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The NZ Autism Spectrum Disorder Guideline was launched at Parliament on World Autism Awareness Day, 2 April 2008. It is a world first in that it is a whole of life, whole of spectrum and whole of government approach to autism. It will be a living guideline so can be updated regularly and have gaps filled as new information becomes available. $18.5 million over the next four years has been allocated in Vote Health for the Guideline.

At the launch five speakers with lived experience of autism talked briefly about the significance of the Guideline. Three were people on the spectrum and two were parents. Among the speakers was Jen Birch who is an adult with autism who has been involved with the Guideline development for several years and is the author of Congratulations! It’s Aspergers Syndrome, and Matt Frost who is a young adult with autism who will convene the ASD Guideline Implementation Advisory Group.

The full Guideline and a Summary are available from the Ministry of Health http://www.moh.govt.nz/moh.nsf/indexmh/nz-asd-guideline-apr08

The next step is the hard job of implementing the Guideline so the services and supports it recommends are available to people on the spectrum and their families throughout New Zealand.

The New Zealand Guidelines Group (http://www.nzgg.org.nz) has the contract for the implementation of the Guideline and will work alongside the Ministries of Health and Education which have led the work so far. An Implementation Advisory Group of representative people from the sector is being set up to decide on priorities, identify gaps, develop various workstreams, and generally oversee the implementation of the Guideline. There will be ongoing opportunities for input from interested people.

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The following is my speech from the Guideline launch: 

“I am one of the lucky parents in the autism community. I had a supportive family. No one took my child off me and placed him in an institution and told me to forget about him. No one told me that he couldn’t attend their school, no one asked me to pay for a teacher aide, and neither was he asked to leave school because they didn’t understand autism.  No one said his behaviour was too difficult for respite care. No one said he was too disabled for a job, for independent living, to be treated as a human being with feelings, hopes and dreams. No one said it was my fault.

 Many parents have fought and continue to fight for their autistic children to be supported to live ordinary lives like other New Zealanders. Often the mother copes alone – and her whole life involves managing the complex care requirements of her child – the erratic access to education, the turnover of care workers, keeping the family together and the negotiations required to keep all the balls in the air. 

In contrast my experience was of a friendly Plunket nurse who arranged for my son to attend a local 3 year check one day in 1988. In that same hall was a speech language therapist, an educational psychologist and early intervention specialists. Within two weeks there was a plan around my son where specialist teachers came regularly to playcentre and home, and he also had weekly speech therapy. All free, all part of an integrated system. At school he continued daily on-site speech therapy.

Note: this was before the big fragmentation of the 1990s.

I did not regard this as lucky – this integrated approach just seemed sensible and instinctively felt right. It is ironic, and a sad commentary on the world in which we live, that it has taken 20 years and best practice evidence from around the world, and over 300 recommendations, to attempt to build a collaborative system that just instinctively feels right. But this time it is going to be better, more effective and more equitable. This is a whole of life, whole of spectrum, whole of government approach.

But we will not get there without a supportive and skilled workforce. Autism is also the focus of my academic research and I have dug into the 10 year history of the guideline development. Again and again there are the names of the quiet champions of the public service who have kept on calling the meetings, getting the funding, seeking out research, keeping the enthusiasm going.

And thanks to the parents for all their blood sweat and tears for their struggles to ensure our children live and interact and are educated with their families and friends and peers. And to the wonderful children (like my son who has put up with talking about him all these years). And thanks also to Minister Ruth Dyson for her ongoing support.

Now we have to get on with the job.