Where are all the Services?
In 2003 at the age of three my son was diagnosed with autism. The diagnosis was made by a team of clinicians, led by a paediatrician, in a large children’s teaching hospital in Brisbane. The news was both good and bad. It was good because the doctor was confirming what we already knew deep in our hearts, that he had autism, and now we knew for sure what we were dealing with. It was bad because – well this is autism we are talking about – it is a very complicated condition and we knew very little about it.
After delivering the diagnosis the paediatrician, seemingly upbeat, told me about the next steps in the process. He told me about the SEDU programs that are run by the Education Department in Queensland. These Special Education Development Units (SEDU’s) are ‘kindergarten’ type early intervention programs for children who need extra assistance because of Autism Spectrum Disorder (ASD), Down’s syndrome and other developmental conditions and disabilities. The program would run for a couple of mornings each week for a year or two and we would have to wait a few months before he could begin.
The paediatrician smiled and said that the hospital also had its own autism program that our boy could attend. This program was for young children and was one session a week (a couple of hours) for about 8 weeks. That sounded terrific to me (in my profound ignorance of best practice interventions for ASD) and I left his office feeling hopeful of the future.
On our son’s first day at the SEDU I had absolutely no idea what to expect. Playgroups had always been a problem for him, so attending a structured kindergarten with other children who also had special needs was a big black hole of not knowing as far as I was concerned. How was he going to cope? Would he eat his meals? Would he cry all the time and refuse to participate?
Well the day started out swimmingly with our son refusing to get out of his car seat in the car and then the progression into a monster crying fit. I didn’t know what to do! He was struggling so much I knew it would be very difficult, if not impossible, for me to carry him and his belongings into the classroom. My stress levels were rising with my blood pressure and the minutes were ticking away. I knew I couldn’t do this on my own so I locked the car and quickly went inside and asked for help. The director of the program (a wonderful and wise woman) nodded her head in understanding and came outside to assist me. Together we got that strong little boy with big fears and tears inside the SEDU.
I stayed for over an hour to see if he would settle and he did calm down enough to get through that first day, and the next and the next. The program was very well run and the teachers were knowledgeable and skilful in the area of ASD. He had assessments from speech therapists and occupational therapists, and the program was based around the results of these assessments. My son tolerated (sometimes even enjoyed) the program and improved in many areas because of the expertise and patience of the staff. But I knew it wasn’t enough.
After the diagnosis I had begun to do as much research and reading as possible in the area of autism. One thing stood out amongst the cacophony of ‘treatments’ for ASD and that was the benefits of intensive early intervention; intensive being the operative word and that meant 30 to 40 hours a week. These were primarily behavioural interventions involving a focus on learning theory and skills development with the use of Applied Behaviour Analysis (ABA). The SEDU program incorporated a number of these techniques but was only 9 hours a week and that wasn’t nearly enough to maximise the benefits for the child. It was a good step in the right direction but much more was needed.
I believed that intensive early intervention was the way forward for our family but when I looked around for service providers I found none. There were no programs in 2003 in Queensland that offered full-time placements in early intervention. I couldn’t believe it. The only option was self-funding an in-home program where I would have to arrange the employment of a number of staff who would implement an ABA type program (presumably designed by myself). The complexity and expense of this approach blew my mind and I didn’t know where to begin. I began to feel like a rat in a learned helplessness experiment.
to be continued