Public spaces like shops and services can be overwhelming for autistic people. That’s why 64% of autistic people avoid going to the shops. Bright lights, noise levels, crowding and unpredictability can contribute to too much information.

Below are just some stories from autistic people and their families.

Matt, North London

Natasha, North Wales

Samantha and Henry 

Ronnie, Yorkshire

Jo, Holly and Katie

Matt Davis

Matt Davis.

Matt’s son Isaac, 9, received his autism diagnosis at 3 years old after the family noticed he wasn’t reaching the typical milestones. Sensory overload for Isaac is an ongoing challenge so shops can cause a great deal of stress and anxiety.

“Noise, lighting and crowds are all triggers for Isaac so either we avoid shops altogether or we have to put in a great deal of preparation to ensure Isaac doesn’t become overwhelmed. Unfortunately, my wife and I find that the stress doesn’t stop with having to pay close attention to Isaac’s sensory overloads. We also have to take into account the public’s perception of Isaac’s behaviour and that can be difficult.

“In recent years, we have seen an improvement in Isaac’s ability to go to public spaces but we have to make sure it is familiar, it has a quiet area, the lighting is not overwhelming and it's not overcrowded. As you can imagine, predictability in public spaces is not always guaranteed so we still experience many meltdowns. The idea of having specific ‘Autism Hours’ where the triggers of sensory overloads are reduced would make life so much easier and would allow Isaac to prepare effectively.

“One of Isaac’s special interests is transport so we recently took him to the London Transport Museum. We thought the museum was opening at 9am however when we arrived, we realised it was actually 10.30am. Isaac had a meltdown because of the unexpected change. My wife tweeted the London Transport Museum explaining the situation to see if there is anything they could do. To our amazement, the Museum informed some of their staff and opened it early especially for him. This gesture meant so much not just to Isaac but also to me and my wife because often shops and services don’t have the correct understanding of why a slight change in Isaac’s routine would be so hard for him to process.

“Since 2011, I have noticed that more people have heard about autism and that there has been an improvement in public understanding however we still have a far way to go. I would love to be able to attend a shop with Isaac where small allowances have been made to make it autism friendly and where I know staff and the general public will understand should Isaac get overloaded with too much information.”

Natasha Lee

Natasha Lee

Natasha is the mother of three autistic sons. Michael, 19, James, 9 and George, 5, all struggle with visiting shops and services on the high street due to experiencing sensory overload and as a result it is typically avoided at all costs. 

“My three boys are the perfect example of how wide the autism spectrum is as their autism presents very differently in each of them, but when it comes to visiting shops, it is just as much of a struggle for all of them. 

“My eldest son Michael is now 19 so we are currently really trying to encourage him to become independent and as a result, go food shopping on his own. There have been many occasions where Michael has been so overwhelmed by the lights, noise and confusing labelling that he leaves without getting what he needs. The thought of approaching someone for help who might not understand his autism is too daunting. 

“For James and George, entering a supermarket can instantly be a complete attack on their senses. Not only are you met with a huge number of people but there are also strong smells, bright lights and unexpected tannoy announcements which they both find so distressing. 

“I think encouraging staff to have a basic understanding of autism is equally as important as making the small changes to the lights and the sounds in the shop. As a mother, feeling like I am going to be judged or that staff will not know how to cope if my children have a meltdown just adds stress to an already very stressful situation. There have been too many times where I’ve had to abandon a full trolley and spend more money on an online shop because my children’s behaviour is being mistaken for a naughty child having a tantrum. It can be something as small as just giving a reassuring smile rather than staring at us that makes a big difference. 

“We have had times though where staff have gone out of their way to help us. Recently, we took all the boys to get new shoes at our local Clarks store, it was a particularly stressful day as James had forgotten his ear defenders and George was so overwhelmed by the noise and the people that he just wanted to escape. I explained to the shop assistant that the boys are autistic and if she could speak clearly with basic demands, it would help them to calm down and hopefully speed the process up. The shop assistant took me aside, wrote down the number of the store and informed us that next time we need to come in, we can call in advance and the store will open up early so the family can come in and avoid the busy crowds and noise. 

“It can be really difficult as a mother having to sometimes take your children somewhere that you know they will find overwhelming and will put them through discomfort. Having a dedicated Autism Hour, where we can go to the shops and know it will be calmer and that staff will have an understanding of autism would definitely help.” 

Samantha Tomlin and Henry 

Samantha Tomlin

Samantha Tomlin’s 12 year old son is autistic and has sensory processing disorder. Often the overwhelming noises and lights in shops cause Henry a great deal of stress and anxiety.

“Henry received his autism diagnosis when he was eight years old and his sensory processing disorder diagnosis at the age of five. I was relieved at the time of his diagnosis because for so long people felt he was naughty when really he’s just unable to cope with everyday things such as being touched, loud noises or a change in routine. 

“Going shopping has always been a particular challenge with Henry. Not only do shops and shopping centres often trigger a meltdown for him due to the sensory overload, they have also been the place I have felt most judged for my parenting by the general public due to a lack of understanding of why Henry is acting in the way he is. 

