This April has been designated as 'Autism Awareness Month'. Around 80,000 people in the UK are thought to be on the autism spectrum. Autism describes a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them. It is estimated that together with their families, around 2.8 million people's lives are touched by autism every day.
Janelle Victry Pamphile, CEO of HOPEWITHASMILE and Brent Community Champion, spoke about the daily struggles she had in taking care of her autistic son.
"It was a very painful time for me and my family at first. My son was 3 years old at the time; he was more judged for his behaviour than his illness. Getting him diagnosed was so stressful but he was finally diagnosed as a high functioning autistic child. That was the day I dreaded. No one wants to hear their child is autistic.
"Taking him to church was not a pleasant experience at all. At first my son did not like to be touched or looked at by people, not even by some of the people he saw daily. Prayer saw us through those difficult times. I surrendered everything to God and asked Him to take control."
Today Janelle believes that 'autistic children are amazing'. She says, "At my house you don't have time to feel guilty, you don't have time to feel sorry for him, for yourself, or your family − it's time to get down and busy."
Madiba was diagnosed with autism at 5 years old; he was non-verbal at 3 years, now he can speak fluently. Sadly, there are lots of children and teenagers who have not been diagnosed and all I want to encourage parents to do is keep pushing. I changed my son's diet and made him feel so important and told him he is such a special part of the family. I also told my husband this is not our fault. Yes! we have a special needs child and we need to be positive; God is at work.
I took him to speech therapy and spoke with other parents, doctors to gather information. I took him swimming and football is his favourite and his speech improved. I planted a 'seed' in my son to believe in God and himself to 'think BIG!'
We have family time around the table when we eat; I would ask everyone in my house to express their feelings and what was bothering them. This opened so many doors and Madiba would love to share his feelings and as a result his confidence increased.
Hope came in the form of an angel − a sister at my church who is a teacher called Faith saw something in my son Madiba and nurtured him into a very calm child using Lego toys. Autistic children are very creative and my son looked forward to getting his Lego every Sabbath from Aunty Faith. Eventually my son would sit down during church service. They marvelled 'Look that little boy is now more peaceful than us'.Madiba is now a child ambassador at his school and the mayor of Brent thanks his parents for not giving up.
In celebrating this Autism Awareness Month of April, Janelle's moto is 'I want to let people know that autistic children are amazing. If we can change the way we think, we can change our lives'.