Does your child line up toys obsessively, stare into space a lot and find it hard to socialise? Two mums of children with autism have learned to accept their differences.
About 1% of the population has autism – that’s around 700,000 people in the UK, which is more than one in every 100. But what is autism and who does it affect? It is a developmental disability that is lifelong. It affects the way children as well as adults understand the world around them. It is a spectrum condition, which means that while all people with autism share certain struggles in life, they will act differently. There are three areas of difficulty which people with autism share. These are often known as the ‘triad of impairments’. They are:
This is where those affected struggle with verbal and non verbal language including being able to read facial expressions, understand jokes and sarcasm. Body language can appear just as foreign as if people were speaking Ancient Greek. Some find it hard to differentiate between what is literal and what isn’t, such as when people say ‘it’s cool’, to describe something good, people with autism may assume that means it’s cold. Some people with autism may not speak, or have fairly limited speech. They will usually understand what other people say to them, but may prefer alternative means of communication themselves, such as sign language or visual symbols.
People with autism have difficulty socialising because they struggle to recognise or understand other people’s emotions and feelings, and expressing their own, which can make it harder for them to fit in. They may not understand unwritten social rules, like how close to stand to someone, and prefer to be on their own rather than with other people. Those with autism tend to be honest at all times and therefore can be insensitive – this can then make it hard for them to form friendships.
This means that people with autism find it hard to understand and interpret other people’s thoughts and feelings and, what they know. So, for example, if they know grandad is on holiday, they think everyone else will. Some don’t understand the concept of danger, such as running into a busy road, and don’t like unfamiliar situations because they can’t predict what will happen next or what could happen next. Difficulties with social imagination should not be confused with a lack of imagination. Many people with autism are very creative and may be, for example, accomplished artists, musicians or brilliant writers.
Know the signs
Caroline Hattersley, who is head of information, advice and advocacy at The National Autistic Society (www.autism.org.uk), explains what to look out for. ‘There are numerous key signs which could indicate that your child has autism, these include:
- Not drawing your attention to a storybook they’re reading at that moment or a drawing or painting they’ve done or are currently doing
- Repeatedly lining up toys in an order, which may not make sense
- to others but is always done the
- same way. The child may also get very distressed if any part of the sequence is moved or altered
- Resistance to change and doing things uniquely to others
- Always struggling to join in with other children at school or home and often moving away from them
- Behavioural problems like biting, punching, kicking others and hurting themselves on a regular basis
‘If you’re worried your child may be showing some of these traits, then keep a diary over a week or two, writing down everything that happens and where it happens. Note down what happens before, for example, a sibling may have tried to move a toy causing distress.’ Take this information to your GP as it will make diagnosis easier and quicker. ‘Diagnosis can happen when the child is as young as 18 months, but it can be later on and sometimes even when a person reaches adulthood.’
This is also known as high functioning autism and has the same three characteristics as autism; difficulty with social communication, social interaction and social imagination. It is mostly a ‘hidden disability’ as you can’t tell someone has it from their appearance. People with Asperger syndrome (AS) are usually of average or above average intelligence.
‘We’ve finally accepted this is our life. we’re a solid team’
Donna Street, 35, and her husband, Lee, 35, have two autistic children – Cody, four and Jesse-Leigh, three. They all live in Birmingham
‘Up to the age of two, Cody developed in quite a neuro-typical way, walking and talking, pointing to animals and making the right noises and forming relationships. He brought my husband and I books to read with him and knew the actions to Twinkle, Twinkle Little Star. Then, out of the blue one day, not long after his second birthday, he woke up and was incapable of doing these things any more. ‘All his words were lost, he would scream if you touched him, he would glaze over often and he would become distressed and hysterical when anyone came into the house, even his grandparents. He would no longer interact with any of us. It was a total traumatic regression.’
A distressing change
‘In hindsight, there were tell-tale signs before this happened. For example, he would stare into the distance in a deep and meaningful way – we used to refer to him as an “old soul”. He wasn’t bothered if he wasn’t doing anything at all; we didn’t have to keep him occupied or stimulated as he would just sit down and stare for hours.
