“I’ve never felt different, but everyone tells me I am”
A few months ago my son said to me, “I’ve never felt different, but I know that I am”. I asked him how he knew he was different and he said, “Everyone tells me”. There was no emotion in what Reilly said. He was simply stating a fact.
Nine years ago Reilly was diagnosed with Asperger’s Syndrome, a neurological disorder on the autistic spectrum that impacts heavily on his communication, attention and learning. Last night I watched him graduate from a mainstream high school with 210 of his peers. I smiled when the school principal shook his hand and presented him with his graduation certificate: he forgot to smile for the official photo, more interested in reading his certificate.
As I sat in the auditorium I became overwhelmed by what this important moment represented to Reilly and my whole family.
People on the autistic spectrum can often have other neurological conditions. As well as his autism, Reilly also suffers from epilepsy. I often wonder what he would be capable of without the medication to control it. Reilly fights fatigue on a daily basis. This is caused by a combination of sedation and the exhaustion of constantly processing and analysing the social world that others can naturally handle. Comments from some teachers about his being lazy, or needing to put in more effort, always upset me. However, it is understandable, for people that do not know Reilly well, how he might appear to be overly “laid back and cruisy”.
A wild mystery tour
At the time of Reilly’s diagnosis, many of his teachers had never had a child with Asperger’s Syndrome in their class before. We were all learning together. Reilly was lucky to have teachers willing to listen, to try strategies I suggested, and who really wanted get to know him. Every child on the autistic spectrum is different: as they say, “If you know one child on the autistic spectrum, you only know one child on the autistic spectrum”. Not everything worked, but there was always a positive, caring energy around him.
Every now and then we experienced teachers who were reluctant to make allowances or modifications to allow Reilly to have, what I would consider, a “level playing field” alongside his peers. Historically, producing any written work has been a laborious task for Reilly.
On one occasion, when we suggested he be allowed to have a laptop, his teacher objected. She said that it was not fair that the other students could not have one and she did not really want the responsibility of having such an expensive item in her classroom. When I responded with, “If my son could not walk, would you allow a wheelchair?” she looked at me as if to say, “You’re just being ridiculous now.”
This is the difficulty of having a disability that you cannot see. Apart from looking tired, Reilly looks just like any other normal teenager.
Support and identity
At the junior campus, Reilly was fairly well supported. He worked in the same classroom as everyone else with the assistance of classroom support staff who shared their attentions among a few boys. Once Reilly reached the senior campus, however, suddenly he was expected to keep to a busy timetable and get himself to classrooms at opposite ends of a massive school. Reilly lost his way and was turning up late to classes with just a pen. He was put into a supported stream, which was originally intended for boys who had become disengaged with school and needed a stricter, more structured environment.
As more boys on the spectrum fell into this class, it became apparent that the mixture of boys was not suitable and a better solution was needed. Reilly’s special needs coordinator pushed for a new supported stream that would give these students an opportunity to complete their VCE with modified assessments and no exams. I noticed an immediate change in Reilly’s attitude to school. These days he is much happier and optimistic about his future.
Friends and peers play a large part in shaping a person’s identity. Reilly has not always had a lot of friends, but a smaller circle of like-minded boys who do not feel like they constantly need to be together. While all the “alpha” boys were wrestling on the football oval, Reilly and his friends preferred to sit in the library or a quiet quadrangle discussing video games or fantasy movies.
Education for all
For anyone living or working with a child with Asperger’s Syndrome, it is no secret that these children are bullied, almost without exception. Reilly encountered his share of verbal and physical bullying. After I reported a particularly humiliating and painful incident when Reilly was 10, the school implemented a school wide anti-bullying program. Although there was still some teasing, there was never another physical attack on Reilly.
At his high school there was a “zero tolerance” policy on bullying, another whole school approach that everyone in the school supported, from staff to students. Early in his first year, Reilly was harassed on the bus. Not only did older students step in, but the matter was also addressed at a whole school assembly and students were warned of the serious consequences this behaviour could lead to. This was the only time Reilly was bullied in his high school years, proof that these programs and policies can work if schools are serious about teaching children about tolerance and social justice in their communities.
“People with disabilities also have histories, lifestyles and perspectives that need to be understood and respected.”
Here in Australia, the government has included Asian and Indigenous perspectives in our new national curriculum. This is based on the well-researched idea that if you teach children about the histories, lifestyles and perspectives of people from other cultures, you will promote tolerance and reduce racism. People with disabilities also have histories, lifestyles and perspectives that need to be understood and respected.
In relation to Autistic Spectrum Disorders (ASD), I hope that politicians and educators will soon realise the prominence of these developmental disorders in our schoolchildren and address it in the content of our classroom lessons.
I sometimes give talks to small community groups about my picture book, based on Reilly and Asperger’s Syndrome. I was shocked when someone asked me if I was aware that the Sandy Hook and Port Arthur gunmen both had Asperger’s Syndrome. I remember responding that there were good and bad people in every community. I listed many famous people, thought to have Asperger’s Syndrome, who have changed the world with their innovative ideas and saved lives with scientific discoveries.
However, this left me wondering how the media could be influencing society’s collective view of people with ASD. On further reading I discovered that these boys shared not only a developmental disorder but also a long history of bullying, exclusion and dysfunctional family lives. Perhaps society itself needs to take some responsibility for the events leading up to these tragedies.
Sadly though, you could see how such irresponsible journalism could lead to some parents discouraging friendships with children they know to have Asperger’s. If the media were to suggest a different link, that these boys were both from a particular church, culture or race, people might regard that as highly inappropriate.
Lessons for society
As Reilly moves from a highly supportive environment into wider society, I hope his employment opportunities will not be influenced by prejudice and lack of understanding. In the last few years Reilly has had several work experience placements. In the beginning, employers were generally reluctant to take him on, perhaps worried about his epilepsy and his need for close supervision. However, once they realised that he did not need a lot of supervision or support, just some understanding, they were all happy with his work and quite fond of him by the end of the placement.
People with ASD have much to offer to the right employer. They like rules, routine, policies and procedure. They will do precisely what you ask, as long as you ask them precisely enough. They do not see the point of office gossip or wasting time with idle chatter. They are honest and would only use sick leave if they were actually sick. I hope the employment and further education systems are ready for the “wave” of ASD people coming through the school system. I fear they are not.
I have very high expectations for Reilly’s future. He has amazed me at every stage of his life. He is happy, positive and believes in himself. I personally adore many of the quirky autistic traits that make up this wonderful young man.
I hope the ignorance and prejudice of others never dampen his beautiful spirit and that he will achieve all the success he deserves.
Gail Watts is a special education teacher at Western Autistic School in Melbourne. She is the mother of three teenage children including a son with Asperger’s Syndrome. Gail’s picture book Kevin Thinks, which explains Asperger traits to children and families, was recognised as a “notable” book by the Children’s Book Council of Australia in 2013.