Stories from the Spectrum: Sam and Angela
We know 99% have heard of autism but only 16% of autistic people feel the public understand them.
During World Autism Awareness Week 2020, we are interviewing autistic people and their families about how they experience feeling intense anxiety in social situations, needing extra time to process information and instructions, communication difficulties, anxiety around unexpected change or sensory sensitivities with sound smell, light, taste and touch – the five biggest things autistic people and their families told our charity they most wanted the public to know about autism.
Our charity also asked autistic people, their families and carers to tell us how they are responding to the coronavirus (Covid-19) outbreak during this difficult and unprecedented time. For the National Autistic Society’s latest guidance and advise about autism and coronavirus (Covid-19), visit our dedicated resources webpages.
Meet Angela, mum to Sam, a 30-year-old autistic man with high support needs who uses a communication device and loves to garden. Angela talks to us about what life was like for their family when Sam was growing up and how Sam’s Dynavox supports his communication with his family, friends and carers…
When was Sam diagnosed as autistic and why did you seek a diagnosis for him?
Sam was diagnosed when he was two-years-old. He stopped eating and became quite rigid about getting into the car and putting his coat on. His speech was also not developing at the same rate as his peers. I took him to the GP, who referred him to a hearing specialist. The hearing specialist carried out some tests before referring Sam for an autism assessment. Three weeks later, the autism specialist called me into a room and told me Sam was autistic. I collapsed into tears as I didn’t understand what autism was. It was a huge bombshell.
What was school like for Sam when he was growing up?
Our family wasn’t given a choice of school for Sam, we were told ‘it’s this or nothing.’ There were lots of children in his class and one teacher on their own. It was a totally inappropriate environment for him, which he found very stressful. Fortunately, we were then able to choose a National Autistic Society School and he began boarding from Monday to Friday at Radlett Lodge in Hertfordshire. He was really supported there, and when he came home our family could call the school for help or advice.
How did Sam start using his communicator?
Sam started using his communicator when he was 11-years-old. I saw another child using a communicator, where they tapped a word or picture. It thought it would be ideal for Sam, but was told it would not be suitable for autistic children as ‘autistic children don’t find the need to communicate’. After researching, I found a device called Dynavox and launched a campaign raising around £6,000 to get Sam the equipment, as I knew it would be good for him. The campaign was reported in the local paper. Soon after, Dynavox devices became available through our council.
What does Sam like to do during the week?
Sam really enjoys doing horticultural work. For two days a week, he goes to a scheme called ‘Growing Places’ with other adults with disabilities. He also goes to a private garden and tends to an allotment with other adults with disabilities. When Sam was young, he struggled to fit in at nursery and I worried he was isolated, but gardening with other people has been really supportive. Sam also plays bowls, where everyone knows Sam and makes him feel like part of the team.
Has your family ever faced judgement from other people?
Sometimes, people say ‘hello’ to Sam in public and he ignores them. When this happens, our family try to explain that Sam is autistic, but I don’t think lots of people understand what that means and think he’s being rude. This ignorance can feel upsetting.
How can society change to support autistic people better in the future?
