Extract from Behaviour Skills for Parents, Teachers and Support People – A focus on Autism, by Trevor Lewis
AUTISM
What Is Autism?
Rather than supply a typical clinical description of what Autism is, and how it will affect the person diagnosed with it and their family / support people, below is the explanation of Autism that I have given to many Parents and others who asked that simple question that many have “What is Autism, what does it mean?” My description, or rather explanation of Autism, is from my observations, experiences from my work, discussions / assessments with those who have autism, and conversations with those people who have had their lives affected by supporting a person with autism. It is also influenced by my personal insights having some autistic traits that have partially shaped my own life.
Being In an Alien World (written from the point of view of how someone with Autism may see the World, and how they would explain having autism)
To some people with autism, the World around them is alien, in that they just don’t seem to be a part of it or maybe more rightly described, the World doesn’t seem to be a home that they feel comfortable in. All the noise, motion, shapes, colours, and so many various personalities that confront a person with autism every day, all seem so over the top and just plain irritating and stressful. The pressures of conforming to social norms, when you don’t really know or understand those norms, is a constant stress.
Communicating with others does not just seem awkward and sometimes even unnecessary (after all, why would I want to discuss your World with you, when it doesn’t interest me in the slightest) but it is also yet another task that makes me have to consider what someone else is feeling or thinking about. Trying to understand and accept that another person’s feelings and ideas are just as important as mine is not easy. Yet sometimes when I do focus on other peoples’ feelings it becomes simply overwhelming, and I find I either get very angry, sad, worried, or completely frustrated. What is in my World, in my mind, is all that I concentrate on, partially because it helps me block out an environment that is full of other meanings, emotions, ideas, that just get on top of me and make me lose my own thoughts.
My own interests though are very important to me. I am usually happy to communicate about or at least spend huge amounts of time interacting with my own interests. These interests often become an obsession to me, and I would be quite happy to spend every waking moment just interacting with them. Collecting certain objects is common and look out those who may try and interfere with my collections! However, as quickly and as strongly as these obsessions start up, they may also end, and some may hold little to no interest to me in the future.
I really do not like things to go differently from how I expected them or how I had planned out they would occur. It pays not to go changing plans at the last moment, as it isn’t just annoying, it makes me feel like I have completely lost control of what was happening to me and I may get very upset or even angry. Many people don’t realise just how frustrating and upsetting this can be for me, and some even think I am just being ‘naughty’ or being a ‘spoilt brat’ because I didn’t get my own way. You need to realise that this is not how it is, instead let me give you an example so you might understand why I get upset with sudden changes to my routine. Imagine you were going on holiday; you drive for three hours solid to get to your destination of choice to find when you arrive in the town you expected to arrive in, somehow, you have driven in exactly the wrong direction and arrived at a completely different town. You have nowhere to stay, and you don’t know anyone there to ask for help. Imagine how you feel – frightened, upset and angry, no amount of smiles and comments of “don’t make a fuss about it” will make you feel any better. That is how I sometimes feel when something goes very differently from what I expected.
Things are very ‘black and white’ to me, or putting it another way, I think very concretely, what I see and hear is what I accept as being so. So, if you use slang or jargon, instead of just being straight forward with what you tell me, I may not only get confused, but frustrated and maybe angry too. Sometimes when I hear someone use slang, I may make mocking comments or similar communications to belittle the person making them. Why use slang when there are terms there for describing what it is you want to say or describe? It’s the same with rules, I like people to follow what is expected of them, rules are there for a purpose and people should just follow them. When I know and understand a rule, I will rarely break it, and if I do I may upset myself as well as others and be disappointed and frustrated that I did what I so did not want to do, or want others to do. Sometimes I may punish myself when I have broken a rule that I previously accepted and followed, and sometimes I may even try and punish others who I believe have broken a rule.
Words, both written and verbal, are ok – but pictures and objects hold a lot more meaning. They are concrete – what I see is what is real, what is actual, where words are just that – words, and are somewhat abstract, no matter how well they are put to me. If I am struggling to understand something, try explaining it to me with the use of photos, drawings, or icons – it may help quite a bit in getting me to understand.
Sometimes I like to be by myself, I’m not depressed, I’m not being unsocial, I just like to have my own space, no noise, no one bugging me. There are times where I sort of want a combination of being alone and being around others. What I mean is, at that time I want someone in my same environment, but I just need them to be quiet and not talk to me. I’m not being rude I am just being, I guess, autistic – it’s just the way I am and I don’t do this to cause you any offense.
I ask you to get to know me over a long period of time, I struggle to get to know people and to like people – after all, you will never understand exactly how I see the World, just like I may never understand how you see it. So again, give me time, be patient, I am really a neat person I just see things different from you that’s all.
Below, I have listed some factors you need to keep in mind when using the strategies as outlined in this book when supporting someone with autism.
Concrete Thinking: If it is black and white, it is black and white – not white and black. This type of thinking is common in autism. Because of this we need to ensure all our requests are made using plain language, no slang terms or abbreviated language. Saying to a typically developed child “Hey, you need to clean up that pigsty” would usually be responded to with some humour. To a child with autism this may simply totally confuse them – their bedroom is a bedroom, not a “pigsty”.
Step – By – Step: Always break down tasks into list type instructions. For example, instead of “Come to the table now and sit down and start eating your dinner so you finish in time to be able to get out to soccer practice” – an earful in anyone’s terms, you need to break it down – “Come to the table now” – once at the table “Now sit down in your chair” – when sitting “Eat all your dinner up” – Now take your plate to the kitchen sink” – and so on. Naturally every child with autism is affected to differing degrees, so you need to customize the level of task breakdown according to your child’s needs, but start simple and work your way up rather than the other way around.
Visual Prompts: Use pictures of tasks needed to be performed on a regular basis. That is, a picture of teeth being brushed in the bathroom, a picture of lying in bed sleeping in the bedroom, etc. You may also be using a picture exchange system for communication rather than just verbal prompts – if so, continue with this. You can also set up *visual lists of daily routines. For example, first picture is …
For a lot more information on autism and behaviour get your copy of Behaviour Skills for Parents, Teachers and Support People – A focus on Autism, by Trevor Lewis