Daily Life for Someone who is Ably Autistic

by Stella MacDonald

Including Asperger's Syndrome and Semantic Pragmatic Disorder

written with the assistance of her teenage daughter, diagnosed with Asperger’s Syndrome.

An ably autistic individual does not understand the meaning of life in the way that we do. They have difficulty understanding the meaning of relationships between people, and why activities are carried out - the meaning behind the activity, and the need to feel a sense of satisfaction from achieving goals from each task, especially difficult ones. The reason for this is that they have problems taking information from one situation to another, as they do not know what information to take unless told, resulting in difficulties making associations between events.

This hinders their ability to build on and learn through their experiences which, in turn, can affect every aspect of their existence: including their speech and understanding of language; non-verbal communication; their perceptions of information received through their senses; posture and movement, and what is appropriate and inappropriate behaviour - to name but a few. Because of this, they live very much in the present moment with their perceptions of everything being very literal, creating a poor awareness of time, which can sometimes frustrate and confuse those working close to them. They tend to feel 'apart' from their surroundings. To cope with these challenges, there may be evidence of inappropriate behaviour or, perhaps, to create some order in their day, they may stick rigidly to certain rules they have learnt, becoming extremally agitated when change occurs.

The majority of capable individuals, those usually referred to as the debatable word 'normal', are able to take information from life's experiences, make the relevant associations with the present, and further extrapolate information to use during a future event. As they will have developed or innately held the strategies for coping with everyday life, each day can be compared to a loaf of bread, which is whole and not sliced. Each part of the day connects, with themselves allowing for a 'transition time' preparing for their next task, before completing their present one, thereby creating that necessary awareness of time and their position within the day as a whole. ~~he bread bears it's ridges and inconsistencies and these represent the ups and downs which are experienced in everyday life.

When faced with the prospect of the day before them, they are able to recognise and predict some of the hurdles that lie ahead, and plan their behaviour accordingly. In doing this they are able to consider how they will cope in a challenging situation, and adapt their role in that situation to compensate for the anxiety that they may feel. Or they seek advice.

With the day 'flowing' in this way, they grow as individuals, becoming aware of, and reflecting on, their strengths and challenges - developing a recognition of their self identity. They know how to project their

strengths, absorbing another's appreciation of them, and have developed coping strategies to use when challenged. This encourages a sense of 'belonging' to their surroundings.

They are also able to, when faced with a difficult task, look for a goal or think of a way to reward themselves once it is over. This is something that ably autistic individuals find extremely difficult to do, and without help to develop these strategies, that most of us take for granted, they will find it impossible to do.

For these individuals affected, each day can be compared to a 'loaf of sliced bread', with each slice of bread representing an experience that day. If studied closely it can be seen that what would equal one experience for the majority of us, actually consists of a number of experiences for them, with a breakdown of 'transition time'. Their focus may be on a particular task, but if something unexpected happens, generally a sensuary (visual, sound, taste, smell & touch) distraction, then without assistance the initial experience unpredictably, and suddenly, becomes another. They tend to be overloaded with information coming from all senses, and do not know which information to filter out or focus on. They need to be taught, in every situation, what information is relevant and what is irrelevant. Therefore, in an unstructured setting they tend to feel insecure, which can result in anxiety, with feelings of isolation usually occurring from approximately age 6 onwards. Equally, again from age 6 years onwards, in a structured setting, with rigid rules, they will be seen to survive better. However, unless they are shown genuine acceptance by their peers and those closest to them, their underlying loneliness and challenges will be missed or misinterpreted - e.g. he/she seem happy when they are by themselves. This is simply not true. There may be an apparent happiness, but they feel more comfortable being alone rather than going through the pains of rejection, and feelings of failure, unable to understand how to be like those about them. Yet there will be an urgent need to feel that they belong. As a desperate measure, they may mimic those about them in the hope that they will be accepted. Unfortunately, they may imitate some social behaviour that are not acceptable, and will not detect this until told. In this instance a frilly detailed explanation is required, tailored to the individual.

Daily life, experienced in this way, creates a feeling of 'detachment' from their surroundings. A recognition of self identity is lacking, as reflection of self and experiences does not occur automatically. So often finding that they have forgotten to use information already taught, at the appropriate time, yet being aware that they knew it, once reminded. Failed again! This is somewhat frustrating for them, not understanding why, with their awareness of their challenges increasing daily.

