Understanding autism

> Insights into this growing disorder and ways to mitigate it

Ais a neurological disorder that affects the brain function. Classic autism exhibits three common symptoms: impaired social interaction, problems with verbal and non-verbal communication and generalisation, as well as restricted or repetitive patterns of thought and behaviour. Autistic people vary greatly, from highly articulate to non-communicative. Yet, a common thread that connects all autistics is their complete different world view, unrestricted especially by any social inhibitions. For this reason, autistics are generally misunderstood. This can be further aggravated by the fact that one cannot necessarily tell if a person is autistic by their physical outlook.

Oftentimes, autistics’ unmitigated statements/opinions are construed by society as insensitivity and fail to be recognised as their incomprehension of the finer points of social conduct. However, that doesn’t mean autistics cannot be directed on said matters which people normally learn instinctively.

There is no cure for autism but there are practical strategies which can be employed to mitigate the symptoms, which are generally evident during the first three years. A few apparent symptoms include being unresponsive, uncommunicative or as if “in their own world”. Depending on the severity of the symptoms (some will need lifetime care), autistics can be assisted with their speech impairment, unresponsiveness, behaviour, resistance to change and more. The key is to intervene as early as possible. This will require parents to firstly acknowledge (as difficult as it is) that their child may be within the spectrum of autism and secondly, to get their child diagnosed. The longer it is ignored, the more difficult it is (although not impossible) to deal with the child who will have frequent meltdowns, throw tantrums or display unusual behaviours. Again, depending on the complexity, anything can set them off, for instance noise sensitivities, unfamiliar environment or tasks, etc.

FORMING A CONNECTION

Parents of autistic children need to know that there is a child in there, says Manjula Nithianathan, an autistic advocate, speaker and trainer. “You just need to figure out how to reach them.” There are many practical strategies out there that can help with forming a connection with the child, depending on whether the child is pre-language or verbal. Some of these include employing pictures, language tools and toys, mobile apps and so on. “There are tons of options out there including educational toys and mobile apps and these are not necessarily exclusive to autistic children. They are catered to children in general.” Speech and language therapy will help too.

In the case of her youngest son who is more high functioning, Manjula shared that an educational toy - fridge phonics was a particular favourite of his. The toy employs phonics, a method of teaching people to read by correlating sounds with letters or groups of letters in an alphabetic writing system. “He would sit there in his own world, constantly changing the alphabets and listening to it pronounced. Again and again … in repeat.” It eventually led to her son’s first word: bakery. Reinforcing their belief that there was a boy in there and they could reach him, they continued to do lots of reading with him and played phonics games, spelling games, over and over.

If the child is pre-language, another good option will be to use PECS (picture exchange communication system). So for instance, if the word is cup: show a picture of a cup, then an actual cup and say “cup” to draw the link. Then, repeat over and over. Repetition is key. The child will eventually form the connection between the word cup and the object itself. “To an autistic child, they process words slowly. First, they need to understand the word, all the different ways to use it and practise it by using that word again and again. By making mistakes, they learn how to use the word correctly.”

Sometimes autistic children don’t feel motivated to be “in this world” because they cannot form a connection with anyone. A method that can be employed to reach out to the child is “Intensive Interaction”, which involves an interaction partner reflecting back movements and sounds made by the child. By following the lead of the child, the interaction partner is “opening the door” for communication. Eventually, the communication style will evolve from copying to responding, initiating or turntaking. Essentially, it develops a conversation with the autistic child, even if it is initially non-verbal.

TEACH THE BASICS

One of the important things to equip autistic children is with basic life skills. “We call it teaching them the rules of the game. If they know the rules, they can play the game.” This includes personal hygiene, how to cross the road, to handle money or how to know whether they can trust people or not, and so on. While we learn instinctively, autistics need rules as a coping mechanism. In an interview with Times of

Malta, Ros Blackburn, a notable autistic advocate, speaker for autism revealed that she learnt it all artificially. Through rules, she made sense of the world around her and how to live in it. Among her rules: when someone extends a hand – shake it. Don’t leave your bag unattended in a place where there are many people you have never seen before. The same rule applies to a wallet or jacket. Eventually, the rules became instilled in her and

helped her deal with similar situations in the future.

Ultimately, it is about instilling independence in the autistic child. “As parents, we need to face the fact that we may not be around to take care of them for the rest of their lives. In fact it is no different from every parents’ hope for their child. Only with autistic children, you have to lay down the steps towards their independence. So by equipping them with basic life skills as well as important concepts like ‘time’, ‘safety’ and ‘money’, we can strive to build skills to help them take care of themselves in the world.”

In addition to teaching them, it is also important to bring them out into the world instead of isolating them as a way of protection. “It’s very important because one thing is it accelerates their learning through the feedback they receive. They also can see and experience the world around them. We’ve taken our son on countless bus trips just to expose him to the world. He is sound sensitive but we knew that he needed these experiences in order to be independent. When he is bothered by the sounds, we give him headphones to put on or employ distraction techniques and give him lots of positive reinforcement. Now he’s happy to climb on the bus and we moved on to taking trains.”

