Welcome to humans
Welcome to humans*.
I first heard of Asperger Syndrome in 1995. The last line in an educational psychologist’s report on our older son, Jimmy — who, according to his kindergarten teachers, seemed to have “trouble processing information” — read “ADD or AS”.
I knew what ADD was, and I knew that wasn’t Jimmy. But “AS”?
“Asperger Syndrome,” said the ed-psych, almost on her way out the door.
A few minutes later, I typed those two words into an internet search engine. Nothing would ever be the same after that. The more I found, the more it made sense. Our initial response when it was suggested that something was going on with Jim had been the classic: “Oh, but that’s just Jimmy!”
Which it was. But the words coming up on the screen had the ring of familiarity. They described our son. In that first session, I came across various formal and medical descriptions of Aspergers and autism. But the website that struck home was not the work of experts, or formal, or medical.
It was O.A.S.I.S., a site created by Barb Kirby of the University of Delaware, who, two years before, had received an Asperger diagnosis for her own son. She was, she has admitted, “terrified”. But she found other parents online, formed a community and started her website. Our family will always be grateful to her.
The “autism web” is much bigger and broader now, of course, and, crucially, the internet has become a place for the neurodiverse to express themselves, communicate and organise.
That same internet is also home to some pretty vicious politics. The shock of diagnosis can do some strange things to people. I’d prefer to avoid that. One thing you can count on is that no one here believes that autism is caused by the mercury in vaccines, or, indeed, any other property of vaccines. We don’t seek, practically or philosophically, a “cure” for autism. We just want good lives for ourselves and those we love.
The site is organised along three basic themes: Places, Thoughts and Stories. Places means the places you can go to find out more about autism; the science, the politics, the culture. Thoughts is what you’re reading; a blog written by a group of three or four of us. You’ll meet the others over the next few days. And Stories is a forum for everyone in this world – autists, parents, siblings — to tell their own stories.
As we go on, it’s my intention that we advocate for better provision for autistic people and their families in New Zealand, and keep you up to date on what work is being done here. In particular, I want to see schools become better places for our kids. The Make School Make Sense campaign in Britain seems an admirable example for us.
We aim to complement, rather than compete with, existing organisations and internet resources. Please, let us know about things you think should feature on this site.
I promised back in March that I’d make this website — and then, with our younger boy Leo, out of school and in need of care and attention, rather regretted the promise. Parents with children like ours will know how stressful life can be. But I’m grateful to David Cohen for reminding me of the commitment, and suggesting that I launch humans alongside his moving new book, A Perfect World. I’m grateful to David and the others who have helped me get this far, especially Matt and Karl at Cactuslab, Kirsty Harvey (who came up with our lovely logo concept), Lesley Maclean and Hilary Stace.
David and I have an interesting history, and our children would not seem to outsiders to have much in common with his and Pamela’s son, Eliot, who is core autistic and non-verbal. But we’re all in this together. We share the strain, and relish the insight of living with someone who is truly, irreducibly different.
*The name comes from something Jimmy used to say. He would refer to other people not as people, but as “humans”. I always liked that.
Hilary Stace wrote on August 6th, 2007 at 9:48 pm:
Thanks so much, Russell, for getting this website going. I’m sure it will help the autism networks communicate and unify. And thanks for launching it in Wellington tonight along with David’s book. For those who weren’t there one interesting speech was by David’s friend, the surprisingly short Billy Glish, who introduced himself for the benefit of Wellington political groupies in the audience (of whom there were several across the political, and probably autistic, spectrum) as the Deputy Leader of the Labour Party. He also admitted to being Health Minister at the time of the Casey Albury tragedy, that significant event for forcing autism into the spotlight. However, I disagreed with his assertion that our children with autism (if non-verbal)had to have their humanity expressed for them by others. They express their humanity simply by being.
Michael Gregg wrote on August 7th, 2007 at 9:08 am:
David, Russell – well done on a fantastic evening at SFBH, and on galvanising Wellington to support the Autism Intervention Trust. Partying is an essential part of the human condition. Personally, I thought Bill English’s speech was stunning and I’d like to see it reproduced here.
Rebecca Williams wrote on August 8th, 2007 at 10:39 am:
great work russell and co. – the best way i know to spread the word is to send the link to primary school teachers i know who can give it to families. thanks so much for this hard work.
Anon. wrote on August 8th, 2007 at 1:28 pm:
Well done and good luck with the project. Just a wee reminder, that ASD is not just for kids. If anything, the difficulties are greater for adults, since one is expected to be autonomous.
Russell Brown wrote on August 8th, 2007 at 2:39 pm:
Well done and good luck with the project. Just a wee reminder, that ASD is not just for kids. If anything, the difficulties are greater for adults, since one is expected to be autonomous.
Absolutely. I’m delighted that our first installment in Stories is from Alyson Bradley, who is AS.
Emma Quigan wrote on August 8th, 2007 at 3:16 pm:
Brilliant work. It’s so nice to see such an informative website related to ASD in New Zealand. Thanks.
Chip Matthews wrote on August 8th, 2007 at 4:44 pm:
Great site! As fantastic as it has been to catch up on your families progress and how it can relate in some part to my nephew and his growing up via your blog, this website is a great resource and one that I will be visiting frequently. Choice work fellas.
Bonnie Ventura wrote on August 9th, 2007 at 1:22 am:
Hi! I just found your site through Autism Diva’s blog. It looks good! I’ve added you to my list of recommended sites on Aspergian Pride.
Gabby Hogg wrote on August 9th, 2007 at 2:37 pm:
Wow I just found your website, it is so cool. Also interesting, we need more web pages from NZ and i’m glad you have made this website. I have got Asperger’s, Dyspraxia, Dyslexia and Global Intellectual Impairment am 19 yrs old and one day I also want to make my own website. I’m also studying social sciences so this is my interest or you could say field, I’m from NZ by the way and I really appreciate your website. So thankyou
Russell Brown wrote on August 11th, 2007 at 2:48 pm:
Hi Gabby. So glad you like the site.
If you felt comfortable doing so, I’d love to run something by you about your life in the Stories section here.
And good luck with the studies!
Alexandra Cooper wrote on July 10th, 2010 at 4:03 am:
Tom Cruise have dyslexia and yet he is still a very successful actor.,;-
Noah Martin wrote on July 19th, 2010 at 2:54 pm:
dyslexia is not that debiliating but it is somewhat limiting to the kind of job that you can get~~,
Gabriel Ellis wrote on October 11th, 2010 at 8:01 pm:
my sister has dyslexia but she can live a very normal life eventhough she can’t read that much`’.
Pine Cupboard %0B wrote on December 13th, 2010 at 6:37 pm:
there are many famous persons with dyslexia and it is not a debilitating disease. Tom Cruise is known to be dyslexic ,*-
Surrogate Mother %0B wrote on January 25th, 2011 at 4:48 am:
.-: I am really thankful to this topic because it really gives useful information .-~
Gabby Hogg wrote on March 18th, 2011 at 10:43 pm:
Hi Russell
Sorry for the late reply. What sort of story would you like to run in the stories section about me.
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You?re on top of the game. Thanks for srahnig.
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