My son Bentley is 5 and he wears a sunflower lanyard. He wears it to make other people aware that he has a hidden disability that makes it hard for him to social distance. I wish more people recognised the lanyard and understood what it means.
Bentley has autism. He has the level of understanding of a neurotypical 1½ to 2 year old. He finds it hard to regulate his emotions and he has sensory issues. He struggles with social distancing, and he can’t wear a face mask as he can’t tolerate anything across his face or over his head.
The other day Bentley and I were in Tesco. I try not to take him to shops with me but sometimes it is unavoidable. Bentley had his sunflower lanyard on.
We were about halfway round when this lady decided to hurl abuse at us because we weren’t social distancing. I’m not always able to social distance either, as I’m too busy keeping an eye on Bentley – it only takes a second and he’d be gone from my sight. He has no spatial awareness and also no awareness of danger. I cannot take my eyes off him for a second.
It was really embarrassing to be shouted at – and, as I’m sure you can imagine, it wasn’t very nice for Bentley either.
I went home that day and posted about what happened in Facebook. It wasn’t to make a comment on the lady who was rude – I am not aware of her own personal circumstances. It was because I want to raise awareness of what the sunflower lanyard means.
Bentley has always found supermarkets particularly difficult. They are loud and busy. The lights, mixed with the noise and all the people, are overwhelming to him, and he will cover his ears and make loud fire engine noises repeatedly to block it out. People will often stare and make comments and this really upsets me.
I find it difficult knowing that people are going to judge me and Bentley. I think other people’s reactions towards Bentley affect me more than Bentley’s coping mechanisms do. I have had many comments made from people who assume he is just a naughty child or that I am a bad parent, and it has broken my heart on many occasions.
Why sunflower lanyards matter
We have had the sunflower lanyard for more than a year now. My friend told me about them as we were due to go to Disneyland Paris (this was before the first lockdown, of course) and he said they were recognised at many places, including airports and on the Eurostar, which meant staff there would be helpful and understanding.
The whole idea of the lanyard is to inform the public, health professionals and members of staff in public places, that the person wearing it either has, or is with, someone who has a hidden disability – such as autism, chronic pain, dementia, hearing impairment. It means that, because of this, that person may need additional support and help or more understanding and time, and that they may be exempt from wearing a face mask.
Hidden disabilities are called hidden because they are not immediately obvious when you look at the person – but that does not mean they are not there.
So often, I hear of people being discriminated against or being called out because their disability is not visual and I think the sunflower lanyard is a great way to let people know, in a subtle way, without people feeling like it needs to be written in bold letters on a coat or a T-shirt.
I don’t want people to see Bentley as ‘the autistic child’ but I would like people not to judge him, and they can only do this if they are aware that there are reasons for the way he may behave sometimes. Everyone deserves the right to go shopping without being judged, right?
What you can do if you see a child with a sunflower lanyard
“If you saw me walking down the street with Bentley wearing his lanyard,” says Kelly Marie, “the best response you can give is to have knowledge of what the lanyard means. You don’t need to give up your space in a queue or ask if you can help. All you need to do is to understand, show compassion and not judge.
“I can’t speak for everyone out there but personally I wouldn’t mind you approaching me and offering to help if you could see I was struggling with something but the best gift is just the gift of knowledge.”
What being a parent of child with autism has taught me
Being a parent to a child with autism or any additional need is really tough but I wouldn’t change it for the world because it makes my Bentley who he is. But I’d say one of the biggest challenges we face is getting him the right support to give him a fair chance at being the best version of himself he could be.
Bentley first began being assessed for autism when he was 2. I raised concerns with his nursery that he was not talking and they referred him to speech and language therapy. At the time, autism had not even crossed my mind and I assumed it was a speech delay. It took 2 years to get a formal diagnosis.
Bentley is now verbal after lots of hard work but his level of understanding is around the age of 1½ to 2 years. This is also the same with his social and emotional skills. Bentley really struggles to regulate his emotions often resulting in what many people would call a ‘meltdown’. During these times, he will often lie on the floor, hit out at anyone around him, cry and scream uncontrollably and is unable to tell anyone how he is feeling or why he is feeling that way.
Bentley is very, very, literal so you have to say everything exactly as you mean it. He follows a very rigid routine. Our days are always set out on a picture board, so he knows exactly what to expect. Any changes to this and Bentley becomes very emotional.
All learning needs to be tailored around Bentley’s interests. For example, we helped him to learn his colours by watching YouTube videos of white buses being dipped into different coloured paints. Doing this really helps his learning as his attention span is short. Bentley has a really fantastic memory – in fact, like nothing I’ve ever known: he will literally recite things from when he was a baby – so, although it can take a while for him to pick things up, once he does, he will never forget.
As well as Bentley, I have a daughter called Sophia who is 9. She is neurotypical and absolutely amazing with her brother. She makes me so proud every day with her love and understanding. I also have a partner: he’s Bentley’s father, and we’ve been together for 6 years now.
Having a child with autism has taught me to be more patient, more organised and more compassionate. Even when I am exhausted, I will always stand up and fight for my child’s right to be given the best possible chance in everything he does.
Sunflower lanyards: where to get them and who can wear them
Sunflower lanyards are free and can be worn by both adults and children.
You can get them from customer-service desks at businesses – including supermarkets such Sainsbury’s, Tesco and Argos – who have signed up to the Hidden Disabilities Sunflower Scheme. Or you can order them (for a small fee, plus delivery charge) from the Hidden Disabilities online shop.
There is no qualifying list of disabilities and you do not need to show proof of disability to get one.