My elder son, Paul was diagnosed with autism when he was three years old. I had moved to Adelaide from Tasmania to be near my mother just before his birth. I had a great need for her to be a part of my baby's life, and for her to be able to cherish her grandchild. I was glad that I had made that choice.
After Paul's diagnosis, the life of my family transformed into one of timetables based around early intervention, music therapy, swimming and a host of other activities. The pace was frantic as we attempted to help him acknowledge us and the wider world around him. I wanted to reach him and draw him into the reality of every-day experiences. I wanted him to have the same opportunities to learn and grow as any other child.
In the early 1980's, Adelaide was buzzing and innovative around special education. The Autistic Children's Association was remarkable in that it not only diagnosed children, but also offered support and ongoing programmes for families. Paul's progress was slow, but satisfactory. From the age of 3 to 6, his early intervention and kindergarten schedules were closely monitored and supported by myself, teachers and professionals.
I learnt many strategies over the years, and gradually came to an awareness that the vision for my son and his future was one of inclusion in all things. I wanted people to see beyond the label of autism and to acknowledge his gifts and the remarkable way in which he related to the world around him. There is no right or wrong way. There has to be acceptance of the child for who he is, and what he is and for where he belongs in the scheme of things.
Life continued on in its manic way. Occasionally, thoughts of Tasmania would creep into my mind and jiggle about and make me feel restless. I had to be crazy to think this way! There was little recognition and few services for children with autism in Tasmania. Why should I abandon family, friends and network in pursuit of a dream? I pushed my secret longing to one side.
When the time came for junior primary education, I vetted many schools in my area. I approached a local Roman Catholic school with my vision of inclusion in mind. Not once did I ever see that Paul belonged in a "special" school. He needed more than ever the role model of everyday children around him. These children would teach him more about himself than all the professionals in the world.
The school was small and had a marvellous sense of community. Of course, a student with autism challenges everything that a teacher has ever learnt. Nothing prepares them for the rigidity of thought and the grip of obsessions that the child can focus on for months at a time to the exclusion of everything else. This makes inclusion a very hard task for all concerned, where all must be prepared to give 99%. Often Paul was only able to manage a 1% return.
Paul progressed for the first four years, although his social interaction with teachers and fellow students was an area of real concern. My biggest worry was that he was vulnerable and could be easily set up. This is exactly what came to pass in his fifth year, when suddenly everything began to fall apart. I was unaware that things had deteriorated and that Paul was struggling to find a way to tell me that he had become the target of a bully. His behaviour had become difficult and unpredictable. After many months of torment from this child he lashed out to hit her, to drive away the person who had made his school days unbearable. Paul was labelled a violent child and expelled.
I could not believe that it had come to this. The autistic child is not by nature aggressive. When aggression does occur it is the end result of confusion, fear and terror. Years of effort, meetings, planning strategies and behaviour management dissolved before my eyes. I was shocked and angry at his rejection. This was his final year before moving on to secondary education, and we had been denied his rite of passage.
I was not alone, in this my most desperate hour. The school community rose up in anger at the Principal's decision. The Catholic Education Office was bombarded with letters, phone calls and protests. These women - my friends - and their children were standing by us. They understood my vision for Paul. They did not see Paul as an autistic boy. Indeed, they never had. They saw Paul as a whole, precious and valued human being. The love of these wonderful women and their families rose proudly like a banner for all to see. In spite of my bitter disappointment they filled my heart with joy and hope.
Just say your sorry - thats all!
The matter went before the Human Rights Commission, as Paul's case was determined to fall within the criteria of the Commonwealth Disability Discrimination Act. Prior to this, meetings had been held with Church officials. They showed an unwillingness to even acknowledge our concerns and Paul's fundamental right to have his reputation reinstated.
A date for the conciliation meeting was organised, and the conciliator flew to Adelaide from Sydney. Both parties faced each other across a huge, rectangular table and the process began. The distance between us was like gazing at the earth from the craters of the moon. Issues were raised and discussed. Ex-gratia payments were offered towards Paul's education. My husband and I felt insulted and disgusted. The talks went on all day with no resolution in sight. If the conciliation meeting reached a stalemate the matter would then proceed to court.
