ok so lots of you reading this know first hand about ASD, how it affects individuals and families, how difficult it is to get recognition of the condition and then how difficult it is to convince schools the a child is not deliberately being naughty or disruptive. But some of people reading this will have little if any understanding. So I am going to try to explain through descriptions of two individuals I have worked with over the years.
I will start with Paul (not his real name). Paul came to live in the service I worked in, he was 17 at the time and had been taken into care at the age of 7 as his behaviour had become so violent that is parents feared for the safety of their other child (a girl of 5). So Paul came to us, he had no verbal language, he was ruled by routines and found even the slightest change difficult to understand or cope with. So coming to a new environment, with lots of strange faces, smells, words, behaviours, expectations, routines, everything was different and yet he was expected to change to fit in with the new routines. Paul had a very high pain tolerance in respect of temperature; extreme heat or extreme cold had little effect on him. He would self harm; usually through pulling hair out (eye lashes, eye brows and arm/leg hair). He was very sensitive to noise; vacuum cleaner and other people’s raised voices were definite triggers to behaviours. Paul’s main communication method was hitting or head butting people. He didn’t like tha bath, but the shower was even more of a problem for him. To wash his hair would take three members of staff! And his favourite past time was to put a whole roll of toilet paper in the toilet then flush it. Imagine this in your home on a daily basis, having to plan the vacuuming around another person, as their behaviour would be so extreme he would break your arm or your nose if you did it while he was there. Think about the damage that could be caused in your home of the toilet was to overflow every time it was used. Imagine not being able to ask some one for their opinion but having to second guess it and then run the risk of serious harm if you got it wrong. There is a good side to Paul though, he was very affectionate, and like to have his head rubbed, he enjoyed watching Disney DVDs and over time he learnt to accept some of the staff, he liked to go out in the car for a drive and going for a walk. He communicated through hitting but also in time the staff learned to recognise the noises he made to determine his mood. We introduced picture cards to help him understand routines and changes to routines. He had a box of his favourite toys and games he could access as a reward, and I really enjoyed working with him. He would share his food and sweets and follow simple instructions. If he understood that the vacuuming needed doing he would go out of the way to avoid the noise if he was in the house. I found him a pleasure to work with most of the time, although he did give me many black eyes and fat lips, when I got it wrong. But i accepted that most of the time his behaviour was in direct relation to me doing something wrong, not him being deliberately violent towards me.
The second person was a young woman I worked with in a residential college. I will call her Amy. Amy had difficulty expressing feelings, she was 16 when I first met her and her hormones where ruling her. She was a very messy person, her room was always the one that took longest to tidy, her hair was always needing to be brushed. She was very thin and didn’t like eating (on the verge of anorexia) she would not eat in front of others and was very picky with what she would eat. Routines weren’t too important to her, but if you said she could do something you had to follow it through. Amy was also one of the people who didn’t need sleep; 3 hours was a good nights sleep for her. She liked watching television and like many people with ASD she had obsessions. At the time I worked with her the main obsession was another student called Lee. She wanted to study the same classes he did, wanted to spend all her free time with him, sit with him during every meal time. The only reading she would do would be about him, during holidays she wanted to go to his home. So again imagine the scenario of not being able to do anything with out another person always being present. Every time she could not be with Lee she felt as if we were punishing her, when she felt punished she refused to eat, when she didn’t eat she became disruptive; trashing her room, ripping college work, smashing anything she could get hold of, and walking, she would walk for miles, any time of day or night. But again I had a soft spot for her, I supported her to understand that Lee had a life too, that she needed to eat, but if she wanted to she could eat on her own in a different room. We planned time when she could be with Lee and encouraged her reading and writing by writing him letters and doing word searches that contained his name as well as other names. She was gentle, and scared most of the time, not understanding why she had to eat and sleep.
Amy and Paul were very different people who had the same condition but displayed it in very different ways. I can agree that the triad of impairment (difficulty communicating, difficulty in social situations, and difficulty in understanding the needs of others/flexibility of thought) is present in both Paul and Amy, but in very different ways. I didn’t see two young people with ASD tattooed on their forehead or a sing above their head. I saw two very different people struggling with life.
Please remember that although ASD is a condition that affects a lot of people, not one of these people will react or respond to it the same way. Just like you will react or respond to the news of a new neighbour differently to another person.
We are all people first and different second.