Compensating for their 'apparent' inabilities, as perceived by the onlooker, those about them feel the need to assist in organising their day for them. This is often carried out in a somewhat controlling manner. The unforeseen results of constantly controlling them is that they have an overwhelming feeling that they have no say in what they should be doing. This only makes them 'dig their heels in'. It is important that strategies are developed so that they feel in control of any decision making.

However, it is equally important to remember that without constant assistance and awareness of the 'hidden' challenges that these children and adults have, then the only existence they will be able to have is one that is predictable, structured and routinely timetabled. On the one hand this may appear comforting, but in reality it is not possible to exist like this without feeling isolated and lonely. We live in a world where life is unpredictable and constantly changing. The effects of this on these individuals is panic and anxiety. Sometimes leading to a depressed state of mind.

It is, therefore, important to teach them that during their day it is OK to expect change. It reflects the reality of our existence. To assist in the survival and understanding of life are realistic and necessary goals. They need to be taught how to:-

1) Extract, focus on relevant and filter irrelevant information from their experiences.

How to look for similarities in other situations, so that they may use what they have already learnt appropriately. Using pictures, charts and photographs are extremely effective tools.

2) Set goals / targets

set reasonable positive goals that may be reached, initially after each task, on the same day. For children, a visual reward system is useful e.g. raffle tickets, with an agreed reward when so many have been collected. For the older child, promote strategic thinking and behaviour solving problems flexibly. it is important to clarify the concept of 'strategy' as something that people do to achieve goals when there are obstacles.

Positive recognition and active reflection of performance, both successes and failures, is important as it aids, the development of:

3) A link with time and identification of their strengths and challenges.

To achieve this it is worth reminding ourselves that we all enjoy feelings of - security - being liked and wanted - having something to offer. These are important ingredients to project before any progress may be made.

They aid in the development of self respect, self esteem and self worth, which in turn make up the very foundations that encourage us to earn.

Without realisation and development of their self identity they become 'detached' from their experiences, as mentioned earlier, unable to detect the 'cues' around them that help them utilise rules, information etc. already taught, and mentally stored. (This information may be verbally regurgitated when requested - puzzling many) They are more able to 'see' others do wrong or make a mistake, as all the 'cues' are visibly present, including the people concerned. They are able to see the 'whole picture'.

Useful methods to enable an ably autistic person:

a) Simulating their control: Brief immediately before any predicted events, talking through all eventualities. Preparing and equipping them appropriately. At this stage it is useful for their experiences to be predictable, and expectations clearly defined. Use the key word we/or their name instead of the targeting and impersonal you, when discussing expected behaviour etc. Try to avoid negative words and statements. Teach them what actions they should be taking, rather than focusing on what they shouldn’t. If necessary, avoid KNOWN difficult situations - until it is felt the time is right, as further knowledge and understanding is gained.
b) Stimulating their control: Use choices - talk of rewards and any consequences. Assist them in recalling information already taught, especially in connection with the task about to be undertaken. This aids in developing their decision making skills, step by step towards their independence. A slow but steady process. Role play is an excellent way of introducing effects of behaviour upon others.
c) Targets: After a period of time (individually gauged, usually in teenage years, when information recall is being used quite independently) assist their setting of attainable targets for smaller issues that remain addressing. It is more fruitful if targets are initiated through their own recognition of what they realise requires addressing. Suggestions may be made, but done in such a way that they make the final decision.
d) Appreciation: Unless taught, they will not realise what their strengths are and how these may be projected in a positive way, absorbing another's appreciation of them. Also to become aware of their weaknesses, and how to compensate for them through developing their own coping strategies.
e) Accept them as they are. Forgive any 'hiccups' and move on.: Valuable services, as required, are provided by the Psychiatrist, Clinical Psychologist, Paediatrician, Dietician, Education Psychologist, School Doctor, Speech and Language Therapist, Occupational Therapist, Teachers, Learning Support Staff, Auxiliary Support, Social Worker, Support Groups etc.

Our only wish being that with our help, these people will develop to their fullest potential, becoming as independent as possible.

This is an ongoing process that must be delivered 24 hours a day, if necessary. In the less structured areas, such as home, it is important to realise that their parental carers and siblings will require a lot of support and understanding. Within school, college, or university settings it is not easy to see the underlying difficulties of these individuals, yet it is easy to become complacent and think that all is fine when indeed it is not.

Progress can always be made, no matter how small.

By Stella Madonald, written with the assistance of her teenage daughter, diagnosed with Asperger’s Syndrome.