I put a final proposition to them. We had come for an apology - a formal statement of apology - not dollars, not fancy words and no more hypocrisy. They could see how serious we were and at last they relented. The apology was drafted by my lawyer and our substantial legal costs paid for by the Catholic Education Office. We were able to go home, emotionally exhausted, our shattered hearts triumphant with victory.
Two years had gone by and Paul had been out of school for nearly nine months. Long before our case came before the Human Rights Commission, I realised that a new school had to be found for Paul. With the help of two devoted (and unpaid) advocates, many meetings with various professionals and schools were set up. I found a state school willing to include Paul and incorporate my vision of inclusion for him. The transition was difficult. Paul had lost his sense of belonging, his friends and his confidence. He was distrustful of adults and fearful that everyone was 'out to get him'. He saw himself as a bad person. With careful monitoring and a good understanding of his needs, he had by the end of the first year made a successful integration into his new mainstream school. It was a great accomplishment.
Paul's second year, apart from minor behaviour management issues, was just as successful, and strategies for his transition to high school were already being put into place. This was school at its best and Paul at his best.
That old familiar yearning had returned to haunt me. Paul's success had given me the courage to seriously consider that this could be a viable time to take the risk and move back to Tasmania. Surely, with his new-found confidence and with my help, this success could be transferred to a new school? I put the idea to my family. My younger son, Joseph, was not so enthusiastic. Adelaide was his home; his grandparents and aunt and uncle lived there. His younger cousin, Eddie, would be left alone. Everyone said Tasmania was too cold and 20 years behind the rest of the mainland.
I wrote to the Department of Education and the Arts in Tasmania and clearly stated Paul's needs in terms of resources and funding. I needed to have confirmation from them and clarity on their position on inclusion into mainstream schooling. Letters and phone calls came back offering support and broad outlines on the State's policy of inclusion for students with disabilities. I managed to fly over for a few days. After looking at schools along the North-West Coast of Tasmania, it was the Principal of the local high school in Ulverstone who impressed me with his empathy and willingness to accept Paul into the school community. They had never had a student with autism in the school before. I flew back to Adelaide with high spirits and was sure of my convictions.
We settled into our new home and I made contact with the local high school. Paul and I were warmly welcomed and he started off with a part-time enrolment at the end of 1995 in a sort of special room. The room is used by lots of students, with no set enrolment. We hoped that this would enable him to develop confidence with staff, students and the new environment. In 1996 this progressed to full-time enrolment in the school, with about 50% of the time being in this special class. He receives 10 hours of aide time per week. This is the most support he had ever received as a student at any school. His aide is a patient and energetic woman, who supports and encourages him to participate in the mainstream classes as best she can.
I have had involvement with the Principal and the Special Education team every step of the way. Massive amounts of work and planning have been done to accommodate Paul's needs. His inclusion has challenged all conventional teaching methods and presented dilemmas for one and all. It has been a difficult year. After the initial 'honeymoon' period, and as our expectations of him increased, so too did his levels of high anxiety. We have had to back off and take a fresh look at the situation.
Teachers worried about what he was learning and I worried about my own private expectations for him. I can now see that I wanted too much, too soon, and because of this Paul has suffered. He simply could not cope.
This was not the fault of the child who lives in a fragmented world of vocal, emotional, visual and social chaos. For much of the time Paul tells me that he is confused and frightened at school. He cannot understand what is expected from him. He sees school as a punitive exercise. He is aware of his difference now and agonises over it, often asking 'What is wrong with me?'. How can I answer this question for him? I would trade places with him tomorrow if I could.
As 1996 draws to a close, the future is uncertain. Parents of children with disability feel this uncertainty as a matter of course. I shall, with the help of my husband, advocates and a Principal with much insight and sensitivity, continue to embrace Paul and endeavour to shape responses to his needs. I have been assured of ongoing commitment to my son. The road will be long and difficult and scattered with obstacles.
I shall continue to strive for excellence in his life and to form strong pathways for his future. This can only happen if others can grasp the essence of my dream. I pray that they will.
Reference: Corfiatis, T. (1996). Including Paul . Interaction v.10 #2 p.27-29.
Reprinted with permission from the National Council on Intellectual Disability.
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