Two women and a cat
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 Judith, mum to Anna, a 28-year-old autistic person with high support needs who loves volunteering with animals. Judith tells us what sensory sensitivities are like for Anna and her long journey to receiving the right support…

When was Anna diagnosed as autistic and what made you seek a diagnosis?

My husband and I lived all over the world teaching in international schools and Anna lived the first three years of her life in Tanzania, then Taiwan for four years, then Holland for another four before we moved back to England. Anna began to show differences to her peers when we lived in Taiwan and was diagnosed with ADHD at five-years-old. School continued to be difficult for Anna when we moved to Holland and she received an autism diagnosis from a children’s hospital that said she would be better off being in an institution! We walked away and pretended it didn’t happen, but we knew we had to give Anna some roots and put her first so we came home to England and started jobs in an international school we still work in today. I teach drama and music and my husband teaches art. Anna was given a place too, as we didn’t know what else to do because we had just settled in the country, but she had a really rough time. Eventually, she had an assessment with a GP who was the first person to treat us kindly, and she recommended an appointment with the local paediatric consultant who was fantastic. We didn’t know a school for autistic children was very near us, however our local authority wouldn’t assess Anna because she was going to a private school. We were on the verge of going to a tribunal when, what a miracle, the authority suddenly decided Anna didn’t need an assessment after all about three days before. Anna got her place at her new school, which was so much better.

What is experiencing sensory sensitivity like for Anna?

As Anna is getting older, she can explain things to me, which is fantastic. If I ask her ‘what’s the matter’ she can say ‘it’s a sensory issue’ or tell me she’s feeling uncomfortable. I asked Anna what stands out for her mostly, and she said being too close to people or being in crowds.

How is Anna supported getting out and about?

Anna loves going shopping at the shopping centre, especially toy shops and The Entertainer. We’ve haven’t gone to the Autism Hours at The Entertainer because we’re both busy during the day, but she’s aware they hold them and says it’s really good idea. Anna also loves going for a coffee and something to eat. If anybody talks to her or addresses her directly however, she finds it really hard and sometimes can’t answer.

Anna was being supported by an agency who sadly shut down recently, but she used to have days off from her day service and one of her personal assistants around the same age as her was a man who was fantastic at encouraging Anna to go into shops by herself, which she had never done before. He would wait outside and she would go in and do the shopping she wanted. The Marks and Spencers near us is remarkable, and if I go in with Anna now the staff know her and ask her how she is.

What does Anna like to do during the week?

Now Anna goes to a new day service four and a half days a week and gets incredible support. It’s not just for autistic people, it’s for people with learning differences all around her age and they do lots of activities like woodwork, drama, Zumba and going to the gym. Anna is also a trained volunteer at the RSCPA. Cats are her special interest, she absolutely loves them. We did the online and hands on training as Anna needs somebody to go with her and she goes into the pens and socialises with stray cats and kittens before they are re-homed. The cats absolutely love her, they come running to her.

Woman hugging a cat

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

When we lived in Holland, a man called Anna ‘stupid’ in Dutch when she was very little, maybe about seven or eight, because she trod on his toe as she’s a little bit clumsy. I was so angry. I said ‘don’t you ever call anyone like my daughter stupid again.’ He went as red as a beetroot. Now Anna’s a little bit older, I’ll ask her if it’s okay to explain to people she’s autistic because I feel it’s very important to give her respect and make people know that if I’m saying she’s not to be spoken down to. Another person said to me more recently “your daughter just trod on my foot!” when we were shopping in IKEA and I said my daughter is autistic, she finds it really difficult to judge the space around her and your remarks really don’t help.

Do you have any tips for autistic people, their families and carers to manage sensory sensitivities in every day life?

Ask an autistic person face to face what makes them uncomfortable, and really notice it yourself. Don’t try to change them, accept their differences. If Anna feels like she can’t go to a particular shop because of the lights, don’t say ‘come along it’s going to be fine’ or make an autistic person feel uncomfortable through it because it’s a really horrible feeling — I’ve really grown to appreciate that, being with Anna for so long. Many times we’ve been to the theatre because Anna loves live performances and music, but we’ve had to leave at the interval and put her first, because of the volume of people around her or the urge to get home where she feels safe.

Don’t try to change them, accept their differences.

How can society change to support autistic people in the future?

I would like to see an increase in the public’s knowledge of autism. I educate the children I work with about autism and am very open about having a daughter who is autistic. I think you’ve got to really educate people from the bottom up so they will accept differences in people and seeing me as one of their teachers and mentors talking about it makes it a lot more open. I feel now-a-days lots more people understand autism, or know an autistic friend or family member.

Have you ever received support from the National Autistic Society?

Anna attended a day service run by the National Autistic Society in Surrey for four years. I also attend a parents of autistic adults support group, where we have dinner together. It’s such a relief to meet with other people who have similar experiences to you or your family, as it can feel less isolating.

How have your family been supporting Anna’s sensory sensitivities during the coronavirus (Covid-19) outbreak?

I’ve been explaining to Anna why hand-washing is so important. One of my tips for other families who may not be able to get hold of familiar items and food combinations is to say ‘I’ll go and make you a surprise plate of food,’ but it’s not really a surprise because it’s things Anna has liked before. Every autistic person is different so it might not work for everyone, but it can make changes more fun for Anna. I would also advise people to be honest, but positive. My own anxiety has spiralled, but I don’t want to share that with Anna. I would say to parents: ‘just keep looking for positive reassurances’ and try not to read the news too much, read the news in manageable chunks. We’re taking things one day at a time.

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 more stories from autistic people and their families