Autistic Consultant & British Psychologist, Wenn, leading by example to empower autistic individuals and promote quality co-produced research

Schooling

Being diagnosed with an AS (specifically high functioning autism level 1) in August 1994, I would suggest that I experience the same kinds of difficulties as others diagnosed with AS. For instance, we dislike change (we prefer routine), we tend to be obsessive, we become anxious very easily and we take what is said to us literally (For example: teacher says "...pull your socks up John or you won't make it into the team." John bends down and pulls his socks up. The teacher tells him off and calls him a 'smarty pants'. John replies that he doesn't have any smarties in his pants. Teacher sends John to the head mistress/master because he 'talked back to them'. John doesn't know what all the fuss is about... he is missing his favourite period at school, the time on the computer and he becomes very upset. John comes home with a note from his teacher that requires him to do detention for insolent behaviour)!

Before I received a diagnosis of AS I thought that my difficulties in every day life were because I was not as intelligent as other people. The only way that I could cope with my daily confusion and frustration was by living according to my rules, rituals and routines.

Also, since receiving a diagnosis of AS I have been able to come to terms with both who I am and what I can do. For example, I avoid social gatherings because they are very confusing and scary. I find it difficult to know how to maintain a conversation... unless it's about a favourite topic of mine. I also get over loaded with all the sensory information that comes from people in a social situation, such as conversational noise, movement of people, clothing, doors and so on. The only time I enjoy social occasions are when they occur on my terms with friends that I know and trust. I can plan these times, enter and exit when I want to and I can be myself.

As you probably know, neuro-typical people are quite different to those of us with AS. They may seem strange and confusing. Why do they say things they don't mean? Why do they so often talk in riddles? Why aren't they interested in our most favoured of topics? Why do they choose to be amongst a whole group of folk at a party rather than spend the best time on the computer? Why do they have such complicated emotional interactions and relationships? In fact, why are they so illogical and complicated when life is all so simple?

AS students have different priorities. We fail to see the rational for taking lots of time to socialise.... It simply seems like a waste of time! It doesn't mean, however, that we don't need leisure time... we just spend it differently.

Understanding the differences between us is one essential ingredient in working together. For most of us, talking and sharing in conversation is an everyday fact of life that requires little thought. If, however we are going for an interview, or to an appointment that requires 'careful conversational consideration' (the 3C's), then we usually take more time to think and construct what we want to say. "So, what's your point?" you might be thinking. Well, if we are talking to neuro-typical individuals (folk who don't have an intellectual, social or communication disability) then 'conversational chit-chat' (the other 3 C's) might be appropriate! However, when we are talking with AS individuals the three C's we choose can make a difference as to whether or not we are understood. As we all know, understanding is the first 'key' to good communication.

I guess that it goes without saying that student's need time tables. But, what if the time tabled program has to be canceled? Maybe the teacher is sick or maybe the bus driver failed to turn up! For whatever reason, the activity will not take place. Now, to an AS student this can be devastating. Remember the problems we have with 'predicting outcomes'? Well, we don't do this at all well. Therefore, we don't cater to being adaptable and accepting of 'unprepared for' circumstances. It is very wise to have options time tabled. If swimming has to be cancelled... then have option 'B' (Table Tennis for instance), already time tabled as an alternative.

Knowing what a student's study skills are is a good place to begin to know what skills they will need most help with. Designing a student inventory for both study skills and social interaction is a must at the start of every new term.

OK, as I have already hinted at, I have very uneven skills. This is another one of those enigmas. I have University degrees, I have been married and I have four grown children. However, I have huge problems with being disorganised, getting lost, using public transport, understanding others, and just the practical interactions of social situations. I think many of you might be saying "So what, I do as well." I know that neural-typical individuals might have issues in these areas but I would suggest to you that it is the degree of the 'issue' that separates us. How many of you need to sit down on the path outside of a supermarket and do breathing exercises because they have changed the tinned soup isle?

Building self-esteem at home is terrific, but it needs to happen at school too. Knowing what a student's study skills are is a good place to begin to know what skills they will need most help with. Designing a student inventory for both study skills and social interaction is a must at the start of every new term. For example, have the student complete a questionnaire, like the one following:

Study Skills
- My hand writing is messy
- I write too slowly
- I don't like making decisions about what is (or is not) important when reading a book or journal article.
- I get distracted easily.
- I find it much easier when people use concrete examples; I don't know what to focus on in exams (and I always run out of time).
- I don't like sitting exams in strange places.
- I am a perfectionist.
- I'm not very good at problem solving (I don't like making decisions about particular responses).
- I find it hard to be motivated about some topics (and some topics upset me).
- I'm not always able to sit still for long periods.
- I'm not good at setting long term goals.
- I am not good at getting to class on time or remembering all the equipment I need.

