Statistics reveal that one in 100 people in the UK now have autism, with males more likely than females to be diagnosed. Karen Ireland talks to two mothers from Lisburn whose children have the condition.
‘I do worry about how Jayden will cope as an adult … I’m trying to prepare him for it’
Kim Chivers (32) works as a night shift support worker for Autism Initiatives. She lives in Lisburn with her son, Jayden Gracia (9). She says:
Jayden wasn’t diagnosed as being on the autism spectrum until he was eight-years-old. It took a long time to get him diagnosed and we finally managed to do so with a lot of support from his primary school, Seymour Hill in Lisburn. His teachers there were brilliant with him.
As Jayden is high-functioning and highly intelligent, getting a diagnosis was complicated and wasn’t something that could be done in an assessment room in an hour.
Jayden has some unusual little traits and it was those that first alerted me to the fact something wasn’t right.
For example, he cannot cope with loud noise and hates busy and crowded places.
He also has certain things that he must have – for example, he will only use silver-handled cutlery.
And he is highly sensory so he hates things like getting his teeth brushed, his hair brushed and getting washed.
He doesn’t like the way certain things feel, such as toothpaste or hair brushes. But he has no difficulty learning and is very bright. The key factor is that he has his own routine and doesn’t like to stray from that.
He also doesn’t sleep at all at night. He has been put on special medication from the doctor as before that he was up bouncing all night and I wasn’t getting any sleep and neither was he.
As a single parent it is difficult looking after Jayden but, on the other hand, not having any other children or a partner means I can focus all my attention on him, which he likes.
He needs constant attention and reassurance from me. I do worry about how Jayden will cope when he becomes an adult and I am trying my best to prepare him for that. I actively seek out support services to help with his development and he is starting a new social skills group in a few weeks.
He also attends Daisy Daycare autism and ADHD intervention service twice a week. All of these services provide different types of skills and strategies which I believe will help him as he grows older.
I encourage him with life skills at home such as helping with the cooking, the hoovering or feeding the dog.
He isn’t always keen but we are trying. He has a prepaid debit card which is topped up online and which teaches him about budgeting.
He tends to be an impulsive buyer but then he realises he will have to wait another month for more.
I just want to enable Jayden to live as independently as an adult as possible.
At the moment he does have behavioural meltdowns if he is stressed and can’t cope with things.
He is now in mainstream school and has been since P3 but he doesn’t find school easy because of all the restrictions and the loud noises. He can be seen as naughty but he just can’t cope the way other children can.
When he was younger he hit another child on the way to school and he was suspended for a month. After that he wouldn’t go to school for months and we had a real battle, and the welfare services were involved.
This year, P5, has been his best year and he has even won the ‘pupil of the month’ award which is a really big deal for him and we were all so proud.
He has also got a small part in the school play. Achievements such as those – which other parents might take for granted – are huge milestones for Jayden.
I think he is doing so well as we use as many intervention services as we can.
I have learnt through my work with autism initiatives of the importance of such support.
I have created a sensory/game area in the spare room which he can go to for an hour after a busy day at school and then he is ready to join in normal family life again.
My mum is a terrific support and she helps us out as much as she can, including looking after Jayden when I work at night.
He is mixed race and has Afro type hair which he doesn’t like being brushed. We hadn’t had it cut in over a year and then I read about a pampering room at The Man Shack in Lisburn. I thought this would be something I could try out for Jayden and he loved it. In there, he is in a small room on his own so he is away from all the noises.
He can choose the music himself and it is just very calming. There is a glass wall so he can see me on the other side and knows I am there if he needs me. It was a positive experience and I try to make life as much about him as possible.
I don’t know if it is because he is on the autism spectrum or because he is mixed race but sometimes children tend to pick on him and that’s difficult for me to watch.
I try to protect Jayden as much as possible. Every day is a challenge when you are on the spectrum.
When he was first diagnosed, I wasn’t working and then I saw a job advertised that involved working with adults with autism and I thought ‘that’s my calling’. I got the job due to all my experiences with Jayden.
They put me in one of the toughest environments as they knew I had the experience and the knowledge to cope with specific situations..
I work with adults who live together in sheltered housing and I am there at night looking after them. I love it.
The men there are non-verbal and sometimes some of them will lash out but I know how to talk the m down. I know it is not the person but their condition which is causing them to act in this way.
I want a better life for Jayden and one where he can be as independent as possible so I am preparing the way now as much as I can.”
