In case you didn’t know, April was Autism Awareness month – something I wasn’t aware of till this year (YES!) even though I have an autistic brother.
This will be the first time I am speaking about the fact that I have an autistic brother – maybe because there hasn’t been an opportunity to. Or maybe because I am now working with GUBA Foundation on the #AutismIamNotaStigma Campaign which I am the project coordinator.
Autism Spectrum Disorder (ASD) is a disability which is mostly diagnosed in the early stages of lives in children – mostly between 2 to 4 years old. Children with autism normally face problems in communication & social interaction, learning and may also have repeated behaviors or interests, difficulty in paying attention, concentrating among others. The challenge in dealing with people with autism varies from one person to the other. In other words, the autism spectrum is wide and symptoms & behaviours differ as well as challenging behaviour they may exhibit. Whilst others may be enrolled in ‘special’ schools to manage the condition, others are also able to go through the ‘normal’ school system just like any of us. There are many people especially in developing and even developed countries who may be autistic but may just not know yet because they have not been diagnosed yet.
My brother was diagnosed with autism when he was about 3 years old and since then it has been years of trying to adjust to the condition and to accept that this is going to be his way of life – something most parents find it hard to do (which I will not blame them). My brother is sweet and loving but he can be challenging to deal with when he has his upsetting moments as someone living with autism. The worst is when these behaviours are exhibited in public – because sometimes you don’t know what to do! But I have grown to accept this part of him.
There is so much stigma about the condition within the black community and that is why this project is close to my heart and we are looking forward to reaching as many people as we can with this especially when people equate autism to spiritual or some supernatural causes. There are so many examples of this which are personal and I would not like to go into detail but hear me out! Autism is a medical condition just like you have PCOS, dyslexia, sickle cell anaemia, lupus, among others. Many parents including mine have suffered from hideous comments and talk by people within the Ghanaian community because they have an autistic son – which is unfair and pathetic. Churches, schools, community groups and society as a whole within the Black community need a lot of sensitization on this condition so some pastors can stop blaming grandparents of being witches/wizards responsible for the condition or others accusing siblings of being responsible. Ignorance is no longer an excuse because these strong and false accusations have and can break homes and create a lot of confusion within families. Some marriages have broken down as a result of this condition and mostly mothers are left alone to deal with it all alone which is extremely challenging. Despite the support available especially in developed countries and almost non-existent in developing countries (which is gradually changing), it is still not an easy condition to deal with.
The truth is autism has no cure – it can only be managed. It can take its toll on parents, carers, siblings, community among others including the stigma families with autistic children face but as a community, we need to understand that it is not these children’s fault they were born this way. The only thing we can do is support families and children with autism in any way we can to help destigmatize autism.
Recently, the GUBA foundation showcased the art work of Ama Antwiwaa Amponsah, an 11 year autistic girl who has incredible talent. For someone who is non verbal, it is inspiring to see how she uses art as a form of communication to the rest of the world. The successful exhibition of Ama’s art work goes to show the incredible talent that can be uncovered when we celebrate autism in all spheres. We definitely need all hands on board to destigmatize autism and this is exactly what this project is preaching. Check out the GUBA Foundation website and our Instagram page to follow our work and upcoming initiatives in destigmatising autism. #AutismIamNotaStigma
Thank you for reading. Stay tuned for another post soon!
Gertrude says...... 