I have been learning about autism for what seems like a long time now. Over the years I have gained experience of parenting children with autism, and have had to adapt and change my expectations.  I started off this journey pretty clueless, I had not had any experience of children with special needs, and in fact had not even heard of autism. My arrival into the world of being a special needs parent came as a huge shock, when I was told my 2-year-old son was autistic, and this would be a lifelong disability. At that time, I had no idea what challenges lay ahead, to me James was just a fussy eater who was late with talking and didn’t like loud noises.

Tim was born when James was 3, I later learnt that he also had autism, but with the added problem of extreme demand avoidance. Tim suffers with severe anxiety, this was evident throughout his early years with his adherence to strict routine and rituals. However, when Tim started high school, and reached puberty, his anxiety became unbearable for him, and he had to be in control of his environment and routine at all times. In basic terms, if you request that Tim do something that he has not chosen himself, whether that be going to bed, getting dressed or going to school, he will try every measure no matter how extreme,to not comply. Not making choices himself causes him uncertainty of what will be asked of him next, which in turn causes him anxiety and panic.  If you ask him to get dressed, in his mind that may lead to being asked to leave the house, so for him its best not to get dressed at all.  His tactics include ignoring, distraction, refusing, hiding, running away, shouting, and at times he hits out. I have found this the most difficult part of autism to deal with, especially now he is a big strapping 13-year-old, he is too big to just carry into the car and take to school. He is currently unable to attend school at all because of his anxiety, so I have had to adjust my whole life to adapt to his needs.

When James was having meltdowns in the supermarket the thing I found hardest was the lack of control. I felt there was nothing I could do to make him stop screaming and kicking on the floor. Hugs didn’t help, neither did firm words, we were both basically at mercy to his meltdown. The stares and comments from fellow shoppers, were almost as hard to deal with. I would become aware of my face turning red, worrying that people didn’t understand my child had a disability and was in distress, thinking they were judging my parenting, or labelling him a spoilt child.  At school Tim couldn’t stand in the playground with the other children, he would find the sensory stimulation too much, so would refuse to get out of the car. If I managed to get him in the playground he would scream, and if this wasn’t hard enough to deal with, there were the judgements and opinions of some of the other parents to cope with. One mother even moved her child into a different school because there were 3 special needs children in the class and she was of the opinion her daughter would receive a better education away from our ‘unruly’ children.

The things that have helped along the way have not always been things that have cost money, or required physical help, but they have meant a change of attitude. The change of attitude has been from me as their mum. I have learnt that other people’s opinions don’t actually have any relevance or importance to me or the situation. They do not have to cope with the behaviour and distress of my children, and I am doing the best I can. Once I was able to ignore and not internalise other people’s opinions and judgements everything became easier. I was less stressed, and able to concentrate on the child who was struggling, rather than feeling anxious myself which rubbed off on the boys. Now I feel sorry for those judgemental parents, because they lack understanding and empathy.

I have learnt not to sweat the small stuff. James went through 4 years of eating a very limited diet, mainly ham sandwiches, bananas and yoghurt. For 2 of those years I worried myself silly, every mealtime consisted of me trying to get him to eat different foods, fuelled by the fear he would die of malnutrition. I tried everything I could think of, but nothing made any difference. One day a friend said that her son only ate cereal for 7 years and now he is a fit strong man and to not worry about it. Realising that nothing I did made any difference to what he ate anyway, I decided from that moment on not to worry about it. Mealtimes now consisted of me serving him up his ham sandwich, and no pressure. Soon meal times were enjoyable again, and we could talk about something other than “please just try one little piece of carrot.” Now he eats a varied diet, he even tried sushi a few weeks ago, and yes, just like my friend said, he has grown into a healthy strong 16-year-old.

Tim has been very difficult to cope with since he hit puberty and the increased pressures of adolescent life have caused his anxiety to increase. His demand avoidance became so severe that we were having hour long battles to get him to change out of his pyjamas. He basically became unable to function because he had to be in control of everything, I called it his ‘life strike’. He was unable to attend school, and barely left his bedroom. Again I realised this situation was out of my control, so things had to change with my attitude.  I realised that I had to reduce all demands on him except those that were essential to his health and wellbeing. If Tim wanted wear pyjamas all day, I allowed him to do so. My plan was to reduce his overall anxiety by reducing demands, and then slowly build up to the stage he was able to function again. It is still early days, his life strike began 9 months ago, but since I stopped putting demands and pressure on him we have made huge strides forward. Now every morning he is choosing to get dressed, he is spending time downstairs with the family, and is even managing trips out, this weekend we went to the cinema to watch The Jungle Book, and he really enjoyed it.

Tim is not able to articulate why he can’t cope with leaving the house, but through observing patterns of his behaviour and putting myself in his shoes, I have been able to work some things out to make it easier for him. When I say to him “we are going to the shops get your shoes on please” he does not know what to expect. He has questions in his mind such as how long will we be in the shop? Will we go anywhere else? What if I’m thirsty or hungry? What if it’s noisy or crowded? Will we go anywhere else? This all raises his anxiety, which causes him to refuse to cooperate.  I have made things much easier for him, by anticipating his concerns, and preparing in advance for potential situations. I take him a bag with a drink and snack, his tablet and headphones and a book I make sure I stick to the plan and don’t throw anything unexpected into the mix, such as popping into another shop. I tell him approximately how long we will be in the shop, because otherwise with his fear of the unknown, he may be thinking we will be there the whole day. As his anxiety decreases I aim to stretch his comfort zones, but at the moment just to get Tim out of the house is a miracle in itself, considering where he was at the beginning of his ‘life strike’.

The best tips I can offer another parent of a child with autism is to not care about other people’s opinions, to adapt your own attitudes and behaviour instead of trying to change the child, and to stop sweating the small stuff. All these things will reduce your stress, and in turn your child’s, and make family life that little bit easier.

 

Rebecca has 4 sons aged between 11 and 18. James, 16 and Tim, 13 both have ASD. Family Fund has provided the family with Butlin’s breaks, which have been great fun for all of them, the boys love the swimming pool the most, and Rebecca enjoys the break from cooking.