’t fall apart though, our little boy depended on us. Post-diagnosis, we wasted no time, charging full steam ahead – we read, we researched, we talked, we planned. We accepted our new normal. Every paper, book, blog, Facebook post, comment and even the smart doctors we saw were all clear that ‘early intervention is key’ and yet we quickly realised that in practical terms such early interventions opportunities were severely limited in Seychelles. Heartbreak all over again. We were failing our little boy. But we don’t have the luxury of sitting down, complaining, and giving up. Since the diagnosis, we’ve been in the boxing ring with autism, we circle and jab each other, trying to gain whatever ground we can against each other, but autism needs to know we are fighting. We are determined. We will win.

Life with a side of Autism thrown in is challenging to say the least. We aren’t doctors or therapists. We have no instruction manual. It’s expensive. It’s tough. It’s made even tougher dealing with the stares, misunderstandings and sometimes the daring but ignorant comments.

This isn’t a gloom and doom story though. Sébastien is still our beautiful, sweet, smart, energetic (we could be really rich if we could bottle and sell some of his energy) boy who we love fiercely and entirely. He just happens to have autism. It is a part of him, but it does not and we refuse to let it define him. We see the able not the label. His neurology may be different, he may love, communicate, learn, behave, play, eat differently but he is not less. He is amazing and he has taught us so much. He has given us new perspective. He has taught us compassion, patience, and humility. He has taught us to accept differences.

Ahh acceptance. Another A-word. As one of the 90,000+ Seychellois, Sébastien and others like him on the spectrum have a right to live life to its highest potential. So, whether you are a doctor about to consult a child, a bystander to a meltdown in STC, a parent of a neurotypical child, a service provider, a legislator deciding on budget allocated to resources…choose your words and actions wisely and kindly. Acknowledge

and accept that we are all created differently and have different strengths and challenges. Accept that different is not less. Accept that your discomfort with differences is far more your problem to overcome rather than the ‘different’ individual. A more accepting, inclusive Seychelles starts with you.

Sylvie Faure

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Editor’s Note:

This article was submitted to the Doctors’ Association Seychelles (D4DS) in 2018/2019 but remains relevant today. Not only does it deepen our understanding of the everyday life experience of people with autism but highlights the challenges that still exist in service provision for autistic children and adults in Seychelles.

If you have been affected by any of the issues raised in this article or need support, please reach out to Autism Seychelles, a non-governmental organisation dedicated to supporting children and adults with autism and their families, on:

Tel: 2 593 311; Email: autism.seychelles@gmail.com

Facebook: https://www.facebook.com/PearlSeychelles