mother and son photo in the spectrum design, quote

We know 99% of people 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 Emma, mum to five-year-old autistic son Ethan. Emma tells us how Ethan, a fan of Strictly Come Dancing, re-watches the scoring for a sense of familiarity and security…

Why did you seek an autism diagnosis for  Ethan?

When Ethan started school, he really changed. He was completely overwhelmed. He struggled to socialise, and would come home completely unable to do things by himself and eat his dinner. I felt positive when he got his diagnosis, it’s given our family the tools to support him.

 What is the impact of unexpected change on Ethan?

Even a little unexpected change can change a day completely. Ethan really enjoys going on theme park rides and one day, we went on one we had been on lots of times before. We thought we knew what to expect. But, halfway through the ride, a tiny piece of the track had changed without our knowledge. Ethan was very upset on the ride and afterwards he was staring blankly and didn’t enjoy anything else for the rest of the day.

 How does your family support Ethan?

We have a daily routine and a weekly plan so he can see what’s coming each day, to the point where I write down what’s for dinner. We also have an “oops” card, a technique my husband and I learned on a National Autistic Society two-day course run by its Surrey branch, for parents of newly-diagnosed children. If something does change unexpectedly, Ethan finds it reassuring to know I, as his mother, have acknowledged the change and as soon as it’s over everything will go back to normal. It doesn’t take away the difficulty of the change, but it helps him to see I’ve acknowledged it. If Ethan is in a social situation for a long time, he becomes overwhelmed, and as soon as we get somewhere he asks 'when are we going home?' We give him an end time so he knows what time we are leaving. 

Smiling boy

Tell us about  Ethan’s love of Strictly Come Dancing…

Ethan loves Strictly – it’s one of his special interests. He finds the familiarity of the format comforting. He loves numbers because they’re always the same, two and two is always four. Initially, Ethan was only drawn to the scoring, but soon it became the whole programme, because Ethan would like certain songs. With Strictly, even if the format changes slightly, for example someone standing in for one of the judges, they tell you the week before and so he has time to prepare for the change. We recorded it, so we were watching it two or three times a day. It acted as a comfort for him at the end of a difficult day because he could come home and watch the scores, which visibly relaxed him. 

Watching the Strictly Live tour at the O2 was a bit of a gamble. We didn’t know if it would go well, but we felt so strongly that if it did, Ethan would love it. We showed Ethan photos of the O2, a schedule of the day, and made him a special chart to fill in his scores. The O2 provided us with a plan of the show beforehand, the timings when everything was going to happen, and someone led us past the queues, so he didn’t have to wait. We got special permission to take in snacks and drinks and they even changed our seats to the front row so Ethan didn’t have many people around him. It was a really special day and the staff were amazing, it made it much easier.

Has your family ever faced judgement for “over-reacting”? 

I have faced judgement over the choices I make for Ethan, for example leaving somewhere early or not joining in for the whole of a day’s outing. I feel like the people making those judgements just don’t understand Ethan’s struggles. Ethan is good at ‘masking,' a term used by autistic people and their families for hiding things causing discomfort or anxiety. I want to say 'you don’t see the energy it’s taken Ethan to get to this point and I’m not going to fit him into the box you expect children to fit into because he isn’t going to fit into that box, he’s got his own perfect shaped box.’ 

How can society change to support autistic people?

I think society is already changing. There seems to be a lot more autism-friendly events, but I think it’s just accepting our decisions as parents and allowing us to make adaptations for Ethan and other autistic people. I feel very strongly that autism should not been seen as negative. We’re really proud of Ethan, I wouldn’t change him for anything. The only thing I would change is a society that helps him feel more supported with the things he struggles with.

The only thing I would change is a society that helps him feel more supported with the things he struggles with.

 Have you ever received any support from the National Autistic Society?

The National Autistic Society has been fantastic and really helped us. The charity’s Surrey branch is excellent and sends out literature if you need it. Having a community, including other mums of children Ethan’s age I can talk to online and read what they might be struggling with, has been really supportive.

How have your family been coping with unexpected change during the  coronavirus  (Covid-19) outbreak? 

Coranavirus has thrown lots of unexpected changes our way, as with everyone. For now, we are trying to keep things as normal as possible for Ethan. The difficulty is not having a clear end time, as he likes to have a clear finish. We are using social stories and visuals to try and explain why plans have changed and why some food isn’t available, and we have prepared a new daily routine for him to follow during the week. As school causes him a lot of stress, he’s quite pleased with the closure for now! We are going to try and take each week as it comes and try and make things as smooth as possible for him.

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