World Autism Awareness Day was on April 2nd. It’s come and gone, and you wouldn’t have known it even existed in New Zealand. I searched the following sites, for either written or video content: NZ Herald, Stuff.co.nz, Scoop.co.nz, as well as TV3 News and TVNZ. Not a single mention. In fact, in performing a search for “autism” on many of those sites, the most recent stories that are sourced, are ones about the shooter in the USA. Which is to say, one of the recent prime examples why we need people to better understand autism – in the face of fear and ignorance – is what comes up instead of any piece promoting autism awareness.
English: Logo of World Autism Awareness Day, April 2, by UN (United Nations). Português: Logo do Dia Mundial de Conscientização do Autismo, 2 de Abril, criado pela ONU (Organizações das Nações Unidas). (Photo credit: Wikipedia)
What a lost opportunity. And frankly, what an embarrassment. But embarrassment for whom..?
I’m going to point a finger at the most well-known autism charity in New Zealand, the very same charity that prides itself on being the “go-to” source for the media for perspectives on autism stories. The same charity whose name appears in the stories and news items and radio interviews from previous years for autism awareness days. So what happened in 2013, and was it just some major anomaly?
I don’t want to be mean to Autism NZ; they’re a charity, right? And god knows I don’t want to alienate myself or my blog from the biggest autism charity in my little country. But here’s what I’ve seen, heard and experienced of Autism NZ, since my son’s diagnosis brought them to my attention:
Autism New Zealand runs a help line. My friend with an autistic child once rung the help line for advice about helping their child, and was told by the person who answered that she wasn’t meant to officially say it but vaccines were the major cause of autism. How many people had this person being “helping” in this way over the years? When I personally sought help from Autism NZ because of struggles I’d been having with a government agency, they promised in person to have a talk to the agency on my behalf, and never did, even when I enquired into progress it was never actioned. There was only one service I ever received from Autism NZ, which was taking part in a preschooler playgroup. Half way through the first term of the playgroup, internal frictions caused the group running the event to splinter off from Autism NZ, so the service was ultimately run and funded by that other charity.
I won’t go into the sordid history of public constitutional disputes that made headlines for months, or the funding lost to other agencies because the government thought other agencies would better provide services to the public than Autism NZ could or had. The details of all that are complex and messy to say the least. There were also cries of foul play over how Autism NZ presented itself and the issues to the media during that time, but that’s to be expected I guess.
But what happened more recently that could have caused Autism NZ to seemingly forget World Autism Awareness Day? Oh no wait, they do mention it on their Facebook page, where they said this, and only this: “Happy World Autism Awareness Day to everyone. Don’t forget to help Awareness by sharing this status and getting people to donate to Autism New Zealand.” That’s right, no substantive message about autism itself, essentially just a self-promoting call for funds. Which is exactly in keeping with the tone of the charity of late:
Last year they went from a voluntary membership donation, to a compulsory membership fee. I was very upset at the new fee and the way it was introduced, and at the time I wrote an extensive post that I never published, entitled: “Autism NZ’s new membership fee; at a cost beyond money?” Wherein I also lamented the lack of publicly available information about how Autism NZ spends its funds, compared to other disability charities which are very open about their expenditure. I am now contemplating whether I should retroactively publish that post. The reason I didn’t at the time was the same reason I was reluctant to write this post: Who wants to be seen as bullying an autism charity? They do so much for people like my son, right? Right..?
Autism NZ did manage one other Facebook comment leading up to World Autism Awareness Day, requesting schools to volunteer to take part in Multicoloured Mayhem Day. Yet I haven’t seen a single story about any schools or businesses that took part in it. Not one. I don’t know of any that did either. I’m sure someone somewhere did, but you wouldn’t know it.
OK, so if their own Facebook page is a bit of a bust, surely they brought it to everyone’s attention on their own website? No. See for yourself. Try to even find mention of World Autism Awareness Day for this year. The most recent news story is about their book sale in December. (I do wonder if the fact that the story before that is “new board members announced” hints at what’s gone wrong?) You know what you will find though? On their “what we do” page, they state their top role is to “Raise awareness of autism spectrum disorders.” Um, oops? (As much hatred as Autism Speaks gets over in the USA, at least they loudly acknowledge that special day of the year.)
I have another issue I want to raise about how Autism NZ has recently conducted itself. It decided to rebrand itself, it had the chance to move away from the puzzle piece so many people in the international autism community find offensive and belittling. The puzzle piece that has led to people pointing out that they are not something to be solved, they are not incomplete, they are not some sort of puzzle. It is very easy to find pieces written about this concern, and its all over Facebook at this time of month too. And yet Autism NZ’s new logo is a green puzzle piece representing a human, within an “A” shape. I don’t understand how they can be so disconnected from these issues and concerns, to intentionally adopt something considered so upsetting by so many in their community?
