Julie's Story

Julie is thirteen years old. She lives with her parents Don and Judith, Monday - Wednesday, and Helen and Charles, her caregivers, the rest of the week. Julie has two sisters, Katie and Kylie, and a cat she adores called Garfield.

To know and understand Julie you also need to know and understand how Autism impacts on her life.

Autism is a condition that a person has their whole life, and can impact upon the person's learning and perception in the areas of: communication, socialization and imagination. Like you and me , no two people with Autism are the same and no two people are affected by Autism the same way.

This information is about Julie now, but like all people this information may change as Julie grows and matures.

Julie was four years old when the paediatrician told her mum and dad that Julie had Autism. Since then all the people in Julies life who support her have been learning about Autism, how it affects Julie and discovering ways to support Julie, so she can relax and enjoy the world and her life.

Before you learn more about Julie, lets be clear about what Autism is not:

• Autism is not from bad parenting
• Autism is not a mental illness (though people with Autism spectrum disorder can also have mental illness)
• Autism is not curable, but good consistent support in a way that people understand can help people learn and develop
• Not all people on the Autism spectrum are gifted, but some people are
• No two people on the Autism spectrum are the same. People on the spectrum are all unique and are affected by Autism in varying ways.

People who know Julie best, say that Autism affects Julie like this:

Julie has a heightened sense of smell, and smells that might seem benign to you can cause Julie to become upset and distracted. Smells like meat pies and people's feet and Handy Andy all smell bad to Julie. If Julie smells these smells you can: remind her that the smell will not be there forever; suggest you both go for a walk outside to smell the flowers, this can help her calm.

Some people on the Autism spectrum can get upset at certain sounds - this isn't the case for Julie, but a high level of background noise is distracting for her.

English or Maori are probably your first language, well for Julie, pictures are hers. If you want to be clear about what you are communicating to her, give her a picture. Julie is just beginning to understand the meaning of symbols but now she best understands pictures. Even if you think Julie knows what is about to happen and she knows the pictures well, don't take them away, they are like her diary.

Julie has Hyperlexia, this means she can read better than the professionals, but her comprehension level is assessed at 4 years. This means that for reading for understanding you need to aim text at this level.

Julie like a majority of people on the Autism spectrum has enthusiasms, a topic or range of topics that are special interest and that the person thinks about a lot. Julie’s enthusiasm is Christmas. Julie is not yet convinced that Christmas will come every year and every morning at school and at home, you will need to mark off on the calendar and count how many sleeps until Christmas Day. Once you have done this together Julie can concentrate on other matters.

Like a lot of people on the Autism spectrum, this enthusiasm can become an obsession if Julie is stressed. The key things that we know stress Julie are:

• Anxiety about whose house she is staying at that night - her parents or her foster parents - even though this is a long standing routine it can still cause Julie to worry. Show her a picture of the house she is staying at that night and reassure her that its okay.
• Julie is also worried about who the taxi driver will be. There is a system in place with the taxi service that they will ring if the driver is sick or has changed, but this is not always reliable. If Julie is having a bad day, it is a good idea to ring the taxi company and check just to be sure.
• Julie will also get really stressed if there is a change in plan. Julie needs a structure from morning to bedtime, both at school and at home.

To know when Julie is becoming stressed, she has some behavioural precursors, or clues that she gives you. She will begin to sigh and yawn, she will keep saying "when's Christmas" and she will often look like she is not paying attention to what you are saying.

One thing we did to support Julie, before we talked about Julies need for structure, routine and predictability in her life, was write her a social story. A social story is about what is going to change, when it will happen and possible responses for Julie.