Living with Asperger Syndrome
- some questions and answers

By Wendy Lawson.

Q. When did you first realise you were different?
A. I think that I always knew that I was not like others...but I didn't know why or how.

Q. How did it affect your family relationships? For example did your parents realise you were different? In retrospect could they have done anything more to help you as a child?
A. My parents were so busy with having a large family and often running their own business that Wendy's idiosyncrasies were just 'Wendy being Wendy'! I was mostly left to my own devices. At times I felt as if there was much anger directed towards me, but I never understood why. I didn't really receive the help and support that I could have benefited from, as a child.

Q. As a child, did you find it hard to make friends with other children, or were you not really interested in that?
A. This was very difficult and I had very little success!! I was viewed as 'A Know all' and the only way that I could relate to other children was if we had an interest in common, e.g. dogs or medicine (In my teens I read medical books because they fascinated me). I was interested, at a distance, in having a friend...but I lacked the social 'know how' of reciprocity and< quite often would go over board to 'buy' friends; influence others with knowledge; or, become their 'helper' to earn a friend.

Q. Did you have rituals/obsessions at an early age? If so how did they develop? And what benefit did you derive from them? Did new rituals/obsessions replace old ones? Do you (or did you) feel that you needed to control them?
A. Yes, I always had rituals and obsessions!!! Yes, they changed over time. However, they were always based around my interests: animals,insects, medicine... I like to wear clothes that are familiar (new ones hang around for ages) eat foods that are the same (I could live on baked beans on toast; mashed potato, carrots and gravy; or McDonalds!!) I hated it when routines changed and would become quite miserable, almost lose motivation for anything. I needed to be sure of what would happen; I need to know so that I can know what will happen, what to expect... I am still like this today, however, I am more flexible than I was as a child!

Q. What was your experience of school like? Did you have the same problems at school as you did at college in the UK?
A. YUK!!!! at first I was interested in school but after getting into trouble constantly and not understanding what was going on around me, school became a nightmare!! I was bullied and teased mercilessly!! I just wanted the world to stop so that I could get off and go back to being with my dog!! This did change when I left school and moved onto college,however. I think it changed because I am academic, more than social, and at College and Uni. I met others who were more like me...interested in study.

Q. What about sensitivities to sound/touch/light etc. are these are problem? If so, can you explain how/why this is and whether they have improved as you have got older?
A. Yes My ears are very sensitive to particular sounds and certain noises really hurt me...even today. I wear tinted glasses to help me cope with the light that hurts my eyes and I only wear cotton next to my skin because of discomfort with how other materials feel. I don't know why this is so, but it always has been I haven't noticed much improvement over time though.

Q. Are you able to empathsise and understand other peoples emotions? Can you tell someone's state of mind by looking at their face?
A. I'm not good at 'reading' another's body language...I often 'feel' that if someone is unhappy...then it must be my fault. I make others angry...I am learning that this isn't always the case but I still find this difficult. I don't 'feel' the emotions of others, unless it impacts upon myself. However, I have learnt how to 'listen' to others and how to ask them how they are feeling and what this might mean for them. I am naturally inquisitive about human behaviour and driven to understand both myself and others. This means asking lots and lots of questions all of the time (can be very demanding on people) not always appreciated!

Q. What are your views on the various therapies/treatments currently available such as AIT, Lovaas, Options Irlen lenses etc.? Do you have a view on these? Do you think any of these would have been of benefit to you as a child?
A. Some therapies are very good for some people/children and different therapies work for different people. The things to look out for are: The length of time and effectiveness that the particular therapy has a history off. The cost to implement and how intrusive it is upon the whole family. Is it documented and supported by known authorities? Does your child seem to benefit from it? The one thing that all agree on is that early intervention and keeping a child connected to life are the very best things that you can do for any child with autism.

Q. How did you learn to compensate for being different? Did you have to learn social skills by trial and error? If so how? And do you find that these social skills become easier with practice.
A. Yes I did learn social skills by trial and error!! Yes, they have become easier over time (much, much time). I compensate, if you like, by specialising in one area and becoming good at that. Then I have something to offer; some thing that others are interested in.

Q. What situations do you find the most difficult to deal with? Do you find it difficult talking to strangers who try to start up a conversation with you? Are you happy to talk about the difficulties that asperger syndrome gives you?
A. Anything that I am not in control of!!!!!!!!!!!!!!!!! Public transport; pubs, clubs, parties and so on. I love to talk about things I am interested in and will generally steer a conversation that way. I am very happy to talk about anything to do with autism/Asperger's...even/especially if it is to do with my own experience.

Q. What's the most important advice you would give to a parent whose child has just been diagnosed with asperger syndrome?
A. This is difficult...there are several things that a parent would benefit from, i.e. remembering that their child will grow up and they won't stay the way they are today! Pervasive Developmental DELAY is just that, DELAY not CANCELLATION!!!! A parent will need to look after themselves and take time to do this, i.e. foster time out for relaxation and pleasure; attend to personal relationships with partner and any other family members...other children. A parent needs lots of support and they need to know that that's OK. Teachers, psychologists and other professionals will not always see things the same way that a parent does...this can be upsetting but, as parents we need to fight for our children and not be put off by the ignorance of others. All of this means that for parents, it is better to join with others and share the experience, rather than try to go it alone!

 

© Wendy Lawson 1998. Wendy was questioned by John Muggleton

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