The Autism Files: Where are all the Services?

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

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Dr James Morton – my hero

Dr James Morton – my hero

I don’t have many heroes or heroines. People are just people and everyone is flawed – why elevate someone to that level?  But I do make an exception for some rare types who just blow me away with their ability to achieve great things in the face of incredible barriers. Dr James Morton is that type of person.

One individual, Dr James Morton, has done more for young children with autism in Queensland, Australia than entire Government Departments have ever done.

When my son Michael was diagnosed with autism at the age of three, there were practically no early intervention services in a social setting for young children with autism throughout Queensland.

If you lived in Brisbane (the capital city of the Queensland and located in the Southeast corner of this large State) you might have been able to access some services but these were scarce, did not have enough hours and had long waiting lists.

If you were well off financially and had a lot of nous than you could set up your own in-house program (without a social component). If you lived in regional and rural Queensland – tough luck!

Early intensive intervention (20 to 40 hours a week for 2 years) based on best practice guidelines, is the number one research-based strategy to improve the future for young children with autism.

The age between two and five years is a critical window of opportunity for children with autism and profound changes can be made if an intensive early intervention program is undertaken.

James Morton established the AEIOU (autism early intervention outcomes unit) fortuitously for us, shortly after Michael’s diagnosis and my son was one of the first groups of children to access the program. And what a program it was!  Michael had access to one-on-one intervention from a great team including speech pathologists, occupational therapist, and early childhood teachers and aides. There was also a wonderful sensory room and a well equipped outside playground.

Michael improved dramatically while attending the AEIOU, learning to socialise, communicate, and developing the myriad of other skills needed to enter the formal school system. He gained confidence and was able to be mainstreamed at school. He continues to improve every year and doesn’t stand out a great deal from the other kids. He is sociable, humorous, kind hearted, speaks well and does above-average in his school work. He is very interested in rubbish collection!

Dr James Morton, a respected child cancer specialist, used $650,000 of his own money to set up the AEIOU. He did this because he and his wife Louise also had a child with autism and found it almost impossible to access intensive, early intervention in a social setting.

That was in 2004.

Today in 2010 James Morton has established 6 centres, including centres in Toowoomba and Townsville and a rural program (piloted in Emerald).

This is why James Morton was State Finalist in the Qld Australian of the Year 2010.

This is why he was this years Ernst & Young Entrepreneur of The Year.  Here is a quote from their website:

‘Determined to make AEIOU available to all autistic children, including those from low income families, James developed the 10-40-600 fundraising strategy. Currently, there is a $10,000 funding gap for the $40,000 it takes to place a child at an AEIOU centre for 12 months. James sought individual and corporate donations to close the gap. He argued that, by assisting these children to communicate, engage with others and become integrated into their community, the contribution provides an average lifetime cost saving of $600,000 per year for each year the child participates in an AEIOU program. Convinced by his argument, 40 sponsors signed in the first year.

James’ funding strategy has enabled rapid expansion, with AEIOU opening six regional centres across Queensland in the past five years, including a rural program. By 2012, the program will be providing full-time specialist care to 50% of children with autism in Queensland.

In the next five years, James plans to support children with autism from diagnosis through childcare, school and ultimately into the work force and to replicate his model in NSW.’

That is why he is my hero.

Thanks James for all your wonderful work and advocacy for children without a voice.