A parent reflects on the little things that make a big difference to her daughter with ASD
I felt quite experienced. I had worked with children and families for years in nurseries, schools and family centres, and then as a social worker. However, nothing had prepared me for the twenty-four/seven challenge of living with autism. Guilt, sadness and overwhelming exhaustion marked the pre-school years of my daughter’s life. I didn’t know what to do.
My youngest girl was diagnosed with autistic spectrum disorder/Asperger’s syndrome when she was three years old. She is now ten and has a wonderful and unique way of looking at our world.
“You will teach her; she will learn”. These were the powerful words from the gentle paediatrician who fully diagnosed our daughter. Her words were my starting point to discovering the small changes we needed to make to help our daughter.
Social learning does not come intuitively to a child with autism. Reading people is the hardest task of all. Understanding what people are saying and really meaning can make life hard. The small changes I describe here are based on my experience of daily life.
Small ways to help communication
- Don’t fuss! It has taken me six years to learn not to ask my daughter questions after school.
- Give one instruction at a time using as few words as possible. Use the child’s name first to get attention.
- Allow her to process what you’ve just said before repeating yourself.
- Check that the child has understood what you said.
- Sit alongside the child – it’s less confrontational than being face-to-face.
- Don’t expect or demand eye contact.
- Pay attention to special interests and use them in learning and conversation.
- Be clear about what the child can do.
- Avoid expressions that can be taken literally.
- Tell her when she gets something right or does something well.
- Talk via a puppet or favourite toy to reduce confrontation.
- Break down social learning into bite-size pieces; for example, “People like it when you say hello”.
- Persevere and be patient.
Small ways to help transition
Change can make a child feel anxious. She may not know what it is she is meant to be doing, what is going to happen next, where she needs to be or what she needs to have with her.
- Visual timetables can be used for daily routines and special events such as trips. You can use photographs or line drawings. Talk through the timetable with the child to make sure it makes sense to her, or get her to make it with you.
- Use a timer to show how long an activity will last.
- Give the child a special bag in which to keep all the things she might need.
- Let a puppet do the talking through transitions from one activity to another.
Small ways with sensory sensitivities
Children with autism process sensory stimuli differently to other children. They may be over or under sensitive with their touch, balance, body awareness, sight, hearing, taste or smell. My daughter likes certain textures to touch. There are foods she cannot tolerate because of the way they feel in her mouth and she likes to keep food separate on her plate. She has a very high pain threshold.
- Stress levels can affect sensory sensitivities.
- Give the child plenty of physical space where she will be comfortable and not irritated by those around her.
- If injured, don’t assume the child will cry, scream or ask for help. Teach her what to do if there are visual signs such as a graze, blood or swelling. An injury may only be felt hours later.
- Some children have specific sensory feedback needs. They might fidget less if they sit on a cushion or feel more comfortable sitting in a corner.
- Some children will find certain sounds painful. These might include the school bell or hand-dryers.
- Certain smells may be hard to tolerate.
- If possible, remove the child from the source of irritation.
Small ways to take a break
Sometimes, the child with autism becomes overwhelmed by people and busy environments. She cannot escape from the constant pressures of trying to interpret faces, language and gestures or the stress bought on by sensory sensitivities. I have learnt that there are times when taking a break is essential for my daughter. It gives her time to process all that has been going on around her and restores order to her overloaded mind. We make dens behind the sofa, under the stairs and in the garden.
- Provide a tent that is just for the child with autism. You could put some sensory toys or paper and pencils inside. Give the child permission to use the tent and a way to access it and rejoin other children.
- Create a quiet work space for the child which faces the wall to minimise sensory overload.
- Routine jobs and tasks which are quiet and repetitive can restore an overwhelmed mind. These jobs could be part of the structure of each day or used when needed. This will give a sense of purpose and order to taking a break.
Small rewards that celebrate success
My daughter loves reward charts. She likes to use stickers to visually measure her success. When her anxieties threaten to overwhelm her and start to engulf us as a family, we reach for a reward chart.
- Keep reward charts simple, with attainable goals.
- Work out what it is that needs to change or be learnt, and break down the learning process into small chunks. For example: I stay in my bed all night and see mummy at 7am. After three nights (three stickers) there is a reward of a special magazine. Then extend the length of time between stickers and reward.
- Repeated social learning that is clear, instructive and engenders a visual reward works. It may take years to learn something but the rewards are huge for the child, parents and siblings. What elation we all felt when my little girl first slept in her bed all night without waking me several times to check that I was still there.
Every small change we have learnt to make has benefited not only our daughter but her sister, ourselves as parents and her peers. We rejoice at the small steps of progress that are leading her to fully participate, in her own way, at home, at school and in the community.
Hazel Reeves is mother to two daughters, one of whom is diagnosed with ASD, and the author of the children’s picture book series Roar the Little Dinosaur: