Humans.org.nz Home

As with many people I came into the autism world because of a child, my son, although he didn’t have that label until he was 12. I’ve checked with him that I can share my version of his story.

My children are the longest and most creative venture I have ever undertaken and as such are part of my identity. You don’t know in advance what they will be like or where they will take you but there is something pretty amazing about humanity they inevitably teach you.

As a pre-schooler my son was very cute – blonde hair and big blue eyes. But he was different from other children. His speech was minimal and he showed little interest in adults or other children, but would lie on the hard floor watching the wheels of his toy bus turn for a long time.

He got distressed in enclosed places like lifts or supermarkets and could scream and throw a destructive tantrum. Sometimes he hit his head on the floor quite hard. He could escape through any locked gate. Sleep was elusive. He frequently walked on his toes, flapped his hands and when he wanted something, instead of asking would use the arm of a handy adult as a lever to get it.

He loved endless repeats of Thomas the Tank engine but no other TV programmes. He would do jigsaws only if they featured planes and would complete them from one side to the other rather from the edge or the middle. Watching or playing in water could calm him as could squeezing tactile objects like small balls in his hands. When he did start eventually talking he referred to himself in the third person and the words were in an unusual order. However, during the time his father was terminally ill and his sister had a serious illness so we put it all down to general family disruption.

He’s now 21. Here’s a typical recent day. His alarm goes at 7 and after a standard routine that takes an hour he leaves to walk to the station and catch the train to his job in charge of the staffroom at his old high school. He started this job after getting NZEA Level one at school (over three years) and then completing a year at polytec. (This job was initially part of the State Services Commission Mainstream supported employment programme but is now permanent part time.)

In the afternoon he attends a social get-together hosted by the employment trust which supported him for the first two years. Then I collect him to drive across town to his guitar lesson where he is learning to play national anthems of rugby playing countries he would like to visit. After a quick dinner he is off to the adult ASD group run under the auspices of the local Autism NZ branch. Tonight the speaker is a geologist from Te Papa who knows just how to engage this diverse group.

That’s a particularly busy day but on other days he plays basketball and swims with Special Olympics, or goes on long walks across the hills or hangs out at the airport, or watches DVDs with friends. He knows lots of useful information about world airlines and airports. He often goes to the stadium by himself to watch rugby or cricket. Future plans include more paid work, moving out of home to live with his peers and I expect he will have a partner and children one day. He would like to travel frequently by plane and top of his list is to visit his uncle and cousins in Boston. He keeps tactile objects in his pockets for moments of stress.

So what has gone right? The right people have turned up in his life at the right time. One day I want to acknowledge them all but there have been such a lot of wonderful and dedicated people who have seen his potential (often when it wasn’t so obvious to me or others). They included teachers and teacher aides and youth workers and business people and professionals and family members and other parents.

During his primary school years he didn’t have any particular label so professionals responded to his needs as they saw them and this actually worked well (although a label later gave me access to the local autism community). Particularly special have been some great young men (not much older than him) who have acted as tutors and social interpreters and guides to the ordinary boys’ world over the years (and often paid out of the respite care allowance). He is a young man confident in himself and he is just right as he is.

For me it has meant a whole lot of learning opportunities in parenting, education, advocacy, NGOs and now academia as I have some funding from the Health Research Council for research on the how the lived experience of autism in NZ can inform public policy (for details see the Health Research Council News June 2007 p.11 at www.hrc.govt.nz). Don’t ask me exactly how yet as I am only at the very beginning of this process but I’m sure this Humans e-community will have a role.