BREAK THINGS DOWN

People normally learn instinctively or through observation. With autistic children, it’s about breaking down the steps into small manageable chunks. This is where social stories come in handy. Social stories are written in sequence of events that are going to happen if for instance, you’re taking your autistic child along to buy groceries. So from start to finish, the sequence of events of what is going to happen from the moment you leave home to when you come home is written down. The social story is for the autistic child to relate to when they are out buying groceries with you. “They not only need to know what the activity entails but a timeframe where there is a start and finish (like a guide book). Otherwise they will be lost. So as long as you tell them the sequence of events that is going to happen during that trip or whatever you are going to be doing with them, they will be fine.”

If any of the steps is missed out, autistics will not know what to do. They could either get anxiety attacks and self-stimulate to fill in the gaps i.e. going in circles or making sounds (depending on the child). “If you don’t tell them every step, for instance after they brush their teeth, that they need to put down the brush and leave the bathroom, they will carry the toothbrush with them. Simply because, you didn’t tell them to put it down.”

However, once the steps are in place and it is repeated a few times, it develops into a pattern and from then on, they know what to do. Blackburn explains it best, “I can only know what I am taught or told or shown.”

KEEP IT CONSISTENT

While some change is not impossible with autistics if it is delivered properly, it is important to keep things consistent especially at the beginning. This is because it can lead to confusion and cause frustration for the autistic. An important aspect is when the child begins to go to school, make sure that the way things are done in school are followed at home and vice versa. “Speak to the teachers, and work as a team. Let them tell you everything that they do at school and then do the same things at home.”

BEHAVIOUR MANAGEMENT

Teach them what is acceptable behaviour and what is not. “Because they don’t understand the world that they live in, it’s a different world than the one they understand. They don’t know that blurting things out about a person’s physical outlook is impolite, for example. Because they are born with no inhibitions and they don’t mean it in a malicious way. They say it because that is what they are seeing. So then you have got to tell them, you really cannot say that very loudly because people think that is not correct.”

Another important thing with autistic children is turn-taking. “There needs to be something put in place so they know it’s their turn now. Use a timer, or have a signal for when it’s the end of one’s turn.”

Most of these strategies can be applied to all children, shares Manjula. “If you start a certain regime, the child will follow especially so with autistic children who need that because of the control they need, otherwise they will be all over the place.” Many parents of autistic children say that they cannot take their child out in public because their behaviour is so random and cannot be controlled. Manjula however, begs to differ, “You have to start young or somewhere. Children can learn and it is instilled in them. When you don’t communicate or ignore them, they learn that it is alright to ignore. So it’s up to you to set the ground rules. If you don’t tell them, they won’t know what is right or wrong. So set the ground rules early.”

This matches Blackburn’s belief too who said her parents never accepted autism as an excuse for bad behaviour and treated her like her siblings.

PARENTING TIPS

In a nutshell, Manjula advises parents of autistic children to:

1. Teach them to be independent

So they are able to fend for themselves when they grow up. They learn resilience and build confidence when they can do things.

2. Take them out into the world

It’s a learning mechanism and helps assimilate them into the world. 3. Provide them freedom to learn within a controlled environment It’s the only way they are going to learn, where they can make mistakes and learn the correct way to do something.

4. Learn to risk manage

Look out for triggers or possible hazards for them. If a certain environment and situation has these elements, set the parameters the child can work within which is a safe environment for them. Risk managing should come naturally that parents develop an instinct towards eventually.

5. Always have “Plan B”

Whether it is a squidgy ball, a phone app, toy or book, something that calms or distracts them.

6. Attend parenting, autism, behaviour management courses

A lot of the courses which apply for children in general can be applied to autistic children. Keep learning and adapting your style for your child.

7. Instil a well-balanced diet

Autistic children do have certain allergies but it’s important that they are given a well-balanced diet. Introduce something new every week and make a game out of it. For example, have a chart, everytime they try something new, they get a tick. If they collects a few ticks, they get a prize at the end. See what works for them!

8. Find their motivators

Competition is a big thing for autistic children. If you can find what motivates them and put that into everything that you do, they will respond. Sometimes it’s as simple as attention. If you find that your child is behaving badly, maybe because they are getting your attention for it. Try giving them attention when they behave well and ignoring them when they behave badly instead.

Manjula Nithianathan has over 6 years of hands-on experience working with children with special needs in the UK and Asia. Besides having received numerous training in education and behaviour management, she has worked in numerous schools (main stream and special needs) in London that assist children with special needs, and more recently facilitated parenting courses in schools. She offers parents of children with special needs fresh perspectives on calmer parenting strategies. To contact Manjula, email herat manjula.nithi@btinternet.com