Growing up With Aspergers Syndrome (As).
A short story by Luke
Living with High Functioning Autism - being different is OK.
If you were to meet Luke or see him walking down the street there would be no distinguishing features to show he may be different. People with this condition don't always look different. They may have a slight stiffness about them, walk very upright or they may talk with a 'robotic' tone. I met Luke when he attended the same school as my son. He didn't act or look different to me at the time.
Luke is the son of one of my best friends and I have watched him grow into a very responsible adult with an endearing personality once you get past his shield. The shield is the social clumsiness that comes with having High Functioning Autism (previously known as Aspergers Syndrome) and can cause a fear of social interaction, difficulty making friends with peers and limited conversation skills in social situations. Social small talk, in particular, can be a problem. Take note of how Luke's robot reacts when asked to "pull his socks up", the literal sense of the words are understood, not the 'comedic' or sarcastic tone.
As Luke is the same age as my son there were times when I would hear; "Luke did something strange in class today; he hit someone who accidentally bumped into him, he cried when the teachers raised their voices, he makes funny noises sometimes for no reason".
Luke was getting by at school but his parents and teachers always thought he was a bit different. However, no one could put their finger on what it. He was doing well in his schoolwork and sometimes played with the other kids. But when Luke was 11 and in year 5 at school, he pulled his hair out on the crown of his head – the size of a 10c piece (a habit that continued for the next 5 years), was very unhappy and talked about “ending it all”. He used to tearfully ask his mother “why am I different to everybody else?”
His distraught parents took Luke to a clinical psychologist who quickly diagnosed Aspergers Syndrome. She contacted Luke’s school principal to advise some immediate strategies that would help his situation, strategies such as 'time out' spent with the Principal if he could not cope in the classroom or computer time at recess/lunchtime if he stayed on task in the classroom.
'Aspect’ (see link below) also came out to the school to observe Luke, confirm the diagnosis and suggest more strategies. This helped everyone – Luke, the teachers, and especially his parents, to know what was wrong and have people at hand who would be able to help.
The diagnosis, however, was devastating and Luke’s mother cried for months. There is almost a grief one goes through when you find out your child has a “problem”. Grief for the perfect child lost. Luke was still very unpredictable at this time and no one knew what the outcome would be – could he work? Would he ever make friends? Would he ever be happy again?
Luke started attending the following:
- He had a weekly session for 6 months with the clinical psychologist to work through issues as they arose.
- Art Therapy classes for 18 months with 2 other children his age who also had Aspergers. He learned to socialise with his peers in a safe setting.
- Several Workshops held at Aspect (see link below)
- A teacher at his school was studying Autism and started weekly social skills classes for several children who for various reasons had problems socialising with their peers. She also held a session where all Luke’s peers were told what his problem was. She described it as “the Sixth Sense” which is the invisible social sense. More about the Sixth Sense can be found by looking up 'Carol Gray' who founded this theory and has written several books. This strategy was welcomed by his peers who finally had an understanding of why Luke was different and treated him in a more positive manner. By this stage Luke had one close friend at school and several others who he spoke to. It just shows how a little knowledge goes a long way.
To keep Luke busy away from the playground, the school put his talents to good use by having him install new software on the schools PCs and help others with their computer problems. He also did 'buddy reading' during year 6 for several year 1 students and helped out with lunchtime chess matches by doing the scoring on the computer.
Luke’s special interests are trains, trams, buses, meteorology and photography (but NOT of people!). When he was 11 he joined a youth model train association which put him in touch with young people and young adults who shared his interest. Through this group Luke moved onto train photography and often has train days with his friends. Luke has made many friends through his special interests.
Trains, trams and public transport in general remain the focus of Luke's hobbies, he is excellent on computers (far ahead of his peers) and his photography skills are also beyond his years. He is the school photographer and his photos feature in the school newsletter. His teachers have no problem asking Luke for help with tasks as he is quite comfortable around adults and always eager to please. The best way for Luke to keep his anxieties down is to keep busy and be appreciated for his work.
Luke played AFL (Australian Rules Football) for several years but was not a very good player, he never liked to get the ball in case he messed up and was made to look awkward. When the team needed a boundary umpire he jumped at the chance and is still doing this years later.
An Inspiration to Everyone
As a teenager Luke was a great example to his peers of how focusing on the task at hand may help you to achieve certain goals. It is a given that most of the tasks Luke performs are solo but they do give pleasure to others, especially his sport photography. It is only his social skills that are impaired, and to people who don't know he has Aspergers, he may just come across as a shy kid. Luckily he has a good sense of humour which helps him. He made me laugh occasionally by joking about something I had said, this may not have happened without treatment and early intervention.
Luke also took part in several studies conducted by The University of Sydney –
- Aspergers Friendships study by Sandy Vickerstaff to see how Aspergians view friends and how important friendships are to them.
- Oxytocin trials by BMRI (Brain Mind Research Institute at Sydney Uni) to see if this naturally occurring hormone, in nasal spray form, has a positive effect on social ability in Aspergians. Results so far are promising.
Luke is now a responsible adult who is happy and content with who he is and his Aspergers. All in all, having a problem like Aspergers should not be seen as a set back, it is just a different way of seeing life. His parents and teachers now see a bright future ahead for Luke in whatever field he chooses to follow.
Luke and his family are our close friends, we certainly don't believe Luke's condition is a hindrance in his everyday life, he has a very busy social life, will greet us when he sees us and will occasionally join in on conversations.
Article in Sydney Morning Herald about Oxytocin program with promising results -
Should you need help with Aspergers Syndrome or Autism please click the links below (for Australia). Also, Tony Attwood is a leading expert on Aspergers so you may be interested in the Amazon list below.
- Welcome to Autism Spectrum Australia (Aspect)
Autism Spectrum Australia (Aspect) is the leading provider of autism-specific services in Australia, building partnerships with people with Autism Spectrum Disorders, their families and the community to provide information, services, learning and res
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2010 Maria Giunta