There are quite a few autism charities and general disability charities here in New Zealand, but Autism NZ carries the highest profile and gets the most media attention for autism issues (at least in the past), so I feel like they need to serve our community well. I feel like the least we can expect from them each year is to grab the headlines on World Autism Awareness Day, when they have the right to make national and local news listen and share a message. A day when autism has an excuse to be celebrated, or at least better understood, instead of only coming up in the context of looters, hackers and murderers (each example should ring a loud bell). I see it as a huge lost opportunity, and I feel let down. I really do. I want to be nice, and understanding, and give the benefit of the doubt, but what happened, what is happening? I know Autism NZ has helped a lot of families (well they keep suggesting they do in their newsletters), but the silence on World Autism Awareness Day was deafening. And so I end on this simple perplexing question:
Where was Autism NZ on World Autism Awareness Day?
Autism & Oughtisms 
I have seen it being promoted by some as World Autism Acceptance Day which I prefer and I agree with all you have written and would guess that the way to change is through the inside, getting on the board maybe. Accountability is very important in any non profit charitable institution.
Absolutely, and yes one day (perhaps when both my kids are older and attending school), I might look into taking up an official position in an autism charity, though I do feel better suited to a writing role when it comes to trying to help raise awareness and understanding of autism.
Be your own spokesperson! New media means we can engage directly with old media via twitter, facebook and text/email. So get out there and start chatting with all the people who publish the news and become the “go to” person whenever they need a quote on Autism.
New media is based on page-rankings, shares, clicks, links and “trending” so they are keen to fill the airwaves or pagespace with topics that get people commenting and engaging. Put yourself out there, be helpful and say yes when they want you. You should also be contacting them and pitching opinion pieces or editorial.
It is the best way to take the old stories out of circulation and get genuine first person experiences into the mainstream.
xx lisa
I so wish I had the time to get involved at that level Lisa, maybe some day! As far as the promotion of Autism Awareness Day goes, I simply don’t have the resources or reach of an established national charity. I did a blog post for the day, because that’s what I do, thankfully that did get shared around for what that’s worth. I do admire your enthusiasm and appreciate the encouragement 🙂
I’m horrified that a representative of Autism NZ said vaccines were the major cause of autism. Immunisation is my specialty area so I know the information is completely wrong. In other areas where they provide advice I wouldn’t know whether they were correct or not.
Now I have to wonder – are they providing credible information that we can rely on or are they a mouthpiece for crackpots?
Well done for making the time to write your blog. I understand how constantly we need to engage with a child with autism just so they can achieve to the best of their ability the ordinary things like playing, eating, toileting, sleeping etc. that peers without autism take for granted. None of the other ‘mum’ jobs go away so they fill the gaps until late in the evening. When finally everything of high priority is done and we sit down – well it’s either bedtime because of the sleep resistant early riser or we fall asleep anyway because we’ve stopped.
Absolutely MissK, and thank you so much for your support and understanding xxx
I have read a lot in the last week(and longer) about the need to shift from ‘awareness’ to ‘action’ and I have to say I tend to agree but that said those blogs/articles were all from an international perspective. Here in NZ I still think that Autism Awareness has a long way to go. And while I think that Autism NZ have a large role to pay in this I think that we as the families and the people directly affected need to be proactive in speaking out and getting involved. I liked the idea of the Multicolored Mayhem Day but I did not approach my school about participating. Did you?
Without our support and action these things will not go far. My son was diagnosed almost four years ago when we lived in Auckland and I did not feel that there was much practical support available from Autism NZ at the time. Since then we have moved to the Waikato and it has been a completely different story. The local branch runs support groups, social skills groups,holiday programmes and more. Now we are needing support with school and they have been amazing, observing my son and coming up with a plan to help us and the school. I think some of your concerns are valid in this post and I think the best way of making changes is to make sure the message gets to the right people. Maybe you could post this on their FB page or send it to them?
Like the popular saying goes “be the change you want to see in the world”.
Hi Dearna, I’ve responded to your identical comment on my facebook page first, so I will cut and paste my response here too:
“Dearna, I think we need to acknowledge that charities exist to represent the concerns of those who often lack the time and resources to do it themselves. In an ideal world I would have all the time to go about doing the basic functions of a National Charity myself. But in this “ideal world” I wouldn’t be working part-time whilst raising two very challenging young children whilst being responsible for running a household and whilst trying to maintain a blog. I do what I can with what skills and resources I have available. I think the least that families like mine can expect from a major autism charity, is that they do the basic function of recognising and promoting major awareness days and events through the avenues and resources they have at their finger-tips. I do understand where you’re coming from, but none of it means Autism NZ had good reason to not perform this basic role.”
Sometimes I feel Autism NZ wished adults with Autism didn’t exist.
A lot of Autistic adults feel the same way Matty