Our stories

Here we will be building up a library of stories reflecting some insights into life for families who have a child with autism. If you would like to have your story featured, either visit talk about autism or email talk@treehouse.org.uk.

Lucy's story of family

Mark and Luke both attend a special needs school. Although they both have autism they are very different. Their oldest brother died in 2001 after a two year battle with Leukaemia, so they have no ‘normal’ sibling role models at home. Each year they get older and stronger, but mentally they remain toddlers creating a ‘Peter Pan’ existence. Both boys have a tendency to escape so locks are essential everywhere.

Mark is severely autistic – he has no speech or communication, no social awareness or understanding of danger. He is however affectionate and enjoys company. Be prepared upon your arrival to be taken by the hand and ‘kidnapped’ to go watch a video in his bedroom – so I hope you like Bob The Builder or Bill & Ben! He is on a strict gluten wheat and dairy free diet and will persistently request both food and drink. He requires all his daily needs met i.e. washing, dressing, feeding, nappy changed, etc. He may not be able to read or write but with the blink of an eye he will have legged it upstairs with food left out quicker than Linford Christie! He is active either by jumping or flapping from the minute he wakes and can survive on as little as five hours sleep, often waking in the middle of the night. Once awake he has no concept of the time and wants to roam the house and watch videos – thank heavens for Sky Plus! He will now give eye contact and respond to his name but gets frustrated when unable to communicate his needs and is inclined to pinch or scratch. He requires one-to-one 24/7 support. He is statemented and follows a strict ABA programme at school in the Autistic Unit. Although capable of walking he has a tendency to drop to the floor when out and requires the use of a wheelchair. His fixation with coat hangers and bags makes shopping an experience to remember.

Luke can say a few single words and has more social awareness. At home, he will most likely be naked and found somersaulting from window seat to settee. His fixation is hair (or lack of it). He likes to be in control of everything and will have every single light on in the house, and every video on fast forward! Although he is unable to read or write he will happily surf the internet and is able to locate his favourite Cbeebies Website or news bulletin on MSN! He can be found conversing with himself at anything that projects his reflection ie. kettle, toaster, windows, letterbox etc. Luke will not go to bed for fear of missing out on something and then only if it is in his parents’ bed. Typically for us parents it is a 20 hour day, almost exclusively attending to the children’s needs. Whilst this is extremely exhausting it is also very rewarding and we feel we have a happy and loving home.

Linda's story about her son, Simon

We are the Weaver family. Myself, Linda, my husband, Duncan, and my sons Simon (7 years) and Leon (18 months). My son Simon was diagnosed with a form of ASD called Asperger’s Syndrome in 2003. He attends a local primary school and is currently in Year 3.  Simon has an above average IQ and is a good natured child with many talents.

Simon’s autism impacts on our family life in many ways both positively and negatively. On the face of it Simon looks like any other 7 year old (maybe a little taller) yet he is profoundly impacted by his condition. Simon’s autism affects his sensory system particularly and adjustments to our life have to occur to accommodate this. The world is just too noisy, too smelly, too bright and too fast for Simon.  Many things that would be normal for another family i.e. parties, holidays, fireworks, shows etc are just out of the question or have to be planned well in advance.

In order for Simon to function and feel safe in what is to him a confusing world he adheres to many routines and rituals. These impact our everyday functioning and our job is to balance the safety these bring him while helping him to live with the other demands of life.

To some extent our lives are controlled by his condition. Yet autism also brings many positive aspects. Simon is unique and sees the world in a completely different and exciting way. He has a well established sense of justice that many adults have yet to obtain. He is unable to lie and manipulate and does not see why people would intentionally harm one another. He has a great sense of humour and is good company. Not many parents can play Monopoly or Cluedo with their 7 year old. He can also play a good hand of poker.

Many of Simon’s difficulties are not on show and so his is truly a hidden disability. Everyday is a battle for my son and he is a brave and determined boy. More brave and determined than I. Having a child with Asperger's was not something I bargained for and it has changed my life completely. It is the hardest job I have ever done but I would not change it or him for the world. It has made me a better person (if a little knackered).