The Peterborough Evening Telegraph
Life with autism
A debate was sparked after a five-year-old boy was hurt when he was bitten by an autistic girl in a Peterborough McDonald’s. After reading about the incident, Karen Harris – mum of young Lucy who also has autism –has spoken out about life with an autistic child .
I read about the little boy that got bitten in McDonald’s, who I have every sympathy for. However, reading some of the comments on the original post left me feeling incredibly sad, and alarmed, I had to stop reading as it became clear that autism is so misunderstood.
Lucy has a dual diagnosis of downs syndrome and autism. The autism being by far the most challenging of her diagnosis.
I have been on the receiving end of stares and comments out in public when my daughter has been in the throes of a meltdown. I try my best to switch off from the public and put all my energies into calming and soothing Lucy.
Things that are helpful to Lucy when she is overwhelmed is to reduce verbal input, give lots of processing time and reduce any demands on her. This may appear quite cold, but actually the less she has to process, the more comfortable she feels.
Lucy has extreme hyperacusis, which means everyday noises can be difficult to tolerate.
Sudden unexpected noises can lead to unpredictable behaviour, as the noises can totally overwhelm her. So a regular trip to the shops has to be carefully managed. If it becomes too overwhelming we have to change our plans.
Lucy uses a wheelchair. If we go to the shops , it makes her feel safer, also it means we can swiftly move her away from any triggers that are likely to cause her problems.
Lucy struggles with transitions, for example going from one shop to another. Or waiting in a queue.
This can be a time when her behaviour can be very unpredictable.
When out and about I am on constant high alert. I have to forward think about any potential triggers.
Lucy’s behaviour can be unpredictable and she has no concept of danger.
She thrives on routines, it helps her cope with her world, but also makes life a challenge, especially when things change without any prior warning.
She doesn’t understand why things change, and it can cause her to meltdown.
Autism will present differently person to person.
But there are usually some difficulties with social interaction and communication as well as sensory difficulties.
It is also a spectrum disorder, meaning the severity will also differ from person to person. Autism has no cure.
The world can be a very scary place for someone with autism.
We all receive sensory information sight,sound,taste,smell touch,and proprioception every single second of the day and we are able to process this easily.
But a person with autism can find this information ex- tremely difficult to process and can lead to a meltdown by feeling overwhelmed with it.
Morrison’s have recently introduced an autism friendly hour. Showcase cinema also have autism friendly showings.
These things definitely help make life more accessible and inclusive for Lucy.
I would love to see more opportunities like this.
Because, Lucy is a child first and foremost and she deserves to have the chance to experience these things (which many of us take for granted) by reducing things like noise means she has a chance to enjoy them. (Or at least tolerate them)
From my point of view being mum to a child with autism can be exhausting and all consuming. Lucy hasn’t slept a whole night for 11 years, she simply doesn’t need to sleep like we do. We are often awake at 3am!
I’ve had to learn new ways to communicate, sign language/PECS (a communication method with pictures).
Carers trust helped fund a sign language course, and are also available for advice and support.
We have lots of visual posters dotted around our house that visually show Lucy how her day will progress.
I’ve had to research behaviour management methods, finding strategies that work for us as a family.
I’m not looking for sympathy, this is our life, I would just like people to accept and understand that we are doing the best we can.”