10 things that you should know about living with autistic children – from a parent’s perspective
1. Spontaneity – we can’t just get up and go somewhere on a whim. A fear of new places or a change in routine means we have to prepare our children. Sometimes we make lists showing them where we are going, how long we are going for and when we will be returning home. Sometimes we use the internet to show our children the place we are visiting and what it looks like inside and out (thank you google). Even with this preparation, there is no guarantee we will even get out of the front door.
2. Conversation – jokes, sarcasm and ambiguous language cause confusion and upset. We have to think about what we say, we have to allow for processing and to check that our children have understood us. Often we have to repeat ourselves. Occasionally we challenge our children when the moment is right and they are receptive to learning the meaning of a word or phrase. Sometimes our children use all ability to talk and we have to use miming or symbols to communicate. It can be hard work and sometimes we miss the to and fro of ordinary conversation, but over time we have started to enjoy our children’s literal abilities.
3. Togetherness - spending time together as a family can be hard to achieve, even within the home. Attention issues, sensory difficulties and anxiety usually mean someone is unable to join in with family gatherings. One child may have found relief playing on the computer whilst the other may be enjoying the solitude of their bedroom (or rather having a tantrum in it). Its no big deal; we go with them but still there are times when we miss being together.
4. Celebrations – special occasions such as birthdays, Easter and Christmas, even bonfire night, are difficult. The emotion and expectation as well as the extra social demands and sensory stimulation can be overwhelming for our children which often results in difficult behaviour. Special celebrations have to be a quiet affair, usually focusing on a wonderful meal at home, but they are still ‘our’ celebrations.
5. Holidays - Fear and anxiety make it difficult for our children to cope with a holiday away from the familiar surroundings of home. Even when we do manage a break, behaviours can be challenging. It is far easier to have a staycation and to try and have days out but then we are faced with the difficulties I outlined in no. 1.
6. Friends – my children don’t have friends mainly because of their difficulties but sometimes due to the meanness of others. This means I don’t have many opportunities to meet other mums through the usual childhood activities. Neither do I have the pleasure of enjoying our children’s experience of parties and sleepovers and the hustle and bustle of children running through our home and garden. Sad, but that’s the way it is. Instead I focus on helping my children to develop social skills and learning to make friends through ‘shared interests’.
7. Disorganisation – my children need a lot of help to remember things and to organise themselves. As a result we label things, we produce schedules and we regularly prompt our children to remember their daily routines. The use of reward systems can also help but their effectiveness is usual temporary. Initial interest soon wanes so we have to be creative and devise different systems to maintain their motivation. As a result, the laminator, stickers, trading cards and blue-tack have become household staples.
8. The mess – not only do we have general untidiness as a result of forgetful children but there is also the additional mess caused by meltdowns, continence issues and other unusual behaviours. Altogether these cause heavy demands on cleaning, laundry and general DIY!
9. Work - unless you are lucky enough to have access to good childcare, pursuing a career is difficult. Time and the emotional energy needed to look after my children restricts what I can do workwise and any aspirations that I may have remain as dreams. Nevertheless seeing my caring and advocacy roles as work in their own right can offset any sense of inadequacy I may have.
10. Relationships – so much time is taken up with helping our children, it leaves little time for us, the parents. Relationships can come under massive strain as me and my husband struggle to find time to look after ourselves and each other. Nevertheless making sure that we have one night off a week to pursue another interest (exercise for me, music for him) really helps to recharge our batteries.