A mother of three children with autism is on a mission to help families affected by autism get the most out of the upcoming school holidays, and raise awareness of the condition.
School summer holidays can present a real challenge for parents of children with autism. Those with the condition often encounter significant barriers in communication, social situations and making sense of the world around them.
Louise Green from Burgess Hill, West Sussex, who is a member of the National Autistic Society, explains, “The six week school summer break can often be a great opportunity for most families to meet new people, and experience new sights, sounds and smells. But many children with autism rely heavily on a routine. The prospect of change can be very frightening, upsetting and disorientating, and the sensory overload can sometimes be tough for a child with autism.
“Parents of a child with autism want them to have a fantastic summer just like any other family but when days don’t go so well you can feel isolated and even a bit of a failure. I’d like parents of a child with autism to know that there are lots of other parents who have similar experiences and great advice to share. Many of them are members of their local National Autistic Society branch which provides an opportunity for parents to share their information and ideas and learn more about autism.”
Louise’s three children have all been diagnosed with autism and range between the ages of 4 and 7. Louise and her husband James are really keen to help raise awareness of the condition, she says: “Sometimes when you’re out and about in the holidays and your child is confronted with something unexpected they can panic and react in quite a dramatic way. It can be difficult when it happens in a public place. Autism is an ‘invisible disability’, so to an outside observer it can look like your child is just being naughty when they are actually really struggling to understand what’s going on around them and their only way to communicate or deal with these emotions is to act out through a tantrum for example.
“When people stop and stare and sometimes make thoughtless comments you want to explain, but often your hands are full just trying to contain things and calm your child. It would be great if there was a bit more awareness of autism, so that people would see the situation for what it really is, and not judge the parent or the child. I promise we’re both doing our best under circumstances that can sometimes be pretty tricky!“
Louise has some straightforward advice that can help families get the most out of the summer break, “My top tip is to keep things simple. In the past I have worried that we weren’t doing days out like other families. But when we tried to take the kids to the theme park at Easter it was disastrous and become very stressful for both me and the children. We’ve now decided either my husband or I will take one of our children at a time to avoid another big family upset that can easily spiral out of control.
“I guess what we are trying to realise is what works best for our family and not to worry about doing the same thing as everyone else. We are lucky to have a large back garden so I plan to invite my children’s friends round to play at home and hopefully the weather will be good enough to get the pool out which the children all love, rather than having to organise day trips out.
“It can also be really beneficial to create some type of structure for the holidays. You can do this by something as simple as using a white board to write the next day’s tasks every night before bedtime. My two boys are both pre-verbal and my daughter has Aspergers so it’s really important for us to use visual timetables to explain to them what we are doing and what to expect next.
“I also find my own unique way of creating structure by making up songs which become familiar for the children. For example I have a silly song that I sing when its bathtime which helps my children engage with me and understand what we are about to do next.
“However the biggest challenge for me this summer is going to be preparing my youngest son Harry for starting school in September. He will be joining Newick House School, a specialist school that have a number of dedicated classes for children with autism. Harry has been coming with me to drop his older brother off to school there regularly, and has also attended some transition visits and really enjoyed his time there so I know he’s really excited about starting. But the reality of getting Harry into a new routine, attending school and even having to wear uniform and proper shoes are all going to be extremely challenging and something I will be preparing Harry for throughout the summer holidays.”
Mark Lever, CEO at the National Autistic Society said, “Some children with autism need a lifetime of care, but many want to go to school, have friends and have fun in the summer holidays, just like any other child. They just need the right support at the right time to achieve their goals.”
The National Autistic Society provides a wide range of advice, information, support and specialist services to people with autism and their families. Whilst autism is a serious, lifelong and disabling condition, the right support at the right time can make an enormous difference to people’s lives.