IT only took a loud noise in the cinema to send Samantha Tomlin’s son into a meltdown – he would slap his thigh, cover his face with his hands and dissolve into uncontrollable tears.
Surrounding cinema-goers would tut and complain while mum Samantha rushed son Henry outside – she was the only one that knew his erratic behaviour was caused by his autism and completely out of his control.
Samantha, 46, an actress who starred in the 2018 film Dead Ringer and lives in Hertfordshire, has two children – William, 15 and 14 year-old Henry who has autism – a lifelong, developmental disability that affects 700,000 people in the UK – and one that she says not enough people understand.
Following the news that Ryanair refused to let an autistic boy on a flight after trying to charge a £25 carry on fee for his tiny comfort doll, Samantha is speaking out about why people need to be more alert to the struggles of people with autism.
Samantha says: “People with autism have difficulty processing everyday information when it comes to things like sights, sounds, touch and smells.
Any light touch to Henry also feels painful and uncomfortable – he’s described it as feeling like a burn.
That’s why he once broke down when his brother brushed his head in a bakery – and why he through his plate on the floor at his dad’s 40th birthday party.
As a result, it’s important that anyone who comes into contact with Henry, or autistic children like him, have an understanding of these sensitivities… and yet they so clearly don’t.
Take the news about Ryanair last week – that made my blood boil.
His mother said this boy had the mental capacity of a three year-old and he clearly needed this doll as a comfort.
But the fact the airline staff ignored this and went onto touch the boy which made him go into a meltdown, shows how little they understood about autism.
I felt similarly enraged when I read about the seven year-old boy forced to wear a fluorescent bib at school so teachers knew he was autistic.
His mum is now taking legal action against the school, and I’m not surprised.
When my son Henry was his age at school, he was adamant there was nothing wrong with him, so to have to wear a jacket that pointedly singled him out as ‘different’ to the other kids would have been mortifying.
Unfortunately, this shows we still have some way to go to understand autism in this country.
When Henry was born, he didn’t show signs of being different until he was two years old.
He’d start to say the same things over and over again and would pull his buggy cover over his head when it rained, petrified a raindrop would land on his skin.
He hated people touching him too and would recoil and scream if anyone so much as stroked his hair, including me.
I went to health visitors to get him assessed, but he was just about hitting all the right milestones so they couldn’t see anything wrong with him at the time.
As he grew older, anything out of routine would send him into a meltdown. If I ever took a different route in the pushchair to nursery where he couldn’t point to his usual road signs, for example, he’d start crying and try to get out of the pushchair.
I quickly learnt to stick to the same route every day. It was a very different experience to raising William who did none of this.
At nursery too, he was a stickler for rules and fair play and couldn’t handle it if someone took the ball when they weren’t supposed to, and he’d end up covering his face and crying.
He became quite an anxious child, which was obviously very upsetting. As a mother, you just want your child to be happy.
I remember at a nursery sports day one year there was lots of screaming and shouting on the playing fields and I could tell Henry was feeling anxious about the level of noise and I felt sick for him, watching from the sidelines but knowing I couldn’t reach and help.
Then a starting gun went off for one of the races and it jolted Henry to tears. I saw a teacher went over and put her arm around him, which made it even worse and he started to scream – she didn’t realise touch was the last thing he needed at this point. The staff never quite understood his reactions and sensitivities.
Autism spectrum disorder (ASD) is an incurable, lifelong developmental condition that affects how people perceive the world and interact with others.
It affects around one in 100 people in the UK and is three to four times more common in boys than in girls.
Many people with ASD find it hard to understand other people’s feelings and emotions, and they may have difficulty holding conversations.
When they are young, their language development may take longer and they can struggle to use facial expressions, using gestures to communicate instead.
They may also find it hard to connect with other people and to hold eye contact with unfamiliar individuals.
Many children with ASD like to follow a routine, and changes to this can cause distress.
High functioning autism is an informal term some people use to describe those on the autism spectrum disorder.
At the time, no one really could. One time we were at a bakery with a few mums and kids, when Henry’s older brother William accidentally brushed Henry’s head and he started screaming.
An older couple sitting behind us started tutting and shaking their head, telling me Henry was making a fuss over nothing as his brother barely touched him. I was furious, but took a deep breath, trying to keep calm and said: “Why do you think it’s your business?”
I started packing up to leave and on the way out I told the couple: “Sometimes you should think about what you’re saying – my son has additional needs.”
They looked at me blankly, uncaring, just grateful I was finally taking the screaming child away.
I’ve had the same reactions from people in cinemas or theatres when a loud, unexpected noise sets him off and you can see people glaring, making judgements.
When Henry gets excited over a film, he might laugh loudly or tap his leg.
But I refuse to be embarrassed. Why would I be?
Although I do prefer taking Henry to relaxed performances, a scheme initiated by the National Autism Society where children with additional needs can be allowed more freedom to experience cinema and theatre and are not expected to stay still and quiet the whole way through.
After years of health visitor, physiotherapy and GP visits Henry was finally diagnosed with autism at eight years old. By this point, he’d entered primary school and was really struggling and falling behind in his work. “I hate school,” he cried to me one day. “It’s like a prison.”
The teachers called me in a few times about his reaction when the kids put their bags down every morning in the classroom, and how he’d scream at the pushing and shoving.
I tried to explain about the problem with touch, but they seemed to know very little about it.
Ignorance about autism seemed commonplace. When Henry was 10, we were in a London tube station and he couldn’t cope with the crowds and he freaked when a station attendant took his arm to help him through the gate.
The guard was clearly offended and shouted at him saying he was only trying to help. He saw Henry as aggressive, but really he was just anxious and scared.
Scenarios like this were happening all the time – in playgrounds, shopping centres, cafes, everywhere. At his dad’s 40th birthday dinner in a restaurant, the surrounding noise made him push his entire dinner onto the floor – so we simply stopped going out.
It was safer, more secure at home. He had all his favourite things around him: his six-year-old tablet, his scooter, the trampoline in the garden. And more importantly, there was no one to judge or stare.
He stopped going to primary school and was barely there for the last two or three years.
Eventually we got a place at a Special Educational Needs secondary school, which has made an incredible difference and changed our life.
There are small classes of 10 and the teachers there just understand all his sensitivities and needs and make sure they work around them.
As a result his meltdowns are now few and far between and he’s a very happy boy.
He still thrives on routine and we get up at the same time every day – at 5.30am – so he has time to brush his teeth in the way he likes, watch his videos and I can make his same packed lunch of cut up sausages, rice cake, tangerine and a chocolate bar as adherence to routine, even when it comes to food, makes him feel safe and secure.
He’s happy getting the school bus which takes him and brings him back and in the evenings he’ll eat his dinner – usually fish fingers, nuggets, plain chicken and broccoli (no other vegetable and nothing with a sauce) and I know he feels safe and secure.
We’re in a good place now but Henry and his needs are never far from my mind. His father and I divorced eight years ago and I did find it easier, just having me in charge.
I’ve been with someone for the last three years and he gets on well with Henry but I know we can’t live together until he’s older as it would upset our routine and I wouldn’t want to cause that upset on Henry.
Having an autistic child is all about adapting and learning and being sensitive. I just wish everyone would catch up and get to the place we are now.
Henry now loves school and has built trust with his teachers and is learning to get used to change and become more flexible. I have high hopes for his future.”
For more information on autism, visit www.autism.org.uk.