“When Henry was two years old, before he had received his autism diagnosis, we were in a shopping centre at Christmas time. I had taken Henry to meet Santa Claus with his older brother. The shopping centre was very busy, the music was loud and the place was covered with Christmas lights. When Henry saw Santa he just started screaming, the Santa didn’t know what to do so he just started holding him to try to calm him down. Henry hates being touched so his meltdown escalated. He ran over to a Christmas tree and grabbed it, the whole thing fell down and everyone stared as though I was the worst mother in the world. After that, I didn’t take Henry out shopping for a year because I was just so worried about being judged. 

“Since then, I have seen a shift in how many people have heard of autism but I know Henry and I are not alone in feeling that a lot of people still don’t understand. That is why I wanted to work with The National Autistic Society on their Too Much Information campaign and help the general public to understand autism better. I hope the National Autistic Society’s Autism Hour will help shops and services to not only make their venues more autism-friendly but also ensure that staff have a basic understanding so they know what a meltdown is. This would certainly make a huge difference to my family. 

“I recently returned to the same shopping centre that I took Henry to meet Santa at. Whilst I was shopping, Henry was occupying himself by going up and down on the escalators which he absolutely loves. A shop assistant came up to me and commented on how much Henry appeared to be enjoying himself and asked if Henry was on the autism spectrum as she has a grandson who is. It may not sound like a lot but as shops are still so unpredictable for Henry, this small gesture meant so much as I felt that a stranger had taken the time to show me that they understood.”

Ronnie

Ronnie

Ronnie is 47 and received diagnosis on 45th birthday. For a long time the doctors just thought he had severe vertigo. He works in a local superstore, and struggles daily with sensory overloads, particularly lighting. 

“People find it strange when I talk about how difficult I find accessing shops because I work in my local superstore, but it has taken some effort and compromise to ensure my work days are manageable. In fact, there are still parts of the shop that I cannot access because of the lighting.

“On top of getting sensory overloads from lighting, noise can have a big impact and I also struggle with social interaction. Typically, I am fine if I am familiar with somebody however I can get very uncomfortable in large groups or with new people, so going to a new, busy shop can be particularly overwhelming. 

“I am very grateful that at my place of work, the General Manager has made many small changes in the shop, similar to the ones being asked during The National Autistic Society’s Autism Hour, which make my everyday routine much easier. Small but meaningful allowances have been made to ensure I only need to access parts of the shops that I can cope with and a quiet room has been set up for me in the staff area. I’ve been given the chance to give autism awareness training in other stores in the area and as a result, I’ve felt much more understood by my colleagues. 

“Recently at work, I was being really affected by one of the fridge cabinets as it had a particularly bright light. My colleague went straight over and took the bulb out to avoid me having a sensory overload. And a month ago, our store was having all new overhead lighting fitted so my manager took me to a nearby store that already had it fitted to make sure I wasn’t going to be badly affected. It is just small gestures like this that make me feel so much more comfortable. 

“I have an autistic daughter and we both find shopping centres very overwhelming, particularly if we haven’t been before so we don’t know what to expect. Before going to any new shop or service, I will go on YouTube or look up photos to help familiarise myself. Some of my biggest meltdowns have been a result of arriving somewhere and it is unexpectedly busy or noisy and not knowing how to cope. It would be a huge benefit if my daughter and I knew that we could go to a shopping centre at a dedicated hour where the lights would be dimmed, the music would be turned down and staff had a basic understanding of autism.”

Jo, Holly and Katie

Holly and Katie in Clarks during The National Autistic Society's Autism Hour
Jo's daughters, Holly and Katie, visited Clarks shoe shop during The National Autistic Society's Autism Hour. This is Jo's story about the visit.

Shopping means planning. My autistic daughters don’t like strong smells, crowds, noise, social interaction, waiting, overwhelming choices and the unexpected. I generally shop online but feel very strongly that the girls experience everyday situations. Shopping is one of the many tasks they will have to manage themselves as adults.

A recent trip to a local mall did not go well. It was busy, loud, people were stopping in random places, there were strange smells and it was too warm. Holly removed her jacket, complaining of feeling hot and sick, before clinging to me whilst covering her ears. We were in the mall less than five minutes before rushing out. In a shoe shop I found a quiet area towards the back of the store, but was told to move to a busy area to have the girls’ feet measured. After around 15 minutes, the assistant brought Holly shoes that had been on display and looked worn - Holly refused to wear them. Katie was fed up waiting and Holly was disappointed. I sensed it was time to leave. In another store, we found trousers for Katie and I suggested she tried them on. She would have, except an assistant, who was trying to be helpful, suggested Katie try on several items. That was too much; Katie refused to try anything and became angry. In an effort to cheer them up we went to a popular store for young girls, but it too was crowded, bright and overwhelming. We made it to one display before backing out. Our shopping experience was less than 90 minutes, we didn’t buy anything we went for and I felt awkward leaving shops in a hurry, saddened by the girls’ distress.

We planned to try and have Katie’s feet measured during The National Autistic Society's Autism Hour. I felt a huge weight was lifted as we anticipated a more relaxed environment. It lived up to our expectations. In our local Clarks, they said they could accommodate autistic needs on any day and we could even go at closing time when the store is quiet; we just had to let them know.

Holly said “If shopping could always be like that I would go more often”. As Holly approaches 13, her friends often plan shopping trips. If more shops joined in and they could go during The National Autistic Society’s Autism Hour, Holly might have the confidence to join them.