‘He’d also had problems with gastroenteritis from when he was a baby and there are links to digestion problems and autism, although this has not yet been medically proven. Play would often be highly repetitious and when he discovered cars and trains, the lining up of toys started. He would walk on tiptoes from the moment he could stand and has never come out of this; his calves are like those of a shotputter! So I guess these were early pointers – if we’d known what we were looking for.
‘I knew, call it mother’s instinct, that something was not right. It wasn’t simply a phase he was going through as some people said – it was serious and we took it seriously. It was so traumatic for us and it’s deeply distressing seeing your child so upset, not knowing what had happened or why. We interrogated ourselves. Did we do something to make this happen? Was I a bad parent? It was hard enough to deal with the distress of seeing your son go through these changes but to question your own involvement was breaking our hearts. There just didn’t seem to be a reason why he had woken up a totally different child.
‘We left it a couple of days then visited the GP and his behaviour while we were there, screaming and not letting her near him, confirmed the diagnosis. We were lucky to be assessed immediately – in some cases it can take up to a year. He had to have an eight-week appraisal in a children’s development centre and we sat behind a two-way mirror, watching him scream and cry in a room full of adults and children whom he thought were odd and strange. He didn’t participate at all and sat on the therapist’s knee the whole time. He didn’t speak once. ‘Cody was diagnosed with autism at the end of those eight weeks.’
‘We felt validated by the diagnosis because we knew something was wrong, but my husband and I both grieved. We were shocked that this was the reality. Cody was our first child and we had got married because we wanted to have a big family.
‘We didn’t really know what the diagnosis meant but we soon realised the best way to learn about autism is to live with it. We were scared we wouldn’t be able to. From this we moved into a deep sadness.
‘Jesse-Leigh was born 10 months after Cody – we hadn’t planned to have another child so soon, but I’m so glad we did. She was born with severe autism and learning difficulties but she was, and still is, a ray of sunshine! We could see she had autism from the start, though there were startling differences between the two of them. Cody progressed, although he was very shy and his regression was dramatic, but there was no regression with Jesse, as she never progressed in the first place. She beamed from the day she came into this world and hasn’t stopped since.
‘Jesse is extrovert and rough in her play and she’s never formed a word in her three years – she is vocal but not verbal as she speaks in her own tongue. She’s so happy. Not a care in the world, she’s brand new, naïve and loving every minute of everything!’
Coming to terms
‘What we went through once we had the two children was a sense of what might have been. Before we had them, we talked about experiencing the world with our children: taking them to Thailand, backpacking around the islands. You mourn the loss of how you thought your life would be. You grieve for the children you envisaged when you carried them for nine months and then you hate yourself for not appreciating what you have now.
‘My husband had to quit his well paid job as a gas fitter and we both had to dedicate our lives to the children, which means it has been very difficult financially. Luckily there is an excellent special school near to where we live and Cody and Jesse have both come on leaps and bounds since they started there. We have thrown ourselves into learning about the condition, giving talks to health experts advising them on how to deal with parents of autistic children.
‘We’ve started to build a new network of friends, mainly of parents with children with special needs because no conversation is too shocking to people who are going through similar issues. I am now a bottomless pit of facts, websites, charities, parental advice groups…
I have to know everything if my kids are to get the most from their lives.’
A happy family
‘We try not to make our children something they are not – we don’t expect them to fit into our lives. We play to their strengths – Cody and Jesse both love acting, singing and dancing, so we encourage them to do that. Accepting how they communicate makes life easier and we use language they understand.
‘My children will always be a credit to me; they astound me every day simply by being who they are. As the parent of an autistic child, I see tiny, amazing things that other parents may not. Recently, we were putting Cody to bed and he began to sing a beautiful duet from the film Polar Express. I began to sing the girl part to myself and Cody answered my line with his line and then turned to me to carry on singing. Together we finished the duet, holding hands just as they do in the film. With tears streaming down my face, we finished the song looking into each other’s eyes and I felt happiness like I never had before. I cried tears of joy to have that small moment with my son.
‘Lee and I have finally accepted that this is our life now – we are a rock solid team. The children will have fun and adventures and will smile, laugh and be happy – after all, that is all anyone wants for their children – and ours are no different.’
