Comments on: ASD in New Zealand – update

By: John Greally

John Greally — Tue, 08 Mar 2011 02:01:40 +0000

I was also on the New Zealand Guidelines Group/Ministry of Health Implementation Advisory Group – whose remaininding work has been passed on to the new ASD Expert Advisory Group.

As a consumer, I see a large foot on the throat of ASD in this country. Not the causation/cure fixation that the US is afflicted by. But the unwillingness to bite the bullet and get on with adult diagnosis and dealing with the legacy issues of ASD, releasing the leadership of the issue to those diagnosed. (Without blind people in pole-position for blind issues you get ded-end bunkum, misdirected funding, and much fluff). Same for ASD in my opinion.

There is room for a professional-led autism organisation in NZ. Same for a parent-led one. But in the end… leadership MUST come from people with autism themselves. No amount of paternalism (maternalism?) can suffice as an acceptable or functioning alternative – which would serve only to proliferate the wrong answers being accorded to the wrong questions about autism over and over.

By: Ben Seeley

Ben Seeley — Mon, 27 Dec 2010 02:01:12 +0000

Hello, I have just recently been diagnosed with Asperger’s syndrome by a Psychiatrist and I feel that employers and other co-workers don’t really understand about the disorder – the sensory issues, ritualistic behaviour, etc. They need to be made more aware of the issues so that there isn’t the ignorance and prejudice that already exists!

I would love to work, but get annoyed at the level of ignorance and prejudice about the disorder! Co-workers in the past have thought that my behaviour is very strange!

By: Alyson Bradley

Alyson Bradley — Wed, 21 Jul 2010 00:27:00 +0000

I was on the guidelines group, probably one of the more neuro diverse individuals within the group, as having to me an interesting mix Aspergers, Bipolar, ADHD, Dyslexia and Dyspraxia, plus other
differences like everyone. While the group itself have been brilliant in being inclusive and allowing me to speak out in my own way, the diversity, experience and varied differences within the group I feel is a credit to those organizing the group, but still feel the group could of been more inclusive of cultural, non verbal and included more individuals on the spectrum. I have to mention Matt Frost who was one of the few on the autism spectrum our chair, who has gone out of his way to ensure everyone is hear, brilliant job. While I found it hard being part of a process that was at times difficult for me, I feel alot has been acheieved, but so much more needs to be done. Of course various reasons many things are not happening the first obvious one that comes to mind is not enough funding to do what needs to be done.

I have huge concerns that the young adults after a certain age get no real support, an age when often most valuable, lack of support still for adults and overall do not feel the real need and urgency for real change is totally understood except by those of us on the autism spectrum. We were the children of yesterday and while early intervention all good, at times I feel maybe first we should let children be just that for a while and develop in their own way, and that early intervention should be for everyone at any age. I also feel all neurological differences need to be dealt with under the same umbrella (Aspergers, Bipolar, ADHD, Dyslexia and Dyspraxia etc… )including autism, and other co-morbids such as ocd, brain damage etc… I feel we should see these differences as neuro diverse and deal with the person as a whole, testing for their varied strengths and weaknesses, rather than giving endless list of labels. As at present its like trying to fit a jigsaw if you have a few neurological differences like my self. For more on this see: http://asplanet.info/index.php?option=com_content&task=view&id=79&Itemid=125

For all those that want change, contact the http://www.moh.govt.nz/moh.nsf/indexmh/disability-keyprojects-asd-guideline-updates we all need to be heard and keep being heard, as I feel the only way for real change.

By: ginny walker

ginny walker — Sat, 17 Jul 2010 21:49:52 +0000

When will government agents standup take responsibity for more staff needs urgently from Early age education, health,transport,in home support funded my Needs assessment to respite care and residential care for adult’s services are lacking in Wellington region.
I’m a solo parent of 16yrs old brain injury, Autism/asperger with clusters of seizure of up 4or 5 a day end up in hospital a that’s causing a lot stress and lack resources to help families cope.I’m only receive 10hrs weekly for in home support worker from idea services but if sick noone come and not allways same time every week so so can’t plan my life around agents who don’t have enough funding for Ministry of Health to make sure I get a break or my son able to attend outings or activities like another teenagers.
Who do we as parent air whats not happening to support us to live a better life for our children who can’t talk so I’m worried noone wants to listen or how do I get heard my go to media. A very active mum who log into every group in wellington region for etc Parent2Parent,ASD group,Autismnz,Cloud9, Epilepsynz,and doing 2 Weltec courses to better to knowledge and feed some of my knowledge as a parent of children/adult back to other parents too.

By: Giovanni

Giovanni — Tue, 15 Jun 2010 01:11:56 +0000

Thank you Hilary, that was a much useful update. I think I can probably contribute some first hand knowledge on one of your points:

This will probably mean that families have to tell their stories over and over to new staff.

Scratch “will” and “probably”.