Finding out
Working from estimates that one in every 150 of us resides on the autistic spectrum, I have just discovered, with the Statistics NZ population clock as my guide, the possibility that 27,910 people in New Zealand currently experience life from this perspective.
Added to this group are those who are trying to understand what a position on the spectrum implies, and requires of us, from our vantage points as family, friends, teachers and therapists. We are a sizeable community, if not such a well-connected one.
I entered the world of autism and aspergers via the unfolding idosyncracies of my 2-year old son, now 5 and diagnosed with ‘autistic spectrum disorder’. My first response to finding out was not grief, but curiosity and even a little enthusiasm. Being a somewhat eccentric person myself, I relished the prospect of having a child who was unlikely to tread a standard path. Of course there were challenges, and still so now. Yet I managed, at least intitially, to ignore the impact of these in favour of zealous information gathering,
One thing I quickly discovered through my daily excursions on the internet, was that there is quite the variety of information out there. So many approaches, theories, philosophies, opinions. And for someone who is newly learning about autism, and anxious for some answers, it can be an overwhelming task to wade through and make personal sense of these multiple viewpoints.
I’ll say now that the single greatest impediment to finding a therapeutic approach for my son was the strong recognition of many autistic qualities in myself. Before researching my son’s autism, I had devised my own contexts for naming my experience: artistically, psychologically, spiritually.
It was an excruciating process for me to see these same qualities I struggled with, but prized in myself, now viewed within the context of a disability. It seemed to me that while autism in children is usually (and understandably) approached through various forms of remediating disorder, ultimately a person must explore life’s puzzle through the lense of one’s own identity, however this is constructed. To support my son to form a positive sense of self, where his autism is included and welcomed has become my main focus. Fulfilling other needs diverge from there.
Meanwhile, back to the information gathering…
We include on this site some website links that have proved supportive, practical and sometimes deeply thought-provoking ports of call. As the range of autistic expression is vast, so are the efforts, from all parts of the globe, to provide a guide for the perplexed.
For those newly travelling on the road towards a diagnosis, it might be helpful to read offical diagnostic criteria alongside their more friendly and real-life translations provided by parents and those well acquainted with the autistic spectrum as it is lived. From our links try Autism New Zealand’s site, O.A.S.I.S., Neurodiversity.com, British National Autistic Society.
Autism New Zealand also offers parent training courses, seminars, a mail-order library and local support groups.
The financial realities of securing therapeutic services can be daunting to say the least. For those in New Zealand looking into ABA therapy, support and assistance may be possible through the Autism Intervention Trust. Work and Income has two forms of disability allowance (one means-tested, one not) that you can use to pay for regular therapy and medical costs. You may be eligible for both.
Forums, such as the one on the O.A.S.I.S. site, ASD-Friendly Parents Support and the Asperger and ASD UK Online Forum are a great, 24/7, way to draw from the wisdom of others about your specific concerns.
Educational support (or the lack therof) is a thorny issue that all parents of ASD children have to contend with. The Ministry of Education’s site gives some information on the services they provide.
A great way to learn about the autistic spectrum is to hear from those who know it most intimately. The autism web is huge. We’ve included several blogs and websites by autistic people, including 3 New Zealand ones. Some are actively involved in autism advocay while others are more personal explorations.
From New Zealand:
Jen Birch’s Asperger site
From other parts of the globe:
Donna Williams
And lastly, don’t forget to visit the Posautive group on YouTube for videos that provide a positive context for Autism. You can upload your own videos too.
Andrew wrote on August 10th, 2007 at 3:01 pm:
Thanks for the well balanced thoughts.
One resource you haven’t mentioned is the local library. Some of the books you’ll find here are just as terrifying as the more extreme views on the internet. Some theories don’t stand the test of time, but you’ll still find them in the library (and if it’s in a book it must be true).
A trick that I’ve recently cottoned onto is that you can put in a purchase requestion for new books of interest. This can also be a form of low level advocacy by populating the shelves with more relevant material than older outdated books.
Lesley Maclean wrote on August 10th, 2007 at 4:40 pm:
Hi Andrew,
Thanks for that. Yes I have not forgotten the value (or lack thereof) of books and articles. We have just done the information thing with websites so far but I had been wondering if it might be useful to compile a list here of reccommended ones and yes even a critique of some of those scary ones. Frightening to see archaic attitudes still there waiting for someone to pick them up. I read somewhere that in some small libraries of the world, copies of Bruno Bettelheim’s ‘The Empty Fortress’ are the ONLY book on autism on the shelves.
On the side of those useful books (and articles) of real interest and inspiration there have been some that have significantly shaped my outlook and way of understanding autism. I would like to hear of some of those that have inspired others.
I will start up one of these lists very soon. Perhaps you can make some suggestions…
cally whitham wrote on August 14th, 2007 at 10:58 am:
I agree a book review section would be great. There are so many books to read, but it helps to be pointed to the best ones to read - and particularly the positive hopeful ones…
I recently read The Jumbled Jigsaw: An Insider’s Approach to the Treatment of Autistic Spectrum ‘Fruit Salads’ by Donna Williams.
What a fantastic book, we now have a number of personalised strategies, therapies and remedies we can pursue as we are ready, based on where are son is at - which we were able to glean from this fantastic book.
Further to your comments on discovering autistic qualities within yourself, I think if many of us looked into our families and family history we would find ASD in there somewhere. I am starting to worry less about the mercury and understand more about genetics. And more importantly questioning now what is ‘normal’.
John wrote on January 27th, 2008 at 1:14 am:
Hi, the link ‘jandi.co.nz’ is coming up ‘404 Not Found’. Sad. Thanks for your useful link list, especially the locals like asplanet.info, etc.