Man and woman smiling
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?

When Sam was diagnosed 28 years ago, I don’t think the public understood autistic people at all. Now, when I talk about Sam or people meet him, people say things like ‘my sister is autistic’ or ‘my friend has an autistic child.’ If Sam had a meltdown in public, for example on a shop floor, people would make negative comments and I felt as though our family was apologising all the time. Now, people are much more understanding. Society is much more open to talking about autism as I feel it’s more publicised. I hope it can continue.

Society is much more open to talking about autism as I feel it’s more publicised. I hope it can continue.

Have you received any support from the National Autistic Society?

Around the time Sam started school, I began attending a support group in Suffolk that used to have speakers talk about autism or their own experiences. The group got bigger and bigger, eventually becoming the Suffolk branch of the National Autistic Society.

How has the coronavirus outbreak (Covid-19) impacted your family?

Every autistic child and adult is different, and with Sam, as long as there is plenty of time to prepare for a change, he can usually adapt. Sam does however, have has difficulty understanding the changes to everyday society since the coronavirus outbreak, however. A holiday we booked abroad was cancelled, and it was difficult explaining to him it was because no planes were flying. Sam was very upset at the unexpected change and started humming for hours. He usually eats the same foods, for example he has Shreddies cereal every morning, so I’ve had to stock up on food he likes to keep his routine and hope certain products continue to be available in the shops, although this hasn’t affected us very heavily yet. Although Sam can sometimes find it difficult to process information, I do think there are some things we are not aware he is understanding. He also likes to watch the politics talk programme, Andrew Marr, every Sunday morning.

Handy tips to help you support autistic people

With the help of thousands of autistic people and their families, we have created some handy tips for the public to follow.

Read the tips here