As society becomes more aware of neurodiversity, our understanding and focus remains very often on the children affected.
Yet the parents who live alongside them can get left behind.
One mum is on a mission to raise awareness for all family members involved so that everyone gets the compassion and support they deserve.
Speaking exclusively to Uspire, Samantha Tomlin opened up about her teenage son Henry who has autism and her relationship with him.
Samantha said: “It was a long process, three years from start to finish, before he was finally diagnosed at eight-years-old.
“I knew he was on the spectrum before it was made official, but I knew it meant we’d have access to more help with school and additional support for him with the diagnosis.”
Autism is not considered an illness; it means the brain works in different ways from other people. The term ‘on the spectrum’ refers to everybody with autism being affected differently, with some needing little or no support while others may require carers.
People with autism may find it hard to communicate with others; they may find it hard to understand how others think or feel; they may find things like bright lights or loud noises overwhelming; they may get anxious or upset about unfamiliar situations; they may take longer to understand information; they may do or think the same things over and over.
Talking about her experience with coming to terms with the diagnosis, Samantha said: “I think it can be very isolating having a child on the spectrum.
“The idea of knowing how upset your child will get in normal situations, whether socialising or in shops and they have a meltdown, it can make you feel like you want to withdraw and just keep them at home where you know they feel safe.”
Henry has been subject to judgement from members of the public for his reactions, in particular once when he was at a bakery and his brother accidentally brushed his head.
Any light touch to Henry can feel uncomfortable, and he described the sensation as feeling ‘like a burn’.
Sadly, an older couple behind them sat tutting and shaking their heads as Henry began screaming. Even when Samantha explained he had additional needs they were just relieved when she took him out the shop so they didn’t have to witness his behaviour.
Samantha – who works as an actress and model; and played the mother of Super Hans’ twins in Channel 4 Show Peep Show – believes with knowledge comes power and the condition has become somewhat easier to navigate as Henry has got older.
She continued: “I think it gets more manageable the more you accept it’s not predictable, and that all children change as they grow older and can communicate better.
“I found the younger years the hardest as he didn’t have the words to express what upset him, and now we can talk about it.”
Samantha continues raising awareness so that other parents and carers can connect with the young people in their life as best as possible.
She is also one of the ‘Parent Champions’ for the National Autistic Society, recently offering advice to others on how to avoid anxiety-inducing situations such as Christmas.
While society still tends to view autism as something that is problematic, Samantha is keen to shine a light on the positive traits that make individuals with autism unique.
She explained: “My son is a joy and has the most wonderful imagination and memory.
“He inspires me as he is full of joy every day and just loves life through simple things, such as scooting in the park and going to school.”
Asked how she would like to see education around autism change so that society has a better understanding, Samantha said tailoring learning for everyone is key.
She concluded: “Visual learning is wonderful for all children, especially ASD [autistic spectrum disorder] kids, so early years with this can help process undiagnosed children.”
Visual learning is a style of learning in which students use images, graphics, colours, or maps to communicate ideas and thoughts to remember material.
For example, a visual learner would learn to fix a car better if they watch an instructional video rather than listening to an expert explain the process.
For autism support, click here: National Autistic Society.