To read Donna’s blog, log onto www.autismandlove.com
‘Getting the correct diagnosis helped us. Elijah wasn’t just attention seeking’
Rachel Whitehead, 38, and Jonathan, 38, are parents to Isaac, eight, and Elijah, five. They all live in Wolverhampton.
‘The way I define Asperger syndrome (AS) is that you have a different slant on life and that is what Elijah has. Academically, he is way ahead of the game but he has the social skills of a toddler, he doesn’t know how to play or how to interact with others. So, for example, if he was asked to join a queue, he wouldn’t know to go to the end, he would go to the nearest place to him or right to the front.
‘He will talk to anyone at all, he is impulsive and once he’s decided to do something, he will just do it. Like just today he asked me if I wanted a drink and I said no I didn’t. But he still went to the kitchen and made me one because that’s what he had decided he was going to do. He’s very focused and single-minded. He can have conversations and his language is very good, but he has problems understanding what people are saying to him and even though he loves people, it’s all about him.’
‘I noticed something was different when he was less than three months old because he just didn’t smile. Isaac was four weeks old when he first grinned, so when Elijah didn’t, I found it odd. When he cried as a baby, you couldn’t comfort him by picking him up – the only thing that would make him stop was a dummy – and that carried on until he was aged four. Now he loves hugs but back then he just didn’t want to be held at all. I always thought, even then, that his brain was ahead of his body in terms of development. Because my mum worked in special needs schools, I had a lot of exposure to special needs children, which made picking up the signs a lot easier.’
The correct diagnosis
‘Elijah had physical problems like grasping and banging his hands together and he was always very grumpy. By six months old, he’d dropped his daytime naps and he would scream, literally all day.
‘I went back to work and Elijah was in a private nursery from nine months to three and a half. At three, I was told he was “hard work” to look after as he was on the go all the time – and was very demanding. I took him to the health visitor and he was referred to a paediatric consultant, then a psychologist – who worried me by saying he was just attention seeking and this could have been triggered by the fact that I had postnatal depression. I was sent on a course to encourage me to ‘form a bond’ but I stopped going because I believed it was so inappropriate.
‘It was the Early Years Support Team, who visited us at home and managed to speed up the diagnosis, so by the time Elijah was ready for full-time school, we were told it was Asperger syndrome. His behaviour at nursery – tantrums, screaming and hitting others – were all indicators that this was the correct diagnosis. I felt glad that, at last, we knew and that I wasn’t imagining my problems. It was genetic and not my fault.
‘We were sent on a course delivered by the National Autistic Society (NAS) with other parents who had children under five diagnosed with autism. It dispelled lots of myths that you pick up on the internet and showed you how to interact with your children and how best to communicate with them in ways they understand.
‘Elijah started mainstream school last September and he’s on the special needs register – we are looking to get him a statement which will mean he’ll get more help. He likes school more than school likes him as he loves learning things and he wants information about everything. ‘There is another boy with autism in his class who he associates with and, when they get older and realise they are “different”, they may well be a support for each other, because it will be hard when that hits them.’
Getting it sussed
‘His brother, Isaac, does not remember life without Elijah, but because not concentrated on him so much academically or otherwise. In fact, we haven’t spent as much time with him as we’d like to, which is hard, as we have to be with Elijah a lot.
‘Now we have the diagnosis and understand Elijah, at home we have it sussed. We know what’s going to set him off, so we answer the million questions that he asks. With both Jonathan and I being scientists, we can deal with it practically. And there are positives to Elijah having AS because it has given us a whole new view of the world. Because he is clever and articulate, he can explain it to us and it can be a real eye opener. In his own words, he is “a good boy and a naughty boy all mixed together”.
‘My advice to parents who have children with AS would be to realise there is no set method or formula for dealing with it. Each child is unique and will react in different ways. Go online and find parents in similar situations – there is so much information. Be prepared for a battle with the school system too, because that environment is still hard for them and they need support. It is important they fit in the mainstream system, as there is no reason why they can’t be functioning members of society and being exposed to “normality” when they are young will make them ready for the future.’