‘Taylor wants to be everyone’s friend but doesn’t realise there are boundaries …’
Kayleigh Clark (27), a youth worker, lives in Lisburn with her two daughters, Taylor Penney (6) and Tilly Penney (2). She says:
When Taylor was three and went to nursery school, the teachers started to notice some behaviours. She liked routine and things done a certain way, and she couldn’t concentrate for long periods of time without wanting to get up and do her own thing.
I thought she was just a normal if somewhat hyper little girl but we did contact some doctors to see whether she should have some tests done. However, it was thought she was still too young for that.
When she started primary school her teacher noticed more traits, and then when I had Tilly the midwife commented on certain things.
Sometimes Taylor would speak in an English or American accent without realising it. She was always lining up her toys and she wasn’t really capable of having two-sided conversations.
She would tell you things but she wouldn’t talk to you or have a conversation. Finally, earlier this year she had a face-to-face meeting with two paediatricians and they diagnosed her as being on the autism spectrum right away.
I do worry about what lies ahead for Taylor as an adult, especially in terms of how independent she will be able to be.
She is very vulnerable when it comes to social relationships and I worry she could be bullied. She also doesn’t understand sarcasm. These are things we are going to have to tackle when she gets older.
I think as it stands now she will always need some kind of support. At the minute, we have other problems to contend with – like Taylor not sleeping properly at night.
It might take to 1am to get her settled and then she will be up again at 6am, full of life. The doctor has recently put her on medication to help her sleep and thankfully that is working.
Taylor craves attention. She wants to be everyone’s best friend and doesn’t understand boundaries.
Again, that could be difficult as she gets older. She wants to talk to total strangers in the street and will go up to people and hug them all the time.
Other children tend to push her away as they don’t understand.
I have to watch her constantly. She goes through phases where she will say she is constantly hungry and I will find her taking food out of the bin to eat even though she has just had a meal, so I have to watch her all the time.
I also have to be careful with her around Tilly as she doesn’t understand why Tilly can’t play with toys in certain ways and she might unintentionally be rough with her.
She also doesn’t like loud noises like lorries or alarms and she will panic and have a meltdown on these occasions.
If it is too sunny for her, she will again start to panic and have to get sunglasses on immediately.
Of course, it is difficult coping with everyday life as a single mum but the girls’ dad, Ian Penney, is fantastic with them and he sees them every day.
My mum, Ann, and dad, Jason, moved over from Scotland where they had been living as soon as Taylor was diagnosed and they have been a terrific support.
My dad drives her to school every day. That routine makes going to school easier.
Unfortunately, I haven’t found much support outside of friends and family since Taylor has been diagnosed. I feel like I have been left a bit high and dry and wish I could find more help. When Taylor was diagnosed, we were told that if she had been going through tests a few years ago, she would have been deemed to have Asperger’s but now they just say ‘on the spectrum’.
Society’s perception of autism can be that of a non-verbal child who can’t communicate and makes no eye contact with people.
I had limited knowledge before Taylor’s diagnosis and probably would have just made the same assumption but, in fact, Taylor is a very sociable child.
It’s important that there is more education and awareness so people understand the condition more which is why I wanted to do this interview.”
Take your child to an autism-friendly venue
The MAC theatre offers ‘Relaxed Shows’ specifically designed for people with a learning disability, Down’s Syndrome, Autism Spectrum Condition or sensory and communication disorders.
There is a relaxed attitude to noise and movement and some slight changes made to the light and sound effects. An easy way to understand the atmosphere is perhaps, ‘the opposite of the quiet carriage on the train’. If you’d like to chat to someone a little bit more about relaxed shows, call the box office, tel: 028 9023 5053 or email email@example.com.
Asda supermarkets offer the ‘quiet hour’ in certain stores when escalators and TV screens are turned off. Loud music is stopped and customers are offered a map with pictures instead of words.
The Movie House cinemas offer monthly autism-friendly screenings at three sites, Yorkgate, Coleraine and Glengormley. A family-friendly movie is selected for a Saturday and Sunday morning to offer a quieter, more relaxed setting.
Low lights are left on and the volume of the soundtrack is reduced. It is fine for customers to move around, make noise or to take a break from the movie.
The Man Shack barbers in Lisburn and Belfast offers The Vintage Rooms, special low lighting and music. Can be privately booked. Quiet and one-to-one service makes it ideal for autistic spectrum condition children. For Lisburn branch tel: 028 9210 6016 and for Belfast tel: 02890 33 2339