‘My autistic son has been called disgusting names’

Belfast woman Laura-Dee with her son Reuben-James who has autism
Belfast woman Laura-Dee with her son Reuben-James who has autism

How many of us has seen a child in a supermarket having what looks like a tantrum and inwardly tut-tutted at their perceived bold behaviour or questioned their parent’s inadequacies and control?

But before passing judgement, have we ever considered the possibility the child might be autistic?

Astonishingly, Lisa-Dee Rice says people will often not keep their thoughts to themselves but will brazenly reproach her in shops when her seven-year-old autistic son Reuben-James is having a meltdown.

Meltdowns are common among children with autism and, unlike a tantrum, are not a bid for attention.

They occur when the child becomes stressed out, upset or overstimulated.

The child may scream, hurt themselves or lash out at others.

‘‘One day when he was having a meltdown in a supermarket, someone said to me ‘a good slap on the backside is what he needs’,’’ says the Belfast mother-of-three.

Over the years, Lisa-Dee has had to build up an armour of responses to deeply hurtful comments like this, so she had her reply ready.

‘‘I said to them ‘really? if that’s going to cure what’s happening to him, what’s going to cure your ignorance?’.’’

On other occasions her precious little boy, her ‘ray of sunshine’ has been called disgusting and unprintable names by both children and adults.

Most of the time, Lisa-Dee can restrain herself when someone says something nasty about her son, but, understandably, at other times she’ll snap.

‘‘Sometimes I’ll say to them ‘autism is a horrible thing for some people, it’s even worse when you don’t understand it. I’ll give you my name and number and you can phone me and we’ll chat about it’.’’

She adds:‘‘I have had a few people come back to me and say ‘I didn’t realise he had autism, he doesn’t look autistic.’ But it’s called an invisible disability for a reason.’’

Lisa-Dee has had to develop a thick skin, and her rationalisation of this rudeness is, in stark contrast to those making the remarks, commendable and very humane.

‘‘I used to go home and cry, but now I understand people more and I have to remember that I live with autism and I know what it’s like. I’ve seen it first-hand.

‘‘People who have never been touched by autism don’t understand.’’

Reuben-James was diagnosed with Autistic Spectrum Disorder (ASD) when he was

two, but Lisa-Dee knew there was an issue with him from he was about four-weeks-old.

‘‘He didn’t like being picked up, he preferred to be left lying, you had to wake him to feed him, where he should have been hitting milestones, like rolling over or following you round the room, he didn’t do those things. He didn’t focus on much. There was no real interaction.’’

At this stage autism didn’t cross Lisa-Dee’s mind.

‘‘Like many other people I thought of Rain Man when I thought of autism, someone who is really good with numbers and repeats everything.’’

Initially, the health professionals thought Reuben may have had muscular dystrophy - he was sent to physiotherapy, occupational therapy and speech therapy.

His autism diagnosis was the result of a physio referring him to the Child Development Clinic.

Lisa-Dee describes getting the diagnosis as ‘‘a relief’’ - now she knew what she was dealing with, but she adds, ‘‘For other people a diagnosis tears their life apart. They think of kids that can’t speak or walk.’’

Reuben, now attends Taughmonagh Speech and Language School in Belfast, but his struggles have been immense.

‘‘He had a severe speech disorder and he also is delayed in other aspects of learning. He has mobility issues - if we are out, he can walk for the first four or five minutes and then his legs start to go like jelly, so he sits in a pram for most of the time we’re out. The pram is also good for meltdowns- it’s somewhere he feels safe.’’

Reuben was non-verbal up until about 18 months ago, but he is making great strides with his communication and learning.

‘‘He can now count to 10 and he knows letters of the alphabet - he’s learning to read. He’s doing sums that I never thought would be possible. To other people that might seem minute - buy to us that is a massive step for him,’’ says his proud mum.

Autism is a lifelong developmental disability that affects how a person understands, communicates with, and relates to, other people and the world around them. It is a spectrum condition, which means that while all people with autism share certain areas of difficulty, their condition will affect them in different ways. While a minority of people are severely disabled by the condition, others are exceptionally bright and able to function at a high level in many professions.

But families still face enormous struggles, not just in coming to terms with and coping with their child’s disability, but getting a diagnosis and the help they need

Lisa-Dee believes her older son, David-Morgan, 13 , may also be on the spectrum, although he has not officially been diagnosed - he has been waiting two years to be assessed.

‘‘He’s a different kettle of fish to Reuben-James. As a baby he met all his milestones. He was actually advanced - some children with autism are delayed, others are advanced.’’

Lisa-Dee said she noticed something was up when he was about five.

‘‘It started with anger, where he was hitting out all the time. When he was seven the aggression got worse - he was lashing out at me and my mum and he was sent for anger management, but to be honest, it didn’t do anything for him.’’

She adds: ‘‘Then he started to hit himself and nip his skin till he bled, he was punching himself in the face, he was using the leg of chair to stamp on his foot and he had started to eat his clothes.

‘‘He would stay awake at night for months on end, thinking about things that aren’t going to happen for millions of years. But the teachers said they hadn’t noticed anything in school, so they brushed it off.’’

David Morgan is now in second year at Ashfield Boys School, where he is excelling.

‘‘He’s sailing through school. From he’s moved there, his school assessments are in the top five, he has had a short story published, he’s been nominated for the Queen’s Junior Academy programme, he holds two places on the student council and he’s in the running club.’’

Lisa Dee is a single parent, and although she has tremendous support from her parents and sister, it still can be very, very tough dealing with Reuben James’ behaviours.

‘‘For six months he wore wellie boots, from January right through to the end of June. He wouldn’t take them off - he had to be bathed in them, he slept in them, he went to school in them. I used to have to wait until he was sleeping at night to take his wellie boots and socks off and wash his feet.’’

At the end of her tether one day Lisa-Dee prised the boots off her son- the result was a meltdown which lasted a day and a half.

‘‘Sometimes when you know the signs leading up to it, you can avoid it, but people don’t understand - there’s a build up of emotion in there - and yes, if you stop the meltdown, fantastic, but where is that emotion and the build up of chemicals going - it’s still in there, so the next meltdown could maybe be twice as bad as before.’’

But she says she has found coping mechanisms.

‘‘When he was young, I’ll admit I used to sit in the corner of the room and cry because I was own with three children - although my mum and sister helped as much as they could. I have to keep telling myself, it’s not him, it’s not fault- it’s something that’s happening around him,’’

But in the main, Lisa-Dee says Reuben-James is just a ‘very happy wee boy’’, who is very close to his sister eight-year-old sister Lucy Mae.

‘‘Sometimes he shows a very caring side or he would get emotional if somebody close to him has been hurt. When his sister hurts, he hurts.’’

All too often autism has been portrayed as a problem to be overcome or used as shorthand for otherworldly genius

It’s true, lots of autistic people do have obsessions and great recall. But it’s equally true that not all have a photographic memory. Nor are they all walking calculators.

The A Word is the latest TV programme to tackle autism. The highly watchable BBC drama is about a family coming to terms with five-year-old Joe’s autism.

Lisa Dee says of the show: ‘‘It is amazing, they way they are portraying it. It’s ever emotion that everybody is going through.’’

As for the future, she hopes it holds acceptance and more awareness .

‘‘We need to realise that these children have feelings. They are intelligent and have a lot to give.

‘‘People have said to me ‘when you are teaching your children with autism, how do you teach them?’ and I’ll say ‘I don’t. They teach me’.’’