Social interaction

- I like to be left alone at times.
- I'm never sure when it's OK to interrupt in a conversation.
- I have difficulty knowing when people are joking.
- I find it quite hard to look people in the eye.
- I'm not very good at interpreting non-verbal cues.
- I'm not competitive (winning or losing is not important to me).
- I'm not good at conversing with others.
- I don't understand what is funny in many jokes.
- Others have said my speech is odd or eccentric.
- I find it difficult to make friends.
- I'm not very good with sarcasm or metaphor; I like people to say what they mean.
- I can get impatient when people don't understand me.
(taken from 'Towards success' in Tertiary study 1997)

When relating to AS people it is important to remember the keys to understanding AS, these are:
a. we are singly channelled (we either look or we listen, rather than doing both at once).
b. we take words literally: ("Can you make your bed James?"). Neuro-typicals mean "tidy your bed James", but an AS person might understand "Do you know how a bed is made?" to which the answer might be "yes" or "no", but it might not mean that James complies with the request, because he hasn't understood the instruction as it was intended.
c. we are not good at predicting consequences. For example: child picks up stone to throw it and is very upset when it lands upon another's head!
d. We do not like change, because of difficulties with predicting outcomes.

Therefore, it is good to:
- Check out the autistic person's perception of what is being asked, demonstrated or said.
- Teach that behaviours, emotions and desires can have particular facial and bodily expressions. Explain what these are.
- Rote learn rules for specific situations (i.e. we hug family members, not strangers).
- Give time, whenever possible, to acclimatise to change and don't suddenly 'spring things' onto the person.
- When the individual is anxious: use music, space, reassurance, relaxation and breathing exercises, a calm voice and any other acceptable know anti-stressor.
- Place expectations into context via 'social stories'. This gives the individual a fuller picture of the 'what's', 'wherefores' 'whys' 'how's' and so on.

SOME USEFUL REFERENCES

Al-Mahmood, R., McLean, P., Powell, E & Ryan, J. (1997) 'Towards success in tertiary study: With Asperger's Syndrome'. Commonwealth Department of Education and Employment Training and Youth Affairs. Melbourne, Australia. (to obtain copies of booklet: phone: 03 9344 8030)

Attwood, T. (1998) Asperger's Syndrome: A guide for parents and professionals. London:Jessica Kingsley Publications

Attwood, T. (1992) Professionals section 'Managing the unusual behaviour of children and adults with autism' Communication, Vol 26(2) UK.

Bitsika, v., Sharpley, C. and Efrimidis, B. (1997) 'The influence of gender, parental health, and perceived expertise of assistance upon the well-being of parents of children with autism' Journal of Intellectual & Developmental Disability, Vol. 22, No. 1, pp. 19-28

Bourke, K.M. and Richdale, M. (1994) Pervasive developmental disorder, behavioural problems, family stress and level of support. Unpublished thesis. RMIT, Bundoora.

Frith, U. (1992) Autism and Asperger Syndrome. London: Cambridge University Press.

Harchik, A.E., Harchik, A.J., Luce, S.C. and Jordan, R. (1992) 'The special educational needs of children with Asperger Syndrome'. Educational Research Info Autism Group, University of Hertfordshire. Paper to Wakehurst Study Weekend on Asperger Syndrome. Chester, UK.

Jordon, R.R. and Powell, S.D. (Sept. 1992) 'Remediating the thinking of pupils with autism: principles into practice'. Journal of Autism and Developmental Disabilities, Vol. 22:3, New York: Plenum Publishing Company.

Lawson, W. (1998) Life behind glass Southern Cross University Press: N.S.W. Australia.

Rimland, B. (1993) 'Developmental Disorders: the autism continuum' Journal of Autism and Developmental Disorders 4, (23) 71-85.

Santomauro, J. (1999) The Mystery of a special kid, PO Box 293, The Gap, Qld, 4061 (josies@powerup.com.au)

Santomauro, J. (1999) Set for gold: Stategies for life, PO Box 293, The Gap, Qld. 4061 (josies@powerup.com.au)